Aside From Cancer I'm Fine

The Terrorists Didn't Ruin My Birthday

2010-05-01T21:36:00.000-07:00

This is an exciting birthday for me. I'm turning 36 which I believe to be an inconsequential birthday. I can already drive, vote, drink and I've already made it into the "35 and above" category. But this year I get to celebrate without being sick. No treatment. No surgery. Nothing bad ahead of me (at least that I'm aware of).

I decide that Boris and I should celebrate in New York. I love it there and we haven't been in an almost 3 years. Our trip will be dictated by food, as all of our trips are. I spend hours researching the best and newest restaurants. I post lists on Chowhound asking for help narrowing down our choices and make Boris and myself 2 reservations per night just to be safe. We also get theater tickets because how can you go to New York and not see a show? We plan our entire Saturday around the show. Pre-theater dinner at 6, post theater dinner at 11. It doesn't leave a ton of time for breakfast, lunch, the Met and Central Park. So we skip breakfast and lunch (gasp!), spend a few hours at the museum and walking though the park, have a light dinner (if a burger can be light) and head off to the theater. As we near Times Square it's so crowded we can barely walk. I assume it's tourists and am instantly annoyed. Boris and I work our way through the crowd but it's so dense we make little headway. We're late and I'm stressed. We finally make it near our theater and notice fire trucks, police cars and a barricade down the street our theater is on. Police officers are yelling at the crowd instructing us to stay on the sidewalk and start clearing the area. "All shows are canceled for now," they yell. A few smart asses, including us, wonder if "for now" means that "sometime later," the show won't be canceled and we don't move. Whispers of a fire rustle through the crowd. Then one onlooker claims that it's a bomb scare. That sounds ridiculous to me and I'm certain she's a republican. After 40 minutes of waiting around and a police officer shouting that all shows are cancelled (no modifier), Boris and I decide we should suck it up and leave.

I'm pissed since our day would have been totally different if we knew we weren't going to a show. I'm complaining as Boris and I leave the theater district. "Sharon, look!" Boris exclaims. "Check out that guy in the Hurt Locker bomb suit." Holy shit. It really was a bomb scare. We decide we'll head back to our apartment for some pre second dinner nookie. Boris asks if I want my present when we get inside. Duh. "I always want presents," I tell him and I'm just so happy that he got me a birthday present without me having to ask! He takes out a pink jewelry box from his suitcase. It's from the designer who made a charm bracelet for me that has the initials of our family on it. Boris gave me a diamond encrusted "M" when Miles was born and a "B" for Baron (after an asshole at my radiologist's office stole the necklace with Baron's initials that Boris gave me when he was born). I'm oblivious as I open to box. It's a blank charm. I smile, still not getting it. "It's pretty," I lamely say. "Should I have written TBD on it?" Boris asks. I start crying realizing that he's giving me a blank charm for our future unborn daughter (we hope!). Besides being the best gift ever ever, it's a huge deal because during our last third baby discussion, Boris told me that he really wasn't sure he wanted a third child. He's still tired and we're so busy with the boys. But he knows that I will be absolutely devastated if we don't at least try to have her and so this gift was also his way of saying that we are going to try to have another baby.

What a difference a few years make. The first birthday Boris and I celebrated together was my 30th. We had been dating about 6 months. Boris told me that his family never really exchanged gifts and that he wasn't very good at it. Major understatement. He told me that his thought for my gift was to do some rewiring in my condo that he knew I needed. I'm totally serious. I had to explain that while playing handyman was very practical and indeed necessary, it's not a gift. It's what a boyfriend should do. A gift to me is tangible. Preferably something I can wear that comes in a small box. A few days before my birthday he did indeed hand me a relatively small box for my birthday. I opened it to find a Roomba. For those of you who don't know what a Roomba is, it's a robotic vacuum cleaner that cleans on its own. Swear. Again, a totally practical gift for me since I want someone to vacuum my house all day long, but not a romantic gift at all. And it was noisy and scared the shit out of my cats (literally) and never made it much past the litter box where it would just turn around and around and around. So he took it back. Ironically, Boris tells me, the makers of Roomba have a military version that disposes of bombs. In the end I received a nice gift certificate from Fresh (at the time my favorite bath line). So a charm for unborn baby girl is a miracle from the man who wanted to rewire my condo and bought me a vacuum.

The terrorists didn't ruin my birthday. 36 was amazing. I feel good and worship my family. Life is good.

I Like Your Boobies

2010-03-05T22:40:00.000-08:00

We're late as usual as Boris turns on the engine and drives toward Cedars. "Why on earth are you taking La Cienega?" I criticize. He gives me a look that says "chill out, don't worry and you get a pass for being a total bitch since you're having surgery." After taking the worst route ever (in my humble opinion) we pull into the parking lot of Cedars. I hop out and let Boris park. When I get to the 5th floor, everyone is waiting for me. A nurse approaches me and asks if I'm Sharon Shimanovsky. I nod yes. "Dr. Slate's first surgery was canceled so he's ready for you now." Yikes. Before surgery can begin, Boris and I are asked to visit the business office to settle the bill. One of the many joys of Cedars and a surgeon who doesn't accept insurance.

I'm shuffled back into the preparation room since everyone is waiting. I hurriedly kiss Boris goodbye and instruct him to go home and play with the boys rather than sit in the waiting room for no reason. I certainly won't know the difference. I'm led to my bed and draw the curtain around me to change into my gown. Before I do, I realize that I forgot to bring the signed booklet which memorializes my acknowledgement of the horrors the implants I'm about to implant into my body may cause. Dr. Slate had wanted it prior to surgery. I run into the waiting room and tell Boris that I forgot the booklet and ask him to wait for the nurse to tell him whether he can bring it to Dr. Slate when I'm out. I change and lay down on the bed. The nurse pulls back the curtain and tells me he's going to take care of me today. He asks a few questions and fills out some paperwork, then disappears.

An older Vietnamese man in a white coat approaches my bed. "I'm Dr. Voung, your anesthesiologist," he says. I like him right away. "Are you allergic to any pain medications?" he asks. I tell him about the horrific experience I had with Dilaudid and Morphine after my mastectomies. "I wanted to scratch my skin off," I tell him. "So I'm pretty sure I'm allergic to those." He talks about some alternatives but also thinks the incredible length of my previous surgery was partly to blame for my reaction. This surgery is a fraction of the length so he thinks that I'll be fine. He takes some notes and pulls up a chair beside my bed. "I'm just going to keep you company until surgery begins," he says. "I see that you were pregnant at your diagnosis." I nod. "I can't imagine how difficult the last year has been for you," he says. "I'm so glad your journey is almost over." Me too. We talk about my boys and he tells me about his children and grandchildren. Then it's time for my I.V. I caution him to be gentle because I hate needles. "Should I use a hammer?" he asks and chuckles. I tell him how last night Miles asked me if the doctor would use a screwdriver for my surgery.

Dr. Slate arrives and before he can say anything I ask him if Boris can bring the implant horror booklet after surgery and apologize for forgetting it. "Not a problem," he says. He sends a nurse to the waiting room to tell Boris. Boris apparently ignored the wait for the nurse part of our conversation and had already left. I call him from the preparation room and ask him a) why the hell he's left and b) that he can bring Dr. Slate the booklet when he picks me up. "You could be visiting with me back here," I tell him. Of course he feels horrible and offers to turn around, but I tell him to go play with the boys and I'll play with Dr. Voung. I hang up the phone and Dr. Slate draws the curtains around us. He pins them together for additional privacy. He slowly opens his metal briefcase just like last time and takes out a dark pen. He starts to mark my chest. "I'm going to lower the left breast (which has risen up and contracted from radiation) and lift the right to make you as even as possible." Sounds like a good plan. We talk about the horrors of silicone and he assures me that it's really not so horrific but the company is just covering its ass. I don't have much of a choice so it doesn't really matter. He tells me that when I wake up, I'll be in an intensive recovery room for about an hour. Then I'll be moved to a second recovery room for anywhere from 1-4 hours depending on how fast I recover.

We're ready to go so Dr. Voung tells me he's going to "relax" me. Dr. Slate says I won't remember anything past this point including our current conversation and he'll see me when I wake up after surgery. I feel totally alert and remark that I will definitely remember this conversation. "Tell me something now and we'll see if you remember," he challenges. I tell him the Miles screwdriver story as they wheel me into the operating room. And the next thing I remember is waking up in the recovery room. I have to pee immediately and call out to a nurse for some help. She hands me a bed pan. Ugh. "I can't do this laying down," I tell her and promptly help myself up. The nurse looks stunned. But I feel totally fine and pee sitting up with no problem.

When Dr. Slate comes to check on me I tell him I'm ready to go home. I also tell him I remember our conversation about Miles and the screwdriver. "Hold on. You have to be able to go to the bathroom and walk first," he says. "I've already sat up and peed," I inform him. "Let me walk," I demand. I think I've been awake for 10 minutes. He also looks stunned. He sends the nurse to the waiting room to get Boris. "I'm ready to go home," I tell Boris as he kisses me on the forehead. Dr. Slate laughs and says I can't leave quite yet but he's going to get me moved to the secondary recovery room as soon as possible. Just a few minutes later Dr. Slate and a nurse are wheeling me up and Boris is walking beside me. I think I ask Dr. Slate 38475 times if I can go home.

A few minutes later Dr. Slate says I can get up. He wants to show me my new breasts and I follow him to a small room with a mirror. He unzips my "special" bra (his term) which is a very tight and very strange jog bra, that I'm to wear for the next 3 days. Now I'm the one who is stunned. He starts explaining what he did and says they're still a little swollen but I interrupt him and ask him to get Boris immediately. "Boris has to see this," I exclaim. My tits are unfuckingbelievable. Seriously. Get the cameras out for a close up. They're perfection. I'm ecstatic. "Aren't they amazing?" I ask Boris when he arrives. He smiles and nods his head up and down. "Now can I go?" I ask Dr. Slate for 38576th time. I can!!! Dr. Slate cautions me to watch for any extreme redness, especially on the left side because it could be a sign of infection and the left is more prone to infection because of radiation. I leave with prophylactic antibiotics.

Boris drives us to my parents' house where the boys are eating dinner. They are so happy to see me! I hear Miles yelling "mommy!!" as I'm walking up the stairs. Apparently he spent all day asking about me and my whereabouts and informing everyone that I was at the hospital. I am so sad to not put Baron to bed. I have put him to bed every night for the longest time and generally, when others try, it doesn't go well. He cries at them. He wants his mommy and I just love it. Our new game and my favorite thing in the world is our kissing game before I put him in his crib. That and he still nuzzles into my neck and sleeps on me for a few minutes before I lay him in his crib. So tender. And sadly not me tonight. Boris goes to put Baron to bed and I play with Miles. It's of course, the first time ever in the history of our lives when I announce that I'm going to leave the room so he can snuggle with daddy and he responds, "stay mom, I want to snuggle with you." I die of happiness.

Boris and I go home to eat and sleep. I'm exhausted. I take a look at my new boobs before bed and notice a small dent on the left side. Boris and I hypothesize that it's from the "special" bra but it can't be that clothing can dent my boobs! Boris asks me what he can say besides 1) he doesn't care what they look like and 2) anything can be fixed, that will make me feel better. Hmmm...

Despite my exhaustion, I can't sleep at all. I don't know why and I'm pretty pissed off about it. Surely I wasn't given anything that would keep me up. But I watch each hour roll by for 12 hours. At 630am I can't take it anymore and finally get up. Boris is up, too. I unzip my bra to have another look. The dent is still there and the left side is red. Not flaming red, but redder than yesterday and much more red than the right side. I don't know if it's "extremely red" or not but I'm concerned. I page Dr. Slate's office around 730 and then get dressed. Boris and I will go to breakfast and the farmer's market before getting the boys. Because that's what normal people do less than 24 hours after surgery. Right?

Dr. Slate returns my page an hour later. I tell him that my left breast is pretty red and that it has a dent in it on the side. "A dent?" he repeats. "I don't understand what that means." I try explaining to no avail. He says I should come in. He beats me to his office, of course. I don't know why I'm never on time for him. He insists that we go in to a proper exam room even though the lobby is completely empty and I have no problem exposing myself there. I unzip my bra and he takes a look. "It's red, but not too red," he says. "I think the bra is too tight so stop wearing it. Just wear a jog bra." I show him the dent. He hypothesizes that the implant doesn't fill the "defect" as he calls it the same way the expander did. "The implants are smaller than the expanders so there may just be some extra room." Nice. They're still pretty perfect and amazing even with the dent. Minus the 2 searing scars slashing through each breast, you might even be jealous.

I take a few pain killers each day but really am not too uncomfortable. I've been pretty good about not picking up the boys even though I swear I'm perfectly capable of it. In the morning when we wake up, we get a call from friends who have decided last minute to drive up to the snow. Miles went through a brief period where he asked to go the snow every day. Boris and I couldn't get it together and decide that this is probably our last chance before the snow melts. "What the hell?" I think and tell Boris that we should go. "Really?" he questions. "Are you sure you're up for it?" Maybe I'm too medicated but I think I am. We borrow some snow clothes for Miles and pack 100 layers for Baron and pile into the car. It's our first long drive together but we all do fine and in a little over an hour, see large patches of snow on the ground. We pull over where we see kids sledding. Miles is ecstatic and fearless and bolts out of the car. Sloshing though the snow he's yelling "it's cold! Mom! Come here! It's snow!" Baron and I are less enthusiastic. Without proper attire, snow is freezing. And wet. When Boris sits Baron down in the snow, he looks up at us with a look that says "are you fucking crazy? Pick me up immediately." He actually screams that part. I'm pretty miserable and realize I actually hurt a little so against doctor's orders, I pick Baron up and he and I play in the warm car.

We get home in time for dinner. I'm getting the bath ready for the boys when Miles wanders into the bedroom. He's talking to his monkey blanket (affectionately referred to as "mono" - monkey in Spanish) which he often does. He tells mono everything. Today he says "mono, I don't have cancer." I almost yell that it's true, he doesn't. He doesn't. "Neither does mommy, mono," I add. I can't put Baron to bed (aarrrggghhh) so Miles and I go into his room to read and snuggle. Miles is leaning against my chest. He lifts his little head up and says "mommy, you should go back to the hospital." I ask him why. "So the doctor can fix you with a screwdriver." "The doctor has already fixed me, Miles," I say. "No, mommy. Tell the doctor to make your boobies softer." Nice. "This is as soft as they're getting," I tell him. "Oh," he laments. I can't believe I'm having this discussion with my 2.5 year old.

It gets even better the next day at the park. I had told Miles that for the next few weeks I couldn't pick him up. "We can snuggle and read and laugh and dance, but we have to be gentle with my body." He runs over to the swing set, Baron takes 2 steps in suit then crawls the rest of the way. They're both waiting patiently in front of a swing. "Who will pick me up?" Miles asks. I ask one of the nannies who of course obliges. I think it's not so bad. My mom meets me at the park to stroll the boys home. Miles is jumping on his bed like a maniac and I'm washing Baron's hands. He often jumps on his bed, or mine like a maniac, and we discuss whether his body "feels safe" and as long as it does, he's free to jump. This time he falls backwards out of his bed and my housekeeper makes it into his room before me. He is screeching at the top of his lungs. I run into his room and he whimpers "um, mom, will you still help me if I hurt myself?" I almost cry as I tell him that no ouchie will ever stop me from helping him if he needs me.

We snuggle in silence for a long time. Miles strokes my arm and plays with my hair. "I like your face, mom," he says. "I like your face, too, Miles," I respond. "I like your hair." "I like your hair, too." He goes on to tell me that he likes my shirt, my necklace, my mole and even says "oh, I like these buttons, they're so cute." Swear. He's since told me that my ring is "gorgeous." Swear. Then he looks me in the eye. "I like your new boobies mom," he decides. Me too.

Angels & Demons

2010-03-03T22:02:00.000-08:00

My exchange surgery is scheduled for Friday. Today I have my pre-op appointment with Dr. McAndrew. The nurse takes my blood as usual and I amazingly don't wait too long for the doctor. She and I discuss how I've been feeling and my blood results (all normal). She asks when I'm having my exchange surgery and I tell her it's Friday and this is supposed to be my pre-op appointment. She fills out the necessary paperwork and within no time I'm driving home. Her office calls while I'm in the car. It's Claudia, her nurse. "Sharon, you didn't see me on your way out," she says. I respond that I didn't know I was supposed to. "We didn't know this was your pre-op appointment and we have to draw more blood. Please come back before Friday." Fuck. So annoying. I hate having my blood drawn and twice in one week sucks. I'm not sure why it's so hard for my doctors to speak to each other.

I get home to a very tired, but not sleeping house. Miles, at age 2, has decided he doesn't need to nap anymore. Only, he really does for us to be sane. He's screaming that his nap is over, he doesn't want to rest, his lips are dry and he needs Aquaphor, he has to go to the potty and anything else he can think of that might get me to come into the room. It doesn't work, but he does wake Baron up who will now want to go to bed at 5. I really would have thought that cancer would have made me less of a sleep nazi, but no such luck. Lack of sleep still makes me want to cry. The only upside is that both boys are asleep by 630.

Boris and I spend part of the night reading a booklet by the manufacturer of my soon to be new implants. I have to acknowledge reading it. It's full of all of the downsides and diseases the implants "may" cause. Leaking silicone is just the tip of the iceberg. Apparently, women with silicone implants are not only at an increased risk of suicide (although I personally think it's because depressed women get implants to feel better and then end up still being depressed just with bigger boobs), but are also at an increased risk of getting just about every cancer on earth. Fucking fabulous. I read the list of horrors to Boris. "Oh good," I tell him "I'm also at an increased risk for getting brain cancer, lymphoma and leukemia. The booklet says they have no idea what the correlation is. Seriously. Read this." He smiles and tells me I'll be fine as he reads the booklet. I really have no choice so I guess I should get over it.

I question Dr. Slate for the 245th time about my new implants. I remind him to make my boobs as small as possible and ask (again) how long I have to wait before picking up the boys. "One month," he says. I don't know why I ask because I'm not going to listen. There's no way I'm not lifting them for that long. One week, maybe.

The next 2 days go on as usual. I spend almost every second with the boys. There's virtually no down time between their naps, or in Miles' case, non-naps. Lately Baron has been more angelic than usual. His latest and I think greatest baby trick is that when I ask him for a kiss he leans in and lays his perfectly pouty lips on mine. Maybe it's just because sans naps, Miles is sort of the devil, but seriously Baron sleeps like a champ, is happy all the time and worships me. The night before my surgery however, the angel has left the room and Baron, whose nap was ended prematurely by a screaming Miles, is delirious and yelling his brains out. Miles once again turns into me and says "what can we do to make Baron feel better? Maybe he wants a toy?" I think about how much I worship him.

It's not surprising that Baron is so feisty. He is my son and he is a warrior. In the moments when I think Miles is challenging I try to take a deep breath because I just know it's nothing compared to what I'm in store for with my sweet miracle warrior. Sweet until he's pissed off or doesn't get what he wants and then watch the fuck out. Like mother like son, I suppose. The good news is that I love the feisty except when he's screaming at me. At lunch today he was happily eating until I made the mistake of getting a chocolate covered almond from a shelf in front of him. He immediately stopped eating and started screaming at me. I held out my empty hand and told him I had eaten the almond and it was all gone. He pointed to the box of almonds in front of him and screamed until I gave him part of one. It's amazing how he can tell me exactly what he wants and doesn't want even though he can't talk. At the moment he's telling me he needs sleep. Immediately.

After I put him to bed, Miles and I go into his room to read. He's waiting for Boris to come home from work to put him to bed but I ask if we can snuggle while we're waiting. "Why?" he asks (he asks "why" about 93837462 times a day). "Because I'm having surgery tomorrow and then won't be able to pick you up for a few days since I'll have an ouchie," I explain. "Because you have cancer?" he asks. I reassure him that "I don't have it anymore. My old boobies had cancer so the doctors took them away to make me better." He thinks about this for a minute. Then he asks, "does Daddy have cancer? Can I see the cancer?" I want to die as I explain that only I had cancer and that he can't see it. I reiterate that I do not have it anymore and that I'm feeling great and will be fine. He asks if I'm going to the hospital and I tell him I am but just for a little while and will be home to have dinner with him. "Why are you going to the hospital?" he asks. I explain "the doctors are going to fix my new boobies to make them softer." "With a screwdriver?" I smile and tell him that the doctor does use special tools kindof like a screwdriver.

I'm looking forward to being more comfortable with "soft boobies" and am overjoyed that this is my last surgery (I hope!). I've been told by my cancer friends that the surgery is nothing and I'll be up and running in no time. I have no doubt.

These Have Cancer, Take Them Away

2010-02-02T22:03:00.000-08:00

Not 3 days after I find out my hormones are back to normal, Laura visits. For real. Who knew a 35 year old would be so excited about getting her period?? It doesn't mean I can have another baby because chemo affects the viability of eggs, but at least it's a start. I've never been a believer in PMS (controversial, I know, but there are entire societies of women who exhibit no signs of it and my opinion is that it's cultural, but I digress) but have heard that acupuncture is good for any symptoms so I take the opportunity to schedule an appointment with Jacob Traners (name changed to protect me from a defamation lawsuit even though it's all true!), the acupuncturist who does massage that Dr. McAndrew recommended. The tightness on my left side bothers me 24 hours a day so I'm curious to see if whatever he does makes a difference.

Jacob Traners' office is small but quaint. I hear the cliche sounds of a water feature trickling away in the background. I sit down to wait but before my bottom hits the seat a man in his 40s enters the waiting room and introduces himself. "Come in," he says as he points me towards another door. The trickling water sounds continue in the private room and some chimes softly clang away. I want to laugh but don't. Jacob, or Traners, as he calls himself for some strange reason, sits down next to me with a clipboard in his hand. He looks up. "Wow," he says. I smile but am totally creeped out. I'm not sure if it's "wow, you're so young, or wow you're cute," or what. But it's creepy. He tells me that his wife had breast cancer and that his 8 year old daughter knows terms that most children don't. I nod my head in agreement. A few days ago, Boris was putting Miles down for his nap and left his room with a perplexed look on his face and a chuckle. "What happened?" I asked. "Miles just stuffed 2 monos (his monkey loveys) up his shirt then yanked them out saying 'I have cancer, take these away,'" he said. I wasn't sure if I should laugh or cry.

I lay down on the table and he begins to massage my feet and legs. He explains that even though he's going to primarily work on breaking up the scar tissue in my left breast, it's important to do some work on the entire body. Sounds good to me. Only sadly, it's not. It's clumsy and untrained and when he massages my neck I have to tell him he's ripping my hair out. Who fucks up a neck and foot massage? The massage to my breast is pretty excruciating but tolerable. He repeatedly asks if he's hurting me or if anything is too firm but I remind him that I've had chemo and a double mastectomy. I'm basically super woman. He comments that expanders are the last modern form of medieval torture and I couldn't agree more.

When he's finished, it's hard to even tell whether my left side has better range of motion or feels better at all. He asks me what part felt best. "None of it felt good," I respond. He looks a little surprised so I continue "I wasn't expecting it to feel good." He tells me that I should come once a week until my exchange surgery and that I should come post surgery as soon as the area can be touched. I want to feel less tightness and certainly want to prevent my implants from hardening once they're in, but I never want to see Jacob, excuse me, Traners, again.

He calls me a few times after my session to ask how I'm feeling and whether I experienced any pain as a result of the massage. I don't call him back. I do however tell Ashely (my trainer) about his weirdness. "Lay down and give me your boob," she says. She starts massaging. "Is this what he did?" she asks? It is. Traners finally sends an email checking up on me and at the end of it he writes "when asking if there was any part of the session that you enjoyed and you answered that no part of the work felt good. I was touched by that." Um, what? Creepy. Thank goodness I can have Ashley take over a few times a week. The other people at the gym give us some pretty interesting looks, but whatever. It seems to relieve the tightness slightly.

A few days later I have a routine appointment with Dr. Botnick. I show him how the left breast has risen up and is much tighter and firmer than the right. As usual, he's friendly but flippant. "It's not that hard," he says. I'm sure he's felt worse but it's in my body and to me, it feels really fucking hard. And it just hurts all the time and I'm constantly try to stretch out the left side of my body because it feels so tight. "I'm afraid it's just going to get worse once I have my implants in," I tell him. As usual he tells me it will all be fine and that I'm beautiful and that the goal is to be alive. So true, except if I'm going to be alive I'd like to not be in pain all the time. Plus, I want cute boobs. Too much to ask for? Dr. Botnick says that there's no evidence that massaging the breast does anything to prevent contracture. There is apparently a drug that thins the blood and might help prevent scar tissue from building up. No guarantees of course and I don't really want to be on drugs (especially ones that might not do anything for me).

So for now, I'll just have to wait and see what my body does to the implants once they're in. Just a few more weeks of the modern medieval torture that I've been living with for the past 6 months. And hopefully this is my last surgery until my c-section with baby girl (still working on convincing Boris that we should have her)!

Just Say Node

2009-12-17T22:02:00.000-08:00

It's Hanukkah which makes the Atkins diet I have to eat the day before my scans even more annoying. It's hard enough having to avoid all carbohydrates, starchy vegetables and beans, but to have to avoid latkes sucks. Granted, latkes really aren't part of the anti-cancer diet, but still. My second round of PET/CT scans are scheduled for 8:30 in the morning. This time I'm prepared. I've told Miles that I'm going to have some tests in the morning and the doctor will give me strong medicine that's not healthy to be around so I will have to stay away all day. He asks a lot of questions and wants to know what "radioactive" means. Oy.

I wake up in the morning and can't eat breakfast, which I hate. I always eat breakfast. I'm hungry but the faster I get the scans over with the sooner I can eat and see my kids. I spend as much time as I can with both boys and then get into my car. I wait for 20 minutes in Tower's waiting room before Jose comes to take my blood and start my i.v. This time there's no pain as he inserts the needle into the crook of my arm. My glucose levels look good so I'm lead down the hall to the imaging wing. The heavy lead doors close behind me and I sit and wait some more. It's finally my turn.

The nurse asks me what flavor glucose drink I'd like. I didn't drink it last time because of my nausea (and I'm assuming the fear that it would make it even worse because it's disgusting ). I ask her what flavor is least offensive. "Orange," she replies. Orange it is. We sit down at a small table outside of the imaging room. She opens a refrigerator and takes out a metal box that says "danger" on it. Inside is a vile of neon fluid. I was so nauseous during my last scans that I must have had my eyes closed the entire time. Otherwise, I surely would have noticed and internally commented on the fact that I'm about to be injected with a substance so dangerous it has to be housed in lead and clearly marked as such. The nurse slowly pushes the neon fluid into my i.v. Then she shows me to the room where I'm to sit as motionless as possible for the next hour. She reminds me not to talk on the phone or text but does hand me the remote control. I never watch television during the day and I have no idea what I'm watching. I'm freezing (a side effect of low blood sugar) and she continues to layer warm blankets on me. After about 40 minutes the nurse comes back in with my orange drink. I have to chug down 1.5 bottles. It's fucking vile but I plug my nose and drink as fast as I can. Then she tells me "to empty my bladder" and come in to the imaging room.

I lay down on the giant machine as another nurse explains the scans and how they work. She also wants to talk about how great my hair is and how much she loved having short hair. It's long now and I just bite my tongue instead of asking her why she doesn 't chop hers off if she loves it so much. The scans last about 40 minutes. It's uncomfortable lying in the same position for so long but otherwise not so bad. When I'm done I leave a message for Dr. McAndrew asking her to call me as soon as she has any results. Last time I had results the same day. I leave and spend the day avoiding my house and my children. I work, work out and lunch. I'm home by 5 just in time to play with the boys for a few minutes before dinner. I've only been gone most of 1 day but I missed them so much it's crazy. I still haven't heard anything from Dr. McAndrew so I call and leave a second message. I keep my phone by my side while I sit with the boys as they eat. I don't want to freak out that I haven't heard from her but I can't help but wonder whether a bad scan is like cancer. Your doctor makes you come in to hear bad news but would have called if there was nothing to worry about. So I worry most of the night. My appointment to get results is scheduled for tomorrow afternoon.

The next day, per my new fabulous arrangement with Claudia, Dr. McAndrew's nurse, she calls me when Dr. McAndrew has 1 patient ahead of me. Baron has just woken up from his nap and Miles is still sleeping. I wish I didn't have to leave Baron! I'm listening to NPR as I drive to Tower. A reporter is interviewing a woman who has had what sounds like a zillion different cancers. The piece is apparently about how CT scans increase the risk of cancer. One study states that 1-250 women will get a new cancer as a direct result of a scan. Fucking great. I'll have to add this story to the already lengthy list of questions I have for Dr. McAndrew.

Even though there's only 1 patient ahead of me, I still wait for an hour. Dr. McAndrew does pop her head in briefly to say my scans are clear. Clear! But when she comes in to my room to go through the results in detail it seems that we have different opinions about the meaning of "clear." I think it means clear, as in there's nothing on my scans. Period. She tells me that they're clear even though there's a node on my lung. Huh? A node on my lung? What the fuck? She tells me that she's not worried because the node is located on the outside of my lung in the field of radiation and she often sees scarring from radiation appear this way on scans. No offense - but the last time a doctor told me not to worry because the lump in my breast didn't look like cancer, it was fucking cancer. So I'm not feeling good.

On a happier note, she goes through my blood tests and I'm out of menopause. My hormone levels have returned to normal. Hooray!

And then I unleash the onslaught of questions like I do every time I see her. I had no idea I'd have a fucking node on my lung to ask 9487529 questions about. I ask about the CT scan scandal at Cedars (she quickly corrects me and states that the scandal includes many other hospitals as well and that it most likely is the manufacturer's fault). Regardless, I didn't have the scan at issue. Phew. But she agrees with the cited study on NPR that scans pose a risk for developing new cancers, particularly in young women who are likely to have more scans over their lifetime. And the only way for me to know whether the node on my lung is just scarring from radiation or metastatic disease is to have another scan that may give me a new cancer if I'm alive in several years. What a great position to be in. Her suggestion is that I have a limited scan in 4-6 months without contrast dye to minimize the radiation. If the node is the same size, it's scarring. If it's grown...not so much.

Before I leave, she examines my breasts and comments on how hard and uncomfortable the left one must me (thanks to radiation). She gives me a card for an acupuncturist who also does massage. His wife had breast cancer and complained most about the pain her expanders caused her. He learned to break up scar tissue to relieve some of the pressure and pain and many of Dr. McAndrew's patients swear he's helped them. I'll call in the morning.

I've been at Tower for so long that when I get home the boys are eating dinner. Miles jumps up and hugs me. "I missed you mommy," he says repeatedly. Baron flashes me his amazing smile and tries to climb out of his highchair (one of his new and frightening feats). I want to cry. I don't want metastatic breast cancer of the lungs and death. I put both boys to bed without incident and sit down with Boris who just got home. I start to tell him about my appointment when Miles starts yelling "I need more snuggling, mommy! More snuggling!" I can't resist. I scoop him up in my arms, hold him tight and cry quietly. All I can think about is what if my time with him and Baron is limited? I snuggle with him until he asks to go back into his crib.

I cry most of the night.

I call Dr. McAndrew in the morning and leave her a message. I say something to the effect of "how do I know I'm not going to die and how do I live for the next few months with a node on my lung?" My phone rings around 5:00p.m. It's Dr. McAndrew . I answer the phone and she says "I'm calling to talk you down from the ceiling." We talk for 30 minutes mostly discussing everything we discussed yesterday. She really, truly, honestly isn't worried. I still am but there's really, truly, honestly nothing I can do so I kindof have to get over it. I call Dr. Botnick as well and he's also not worried (although he never seems to be worried about anything).

Over the next few days Boris and I discuss and decide that I'm not going to get re-tested in a few months. What's the point? If the node is metastatic disease, I'm going to die regardless of whether I have a scan or not. If it's not, I'd rather not increase my chances of a new cancer down the road.

Noisy to Baron

2009-11-23T20:59:00.000-08:00

Of late, Miles is obsessed with firefighters. It all started when my aunt bought him a book about firefighters for his birthday. We read the book several times a day for weeks. We still read the book often. And now we dress up like the firefighters and put out "fires" all over the house. Miles runs around with a plastic ax yelling "Mattie (our cat), I'm rescuing you from the fire! The fire is really, really dangerous because it's really, really hot!" Other times he rescues Baron or Boris or me. One night before bed Miles and I read the firefighter book and I ask Miles if he'd like to visit the fire station in the morning. His eyes widen. "I want to go now!" he yells. "The firefighters are sleeping now, Miles," I tell him. "But we can go in the morning when they're awake." "Do they have an ax?" Miles wants to know. I tell him that he can ask the firefighters tomorrow. He has other questions for them like "what color is their bed, what did they eat for dinner, where do they sleep, do they have a fire hydrant, and do they have a kitchen."

I wake up in the morning and discover that Laura may have visited. I won't know for sure until I get my hormone levels tested and this time I'm not getting my hopes up. Miles wakes up yelling "I want to go to the firefighters!" I wait until it's an acceptable hour and call the station. We're free to come. Miles is ecstatic. Firefighter Doug greets us and amazingly spends an hour indulging Miles. He answers every question (including "do you pee on a potty?") and opens every door, drawer and compartment Miles asks about. We also meet a paramedic, watch an ambulance respond to a call and a slew of firefighters stock their truck. Miles is beside himself with excitement. After an hour I convince him that firefighter Doug has to go put out fires and we leave. At lunch with Baron, Miles recounts his morning. He asks me what sounds like "are you noisy to Baron?" I'm not sure what he's talking about so I ask if he's remembering when the ambulance siren turned on and it was really noisy. "No," Miles says and repeats what sounds like "are you noisy to Baron?" "I'm so sorry monkey, but I'm not sure what you're asking me," I say. "Are you giving Baron food from your body?" Miles asks. I'm momentarily stunned that a) he's asking me if I'm nursing Baron, b) he knows what nursing is and c) he can define a word when I don't understand him. "Are you asking me if I'm nursing Baron, Miles?" I ask. He nods. I tell him that I nursed Baron when he was very little. And I tell him that I nursed him when he was a baby. And I tell him that my new boobies don't make milk so I can't nurse Baron anymore and that makes me really sad. "Do you want to nurse me?" he asks. I smile. "I would love to Miles but my new boobies can't make milk. He thinks for a minute and then asks "do you want food from my body?" I smile again and respond "yes, Miles. I would love that." He seems satisfied and goes on eating and telling Baron about his adventures with firefighter Doug and paramedic Trevor.

I ask Miles how he knows what nursing is and he says "from the book where daddy and Miles make a salad." I think for a minute and realize what he's talking about. Before Baron was born, Boris and I would read a book to Miles about bringing a new baby home. The book has no words, just pictures. In one of the pictures, the mommy is nursing the new baby while the older son and daddy cook. The picture has lots of vegetables, which Miles apparently thinks is salad. I just worship him.

I get up to make a bottle for Baron. I'm so sad I can't nurse him. I am so thankful though that I have amazing women in my life who are fortunate to be nursing their little ones and who provide Baron with enough breast milk for almost all of his bottles.

The next day I have my round 2 appointment with Dr. Karlan. Miles wants to come even though I tell him the doctor doesn't have candy. We're right on time. The doctor isn't. Even though I'm shuffled off to a room right away, I still wait 45 minutes. If Miles wasn't with me I would have gone ballistic. Instead, I read "Green Eggs and Ham"to Miles 42 times. When he's about to go ballistic, I open the door so we can take a walk down the hallway. Dr. Karlan is outside. "We're going to take a walk since we've been waiting 45 minutes and our tolerance has run out," I say. "Has anyone come in to talk to you yet?" she asks. I shake my head no. "Would you like a blue balloon?" she asks Miles. "I want it!" he responds. Dr. Karlan asks one of her attendees to get Miles a balloon. She introduces herself and follows us back into our room. She says she needs some information to update my file. I'm asked the same annoying questions I get asked every time I see a doctor. I don't understand why I have to answer each time, but whatever. I try to be civil so Miles doesn't think I'm a raging bitch. I do however, tell the attendee that I'm a new patient of Dr. Karlan's and don't know how she operates. "Is it normal that she doesn't call with results from ultrasounds? I'm just wondering what to expect," I say. "Oh. You didn't receive your results?" she asks. "Nope," I answer. And continue "I called and asked Dr. Karlan to call me with results, but she never called. Again, just wondering if she doesn't call people back or if I don't get test results or what." She's not sure what to say so she gives some lame explanation about how she's the attendee and can't really answer that.

Dr. Karlan walks in during the explanation and says that my results are normal. "You did have that cyst on your left ovary but it's common during the menstrual cycle." I haven't had my period in over a year and have no idea what cyst she's talking about. I ask her a zillion questions until I'm satisfied that the cyst really is nothing. She wants to draw blood to test my hormone levels to see if they're normal but I refuse and tell her I have scans at Tower in 2 weeks and will have them test me so I only have to suffer through one blood draw. Before she examines me she asks her attendee to blow up the blue balloon for Miles who needs to get out of the examination room asap. The attendee is instantly turned into entertainment for Miles as she starts blowing up a blue balloon (a.k.a. a latex glove) and drawing faces on the fingers. Dr. Karlan examines me and says everything looks good. She apparently sees signs of "estrogenization" which means my ovaries are coming back to life (which explains why most of my menopausal side effects have thankfully subsided).

Miles and I leave as fast as possible. I want to get him to the park asap but he instructs me to park the car in front a construction site across from the hospital. There are several diggers and loaders in action and a parade of dump trucks. We get out of the car to watch. He runs back and forth pointing and shouting "look mom! It's an excavator! Look! It's a loader! Look mom! Do you see it!?" It also must have been trash day for the area because we see 10 garbage trucks drive by. Miles doesn't even know what to do with himself he's so excited. I spend the next 30 minutes watching him have the best time ever.

On the drive home we discuss Thanksgiving. "Will we have a feast?" he asks. Ever since his first meal, Miles is obsessed with food. He'll eat just about anything and seriously has food radar. No matter where he is, if anyone is eating anywhere in the vicinity he races over to them and asks what they are eating usually followed by "can I taste it?" We talk about all the delicious food we'll eat. And I tell him Thanksgiving is a day for us to remember all of the things we have to be thankful for. "I'm thankful for you and Baron and daddy and I'm so thankful that I'm feeling good," I tell him. "What are you thankful for, Miles? What makes you happy?" I ask him. Miles has long think and then carefully responds "food."

The Waiting Game

2009-11-10T21:07:00.000-08:00

It's been almost 7 months since I gave birth to Baron. So it's been almost 7 months since a doctor has seen my ovaries. I have an appointment to see Dr. Karlan, an obgyn oncologist and have a transvaginal ultrasound immediately afterwards. I have an early morning appointment so I can get back to the boys as fast as possible. I get to Cedars on time (a feat!) and check in. I sit as far away from other people as possible. I wait. 10 minutes go by then 15 then 20. After 30 minutes I track down one of Dr. Karlan's nurses and ask how much longer I'm going to have to wait. I inform her that I have an ultrasound scheduled in 30 minutes. She thinks I'll make it but still doesn't have an available room for me. I am so fucking over waiting for doctors. I wait for another 15 minutes and then tell the nurse I have to go. Dr. Karlan is in the hallway. She wants to know if I can come back in the afternoon. I want to cry a little I'm so mad. "No I can't come back in the afternoon," I say. "I'll just come back in 6 months," I tell her. "You really shouldn't wait that long. Make an appointment next week. Come at 8:30. It's my first appointment and there shouldn't be a wait. I was putting out fires all morning." As the nurse walks me through the series of hallways that connect the cancer center to the imaging center I tell her that perhaps an hour wasted for her isn't a big deal but since I spent the past year trying not to die and missing time with my babies, it's a really big deal for me. "It's a big deal and I'm so sorry," she says.

Thankfully I only wait 5 minutes before the ultrasound technician comes to get me. She leads me to the changing room and hands me a gown. I change and lay down on the table. The technician asks if I've had an ultrasound before. I have. She asks how old my kids are and I tell her. She wants to know why I'm having one now. "Because I had cancer," I say. "Ovarian cancer?" she asks. "No. Breast cancer. But I'm BRCA1 positive so the doctors monitor my ovaries every 6 months," I tell her. I can see her doing the math in her head. "I was pregnant when I was diagnosed," I say. She nods and smiles nervously. The ultrasound takes about 45 minutes. The technician says that the doctor will have my results within 24 hours. I get up, get dressed and before I leave, I retrace my steps to the cancer center and find Dr. Karlan. I ask if she can see me before I leave. Sadly she can't. I'm super annoyed. My tolerance level for most things b.c. (before cancer) was pretty slim and p.c. (post cancer) it's non-existent. I rush home to the boys.

2 days later I call Dr. Karlan's office to schedule my round 2 appointment. I tell the woman on the phone that I need the first available 8:30 appointment. We set the appointment for the day before Thanksgiving. I also ask her who I need to speak to to get the results from my ultrasound. They should be ready and no one has called me. Rude. She says she'll have Dr. Karlan call me. She doesn't. As I hang up the phone I hear Miles telling his monkey blanket that he has to have an ultrasound. He also tells my parents, Boris and few strangers that "mommy's having an ultrasound." Part of me wonders if no news is good news? Or like with a pap-smear they'll only call me if something is wrong? Or is it like cancer where they only call you if nothing is wrong and make you come in for in person news that you're fucked?

Since my appointment is only a week away, I decide to just wait. What could happen in a few days? Right?

The First Cut is the Deepest

2009-11-08T21:43:00.000-08:00

I haven't been to a hair salon in over a year. It's sort of nice given how expensive my haircuts are and how long I inevitably wait for my stylist (which if you know what my hair looked like pre-cancer is weird given that my idea of a good haircut is that I don't know its happened). My hair couldn't look worse the day of my first haircut post-cancer. I went to bed the night before with wet hair sans product. I have crazy bed head and it's kindof an afro. Even though I'm scared to cut one hair on my head, I decide that perhaps a cut will make the grow out a little more attractive. I sit in the waiting area across from a woman with shoulder length luxurious hair. I'm so jealous. I wait. A second woman sits down across from me who looks incredibly familiar. She has a buzz cut that's bleached white. She looks up at me and smiles. I assume that everyone with short hair has had cancer and I almost ask her if she's fresh out of chemo. But thankfully my internal sensor reminds me that some women buzz their hair off on purpose and I just smile back. I wait some more. And some more. After almost an hour of waiting I'm over getting a haircut and remember why I hated having to do it in the first place (at least at my salon). I walk past my stylist who clearly has no idea who I am at first and ask his assistant (yes, he has an assistant) how much longer I have to wait.

I'm ushered to the back where I get my hair washed and my head massaged. Heaven! Finally I sit down at the sylist's station. I wait. And I wait some more. And then I get up and ask another stylist how much fucking longer I'm going to be sitting here. "I've been waiting for an hour," I tell him. My stylist doesn't hurry over but smiles as he approaches. "You're hair is cute," he says. "Have fun with it. Put some bows in it. And headbands." I don't even know how to respond. Me with a bow? I picture a bald baby with a bow taped on her head so people know she's a girl. He starts snipping. He knows I want my hair to get long as soon as humanly possible so the trim takes about 2 minutes. He does thin it out quite a bit since it's so thick. He blows it straight and styles it so that I have tiny bangs.

When I get home I'm greeted by Baron and pick him up. He stares at my forehead and smiles. He smiles at my bangs all afternoon. I'm a little less afro-ish, so that's good. The stylist tells me to stay away until I hate my hair and can't take it anymore. Sometimes I think I feel like that every day, but I know what he means. In the meantime, I try to find products that work for my new do. My old products...not so much. I've found that Boris' hair wax on a stick works best. A little scary that my husband and I now use the same deodorant and hair products, but whatever.

It's certainly better than the alternative.

Scaring My Ears

2009-11-02T23:52:00.000-08:00

The doctor's appointments are waning. Now that I feel mostly normal, they're more of an annoyance. I have my first follow-up appointment with Dr. Botnick. My left breast, armpit and part of my back are still flaming red and painful. My left breast has definitely risen up slightly. It's not just me being crazy. Dr. Botnick confirms it. He reminds me that natural breasts are not totally even and the difference in mine isn't detectable to the human eye. Except mine, which is really the only eye that matters. I tell him I'm nervous it will only get worse when I get my final implants, but he says it won't. He thinks everything will always be fine though so I make an appointment to see Dr. Slate.

Dr. Slate has moved offices and so I have to wait longer than usual as his staff is learning the necessary procedures at the Breast Center. I had forgotten how annoying it is to be asked a slew of redundant and irrelevant questions about my medical history. But I answer them and then am led to an examination room. Dr. Slate gives me a big hug before opening up my gown. "Does the left one look a lot higher than the right?" I ask him. He pauses and then responds "I just can't get the past the color, so give me a minute." Nice. He agrees that the left breast is "slightly" higher but assures me that he can make them even during my final implant surgery. Sadly though, the fix comes from making the right side higher so I'll look even more fake than I already do. Sigh.

I notice the fakeness most when I'm exercising, which thankfully I've started doing a lot. I bounce on trampolines and run on treadmills and the boobs don't move at all. Very bizarre. I want to wear a t-shirt that says "not by choice," on it so that people don't think I'm like every other plastic L.A. girl out there. I also start working out with the most amazing trainer (Ashley Borden) who is just a goddess. She has me lifting weights and doing push ups and swears that someday soon I'll do a pull up. It feels so good to use my body again, particularly my arms, and start getting back in shape. It's often incredibly uncomfortable thanks to the rock hard expanders I'm still sporting, but it's worth it.

In the midst of feeling good, I get a bill from Dr. Phillips' office. When I spoke to his financial coordinator (or whatever the hell she's called), Valerie, after being informed a few weeks prior to surgery that he didn't accept any insurance, Valerie assured me of Dr. Phillips' fee and that I was paying in full prior to surgery so I'm super confused. And pissed. I speak to Valerie who assures me I won't get another bill. Phew. But I do. I'm livid. I go back and forth speaking to Valerie and others in Dr. Phillips' billing department trying to figure out what the fuck is going on. I'm told that there was an error (euphemistically called a "misunderstanding,") and I owe Dr. Phillips a shitload of money. When one woman in the billing office tells me she'll speak to the powers at be and let me know how to proceed, I respond "let me tell you how I will proceed. I am an incredibly sympathetic plaintiff. I'm young, cute, recently bald and pregnant, informed 2 weeks before massive, life changing surgery that my doctor doesn't take insurance, induced by one of his staff members to use him based on his fee and then hit up for money I never knew about or consented to." Silence. And then a message from yet another person in the billing department informing me that my balance is zero. At last!

Good thing that Boris and I are on our way to San Francisco for a fuck cancer celebration weekend. We have planned our weekend around eating at restaurants I've been wanting to try - most of them serving cancer inducing foods. In our very chic hotel room (thank you Debbie) the first thing we see is a big card in the sitting area that says "fuck cancer." I can't believe anyone got the hotel staff to write that. It's a beautiful and touching card, accompanied by champagne, chocolate covered strawberries and a cheese plate (hurray!) from Nitasha and Kulmeet and Rachel, another good friend who lives in San Francisco. Such a great start to the weekend which was wonderful. Boris and I did spend half the trip missing the boys, but we had a great time.

We return to shocking news. One of my pregnant with cancer friends who finished chemo about a year ago has a recurrence. She needs more surgery and possibly more chemo. I want to die for her. And I'm terrified for me, too. Selfish, I know, but I can't help it. I know that triple negative tumors (which she also had) have such a high recurrence rate, but never really think it's coming back. We've all suffered enough. And I know that I'm not her and that just because she has a recurrence doesn't mean that I'm going to, but I'm terrified nonetheless. Just another reminder that I have many, many years to get through before I'm truly done with this shit.

We also happily return to our boys who are so insanely cute and amazing it's mind boggling. My baby Baron is already standing up and trying to walk. What!? He's gifted for sure. He spends a good portion of his day pulling up on anything he can get his hands on (including me) and then swaying back and forth occasionally moving a foot in the process. He smiles and drools and claps with excitement. And I want to write a book called "Amazing Things Miles Says," because he is just...well, amazing. As I'm putting him to bed one night we sit snuggled up on his chair. I kiss his arms and head and he says "don't kiss me, mom (sadly, I'm no longer mommy). I'll kiss you." And he dots my arm and face with tiny kisses. I tell him that I love it when he kisses me and he smiles. I kiss him again and he says "I love you kissing me, mom." I melt. Recently while listening to the radio in the car, he said "change the song, mom. It's scaring my ears."

I wish I could just change the channel when I hear something that scares my ears. Like recurrences and shitty statistics. Instead I listen to the louder and beautiful sounds of my boys and my internal voice that doesn't believe this could ever happen again.

Laura's Not Visiting

2009-10-22T20:05:00.000-07:00

Candace Silverman was my best friend in the 7th grade. It didn't take long before we spent tons of time together. So much time that soon we were on the same menstrual cycle. Candace liked to have code words and phrases for everything and so she decided that when we got our periods we should say "Laura's visiting." Random. And no one knew what the hell we were talking about so we thought we were brilliant. Laura's visits were always a nuisance. I was crampy and uncomfortable and am pretty sure I said things like "I can't wait for menopause." And so I find it ironic that now I am ecstatic that Laura may be visiting.

I wake up feeling crampy and am overjoyed when I notice some spotting. I call Dr. McAndrew immediately and ask her how I'll know whether it's my period or not. And I tell Boris that if it is my period, I'm having eggs harvested tomorrow. "Let's just take things one step at a time," he says. Dr. McAndrew tells me the only way to know whether the spotting is actually a period is to have my hormone levels tested (i.e., a blood draw). I sprint to her office and willingly extend my vein to the nurse. "How soon will you have results?" I ask. I'm told that I can call the nurse tomorrow.

Exactly 24 hours later I excitedly call the nurse. My spotting has pretty much stopped, but I'm still happy and confident. Until she reads me my results. The numbers are better than the previous time they were checked, but I'm still menopausal. Fuck. I know it's only been 3 months since my last chemo treatment and most women's periods come back within 6 months to a year, but still. I've already made it through the worst of menopause. Hot flashes every second, bitchiness (more than normal), zero sex drive and just generally feeling like an old woman. But I want Laura to visit. Now.

Just before my next appointment with Dr. McAndrew I start spotting again. It's been 3 weeks since Laura didn't visit. Since my hormone levels were tested so recently the nurse doesn't check them again. After waiting an hour (so annoying!) I tell Dr. McAndrew that I'm spotting again (I also tell her nurse that I can't wait hours each time I come to the office so from now on, I'm going to call her and she'll tell me how late Dr. McAndrew is running and when I should actually come in). Dr. McAndrew says the spotting is a good sign and that hormone levels can change so fast. She says that the spotting may be my ovaries waking up, but to give my body time to heal, rebuild and regain strength. "You're barely 4 months out from chemo," she says. "Many people still suffer from chemo side effects after 4 months." I probably am too (in fact my eyelashes which were finally long and thick recently broke off and are growing back. Again.). We schedule my next round of Zometa and she tells me again that as I'm getting closer to being able to get pregnant with my daughter (she swears my period will come back), I'll stop getting Zometa. She says there shouldn't be any issues with with having Zometa in my system. I hope. And we schedule my next round of scans. Generally, she likes to wait 9-12 months between scans to avoid too much radiation, but when I tell her how terrified of a recurrence I am (who isn't!?), she says that we should schedule my scans in December, which is 9 months from last set of scans.

Baron will be 9 months old then. I don't know where the time has gone. He's already standing up and trying to walk and saying "dadadada." Rude. I just smile at him and say "mamama."

So for now I wait for scans. And a report that they're clear. And I wait and hope that Laura will visit soon.

5 1/2 Weeks

2009-09-25T22:45:00.000-07:00

I remember that I'm not allowed to eat this morning. I have my planning session at The Center for Radiation Therapy and this time it's for real. I change into a gown and wait. Less then 5 minutes later, Jose, my favorite blood technician from Tower (no, I cannot believe that I've had enough blood draws to have a favorite technician) comes to the The Center to set up my i.v. I had told Marilyn that I am a terrible patient, hate needles and still get nauseous after 1 year of weekly blood tests. That's the 1 negative of post-cancer life without a port. Even though my left arm is usually off limits for blood draws, Jose skillfully inserts the needle into my left arm. Dr. Botnick needs to locate the lymph nodes in my chest area so that he can include them in the field of radiation. We love Jose and the i.v. is quick and relatively painless. I'm led into a large room with a massive machine. A technician whose name I can't remember introduces himself and asks me to join him at the computer in the corner. He pulls up consent forms that I'm to sign. They go through the myriad of side effects that radiation may cause. Exhaustion, nausea, localized pain, lymphedema, and many others that I try to block out. Everyone swears I need this and it outweighs all the bad shit that it could cause (including other cancers down the road).

I lie down in the machine and the technician explains what he's about to do. He's going to flush my i.v. with a radioactive material that will highlight my lymph nodes. He lifts my arm up and guides my hand to hold onto a small bar above my head. It seems to be taking forever. My fingers start to tingle and I know that soon my whole hand and arm will be numb. The technician starts fiddling with the needle and taping layers of tape over it. I don't know what on earth he could be doing but it's ridiculously painful. He tells me that due to the position of my arm, the catheter is pinched and the contrast dye can't get through. He calls in Dr. Botnick's nurse (who we love by the way). She keeps repeating that it's a great i.v. but for the position of my arm. But since it's not working in the needed position I don't think it's so great. There's more pushing and shoving and taping and untaping. Ouch and ouch and ouch! The problem is finally resolved when Marilyn pushes the needle deeper into my arm and tapes it down with yet more tape. I'm bruised for a week. Plus, now that I'm no longer the hairless wonder, getting the tape off my arm is gnarly. But finally the planning begins.

Dr. Botnick enters the room and places some sort of tape around my breast (he explained the purpose but I can't remember it now although I think it was to make a mold that I'll lie in each visit) and I take the opportunity to ask him about ultrasounds and their effectiveness in detecting breast cancer. A week ago, a friend of mine told me that her obgyn does an ultrasound of her breasts at each visit. At her last visit, her doctor detected a very small lump and insisted that she see a breast specialist immediately. My friend started asking me questions assuming that Dr. Funk did an ultra sound of my breasts at my bi-yearly visits. Suddenly I'm livid. I saw Dr. Funk for years before I found my own tumor. She only performed a manual exam even though there was an ultrasound machine in the examination room. I promptly emailed Dr. Funk writing "I'm assuming you have a good reason for not doing ultrasounds of your high risk patients. I'd like to know what it is." I still haven't received a response. But I have been asking doctors about the standard of care regarding ultrasounds. Dr. Botnick explains that it is not the standard of care here. It is in other countries, but not here. There's still some debate about its effectiveness in detection. But he says that I should have had an MRI. Now that I've been asking around, I've learned that many doctors are able to get their high risk patients' insurance companies to pay for MRIs. "You absolutely should have had one," Dr. Botnick says. There's no point in pointing fingers now, but I just don't understand why with my family history, Dr. Funk only performed manual examinations on me.

After the endless taping, the machine I'm lying in starts slowly moving around my body. My arm feels like it's about to fall off. After several more minutes, the technician tells me that he needs to mark me and then I'm done. The "marking" is a tattoo, 3 actually, that the technicians will use to ensure I'm properly placed in the machine during my radiation sessions. He takes out a small pen and draws 3 dots on my chest. 1 on each side of my left breast and 1 on the top. I feel 3 small pricks, 1 over each dot, and then I'm free to go home.

As I'm lying in bed that night, I tell Boris about my day. I'm playing with my hair as I'm talking. It's coming in thick and as far as I can tell, straight. Maybe there's a god after all? Boris tells me how great he thinks I look with short hair. "You're hair was beautiful before and I loved it, but you look so cute with short hair," he says. "Maybe you should keep it." It's so nice of him but there's no fucking way I'm keeping my hair this short. He smiles when I tell him about my tattoos and asks to see them. I can't even find 2 of them they're so tiny. "Cancer's given me a whole new wife," he jokes. "New hair, big fake boobs, tatts. Awesome." Hilarious.

I'm really scared for my first round of radiation. I don't know what it's going to do to my skin. I'm fair skinned and avoid the sun whenever possible and am nervous that my skin will react badly to what's essentially a crazy sunburn. Plus, I've been told radiation is exhausting and I honestly can't imagine being more tired than I already am and have been. I change into my gown and sit down in the waiting room. While I wait, Marilyn talks to me about the possible side effects and what I can do to ward them off. She tells me to use natural products like Dove soap. Huh? I tell her that Dove soap isn't natural at all and that the products I use are actually natural (i.e., don't have chemicals, parabens, fragrance etc.). I ask her what I'm supposed to avoid because I'm not going to start using unhealthy products now (I don't know why since I already had cancer). I'm to avoid anything with metals in them, particularly deodorant (which isn't a problem for me since I already use a natural deodorant - no I don't smell) and she gives me a "special" lotion to use often throughout the day and night. I don't know what I'm expecting, but it's just calendula cream (which I already own).

And then a young woman introduces herself as Iris and leads me to the treatment room. I lay down in another massive machine. I'm told to raise my arm above my head and hold on to a metal bar. The bed is covered with a sheet and Iris and another young woman tug the sheet back and forth for about 20 minutes. They're lining up my tattoos with 2 lasers. One is coming out of the wall and another from the ceiling. Their thin beams slice through my body. My arm is going numb again. And the technicians have to take x-rays that the doctor has to approve before treatment begins. And another doctor comes in to look at my skin and make sure it's okay for treatment (weird since I haven't started yet). He waltzes into the room saying "Hi, I'm Dr. Rose please don't move," in one breath. I don't. He says I look great and waltzes out of the room. I'm ready for treatment. A giant arm on the side of the machine starts moving. At the end of the arm is a huge metal disk covered in glass. Inside the disk are what looks like metal teeth (which I later learned are called levers) that open and close as the arm slowly rotates around my body. Each time the teeth open, a loud siren, similar to an MRI machine, sounds. The whole process takes about 5 minutes. By the end my arm feels like lead it's so heavy and numb. Iris comes into the room and thankfully tells me I can lower my arm. I get up, get dressed and go home. I slather my breast and armpit with lotion and apply it every hour. I swear my lymphedema is worse after 1 treatment. Boris thinks I'm crazy (although I'm not sure that has anything to do with cancer).

After the initial session, the others are incredibly quick (thank goodness since I go 5 days a week for the next 5 1/2 weeks). I'm back home within 30 minutes of leaving my house. The bulk of each session is spent lining up my tattoos with the lasers. After my third session, I go to change back into my clothes in the dressing room and I hear a woman crying to Marilyn. She can't believe she's sick. And then I hear her say that while her husband is very supportive, he's been complaining that she doesn't want to have sex. "I'm usually a very sexual woman," she sobs. "But I feel so terrible." I want to open the door and suggest that she tell her husband to fuck off, but I don't. I remember telling Boris that he could get a girlfriend when I was diagnosed (but I also told him that when Miles was born and he woke me up one night for nookie and I explained that he could get a girlfriend but could not, ever, ever, wake me up in the middle of the night). But I also know he never would and would never complain to me about his needs when I'm not feeling well. I feel sad for her.

I go home to find Miles on the potty pulling on his penis. "You have to point your penis in to the potty," I tell him (since he's peed on me way too many times). But he tells me that he's trying to put his penis in his belly button, and suddenly I'm not sad anymore. I laugh and laugh and am so thankful for him. But as I'm snuggling with Miles before bed he says "mommy is sad." "I'm not sad, monkey," I tell him. "Do I look sad?" "Mommy's eyes are sad," he says. And he goes on "mommy's new boobies sad." I tell him that my new boobies are very happy as am I. "You feeling better mommy?" he asks. "Yes, monkey," I assure him. "Mommy is feeling better." But I'm sad again because my poor child is constantly wondering whether I'm sad or feeling okay and every time I get dressed he asks "you going to the doctor mommy?" And now when he asks to see my "boobies" he says "mommy have new boobies?" And then he'll touch them and say "take these off" or "can I take these off?" and I have to explain that the doctor had to take my old boobies off because they had cancer but my "new boobies" get to stay. And sometimes when he plays he'll tell me that his truck isn't feeling well and he's taking it to the doctor so it can feel better. One of my friends tells me that her daughter asks if she's going to work every time she gets dressed and it's really no different but I'm not so sure. And he recently asked Boris where his nipples were and wanted to know where mine were. Eek.

The next afternoon I go to see Dr. McAndrew after radiation. I wait 2.5 hours and am livid. Apparently the patient before me had a double mastectomy after months of chemo and the pathology report showed numerous tumors. I can't imagine how horrifying that must be and I remember being the patient who Dr. Mcandrew spoke to for hours so part of me understands, but waiting on the other side of the door sucks. I just want to go home to my kids. During my check up, Dr. McAndrew tells me how fantastic I look and now that I'm not pregnant or swollen with chemo agents, she "can't believe how tiny" I am. It almost makes up for the 2.5 hour wait. I tell her about the woman I met at Dr. Slate's office who was misdiagnosed with triple negative breast cancer and is now dying of carcinoid cancer which has ravaged her body. She assures me that I should feel confident that my scans were all clear. She explains that scans detect triple negative cancer very well while carcinoid cancer is much more difficult to detect. She also assures me that I don't have carcinoid cancer. Of course there's no way to know if there's a microscopic rogue cancer cell floating around in my body, but if there was something growing, the scans would detect it. I run home after almost 3 hours to be with the boys. We play for 5 minutes before it's time for their dinner and bed.

Before I know it, I'm done with my second week of radiation. I am exhausted. Crazy, crazy exhausted. My skin starts to hurt, especially under the armpit. It makes wearing clothes uncomfortable and so I spend all of my time at home in loose t-shirts. And I'm very pink. I swear that my left breast already looks different. I make Boris look at it 78394 times a day. He swears they look the same. I also swear that I'm having difficulty breathing and so I tell Dr. Botnick when I see him at my next appointment. He has no idea why that is but it's not from radiation. He suggests perhaps it's because Los Angeles is on fire. Perhaps.

Despite my daily appointments, I feel like my life is getting back to normal. My new almost-post-cancer treatment life. When I was initially diagnosed, the only thing I worried about was cancer. And dying. But lately I feel the everyday stresses and worries creeping back into my life -- little things that I used to worry about but swore I wouldn't post-cancer, like bad naps and getting Miles into my dream preschool. One day I get a call from Dr. Botnick's office as I'm about to pull into the parking lot. The machine is broken and I'd have to wait at least 30 minutes before getting treatment. I ask them to call me 10 minutes before I should come in and drive back home. Baron woke up after a 20 minute "nap," and I want to get home. Plus Miles has been jumping out of his crib and I'm not sure he's slept at all. When I get home, I see Miles heading over the side of crib yelling "I'm awake. I need a book! I'm coming out!" I try explaining to him for the millionth time why it's unsafe for him to climb out of his crib but he doesn't believe me since he skillfully lowers himself to the ground. I try explaining to him for the billionth time why it's important for him to rest his body. He responds, "I'm not sleeping. I'm awake." No nap. I'm stressed. The boys are kindof a disaster all afternoon and I feel my impatience and frustration rising. To make matters worse, Dr. Botnick's office calls to tell me the machine still isn't working and they're not going to be able to treat me. I'll have to add on an extra session. Fuck.

Boris and I lay in bed that night and I tell him about my day. In the middle of my story about Miles hurling himself out of his crib, Boris turns to me and says "I forgot that you used to have arm hair. I think it's darker than it was." I smile and thank him for keeping things in perspective. Who cares about naps when I don't have cancer and my hair is growing back? I haven't had body hair in so long that I forget what to do with it now. And I forget that it's even there. One weekend while swimming with the boys and friends, I notice that my leg hair is back. Exciting. But it has got to go, so the next day before heading to the beach for a birthday party (otherwise the beach and I do not get along) I grab Boris' razor and quickly shave. Apparently I also forgot how to shave because I have razor burn for a week.

The next morning I take Miles to his 2 year checkup with his pediatrician. The past few appointments have been really challenging because he is so distraught at the office that the doctor can barely look at him. Before we go, I explain everything the doctor will do, just like I always do. I tell him that nothing she does will hurt except that he will get a shot at the end, which will hurt but only for a minute. He is a superstar at the appointment. He lets the doctor examine him and says "it's time for a shot?" He wails as he's pricked and the nurse asks him if he wants a lollipop. "I need it," he says. And the tears stop. That afternoon I see him heading over the side of his crib. I give him the "crib jumping isn't safe resting your body is important" explanation but he starts screaming. Baron is asleep and I can't bear the thought of 2 sleepless boys so I decide to take Miles with me to radiation even though I know I should let him scream and enforce rest time. He thinks it's the best place ever because everyone tells him how cute he is and Marilyn gives him a piece of candy (with my permission, of course - and no he doesn't come into the actual radiation room with me). He sucks on a jolly rancher for the next 45 minutes saying "what's Miles tasting?" over and over again.

And so begins the daily fight of Miles wanting to come to the doctor with me. Every time I tell him I have to go the doctor he wants to come. And have candy. I tell him that candy isn't nutritious because it has so much sugar in it, so we don't eat it very often. On several occasions I put Miles down for his nap (which he thankfully started taking again) and he asks if I'm going to the doctor. I try to ignore the question and tell him that I will be home when he wakes up. He repeats his question until I answer it. My answer was totally non-responsive so I'd object, too. One morning my mom comes to take Miles to her house for 30 minutes while I go to radiation. Miles starts crying that he wants to come to the doctor with me so I take him. He asks for a candy the second we walk through the door. I change into my gown and sit down with him in the waiting room. There's another young woman sitting across from me with her young son. He's 4. He and Miles chat while his mom and I discuss our cancer and treatment and how crazy the last year of our lives have been. As Miles is licking his candy he turns to his new friend and says "it's not tritious (aka nutritious). Too much sugar." After treatment I go to see Dr. Botnick. Miles comes with me. Dr. Botnick opens my gown to see how my skin is holding up. "Your new boobies feeling better mommy?" Miles asks. Dr. Botnick starts laughing. He asks if I hurt under my arm since the skin is so raw. It hurts like hell. But my skin otherwise looks good. I ask him if my left breast looks different than the right. I want another opinion besides Boris. He shakes his head no and rolls his eyes. Then he points to Miles and reminds me what my end goal is. To live. "You're gorgeous. I'm not just saying that. Gorgeous and charismatic and you can fix your breasts if you don't like them. But they're not different." I love him.

As my last week begins, my skin gets more red and I get more exhausted. So exhausted that I often fall asleep on the table during my 5 minutes of treatment. I'm okay if I'm in motion, but given the opportunity to lay down, I'm out. And it takes a lot to get me out of bed in the morning. I want to get up, I just can't. My skin gets so red that Dr. Botnick has to see me before treatment to make sure I can proceed. It feels like my skin is on fire. I learn that the symptoms might get worse for a few weeks after treatment ends (just my luck). But I have 2 treatments left. That's it. Then I'm done. Done. Done! Over a year of treatment and it's finally almost over. Really, really over. There's nothing else left except staying healthy and cancer free.

Miles comes with me to both of my appointments on my last day. He gets candy and draws with Marilyn while I'm treated. As we drive to my last treatment, Boris texts me writing "is it official?" I get dressed after my last treatment (fucking finally!!) and leave the dressing room. Marilyn hands me a certificate of completion which is hilarious and cheesy and very sweet. Miles and I hug and kiss and sing Yellow Submarine (his favorite new song) and go home to see Baron. At a red light I take out my phone and write to Boris "it's official."

My brother comes over with a box from Tiffany's. I'm excited. I open the box to find a silver key chain etched with "fuck cancer" on it. It's so fitting I just love it. Seth tells me that the engraver initially protested because they "don't engrave curse words," but made an exception after hearing my story.

My end goal is to live. I want to watch my amazing boys grow up. They get more amazing by the second. Baron is sitting up and crawling and babbling. We all love talking with him as he carries on conversations that make him and us chuckle and laugh. And after months of narrating everything Miles does to Baron, Miles now does the narrating. He spends all day long telling Baron what he's doing and everything he sees. It's a constant stream of "look Boonie, Miles is dancing. Boonie, that's a door. Boonie, that's a tree. See the leaves? See that Boonie? I'm playing with my trucks, Boonie. Boonie, you're near the edge. The floor is far away." It's what pulled me through the last year and will make me fight for each day of the rest of my life.

I Forgot My Anniversary

2009-08-27T21:52:00.000-07:00

Miles turned 2 today. I still see his tiny face that I held in my hands for the first time 2 years ago every time I look at him. He's my first love. My baby. The baby who made me want to have a zillion more babies. Me. The girl who had held like 2 babies in her whole life because their wobbly heads scared me. The girl who thought babies were messy and dirty (and they are!) and didn't want any until I met Boris. Me. The girl who hired a nanny well before Miles was born because I thought I'd go back to work immediately. And then I met Miles. And suddenly, I didn't care about the mess and the dirt (okay, so I did but still worshiped him) and didn't want my nanny to come anywhere near him. I wanted to be with him all the time and would cry if I was away from him for more than 2 hours (swear, ask Boris). In college, I remember reading an interview with Madonna in which she was asked what her greatest accomplishment was. Her response was her children. At the time I found that so annoying. This amazing artist and businesswoman was more proud of her children? For some reason I always think about that when I think of my kids and how they are really all that matters and what I am most proud of, grateful for and in love with.

2 sounds so young. Miles is still a baby. And yet he's such a big boy. He has his own thoughts and feelings and can express them all so amazingly. He now routinely tells me "I don't like that," what he "needs," that "Miles is sad," or "frustrated," or "hungry." We had a great morning together. He's so much fun and even snuggled with me without me asking. After lunch, Miles laid down in his crib (with his new red sunglasses on) and I left for radiation. In the changing room I put on my gown like I do every day but today I realize that it's been an entire year since my cancer diagnosis. One whole year. Boris and I had planned a big first birthday bash for Miles last year that we canceled because I had heard the words "it's cancer," just days before.

I forgot my anniversary. I've been in treatment and cancer free (as far as we know) for 1 year. At least that's how my doctors look at it. 2 more years to go before my chances of a recurrence plummet.

What a year it's been. Undoubtedly the worst of my whole life. And the best. I've suffered like I never could have imagined. I've faced death -- something that most people my age have never done and hopefully never will. And I gave birth to a miracle. A beautiful, healthy, ridiculously happy miracle who makes my heart swell each time he smiles at me. Miles makes me laugh a zillion times a day. I have my best friend and love of my life by my side and know that our marriage will survive anything. I can wear anything without a bra.

Fill 'Er Up

2009-08-14T21:14:00.000-07:00

I don't even sit down in the waiting room before the nurse calls my name. I'm led to one of the examination rooms where Dr. Slate and Toni are waiting for me. I lay down on the table and lift up my shirt. Dr. Slate is pleased with how I'm healing. He explains the expansion process before he begins. Each expander has a port which Dr. Slate will locate and insert a large needle. Then he'll fill the expander with up to 50 cc of saline water each visit until I'm at my desired size (which is still as small as humanly possible). I don't like needles, period, and I especially don't like large needles and I especially especially don't like large needles that are going to be inserted into my boobs. And I don't like pain and have had more than my fair share of late. And forever really. Dr. Slate swears it won't hurt, but I'm wary given that numerous doctors have told me numerous times that numerous painful procedures aren't painful.

Toni takes my hand as Dr. Slate places magnets on each breast to locate the expander. Then Dr. Slate tells me I'm going to feel a sting and some pressure (and we all know what "pressure" means) as he gives me a shot of topical anesthesia. I squeeze Toni's hand as I feel the needle pierce my skin. It stings but isn't too bad. Thankfully I don't feel the larger needle being inserted but do feel my chest slowly tighten. "That's 40 cc's," says Dr. Slate. He asks me if I hurt. I have no idea since pain is relative and it's nothing compared to everything else I've been through. "I don't think so," I respond. "It's uncomfortable, but tolerable." "I think we'll leave it here to see how you do," he says. Toni places 2 tiny band-aids on me where the needles were and instructs me to take them off as soon as I get home. "They'll discolor your skin if you don't," she warns. Goodness.

I get up slowly. As I'm walking towards my bag, Dr. Slate asks me how Miles and Baron are doing and how I'm doing not picking them up. "They're amazing," I tell him. And I can't lie to my doctor so I tell him that I've been picking Baron up here and there and am totally fine. "It only hurts a little," I tell him. I assume that if I tear a muscle it will hurt like hell so I'll know. Not so. Dr. Slate tells me that it doesn't matter how many times I've picked up my children because it only takes 1 time to tear something. He goes on to say that I won't know I've torn anything. I'll just notice that I look lopsided and that the expander has moved. Sigh. I go to sling my giant bag over my shoulder and Dr. Slate raises an eyebrow. "That's an awfully large bag you're carrying," he says. "Is it too heavy?" I ask. He picks it up and starts laughing. "Yes, I would say so," he says. "You're always pushing the boundaries, aren't you?" Me? No. I walk out the door and he instructs me to behave.

The second expansion is a repeat of the first. I'm uncomfortable, but functioning well and not in serious pain (at least most of the time). I still can't sleep on my side and still feeling jarring, searing pain every once in a while, but that's the way it's going to be for the next several months. I inform Dr. Slate that on Thursday it will be 6 weeks post-surgery and I'm picking Miles up. "You've already picked him up, haven't you?" he asks. Um...yes. But it was an accident. A repeated accident. This time it's for real. I'm going to pick him up and run around the block with him. Then I'm going to take him in and out of his crib and car seat 100 times and go to the park with him by myself and I can't wait. "It's best to wait another 2 weeks when your muscles are completely healed," he warns "but I know I can't stop you." So true. Initially when we spoke he said 6 weeks and 6 weeks it will be.

Thursday morning when Miles wakes up I run into his room and scoop him out of his crib. "Mommy's holding Miles!," he yells. Then he goes on to exclaim "Mommy's feeling better!" It's so cute I could cry. The rest of the day he insists that I do all the heavy lifting. Our nanny tried to pick him up to put him in his highchair and he resisted screaming "Mommy do it." Since he often tells me to leave the room I'm thrilled to be top dog for once. Even if I hurt just a bit. I haven't put him or Baron down for their naps in weeks and I spend all day putting 1 of them to bed (their schedules are such at the moment that 1 wakes up and the other goes to bed). Even though the sleeping schedule means I rarely leave the house, I get a lot of 1 on 1 time with both boys, which is heaven. It's so nice rocking and snuggling Baron. He's pretty happy about it, too. When we're quietly walking around his room listening to music, I sing to him and he gazes up at me in awe and smiles (stark contrast to Miles who now says "don't sing, mommy."). Then he'll throw his little head back, open his mouth and pull my face to his. I kiss his bee stung lips a zillion times. Since my surgery I've spent so much time with him. Baron and I spend hours smiling, singing and cooing at each other. He's just so happy. He's rolling and trying to crawl. I often happily tell Miles that Baron's working on moving. "See how he gets his tushy in the air?" I ask Miles. And then the next time Baron caterpillars around I'll hear Miles say "Baron's tushy is crawling."

I need 3 more expansions but only have 2 weeks before I need to start radiation. Dr. Slate suggests that I come in twice a week and he'll just put less saline in so I'm not in terrible pain. So every 3 days I'm filled up a bit more. Each time I look more and more like Pamela Anderson. Not in clothes, thankfully, but naked the ladies are giant. Giant! Dr. Slate swears they're not and they're much smaller than my natural breasts but they point up towards the sky and it'skindof scary to look at them when I'm lying down. Amazingly, Dr. Slate can't believe I think they look fake. I must admit, however, that I love being braless (I'm not sure why it makes me think getting dressed is now much faster) and have been wearing shirts that I would have never worn before (like thin racer back tank tops sans bra) which I also love. I can't wait to buy a new wardrobe when I lose the rest of my Baron weight.

Before my last expansion I go to see Dr. Botnick. He wants to start planning and wants to make sure the expanders aren't too big and won't interfere with radiation. Marilyn, Dr. Botnick's nurse, calls me to tell me that I can't eat the morning of my appointment as I'm going to have a contrast dye scan. I confirm 100 times that I won't be radioactive and barred from picking up my kids. I wake up in the morning and out of habit make (and drink) my morning shake (whey protein, beets, kale, blueberries - sounds gross but is delish and I even get Miles to drink it). I proceed to eat oatmeal about 4 minutes before pulling into the parking lot of Dr. Botnick's office. Marilyn calls me from the waiting room and asks "did you fast?" Whoops. "Good thing," she says because Dr. Botnick decided not to do the scan today. Phew. As I'm being led to an examination room, I see Dr. Botnick walking down the hallway. I smile. He opens his arms for a giant hug like we're long lost best friends. I heart him. We hug, he tossles my hair and tells me I look great. I say something self-denigrating and he responds "I won't lay in to you today. But knock it off." I delve into the myriad of reasons I don't want radiation like lymphedema , future lung cancer or sarcomas, and uneven breasts (for $25,000 the ladies should be fucking perfect). "You'll be fine. You're young, you'll exercise." I show him my left arm and insist that it's larger than my right (Boris and I measured and although it's undetectable to the human eye (except mine) it really is). But he just repeats "you'll be fine." Sigh. He says I can complete the last expansion and that I should come in for scans and planning at the end of the week.

I sit in the waiting room to see Dr. Slate for the last time for 6 weeks. Me and my iPhone are minding our own business when a woman who appeared to be in her late 40s sits down across from me. I barely look up but she starts rummaging through her bag and talking about I have no idea what. I smile but don't respond (I try to mind my own business when sitting in the cancer center because people rarely have good things to say). She continues to talk and mumble and finally asks me point blank what kind of cancer I have. I tell her I do not have cancer (right!?) but had (past tense) breast cancer and she asks if I'm taking Tamoxifen. I explain that I had a triple negative tumor so I'm not. "That's what they told me I had," she says. "But they were wrong." She continues "I had a rare form of cancer called carcinoid cancer. It's spread throughout my body and I'm waiting to die." I am stunned and silent but finally ask her if she had scans after her diagnosis. "Scans don't work," she snaps. "I had PET/CT scans,MRI's and they told me I looked great and was cancer free." Holy fucking shit. I don't know if she's trying to be mean or scare the bejeezus out of me or if I need to drive straight to Dr. McAndrew's and ask if this is true. Maybe I have carcinoid cancer ravaging my body? Thankfully before I can burst in to tears or hysteria, I'm called in by the nurse. "Good luck," I lamely say.

I tell Dr. Slate about the misdiagnosed woman I met and how she's going to die. "Well that won't be you," he says. It can't be. Death is really not an option for me. If this shit comes back I'm going to be seriously pissed off. And somehow even though I know it's a real possibility, I don't really think it is. It's kindof like when I took the bar. I knew that 50% of the examinees failed and that I had a very real chance of failing, but I never really thought I'd be part of that 50% (and I wasn't). Granted I never really thought I'd get cancer in the first place, but death...no way. Dr. Slate fills up my expanders with the last 50cc's of saline, solidifying my Pamela Andersonness. I'm now at 510 cc's which is apparently a large C cup. Given that I was a large D (over 700cc's ) I should be happy, but they look so big it's crazy. "Not in clothes," Dr. Slate says. True. And then I'm done. Dr. Slate hugs me and tells me to call him if I have any concerns during radiation.

I have the weekend to get used to my new, giant, perfectly matched, perky boobs before I get to see what radiation does to them.

Take It Easy

2009-06-30T22:59:00.000-07:00

My reunion with the boys at home is amazing for me, but not as I had romanticized. Miles does run up to me and give me giant hug (carefully!) but then only wants to talk about "mommy's new bed moves!" I had a hospital bed delivered so that I could get up and down by myself without crying and it totally upstaged my coming home. Baron remembers me and still likes me which makes me so happy. I sit down with Miles while he has lunch and then give Baron a bottle. I think that maybe not picking the boys up won't be nearly as torturous as I expected. Even though I think I'm doing nothing, the rest of the day Boris keeps telling me to stop doing things, take it easy and sit down. I don't know how to take it easy so it's really, really tough. My mom comes over to help with dinner and baths. I kiss Baron goodnight and my mom disappears in to his room with him. I follow Boris and Miles around as Miles gets his bath and milk and feel pretty useless. Although I'm so happy to just be near Miles, I wish I could snuggle him in his chair and put him to bed. Baron has been sleeping 5-7 hours each night (woo hoo!) so Boris and I are hoping for a good night's sleep. We should have known better. We hear crying around 2:00a.m. It's Miles. Boris gets up and I hear them talking. As soon as it gets quiet, Baron wakes up. Poor Boris! He gets both boys back to bed in a short time and returns to the bedroom. In the morning I tell him how sorry I am that he was up with both boys. He tells me that Miles was just excited that I was home. When he went into his Miles' room, Miles kept repeating that "mommy's here. Mommy's home. Mommy has ouchie. Mommy's new bed moves." But before I can be selfishly happy that my child woke up to talk about my return, Boris informs me that Miles also wanted to discuss the ponies he played with that day at my cousin's house. Oh well.

The following day goes much better than I anticipated. I am in agony, but am able to move around better than anyone expected. I spend my day as usual playing with the boys; it's just an altered, less physical play. Miles and I read books together (without him cuddled up to me or sitting in my lap like usual), play with his trucks and I even let him watch television for the first time ever to keep him still and in bed with me. Thankfully, he's not so interested in the television and after 10 minutes of Sesame Street, he climbs off the bed and runs down the hall. He's way more interested in watching diggers on the computer. He's opened up a new and fascinating world of entertainment for me. For example, this is his favorite video which he calls "noisy trucks" - http://www.youtube.com/watch?v=MXhhXXsxSfE&feature=related. When he goes to the park I sit with Baron on the floor and play with him and even give him another bottle. He's super social and smiley and we chat and laugh and sing. Boris (who took the whole week off) and one of my nannies (I currently employ a staff. It's very fancy.) keep trying to make me sit down and won't let me touch a thing. I appreciate it but it's so hard to do nothing and while I worship having my house scrubbed 24 hours a day and my meals prepared for me, I feel so strange not even getting my own water. I nap (which never happens) and feel good other than the intense pain in my chest and hand.

I try to explain the pain to Boris. The best way I can describe it is to imagine having jagged plastic cups carving into your flesh. Or the tightest, most uncomfortable corset imaginable around your chest that you desperately want to take off only you can't. Ever. Or like you want to unzip your chest. It hurts to breathe deeply because it expands my chest. I tried rolling my shoulders back to stretch (no, I don't know why I did that) and almost died. Sometimes I'll move too quickly and will feel a searing pain in my chest. So I never know when I'm going to feel something horrifically painful or not. Good times.

That night as I'm following Boris and Miles out of the bath into Miles' room, Miles sees one of my drains. He gasps, points and yells "water! Mommy has water." I explain it's water from mommy's ouchie and will go away soon. He asks to see "mommy's new boobies," and I oblige. He doesn't seem bothered at all. He just smiles. My "new boobies," which Dr. Slate says are about a B cup look ridiculous on me. I look like a body builder with pecks. I now understand why Dr. Slate repeatedly told me I couldn't have small boobs. I'm just not made for them. But as crazy as I look, I can already tell that my new tatas are going to be really good. Really good. I have a perfect cleavage which is fake, but nice all at the same time. Even in all of my pain, I'm enjoying being braless as strange as it feels.

The next few days are spent the same way. Other than Miles wanting to see my new boobies a lot and talking constantly about my ouchie and new bed, things feel almost normal. Well, except for the not really being able to take care of my kids or be alone with them. At all. One night as I'm sitting with Baron and Boris is feeding Miles dinner, I notice I've missed a call on my cell phone. Then I notice it's from Tower and listen to the message immediately. It's Dr. McAndrew. She wants me to know that the results from my pathology report are in. And they're clear. All clear. No cancer. Anywhere! I cry. Boris and I hug. And cry some more. What a relief. At least for now. As Boris and I are putting Miles to bed, Miles strokes my face and says "make mommy feel better. Mommy sad." I tell him that he makes me so happy and that I'm only sad when I'm not with him and Baron. I can't tell him that I'm happy that I'm not going to die. At least for now. It's the cutest most tender thing ever. And then poof, the moment's gone and he asks "papa see mommy's boobs?" The good news goes relatively uncelebrated since I hurt and can't go anywhere anyway and really just need sleep. But that's kindof how things go now.

Our first weekend without our staff sucks. Big time. Poor Boris is exhausted as the boys decide to wake up every few hours. He runs from one room to the next calming everyone down and attempting to ensure sleep for all. On Saturday while Boris is putting Baron down for his nap, I stay outside with Miles and some friends. One of them has a gorgeous 3 year old who tries to help Miles down off a small ledge and ends up yanking him down on to hard stone. Miles starts shrieking and although I'm a few days out of surgery I instinctively pick him up and carry him inside. It is insanely painful but what's a mom to do? Seriously. Let him scream? It's bad enough that he asks to "go to park with mommy" every morning and I have to tell him no. So we snuggle inside and I clean the scratches on his little body. After that, Miles tells me several times a day that "mommy is clean." Initially I had no idea what he was talking about but then realized that each time he hurts himself I tell him we're going to clean his ouchie so it gets better. Now I'm the one with ouchies and I think he's trying to make sure I've cleaned them so they get better. I just want to pick him up and tell him I'm fine.

By the beginning of week 2 post-surgery I'm totally over not being able to pick up my boys. I know that in my hopeful grand scheme of things, 2 months isn't a long time (that's assuming I don't die prematurely) but at the moment it is torture. Torture! I think it's killing me. But so is my chest. I think the pain is worse, but it's been so bad it's hard to tell. I go to see Dr. Slate because the pain is so severe I'm sure something is wrong. Sadly there's not. Dr. Slate and his amazing nurse, Toni, ask me how much pain medication I'm taking. I had been trying not to take too much because they are so constipating, but they both tell me to get over it, drink some prune juice and take more medication. "Two pills a day isn't enough," Toni says. "You just had major, major surgery."

On the upside, they take my remaining 2 drains out. Besides not looking like I'm wearing a holster, I get to take my first real shower in 2 weeks. It feels amazing. Pre-surgery Miles and I would shower together so I'm finally able to shower with him again. We sit on the floor of the shower and chat and snuggle. He points to my ouchies and repeatedly asks "you okay mommy?" "I'm okay, Miles," I respond. "I'll get better every day." He also points up and says "what's this mommy?" "That's mommy's vagina," I tell him. "Eat it?" he asks? I'm constantly telling him and Baron that they're delicious and I'll nibble various body parts and I'll tell Miles that I want to eat him or gobble him up. Oy. Vey.

Miles goes to sleep for the first time in almost 2 weeks without protest and tears. As usual, I don't sleep as well. I'm still in too much pain. I can only lie on my back even though I desperately want to roll over onto my side. It's incredibly uncomfortable to lie in the same position all night long. Plus, I have a splint on my right arm and hand for carpal tunnels and a nighttime compression garment on my left since my lymphedema is acting up. The compression garment is thicker than an oven mitt and runs from my knuckles to my armpit. It's hotter than hell and I'm still having hot flashes every 10 minutes. It's ridiculous. I also haven't exercised in months which doesn't help and one of the numerous, fabulous side effects of chemo is that it makes me feel like I'm 93. My bones and joints are creaky and achy. So me and sleeping don't go so well of late. Or more accurately since last August.

The next morning I go to my last appointment with Dr. Slate before my expansion begins. The ladies look good. No fluid buildup and he's pleased with how I'm healing. Pleased enough to tell me that he'll start the expansion process next week. I tell him that I've "accidentally" picked Miles up twice and that Baron is so little and cute that I "accidentally" pick him up all the time. I want to hold him all the time. Toni looks at me like I'm crazy and shakes her head no. Dr. Slate explains, for the umpteenth time that my muscles are in a weakened state and that if I continue to lift heavy objects, like children, I could tear them and have to start all over again. Ugh. I know I'm trying to do too much but I honestly can't help it. I try to explain, for the umpteenth time, that it's impossible not to lift my kids at all. He tells me that he can't stop me or force me to follow his medical advice. But of course I don't want to hurt myself or worse, have to start this process over again. So I try to take it easy. Easier at least.

While I was in the hospital, Boris gave me a beautiful card that I couldn't read because I was blitzed out of my mind on opiates to which I had an allergic reaction and then needed Benadryl. Once home, I find his card and read it again. Boris writes "I can't begin to imagine how much pain you will simply brush aside in the coming few weeks as you labor to play with and bench press our children." How well he knows me. He also writes "I know this last stretch of pain and hardship comes after a long, hard road, but I can see the top from here." Me too.

Turn Mommy Off

2009-06-21T23:04:00.000-07:00

It's the day before surgery. Again. Dr. Slate calls and I tell him I hope he's not telling me surgery is canceled. He's not. He's just calling to check in and see how I'm doing. I ask him if Dr. Phillips is totally recovered. He tells me that he did 3 surgeries with Dr. Phillips yesterday and he seemed okay. "He seemed okay is not a ringing endorsement," I say. "I want to hear that he's amazing and in the best shape ever." "Of course," says Dr. Slate, "I just meant he was already okay yesterday and those surgeries were just practice for yours." I sure hope so. Everyone keeps asking me how I'm feeling and how I'm holding up with this sad tone in their voice and it's driving me crazy. I wish I didn't have to talk to anyone but my boys (i.e. Miles, Baron, and Boris).

I'm incredibly sad all day but spend the day as usual with the boys. They're going to spend the night at my parents' house since I have to be at the hospital at 5:30 in the morning. I have several discussions with Miles throughout the day about my upcoming surgery. As I'm putting him to bed and after viewing my boobies for the last time, he lays in my arms and recounts the end of his day: "Sasha push Miles. Miles sad. Miles cry. Mommy hug Miles. Sasha Sad. Mommy go hospital. Mommy have ouchie. Ouchie go away." Then it's silent for several minutes. I think he's lost in deep thought or processing really complex information. He goes on to say "Green digger. Bulldozer dig deep hole." And he continues to repeat those thoughts over and over again for a long time. We bounce from Sasha pushing him to my ouchie to the bulldozer. I kiss him a zillion times, put him into his crib and tell him I'll see him in a few days. Thankfully it's dark in the room so he can't see me crying. When I come downstairs I am ecstatic that Baron is still awake even though he should have been sleeping almost an hour ago. I get to feed him one last time. I hold him and kiss his tiny face and tell him I'll see him in a few days and that I hope he's sleeping through the night when I get back. I can think positively, right?

Boris and I have our last supper for a few weeks at our favorite sushi restaurant. We come home to an empty and quiet house and take a few pictures of the ladies before they're gone. And then we pass out from stress and fear and exhaustion. I haven't set an alarm in 2 years and nearly fall out of bed when the buzzer goes off. I'm up immediately. I brush my teeth like a madwoman because I remember Boris telling me that my breath was offensive after my lumpectomy and jump in the shower. I can't eat, don't need anything other than some pajamas as I'll be in bed for the next few days so I throw on clothes and wait for Boris.

We arrive at Cedars and register. I cross out the section of the contract allowing residents and students to "learn" on me during surgery and then am lead into the pre-op room. I meet the "anesthesiologist" who is still a resident and cross-examine him about his training and experience. He passes and skillfully inserts my i.v. causing me little pain. The real anesthesiologist comes in to meet me and asks me several questions about my history with anesthesia and whether I'm allergic to any drugs. None that I know of. Boris joins me a few minutes before Dr. Slate enters the room. He's carrying a small briefcase which he opens and empties with great care. He's a perfectionist and you can see it in everything he does. He pulls the covers around my bed and hooks them shut with clothespins to ensure total privacy. I repeatedly tell him that I don't really care who sees my boobs, but he cares and doesn't want me to be uncomfortable. He measures me and starts drawing all over my chest. He makes thick, navy markings from my neck down to my belly button, under my breasts, across the nipples. I keep looking down to watch and he keeps asking me to look straight ahead. "Your breasts hang differently when your head is down," he tells me. "You are the calmest person I've seen before this procedure," he remarks. Dr. Phillips comes in and he and Dr. Slate discuss the road map on my chest. And then they're ready and tell me they'll see me in surgery. Boris kisses me goodbye many, many times and tells me it's going to be okay. I cry as the nurse wheels me away. The anesthesiologist tells me he's going to give me something to help me relax but the next thing I remember is waking up in the recovery room.

I hurt. A lot. And I'm so itchy I could cry. I'm groggy but remember the nurses driving me crazy trying to take my blood pressure and my temperature. I can't help but think who the fuck cares about my temperature? Please just let me be. Boris tells me they're just trying to help. He goes home to put the boys to bed and my Dad comes to take his place as I'm being tortured by yet another nurse. This one keeps trying to do something to do my leg. It's taking forever and when she's done she pulls the sheets over my foot. But the sheets are all tangled up and it feels terrible and I can't get her to understand what the problem is. I keep asking her to pull all the blankets over my foot and explain that she only pulled the top sheet over, not the bottom sheets. She can't figure it out and I'm so annoyed. I ask my Dad to scratch my face since I can't move my arms and am almost crying as I tell him to make the nurse fix the fucking sheets. After way too many tries, she gets it. A group of nurses wheel me from the recovery room to my room.

I want to die as the nurses transfer me from one bed to the other. It's so unimaginably painful. And they're still harassing me about blood pressure and lord knows what else. I just want someone to scratch every inch of my body I'm so itchy and want to be left alone. My Dad scratches my face for an hour. Dr. Slate comes to see me and wants to know why no one else has realized I'm having an allergic reaction to the Dilaudid that's supposed to be easing my pain. "You're flushed and it's not normal to be this itchy. The nurses should have noticed this while you were in recovery," he says. He instructs the nurse to switch me to Morphine instead. And I'm given Benadryl. Thank god. What would I do without him? I complain that I'm surrounded by annoying and retarded people (my Dad excluded, of course) and am so glad he noticed what no one else did. Unfortunately, the insane itchiness lasts all night. I wake Boris up multiple times to have him scratch my face or head or leg or seriously anything he can get to. I'm too weak to lift my glass of water so I have to wake him for that, too.

I barely sleep. The nurses are in and out monitoring my temperature and blood pressure. Apparently I'm running a fever. Rather than give me a Tylenol, the nurse puts an ice pack on my head. I'm serious. It keeps falling down my face or off my head completely and I can't fix it. I have to keep calling her in to the room. "Does this actually do anything?" I ask. "It's really annoying." She swears it does and finally puts it under my head. At 6:00a.m. I realize that not only am I suffering from itchiness, but my right hand is totally numb. I tell the nurse but she doesn't seem to care. She also won't give me another Benadryl because it hasn't been a full 6 hours since my last pill. Are you fucking kidding me? I ask her if it's the same Benadryl I can buy at any drug store. It is. I ask Boris to go buy me some so I can put myself out of this misery. In the meantime, I ask her if she's told Dr. Slate that I am so itchy I'm moving my body in ways that surely can't be good for me so soon after surgery to try to relieve myself. She says "I've told him that you are really itchy." "That is not what I asked you," I snap. "I asked you if you told him that I am moving my body in ways I shouldn't because I am so itchy and have no way to feel better." She says no and says she'll tell him. "I don't believe you," I say. "I want you to call him from my room so that I can hear your conversation with him," I tell her. She agrees to have Dr. Slate call me. I speak to Dr. Slate on the phone an hour later. He tells me that unfortunately, there aren't other strong pain medications that I'm likely to respond better to. My options are to be in less pain but itch like hell, or be in more pain and itch less. I opt for the latter and am taken off the Morphine drip and put on oral pain medication. As fabulous as Percocet is, it's not really equipped to alleviate the extreme pain I'm in. He also instructs the nurse to give me more Benadryl immediately. I don't want to rip my skin off anymore, so I guess that's good. One of Dr. Phillips' residents comes to see me and I tell her about the numbness in my right hand. She says it's nothing and there's nothing that can be done. "So I just suffer in agony and get no sleep?" I ask her. Apparently.

When Dr. Slate comes to see me for the second time of the day (we heart him so much) he tells me there is no way I'm going home tomorrow. Every time I saw him prior to surgery I informed him that I was going home from the hospital in 2 days. He would always respond "I am not going to restrain you, but let's just see how you feel." I know he's right and don't argue. Crap.

As I'm telling my Dad that I've been taken off Morphine thanks to Dr. Slate since no one else around here is competent, he asks me if I remember what happened with the nurses as they were moving me in to my new bed. I don't. Do you remember asking one nurse "what part of don't touch me don't you understand? and telling another 'get away from me?'" Sounds familiar. I think one of the nurses kept touching my boob and she was killing me. "What else was I supposed to do?" I ask my Dad. "Nothing," he says. "I just think it's amazing that you were ordering everyone around and fighting for yourself even in a drug induced stupor that you can't even remember. If I ever need taking care of, I hope I have you on my side." But of course.

2 hours later I hurt less and itch less so things are looking up. Except that my hand is still completely numb and the "pins and needles" in my fingers are excruciating. I complain to anyone who will listen. My nurse thinks it's because I have been in the same position for so long and helps me stand up and sit in a chair for the first time. The tightness in my chest is so unbelievable I can't breathe. I can't believe it hurts this much to get out of bed and sit still in a chair. But it does. My right hand however feels much better. I sit in the chair for 30 minutes which I think is a miracle but the nurse doesn't find so impressive. She wants me to sit there a while longer so that someone can change my sheets but I tell her I might die if I don't lay down 10 minutes ago. I lie down and Dr. McAndrew comes to see how I'm doing. I tell her about the itching and the numbness in my hand, but that it seems to be much better. She leaves and of course my hand goes numb again. This time for hours. I get up and move around but nothing helps. I even take a walk around the floor which the nurse does find impressive. I tell my nurse a zillion times that something is wrong and that I fear my hand might fall off. Boris swears it won't. I can't sleep it hurts so badly. Finally the nurse calls a doctor. Excuse me, a resident (for fuck's sake!!!) who is as equally useless as every other resident who has come to see me. He looks at my arm and hand and touches it. He runs his finger over the bandage where my port was and asks what it is. "It's where they removed my port," I tell him. "What is this?" he repeats. OMFG. Shoot me. "Like I said 3 seconds ago, it's where they removed my port. Is something about that sentence confusing to you?" Jesus. He tells me that the numbness is nothing, that there's nothing that can be done and that it will go away in time.

I wake up after what feels like 10 minutes of sleep to my next door neighbor hacking up a lung. Boris gives me sponge bath and I feel much better. It's been well over 12 hours since my hand went numb again. Dr. Phillips' understudies come to see me and again tell me it's nothing and that there's nothing that can be done to help. A few hours later a woman comes in and introduces herself. She's from whatever department the port installation/removal is in. She starts to ask me some questions about my port. I just look at Boris in awe. He tells her that my port was removed. "Oh. Was there something wrong with it?" she asks. I am dying. "I didn't need it anymore," I say in total disbelief. "Hmm. Well when was it taken out?" she asks. "I cannot talk to her," I tell Boris. Boris tells her it was removed during surgery and this woman actually says "this surgery?" Boris nods and she gives some lame excuse about how she had to check and blah blah blah but um, my chart is on the fucking door and my surgery notes clearly state "bi-lateral mastectomy with port removal from right arm," not to mention everything at Cedars is on a centralized computer. Maybe she can't read? I tell Boris that I think the doctors affiliated with Cedars are amazing but you're totally fucked if you actually have to stay here. I seriously have never been surrounded by such stupid people, asked such stupid questions, period, let alone by people who are supposed to be taking care of me. And this is a good hospital. I seriously can't even imagine what it must be like elsewhere. I just know I wish I was at St. John's. Sad since I much prefer a mazuzah on my door to Jesus hanging over my head, but whatever.

But then that afternoon the heavens part and a beam of light walks through my door. Dr. McAndrew. I tell her that my hand has been numb forever and no one cares. She says the only thing she can think of is that she knows I had a blood pressure cuff on my right wrist for 7 hours during surgery (my right upper arm was off limits due to the port and my left arm is off limits forever) but says that there is medication I can take that might help the pain. Dr. Slate comes in a short while later. He doesn't understand why the nurses didn't call him last night and he's pissed. Me too! He wants me to see a neurologist immediately. He and Dr. McAndrew have a neurologist in my room within the hour. All is well with the world. The neurologist does a series of tests on my fingers, hand and arm and asks me numerous questions. He concludes that I probably had a very mild case of Carpal Tunnel Syndrome prior to surgery (hence the numbness in my right hand after chemo). It's quite common with the late stages of pregnancy and can be induced by chemo as well. And then the blood pressure cuff squeezing my wrist off and on for 7 hours worsened everything. Great. Just what I need. Carpal Tunnel. What!? The neurologist says it will go away on its own but he orders a splint for me to wear as much as possible, but always when I sleep. Dr. Slate waits in my room until the splint arrives. He also berates the nurses (in his charming way) and instructs them that I am his private patient and they are to call him and only him should I need anything. The splint doesn't completely fix the "pins and needles" in my hand, but it makes it bearable and I nap for the first time in 2 days. Before the night shift starts, I meet my new nurse. "Just in case I need anything, I want to make sure you know," and I can't finish the sentence because she interrupts me to say that she knows she is to call Dr. Slate if I need anything at all. Phew.

After constantly being told that nothing was wrong when something was or maybe because I was mad for 2 days straight and no one understood why, several people from the "Patient Care" center come to ask what they can do to make my stay better. I'm offered the "deluxe" menu (aka hospital food on glass plates) and parking passes. In addition to being "cared for" by idiots, apparently I waited a long time for a bed. Who knew? The Breast Center also sends a gift basket which is so nice. Even the anesthesiologist comes in to see how my hand is. He reminds me that he had few options for the blood pressure cuff.

I have a computer date with Miles before I have dinner. It's the best. He's so happy to see me he's climbing up on the kitchen island trying to get in to the computer. "I love you, mommy," he yells. I die of happiness. We chat about his day and he repeatedly tells me "mommy in hospital." I feel so much better and happier after seeing him. My mom holds Baron in front of the camera and he has this hilarious look that says "what the hell is going on here?" but I tell him I love him and miss him. I hold court for dinner as several good friends bring Boris and I food and visit. I tell Boris that he should sleep at home so he can get some rest and wake up with the boys. Now that I'm able to scratch my own face and lift a cup of water, I don't need him to suffer on a hospital cot. And so my room empties and I go to sleep. For 2 hours. For some fascinating reason, my nurse wakes me up at midnight to look at my incisions. "I didn't want to disturb you while you had company," she says. My company left 2 hours ago. "So you thought it was better to disturb me while I was sleeping?" I ask her. I tell her to please leave me alone unless she needs to do something that is actually necessary and useful. I can't wait to get the hell out of here. I already told Dr. Slate that I was leaving tomorrow and barring any trauma tonight, he agreed. He said that he'd be in to see me around 11:00a.m.

I sleep for 7 much needed hours straight. I wake up to my neighbor hacking up a lung again. I get up and go to the bathroom to brush my teeth. Dr. Phillips' minions walk in the room and I think look shocked to find me up. I lie down so they can inspect me and when they ask how I am doing, I inform them that I'm much better thanks to Dr. McAndrew and Dr. Slate. I tell them how angry I am that I suffered needlessly for 2 days and that contrary to everything they told me, there were things that could be done to relieve my pain. They should have called someone who knew what they were doing, I add. They're mostly mute and then leave.

Boris calls me and we have another computer date with Miles. This time he's far less enchanted with me. I keep telling him how much I miss and love him and after a minute of me, he starts saying "see trucks. See noisy trucks. See diggers!" After a few more minutes he yells "turn mommy off! See noisy trucks." I can't compete with YouTube videos of construction vehicles so I tell him I'll see him soon. "Bye mommy!" he shouts. Boris assures me it's a sign of his comfort with the situation and independence but it still makes me want to cry. Boris brings me breakfast, I give him a father's day gift and promise that we'll have a better celebration next year. And then as promised, a few minutes after 11, Dr. Slate enters the room. "You still want to go home?" he asks. Absolutely! He removes 2 of my 4 drains (painlessly thank goodness) and says I just have to wait for a wheelchair. The nurses must have wanted me out as soon as humanly possible because the wheelchair is outside of my room before Dr. Slate leaves. It was about the only prompt and on-the-ball thing they did my whole stay.

In less than 10 minutes I'll get to see my boys and I cannot wait!

The Dog Ate my Homework

2009-06-11T08:34:00.000-07:00

It's the day before my surgery. I'm planning on having a relaxing day with my boys. Boris and I haven't decided whether we'll go out to dinner and I haven't decided whether I want to take pictures of my breasts before they're gone. I have the day to decide. I spend the morning at the park with Miles as usual and come home to play and snuggle with Baron. Katie 1 comes over for lunch. She makes me feel so much better about my surgery. She tells me what it was like for her, what I should expect and shows me her boobs, again. They're still so good that I just feel better knowing that's what I'll look like, too.

Halfway through our lunch my phone rings. It's Dr. Slate. "I need to talk you about your surgery tomorrow," he says. This seems weird since we've already taken care of everything, but okay. "I just got out of surgery and was told that Dr. Phillips is in the hospital with food poisoning. I don't think he can perform your surgery tomorrow," he says. I am in shock and am speechless, which is a pretty major for me. I look at Katie 1 and then say "are you kidding?" He's not. "So what does this mean?" I ask. Dr. Slate says that they will have to reschedule my surgery until next Thursday. It's the first day they could squeeze me into their schedules. Or I could get a "fill in" surgeon which is obviously not an option. Holy shit. "Is that okay?" Dr. Slate asks. Of course it's not okay. I've been emotionally preparing myself for the past 3 weeks for surgery tomorrow and now it's postponed for an entire week. But what choice do I have? And it's really quite fitting for me and everything else that's occurred. Because whose surgery gets canceled because their surgeon landed himself in the hospital with food poisoning? Only me.

I guess it could be worse. I could have been the patient in surgery with him when he got sick and had to leave.

So now I have another week with my boys. And another week to agonize over my upcoming surgery. Shoot me.

Two Big Ones

2009-06-10T08:08:00.000-07:00

I have three weeks of freedom. Post-chemo, pre-surgery. I want to spend every minute I can with all three of my boys. I keep my appointments down to the necessities. No acupuncture, no lymphedema treatments, just surgeons and pedicures. Miles and I live at the park. The second we come home I spend time with Baron and I switch off between the 2 until they go to bed. Then Boris gets home and we spend our evenings together. We celebrate our 3rd wedding anniversary and try to joke about what an eventful 3 years it's been. 3 years, 2 babies and cancer. Boris tells me that even though this year has been unbelievably challenging, he's so happy to be sharing his life with me and will be by my side when times are better, too.

I have my last 2 appointments with Dr. Phillips and Dr. Slate. Dr. Phillips explains the surgery again and answers my remaining few questions. He tells me that he needs to push my surgery date back by 3 days because he needs to perform surgery on someone with esophageal cancer. No problem. What's 3 days? Before I leave, his patient coordinator comes in to meet me and go over the administrative aspects of the procedure. While she's talking she casually mentions that "since Dr. Phillips isn't a provider," and I have no idea what she says next because I'm in shock over the beginning of her sentence. "What are you talking about?" I ask. "Didn't you know that he's not a provider? Kristi Funk usually tells people when she refers him," she says. No I didn't know and am in a bit of shock. "I need to know what the costs are that I'll be responsible for," I tell her. I also tell her that I'm still waiting for information regarding the blood bank and the tests I need to have to be able to use Seth's blood should I need it. She assures me she'll get me the information immediately. I'm panicked. Dr. Slate is going to cost me a fortune (I'd say an arm and a leg, but really it's 2 boobs) and I can't imagine that Dr. Phillips is a bargain. But what am I going to do? Switch surgeons? Again? I like Dr. Phillips the best and think he's the best surgeon so I'm kindof stuck regardless of what the cost is. But still.

I don't hear back from the patient coordinator. The following day I call her again. She tells me that she's left messages for Valerie who has the information regarding the cost of the surgery. She offers me Valerie's email and I take it. But the next morning when I still haven't heard from anyone I realize that I am fucking livid and that it is not my responsibility to track down basic information that I should have been given months ago. So I send an email to the patient coordinator and Valerie and "bcc" Dr. Phillips. The tone of the email is, let's say, harsh. To summarize I tell her that I am livid, that it's unacceptable to have learned that Dr. Phillips isn't a provider 3 weeks prior to surgery, that it is her and her responsibility alone to have provided me with that information (not another doctor's), that it is unacceptable that I still don't have that information and that while double mastectomies and blood transfusions may be no big deal to her and her office, it is to me, that I have 2 children under 2 and can't simply race off to Cedars whenever she feels like sending me information regarding the blood bank and that while I am confident that Dr. Phillips is the best surgeon, I am seriously concerned about his staff and moving forward. And guess what? I have all the information I need within the hour. Sort of. Valerie tells me that Blue Shield is a bit different (which is weird since they are just as fucked up as any other insurance company) and that since Dr. Phillips isn't covered, neither is the hospital. I assure her that that cannot be correct and suggest that she speak to a supervisor at Blue Shield. "If that's the case I can't use Dr. Phillips. The hospital is the expensive part. But a hospital that is covered doesn't become un-covered because a doctor providing care there isn't a provider," I tell her. She calls back to tell me I'm correct. Amazing.

Now that the drama of surgery has been settled, I move on to the next drama. I wake up in the morning with what looks like a bug bite on my left breast. Since I recently saw a video on inflammatory breast cancer during which multiple women thought they had bug bites on their breasts only to find out it was inflammatory breast cancer and died shortly thereafter, I call Dr. McAndrew panicked. I leave her a message informing her that I might have inflammatory breast cancer and have to see her right away. Her nurse returns my call and informs me that I do not have inflammatory breast cancer, but that I should come in that afternoon just to alleviate my concerns. Thankfully, she was correct but I had to wait over an hour for Dr. McAndrew to see me for 2 minutes to get confirmation. But that's my new life. Life post-cancer. Any bug bite, headache, joint pain, breathing problem is now in my head some form of cancer that might kill me. I also tell Dr. McAndrew that I've been having horrible neuropathy in my right hand. It's completely numb almost every morning for close to 30 minutes at a time. I didn't have any problems with my hands during chemo and am nervous something is wrong (but of course). Plus, I'm still swollen and thought I wouldn't be by now. She sadly tells me that side effects from chemo can last for months and that often, new side effects occur after chemo is finished (for example half of my left eyebrow fell out after I finished treatment). Rude.

I rush home just in time to give Baron his bath and Miles his dinner. Baron and I are in love which I think is a miracle given how little I feel like I see him. He gazes at me with the most beautiful stare and laughs like I'm the funniest person on earth. He has the most magnificent smile that says "oh my god! It's you! I'm so happy to see you!" every time I see him even if I've only been away for 45 seconds. I get to spend a few minutes rocking him to sleep before it's time for me to put Miles to bed. I wonder when I'll ever be able to put both of them to bed and not give Baron to someone else.

In the past month, Miles has become obsessed with my boobs. Obsessed. They're now part of his bedtime routine. The irony. Each night after he has his milk and we read a zillion books I tell Miles that it's time for us to snuggle and then he'll go into his bed. He sits on my lap facing me and lays his head on my shoulder. He used to stay that way until he was ready for his bed. But not so much anymore. Now he sits up and says "find mommy's boobies. Open it (pointing to my shirt)." I lift my shirt and Miles yells "I found them!" But tonight as I lift up my shirt Miles says "two big ones!" I can't stop laughing it's so funny. He laughs too. I say "yes, mommy has two big boobies." "Miles has big boobies?" he asks while looking at his chest. "No monkey," I tell him. "Just mommy."

The next morning me and my 2 big ones go to see Dr. Slate for the last time before my surgery. I decide I'll go to the blood bank for my requisite blood typing/screening afterwards. Dr. Slate is 45 minutes late and I'm pissed. I could have had my blood drawn instead of idly waiting. Not to mention I'm missing time with the boys which makes me die. When I finally see him he asks if I'm okay and I tell him I'm really angry that I've been waiting so long and that I wish someone would have told me so that I could have made better use of my time. Dr. Slate is so apologetic and tells me he'll make sure I don't have to wait to get my blood drawn. He answers my last few questions about the procedure like when can I exercise and drive and remind him, again, that I want small boobs. When we're done talking, he escorts me to the blood bank as promised. "Are you okay if I tell a white lie to speed things up?" he asks. To get me what I want? Absolutely.

We enter the blood bank and there are at least 10 people sitting in the waiting room. Dr. Slate breezes into the back room and starts talking to one of the technicians. "I have to get her back to chemo immediately," he says. Thank goodness for my scarf! Although the clerk at the front desk is reluctant to let me jump to the front of the line, the technician tells me to come on in and leads me to a chair. Dr. Slate comes with me. I start my yoga breathing as the technician wraps the tourniquet around my arm. It always makes we want to throw up. But before I know it I'm done. As we're walking through the waiting room, Dr. Slate loudly says "okay, we'll come back," just to not piss anyone waiting off. He tells me that as his patient, his responsibility is to take care of me no matter what the issue is. I heart him.

And then I have my last appointment before surgery: lab work and an EKG at Tower. I want to cry when the nurse tells me she'll have to draw blood from my vein instead of my port. Why have a port? Plus, I just had blood drawn from my vein yesterday and wish I had known what they needed. I could have handled everything at the same time. I almost pass out. Again. I am the worst patient ever. The irony. The EKG thankfully is fast. Not because it hurts, but because the nurse is so dumb I think I'll die if I have to be near her any longer. At one point she asks me if I have kids. Really? I was only in here giantly pregnant and was the only person who was in here giantly pregnant, but whatever. She laughs and says "oh right. There are just so many patients here, you know?" I'm silent. Then when she opens my gown to attach the EKG nodes to my chest she says "oh now I can see that you have kids. But it's not too bad." OMG. Who says that? Especially because I am half her size 3.5 months after giving birth. But again...whatever. The EKG makes me think about Mattie since she's supposed to have one every 6 months and hasn't had one all year. And then I think about Norman and how much I miss him and how awful the end of his life was.

I decide that it's finally time to start talking to Miles about my surgery so that he'll know what to expect and in light of his recent obsession with my boobs, he needs to know that they're going to look different soon. I never had to talk to him about being sick because other than losing my hair, he didn't know I was. I never acted sick around him or let chemo interfere with my activities with him. And so while he and I are snuggling in his chair before bed and while he's asking to "see mommy's boobies," I tell him that mommy has a problem in her boobies called cancer and the doctors are going to take mommy's boobies away to make mommy better. "Mommy will have new boobies," I say. "Mommy will go to the hospital for 2 or 3 night night sleeps and when I come home I will have an ouchie where my boobies are. We will have to be gentle with mommy's body. But then the ouchie will go away." Miles is quiet for several minutes. Then he starts stroking my belly. "Take mommy's belly away?" he asks. "That would be nice, but no. Just mommy's boobies." He's quiet for a few more minutes, then smiles and shouts "new boobies!!" He kisses me on the lips and lays his head on my chest and just lies there for a long time. Then he jumps off my lap and runs over to his book case. "Another book," he says. "Read more books." I tell him he can pick out 1 book for us to read before bed. "2 books," he says. "1," I respond. "2 books. 2," he says. "1 book, monkey." And Miles picks out Shel Silverstein's "A Light in the Attic" and brings it to me. I think he's a genius. Or maybe I just think he's like me. If he can only have 1 book it's going to be the thickest, longest, biggest book he owns.

In the morning when he wakes up, Boris brings him into our bed where I'm snuggling with Baron. Miles turns to Boris and says "mommy in hospital. New boobies." Boris looks at me. "That's what Miles took away from our cancer conversation last night," I tell him. Leave it to my genius son to sum it all up in 5 words.

Hopefully Forever

2009-05-19T21:33:00.000-07:00

I'm almost excited as I go to Tower for round 9 of chemo because I'm in the final stretch. Just 4 more to go. 4 more weeks and I'm done with this shit. Hopefully forever. My infusion is uneventful. Well not totally, but mostly. For the past 2 weeks I had asked various people at Tower several times when I was supposed to see Dr. McAndrew and never received an answer. Then today I'm told the only time she can see me is either on the the worst day/time for me or after I'm finished with chemo. That's fine by me but Angela says I have to see her sooner. She somehow works her magic and I get an appointment during my last chemo session which is much more preferable. Just 3 hours after the drip begins I go home to be with the boys. I am so tired I can barely stand up. It takes me forever to put Miles to bed because he "no want it the bed." Plus my back's still out so I can't really soothe Baron who doesn't like it when I sit down. Baron was set to sleep at my parents but I send him to them earlier than I had planned because I just need to rest. It's a necessity but I feel like the worst mom ever. Again.

I spike a crazy fever a few hours later. I have the chills and am so achy I can't sleep. It's horrendous and I'm in agony. I watch the numbers on my clock get later and later and sometime after 2 I fall asleep. Not one hour later Miles wakes up crying. Boris gets up. When he leaves Miles' room Miles starts screaming bloody murder. Perhaps Miles picked the worst night ever to begin having separation anxiety? He screams for an hour. Boris goes back in to his room every few minutes to tell him that we love him and are here for him but it's time for sleep, but nothing works. We're up until after 4 in the morning. So much for getting some sleep.

Amazingly, although I'm tired, I feel remarkably better when I wake up. My fever is gone. Instead of resting like a normal person, I take Miles to a nearby construction site that has a mini-loader, bulldozer and digger in action (yes, I know the difference between all 3). It's paradise for Miles. He sits down on the sidewalk with his mouth agape and just stares for almost 20 minutes. I take him home and then leave for lunch with the Slate Mates. Katie 1 invited me even though I've decided to use a different plastic surgeon. We get to the restaurant and are led to the back. 15+ women with perky breasts line a long rectangular table. As I speak to several of the women and see 15+ pairs of boobs in the bathroom I start to freak out that I'm not using Dr. Slate. These women adore him and love their tatas. I meet a woman who removed her breasts prophylactically because she's a gene carrier. Her daughter was 4 months old when she had her surgery. Baron will be the same age when I have mine. She said that she couldn't lift her baby (let alone her older child) for 4-6 weeks. Several women tell me to forget lifting babies. I won't be able to open a bottle of Tylenol or the fridge or my purse for weeks. Holy shit. How on earth will I live without picking up my babies for that long?? I already feel like other people spend more time with Baron than me and now it's going to get worse. Plus, I'm not going to be able to be alone with my boys for a month or more. Nightmare. Not more of a nightmare than say...cancer, but nightmare.

One woman tells me a story that makes me doubt my choice for a general surgeon as well. Now I am totally panicked about my decision not to use Dr. Phillips or Dr. Slate. I think I've made a horrible mistake and am afraid I won't be able to change my mind. Again. I get into my car and start rescheduling surgery with Dr. Phillips and Dr. Slate. When I get home, both boys are sleeping. Baron is sleeping in his crib (a miracle!) and I don't want to disturb him since if I live, I will ultimately want him to be able to sleep in his own bed. So I sit without either of my boys (which makes me cry) and cancel surgery with the doctors I had finally chosen and call my brother to let him know I'm going to need his blood (for some reason Dr. Phillips says it's likely I'll need a blood transfusion while the surgeon I just canceled surgery with said I wouldn't.). Sigh. I'm kindof a wreck, but in the afternoon I take Miles to the park and we have so much fun. He's so social and unafraid. He waltzes up to a 5 year old and says "what's your name? Miles." We get home, I give Baron his bath and he smiles and coos at me for the longest time ever. After my panic attack that he wasn't making eye contact with me and that it was taking him too long to smile (I actually called my pediatrician to ask if Baron could be autistic and amazingly, she didn't tell me to knock it off but calmly said he is 3 minutes old and not autistic), he started staring me in the eyes while flashing me the biggest smile ever. He's such a happy baby. It's paradise for me.

My following 2 treatments are also uneventful. My counts roller coaster up and down but are always high enough for treatment. And I stop spiking fevers so I'm feeling better all things considered. The worst of my side effects are the neuropathy in my feet which is getting more and more painful and my taste buds are totally shot. Everything tastes disgusting, most of all water which I stop drinking. I'm probably giving myself a new cancer as I start chugging "Vitamin Water" which couldn't be worse for me. Plus Miles is constantly asking for "mommy's water" and isn't really buying my story that we're both drinking water. He wants to know why mine is flaming pink and his is not.

In between treatments I meet with Beth Karlan who is an OBGYN oncologist. I want to know when I have to remove my ovaries and have a zillion questions about the chemo induced menopause I'm currently experiencing, whether hormone replacement therapy or birth control (should I be lucky enough to need it) is safe for me and what I can do to ward off ovarian cancer. Dr. Karlan answers my questions to the extent they have answers. She says that she would be surprised if my ovarian function doesn't return (phew!) and that I will need to speak to Dr. McAndrew about birth control. "Birth control pills are a great way to ward off ovarian cancer," she says "but we're not sure whether it increases the risk for breast cancer." Great. But unfortunately there isn't currently an effective way to detect ovarian cancer which is why it's so deadly. She tells me about a study she's conducting on BRCA1 carriers and I offer up my blood and whatever else she needs. She and several of her colleagues are trying to understand why the gene affects women so differently (why some of us get breast cancer vs. ovarian cancer and why some women get one or the other earlier in their life rather than later). I'll be closely monitored with ultrasounds and blood tests and hopefully that will be sufficient until I have my ovaries removed. They've got to go by the time I'm 40 but the sooner the better. She says that if I'm not pregnant by 38 I should have them removed. Whether or not I can take hormone replacement therapy after their removal is up to Dr. McAndrew (it's also thought to increase the risk of breast cancer). She tells me to just get through the next 6 months and start to clear my head and to continue being strong for myself and my boys. She says something amazing about motherhood that I now can't remember because I started crying. I also cry when she tells me that doctors now think that pancreatic cancer may be part of the BRCA1 gene. Fucking great. My grandfather died of pancreatic cancer and Dr. Karlan suspects that he was the gene carrier, not my grandmother.

I also meet with Dr. Slate to discuss my upcoming surgery. I cry about 27 times during our meeting. I'm so sad this is really happening and happening so soon. I start the negotiations with him about when I can lift my kids post-surgery. He says 6 weeks. I say 2. We both say we'll discuss. He suggests I get a small set of stairs that Miles can use to get into his crib so I don't have to lift him as far. Fascinating. He says I should be able to lift Baron 2-3 weeks post-surgery but Miles...not so much. I tell him for the 497624 time that I want my new boobs to be as small as possible. He explains for the 497624 time that it's unlikely that I can have small boobs because he has to work with what was there and that I will have a large gap in the middle of my chest (think Tori Spelling) if I'm too small. Sigh. But I'm so happy with my decision to use him. His demeanor is so lovely and he's so understanding and caring.

The day before my last round of chemo I get beautiful bouquet of flowers from Boris. The card reads "one more to go."

And then it's here. The last Monday. Hopefully ever. Boris comes with me since it's the last one. Hopefully ever. I meet with Dr. McAndrew before my infusion begins. She tells me I am incredible and she's amazed at my spirit and attitude. "You never complained or felt sorry for yourself," she says. "You came in to fight and you were logical and brave. This should have been an only happy period in your life." I thank her even though I'm thinking that she just never saw me on the days I felt sorry for myself which were plentiful or the days where I cried myself to sleep out of fear. After our meeting, I'm led to a chair and Anne starts my drip. Boris sets our lunch on the table and asks me several times if I want my sandwich. I do but am busy doing I have no idea what and don't take it out of the bag. When he tells me I should eat for the third time, I sigh, roll my eyes and reach into the bag. Instead of pulling out a sandwich I pull out a big jewelry box. I look at him and smile. Then I open it. Inside is a stunning gold bracelet. Inscribed on the front is one word: warrior.

I say goodbye to Anne several times. "No offense," I tell her, but I hope I never see you again. "None taken," she says. "I hope I never see you either." At least not in the treatment center. I can just stop by to say hello during my check-ups with Dr. McAndrew when Dr. McAndrew is telling me that I'm fine and cancer free.

Hopefully forever.

Sharon is Amazing

2009-05-16T20:43:00.000-07:00

For the past 12 years, on my birthday, Nitasha asks me what the past year has taught me. I usually have to think pretty hard to come up with something. So this year, I'm prepared. Turning 35 with cancer makes you think about life. And death. A lot. The past year has taught me that I am amazing. Really. When all of this craziness began, people kept telling me how brave and strong and inspirational I was. I would just shrug and say that I was doing what anyone would do. Wouldn't everyone diagnosed with cancer while pregnant choose to have their baby despite making chemo longer and more difficult to handle? Wouldn't everyone have chemo and then take their son to the park a few hours later? Wouldn't everyone continue to see their friends and family on a regular basis during treatment? Wouldn't everyone get up in the middle of the night or early morning with their newborn? Wouldn't everyone rarely complain about what they're going through and feeling? Wouldn't everyone try to have a date night with their husband once a week (pre-newborn of course)? What I've learned this year is that no, they wouldn't.

If you didn't know I had cancer and what I was going through, you would never know from meeting me. Or being with me. Or seeing me. You might think my hair/fashion choices were questionable (since I still have no clothes that fit properly). But you wouldn't know. A dear friend recently sent me the most beautiful email that, among other things, said that I am "so fucking tough" that no one would ever know what is going on with me and that I am courageous and brave and she doesn't know how I found the ability to fight the way I do. My Aunt also left me a similar message after seeing me at the park with Miles 40 minutes after finishing chemo. She said that I "blow her mind" and that she hopes I give myself credit for being so amazing. And what I have learned this past year is that they are right. No need to shrug or think that everyone would act the way I'm acting. I am strong and a warrior and a miracle and tougher than pretty much anyone. Period. So fuck you cancer. I am amazing.

The Little Engine That Could

2009-04-28T15:20:00.000-07:00

It's Monday again and I go in to Tower for round 5 of chemo. First up is my weekly fight with the scale. I've gained 2 pounds. Again. Fuck. Anne takes my blood and returns with mostly good news. My counts are holding up for the most part. My hemoglobin is low which explains why I'm so tired and why I've been getting daily nose bleeds. We talk about how I've been feeling and I tell her that other than my nose bleeds and some pain in my feet, I'm still feeling pretty good. I tell her that I've been having hot flashes at night and that Dr. Ottavi thinks it could be chemo induced menopause. I'm freaked out and ask her if I should be taking Lupron, a drug that shuts down the ovaries and is thought to protect them from chemo (there's no guarantee). She says I should discuss it with Angela and Dr. McAndrew. I'm given the green light for treatment and the drip begins.

Angela comes to see how I'm doing and tells me, again, how impressed she is with me and how well I'm doing. She tells me again, that I'm a complete mystery and she can't believe how good I look. "Doesn't she look amazing?" she asks Nitasha who is sitting with me. But of course. I ask her if I'm going to lose my hair. It's still growing and getting thicker and longer. She tells me that if it were anyone else but me, she'd say yes, but since it's me, she has no idea. I also ask her whether I should be taking Lupron and if she can ask Dr. McAndrew whether she thinks that Zometa is something I should consider. One of my triple-negative-breast-cancer-while-pregnant friends brought it to my attention after watching Dr. Funk discuss a new study in which women who took Zometa had a much lower recurrence rate (36%!). Zometa is currently used to treat bone cancer (and I think a slightly different form of it is used to prevent osteoporosis in post menopausal women). My friend's oncologist at UCLA believes that she should take it so I'm curious to see what Dr. McAndrew thinks. Angela (and Anne) are curious to know what Dr. McAndrew says but both say that it's probably a good drug for me to take and Angela says I can get my first injection of Lupron today. I tell her that I'm going to meet with a fertility doctor first and will see what he thinks before taking the drug.

I feel so torn about taking both drugs. Lupron may (not for sure) make me a crazy person with mood swings, depression, hot flashes, dryness etc. (it totally shuts down ovarian function and we really need estrogen to be normal). I'm already suffering from most the of the side effects but am afraid of severe mood swings. Mostly I'm afraid Boris might file for divorce if I become any bitchier. Even if it's not my fault. And although the initial research on Zometa is good, it's so new, that really, who knows? We don't know all of the upsides or all of the downsides. One of the few known side effects is necrosis of the jaw but it appears that those who suffer from it are either really old or people who have had major dental surgery that didn't heal (and I thankfully don't fall into either category). I'd have to take Zometa for 3 years which means that if I am able to have more children, I'd have to wait 3 years instead of 2 to try to have more (I have to wait 2 years because all of the studies show that women who become pregnant within 2 years of having breast cancer die twice as often as those who don't and triple negative tumors recur most often within the first 2 years.). Plus, the longer I keep my ovaries, the higher my risk of ovarian cancer. Also, Zometa stays in the body for ten years and no one knows what having it in your body while you're pregnant does to a fetus. I don't know how to make these decisions. Part of me thinks that I have to take anything that improves my chances of living, but I really want more kids and would like to worry about normal things during my next pregnancy instead of whether I'm subjecting my little one to something that will do horrible things to her (if I can have a third I'm having a girl and yes, I do have control over it.). Been there. Done that.

My infusion is uneventful. I go home three hours after it begins. Even though I had called my nanny to let her know I was on my way home, when I arrive, there are no children present. And dinner isn't ready for Miles. And there's no bottle for Baron. I'm pissed. I start making dinner and bottles and a short while later my nanny, mom and boys arrive. I'm not sure what I was thinking or who I think I am, but because I wanted time alone with the boys and because I'm so angry that everyone else is enjoying my kids while I'm cooking and cleaning I tell my mom I don't need any help and she leaves. I hold Baron while I feed Miles dinner and and wear him in a sling while bathing Miles. He falls asleep and I lay him in his crib while I start reading to Miles and giving his his milk. Baron wakes up screaming and wanting to eat. I bring him into Miles' room and the 3 of us sit on Miles' chair listening to music. Soon Baron starts screaming again. After a few minutes Miles turns to me and says "papa?" I tell him that papa is at work. "Sara?" he asks. I tell him that Sara went home but realize that he's asking me to get some goddamn help so he can have some peace and quiet before he goes to bed. I call my mom but she doesn't answer. I call my brother and ask him how quickly he can get to my house. 3 minutes later peace is restored. Seth gives Baron his first bottle with formula. Baron is an eating machine and has devoured our breast milk supply much faster than expected. I knew this day was coming, but still feel so guilty. Thankfully, he didn't mind at all (same with Miles who was happy as long as something was coming out of the bottle) and had no tummy issues whatsoever.

Two days later I meet with Dr. Jain, a fertility specialist. I have to fill out a lengthy questionnaire that's totally irrelevant to my situation. It's pages and pages of questions about my period and whether I've taken hormones, how many pregnancies and miscarriages I've had, how long it took me to get pregnant, my exercise habits. I barely fill the questionnaire out. When asked how long it took me to get pregnant I write "5 minutes," and then write "I am on chemotherapy and want to preserve my fertility and ability to have more children should I choose to." Dr. Jain meets me in the waiting room. He's young and handsome and very friendly. "You made me laugh," he says. "I've never had anyone write '5 minutes' before." Glad I provide some entertainment. I unleash a zillion questions on him regarding Lupron and chemotherapy and Zometa and testing eggs for the BRCA1 gene. I inform him that if I can get pregnant again, I am having a girl who does not carry the gene (and love that in the fertility world sex selection is euphamistically called "gender balancing."). He's very knowledgeable and honest about what's possible, what's unknown, possible risks. He says that while in vitro is an option for me because my tumor was hormone negative, the safest route will be a surrogate. He also says that when I'm ready to try to get pregnant again, we will have more information regarding testing eggs for the BRCA1 gene because advancements in this field are so rapid. He tells me that I need to have my hormone levels tested to know whether he can harvest eggs. If my ovaries haven't been "shocked" into menopause, he can determine the right time to harvest eggs with Dr. McAndrew. At the moment Boris swears he doesn't want more kids, but he's sleep deprived and stressed. Soon Baron will sleep through the night and I won't be in treatment and I want to keep our options open. I'll have my hormone levels tested next Monday at Tower.

Anne leaves me a message early Monday morning. She says that my kidney function is off a bit and that I need to come in early for hydration. I call Anne back and ask what she's talking about and if I need to be afraid. Apparently my kidneys are slightly toxic and the hydration will help flush them out. She says not to be afraid, but that I want to get the toxicity level down. When I got the call, I was tending to my newly planted vegetable garden (compliments of my aunt who has the most lovely and amazing garden) while Baron was asleep. I had planned on spending the morning with Baron, having lunch with Miles and then going to Tower. I stop watering my tiny cauliflower and budding tomatoes and run to the park so I can have a few minutes with Miles since lunch is out. Ironically, Miles found a watering can and spent our 30 minutes together watering the plants at the park. Miles would pour water onto the base of a tree, inform me that "Miles is watering tree," and then say "Fernando," who is our gardener. I kiss Miles, race home to shower and snuggle Baron and then head to Tower.

Before Anne starts me on hydration, I get weighed. I've lost 4 pounds and could cry I'm so happy. By the time Ali, my chemo date arrives, I'm already woozy from the drugs and I tell her repeatedly that I've lost 4 pounds. She laughs. My infusion goes quickly and I'm home much faster than I expected. I'm exhausted and feeling shitty. I feed Miles dinner and want to cry as he tosses his food on to the floor because he "no want it the pasta." I tell him that mommy isn't feeling well and I need him to cooperate. He doesn't care. Before I lose it, I remove him from his high chair and take him into the bathroom for his bath. But before I can close the bathroom door, he sprints out of the bathroom laughing and screaming and before I can catch him he rubs marina sauce all over my white couch. He's laughing and pointing to the red blotches yelling "red! red!" I'm trying to block him from rubbing his face into the couch again and he leans all of his weight on me as I'm letting go of his arm. He tumbles to the floor, starts crying and looks up at me and says "Miles hurt. Miles sad." I die. It takes forever to get him to sleep because at bedtime he now tells me that he needs to "poo poo on the potty," (which he almost never does), and he goes through each body part and tells me that it hurts or that his monkey blanket needs water or milk and a zillion other things that would prolong going to bed.

I leave Miles' room and collapse on the couch. When I get up to make myself dinner, I notice that there's a ton of hair on the couch. Fucking great. Although I'm hoping it will just thin, I know better. I spend the next few days noticing hair on everything I get near. The sink, my pillow, my clothes, our computer. It's so sad. I knew it would probably happen and I know it's coming back, but it's still incredibly depressing. And anyone who tells me that it's the least of my worries or it's not a big deal because I know it's going to come back quickly can fuck off. Actually, I'd like them to pour something on their head that causes their hair to slowly fall out all over the place until they look like a mangy dog. Then shave their hair off. Then have it grow back until it finally looks fairly normal even though they'd never have short hair. Then repeat the process. Then we can talk.

The night before round 7 as I'm putting Miles to bed he tells me "Miles want it the park. Go to park." I tell him that we'll go the park in the morning. He wakes up, we have breakfast and I'm feeling incredibly tired. When our nanny arrives, I tell Miles that he gets to go the park with her. "No want it," he says. "No want it the park with Sara. Park with mommy." He's so delicious that I can't resist. Off to the park I go. We spend an hour together and then I rush home so I can get to Tower on time. Shortly before I leave, Dr. Jain calls me to discus my hormone levels. I was tested at Tower the week before and had the results sent to him. My ovaries have shut down. He tells me that the normal "FSH" level is between .8-11 and mine is a 79. My estrogen is low (which explains some of the lovely side effects I'm suffering from like hot flashes every 5 minutes) so I'm not producing eggs. "That means there's nothing we can do about harvesting eggs at this time," he explains. "We will have to see if your ovarian function returns after you stop chemo." Fuck. I'm so sad. I want more babies and it's so goddamn rude that I'm 34 (for a few more days) and in menopause. The whole thing is rude. Cancer. Menopause. Being bald. And fat. Rude. Rude. Rude. Rude.

I learn that I've gained 3 of the 4 pounds I lost last week back. Fuuuuuccccckkkkk. Anne takes my blood and the results aren't good. My counts are low, especially my neutrophil. Before she can treat me I need to see Dr. McAndrew. I'm taken to a room right away. Dr. McAndrew looks at my counts and explains that this is the lowest level that they can treat me at. She gives the green light for today's treatment but tells me I'm going to have to get "the shot" I've heard so much about. It's a bone marrow stimulant that in addition to causing bone marrow to produce more white blood cells, is supposed to be excruciating. One of the first things my cancer friends asked me was if I had ever gotten "the shot" and complained that it was worse than chemo itself. Oddly, Claritin is supposed to help. I buy some right away and know that the next few days may suck big time. If my counts don't go up, I won't get treatment next week. I take the opportunity to tell Dr. McAndrew about my meeting and subsequent conversation with Dr. Jain and tell her that I'm really upset that no one suggested I take Lupron before I started this cycle of chemo. "I might have had a chance of protecting my ovaries," I tell her. She explains that because I was pregnant, there was no way to get a baseline for my normal hormone level prior to starting chemo so there was no way for her to know what to do with me. She also reminds me that there is no guarantee that Lupron protects the ovaries and she confidently states that she's never seen a woman my age not have her ovarian function return within 6 months to 1 year of stopping chemo. That's a relief. I sure hope I'm not some rarity and become her first patient to buck the trend.

We also discuss whether I should take Zometa. Dr. McAndrew believes that for me, the benefits outweigh the risks. I can't start it this week because my counts are too low and most women get a fever the night of the infusion and the risk of me getting an infection are too high. If my counts go up over the week, I'll start Zometa at my next infusion. And I'll hope that some brave women ahead of me get pregnant and that we have more research and information over the next 2-3 years. I have a lot of hoping going on.

With the green light from Dr. McAndrew, my infusion begins. Without telling me, Anne pushes the Benadryl through much faster than usual and I feel like I'm on mushrooms. Seriously. I'm not hallucinating, but same feeling. I tell my date, Debbie. She looks at me blankly and then starts laughing. I raise my eyebrows and ask her what's so funny. "I have no idea what you're saying," she chuckles. "You are incoherent and slurring all of your words. And it's hilarious. And I hope you're enjoying it." I think I'm speaking perfect English. So funny. And so sad that my first drug experience since high school is in a treatment center of an oncology office (I am not counting me and Boris' few days in Amsterdam on our way to Africa for our safari during which we bought a bag of weed that we ended up giving 90% of away because we couldn't finish it. Not to mention that neither one of us knows how to roll a joint since someone else always did it for us and it took Boris like 45 minutes to roll one joint so badly nothing came out when you tried to inhale).

I go home in my stupor and rake leaves outside with Miles. It's his new favorite activity. Of course since I'm kindof fucked up, he wants to be held and then instructs me to run and dance. "Mommy pick up Miles. Dance mama, dance! Run with Miles, mommy, running! Running!" Oy vey. I don't know if it was all of the dancing and running with a 28 pound child, but around bedtime I'm incredibly achy. I ask Boris if he thinks it could be psychosomatic since I'm anticipating agonizing bone pain tomorrow when I get "the shot." He laughs. I don't. I'm so uncomfortable that I can't sleep at all. I just toss and turn and toss and turn. Around 2am, I get up to take a Tylenol and my temperature. The thermometer reads 98.6. The thermometer however, sucks, and is never accurate. According to it, I usually have the temperature of a dead person. Before I started chemo 9 months ago, I told Boris we needed to buy some thermometers since I would need to closely monitor my temperature during treatment and the only thermometer we own had been in Miles' tush. Boris wanted to know why we needed a new thermometer since we had washed the one we had post Miles' tush. I was (I think not surprisingly) horrified and totally grossed out, but thought Boris was hilarious. I promptly went to the drugstore and bought several disposable thermometers. We've since added a high tech electronic under the arm thermometer (which also doesn't work) and 2 mercury thermometers (1 of which works but takes an insanely long time). So...given my usually dead status, 98.6 concerns me a little. I try to sleep. Again. No luck. I think I pass out around 6am for a few hours.

Even though I am exhausted and feeling like death, it's Wednesday and I always take Miles to the park on Wednesdays. Why should today be different? Um, because I'm on chemo and feel awful? But, I go anyway. With surgery coming up which will make the park an impossibility for several weeks and the very real possibility that my cancer could come back or kill me in a few years, I want to spend every minute with my kids that I can. However, I wish I hadn't because I'm achy and hurt everywhere and running around after Miles is brutal. I decide to go home a little early so that I can get to Tower for my shot and an accurate temperature reading. It's 101. Shit. I had been warned that anything over 99 could be grounds for hospitalization and the nurse tells me she has to go speak to Dr. McAndrew to find out what to do with me. Thankfully, I don't have to go to the hospital. I'm prescribed antibiotics (that cost over $100 for 7 pills) and am still given the green light for the shot. It hurts. A lot. I pop a Claritin before leaving to go home. I decide to have Baron sleep at my parents' house so that I can get some rest. Although I know I didn't choose this situation, I feel like the worst mom ever. I would have never been away from Miles for a whole night when he was 2 months old. I just feel guilty all the time. When I'm with Miles I feel guilty that I'm not with Baron and when I'm with Baron I feel bad that I'm not with Miles. And honestly, I think it's a miracle that second children learn to walk and talk and know who their parents are because they (or at least mine) spend so much time with other people and get a fraction of the attention that the first child gets. Although she disagrees, Baron might spend more time with my mom then he does with me. He still seems to like me best though. Phew.

I get a great night's sleep and feel a lot less achy in the morning. I think it's a good sign that my fever has gone away. And I don't have horrific bone pain...yet. A plus. I stay home with Baron all morning and take it easy. I go in to Tower in the afternoon for my shot. I have no fever. But the nurse tells me that Dr. McAndrew wants me to come in the following day to have my blood drawn and possibly have another shot. Ugh. I go the following day and my counts have doubled. Sadly, that means they're still incredibly low, but it means I'm doing better. And I don't need a third shot which is great. Although I haven't experienced the bone pain everyone warned me about, I feel like I'm 80 and my bones are jelly. My bones go back to normal by the end of the weekend. Just in time for Monday.

Round 8 starts off well. I've lost 2 pounds (the same 2 pounds I've been gaining and losing for the past 2 months) and my counts are relatively normal for someone who has had chemotherapy for 6.5 months. That means they're low, but I'm treatable. Dr. McAndrew has also ordered my first round of Zometa. Anne tells me that I may run a fever tonight but it shouldn't last more than 24 hours. I may feel other flu-like symptoms like achiness. That however is a major understatement. Although my treatment itself is uneventful, I feel like death by the time I get home. I am so achy I can barely move and I'm sure I have a fever. I would amputate my feet if I could they itch so badly. My never accurate, piece of shit thermometer says my temperature is 101.7, so I'm pretty nervous. That probably means I'm really running a fever closer to 103. Shit. I send Baron to my parents' house so I can sleep. Again. Worst mom ever?

I have to go to Tower the next 2 days for "the shot." Again. On day 2 I run into Darcy who has finished chemo and is feeling so much better. The best part is that she had her scans and they're all clear. I want to cry I'm so happy for her but am also so sad because it's my understanding that it's a virtual certainty that her cancer will return. For now, she gets to act like a normal 21 year old and is traveling for the summer. As lame as it sounds, I tell her that I'm so proud of her and that she's survived more than most people will in their whole lives.

To add to my sadness, my hair is now falling out at a frightening pace. I'm shedding everywhere and the worst part is that it looks like male pattern baldness. I have so much hair except for the very front. It's too crazy to wear out in public so I decide it's time to shave it off. Of course Boris' electric razor breaks so Boris and I sit in the shower for over an hour with a scissors and disposable razor and I emerge bald, bald, bald. I made it through 2 of my 3 months of chemo with hair. So rude that it fell out at the very end. But then again, it's all fucking rude. That night as I put Miles to bed he pats my head and says "Mama's head. Shiny."

When I wake up in the morning I'm still super achy from the shot. Then to make things worse I throw my back out the following day as I take Miles to the first day of a new toddler group. He's the youngest by a lot but he has so much fun. Me...not so much. I have to schmooze and act "normal" and am in my scarf and watching Miles makes me sad. He's growing up. So many of the toddlers who were much older than him clung to their parents or dragged their mom around to each activity they were interested in. Miles never looked back at me once. He was off and running and busy and cried when it was time to leave. I'm not sure what that says about his attachment to me, but people keep telling me it's a really good thing. When we get home, I tell Miles that I need his help and cooperation because I hurt my back. He tells me repeatedly that "Miles' back hurts." Instead of taking a bath that night, Miles and I shower together. He's so tender it kills me. He just wants to hug. Then he washes my face. He points to my nose and I keep saying "yes, that's mommy's nose," but then I realize I'm bleeding. When it's time to get dressed for bed, instead of running around the room like madman, he lays down on the floor, lifts his legs up and says "Miles easy." Usually, when he is acting like a madman and I'm struggling to put his diaper on, I tell him we can do things the hard way or the easy way, it's up to him. The hard way involves me pinning him down to the floor which initially he finds hilarious but ultimately ends up hating. I nearly fall down trying to lift Miles into his crib my back hurts so badly. I'm totally hunched over by the time I leave his room. And I stay hunched over for almost a week. Chemo is really good at making the healing process take way longer than it should.

During one of my back related forced park vacations, Katie 1 comes to visit. Baron is at my parents and we have the house to ourselves. She's just had her final implants put in and I'm eager to see what she looks like. She looks great. Just fake. But I've realized that there is no way to make implants look natural when you have no breast tissue (or I guess even when you do). I must have looked really sad because Katie says "Sharon, you are not having cosmetic surgery. You are having a double mastectomy. Your goal is to look normal in clothes. You have to remember that. It's a perk (no pun intended) if you look good naked. And you will...but that's not the goal. You have to remember what you're doing." We cry over how tragic it is to lose your breasts and she tells me how much she misses hers and how much she loved them. "I never thought about losing my breasts," she said. "And everything happened so fast that I never really had a chance to say goodbye. I was told I had cancer in both breasts and within a week they were gone." We cry over all the things we took for granted, like having your nipples get hard when the wind blows. She also tells me how being "done" with treatment is much harder than being in treatment. As amazing as her friends and family are, everyone keeps congratulating her on being done not understanding that you're never done. "It's like you're in a hole for over a year and the really hard part is getting out. Cancer does so much more to you than you realize or could imagine. It takes your body, your confidence, your happiness and you have to work really hard to find yourself again," she says. I just worship her and feel so lucky to have found her.

And on that happy note, she congratulates me on being 2/3 of the way done with chemo. One month to go. One month to go. I think I can I think can.

P.S. After reading this posting, Boris lamented that it sounds like he's not around helping. I could write a book on how helpful Boris is and how much he does (like feeding Baron in the middle of the night every night so that I can sleep and then gets up and goes to work). He also cooks, cleans (sort of), takes 1 day of work off a week to be with me and the babies (since we don't have a nanny every day) and continues to love me in my tired, itchy, bald, often bitchy state.

More Things I've Learned From Cancer

2009-04-27T15:35:00.000-07:00

I am not as Vain as I Thought.

I am not as vain as I thought, or perhaps I'm just delusional about what I look like. My entire head is now covered in hair. I don't think I look sick anymore. Weird in a pregnant-military-chick sort of way, but not sick. Before I finished cycle 1 of chemo, I informed Boris that I was going to buy makeup and start wearing it when my hair grew back in. "And I want to wear nice clothes every day. No sweats or anything." Not a fan of makeup or dressing up (and I rarely do either), Boris wanted to know why. "Because there's a fine line between having short hair and looking fashionable and chic, and looking butch," I told him. Let me be clear that I have no issue with women decorating themselves however they choose - but butch is not a look I'm interested in.

But now that I have my covering of hair, looking fashionable and chic while 9 months pregnant and lugging a 27 pound toddler to the park is not really a priority. I'm content to leave the house in sweats without makeup. I'm just glad I can leave the house quickly without worrying about whether my scalp will get sunburned, without tying a scarf or putting on a wig. In fact I haven't worn my wig in a few weeks and have been going everywhere with my newly sprouted hair. It's actually quite thick (not surprising given the amount of hair I had pre-cancer, but you never know) and I'm overjoyed. Overjoyed may be a bit of an overstatement since I'd be much more joyful if I had my long curly hair back, but given the alternative that I've been living with, I'll take it.

When I go out, I think I make people far more uncomfortable than I feel. When my hair was more sparse (and yes, I still went out sans head coverings), people would stare or try to be discreet (you know when someone turns around pretending to look at something else but you know they're really looking at you), but I'd just smile or wave and they'd nervously smile back and turn around quickly. I recently had lunch with a pregnant with cancer friend who had completed treatment and was getting ready to go back to work. Her hair had just started to grow back in and was still pretty sparse. She told me that she really wants to go to work without a wig or scarf but was concerned about upsetting her co-workers. "My goodness," I said. "That is so nice of you. I wouldn't give a shit if I made anyone else feel uncomfortable. I only care about whether I'd feel uncomfortable or not!" But now that my hair is thick, I don't feel uncomfortable at all and most of the stares have stopped.

People Like Talking About Hair.

My new do elicits a lot of unsolicited conversations. They're mostly friendly and encouraging and it's pretty fascinating. A mom I see often at the park told me she didn't recognize me with my "new haircut." I'm not sure who chooses this haircut, but it was nice that she didn't think my hair screamed cancer. Another woman who I was sitting next to at dinner turned to me to tell me that her daughter cut off 10 inches of her hair to donate to Locks of Love and now has the same haircut as me. I smiled and told her to thank her daughter for being so fearless and generous. Then I told her that this wasn't a haircut, but rather that I lost my hair during chemo and it's just growing back. "Well," she said. Then silence. Then "you look beautiful." But of course. During a particularly rainy day, an older woman stopped me on the street and told me that I needed a hat to stay warm. And at my most recent blood draw at Tower, I was approached by a cancer patient who ran (really, she ran) up to me to tell me how fantastic my hair looked and how she couldn't wait until her hair was as long as mine. "I just had to talk to you," she said. "You are awesome and you are going to beat this. I know it." I immediately welled up with tears and said "I hope you're right." "I am right," she swore. I hope I hope I hope.

Compliments.

Never in my whole 34 year old life have I been told so often that I look great. Someone tells me on a daily basis. I'm not sure if I looked like hell before cancer or if people are just expecting me to look like death and are pleasantly surprised that I don't, but the compliments are never ending (not complaining!). A few months ago I was having a pilates lesson and was in my workout clothes (with my belly hanging out) and a scarf. A woman with short hair walked in, looked at me and said "you are beautiful." It turns out that she is a cancer survivor and must have known what was, or rather what wasn't, under the scarf. Now that I'm strutting around town with my buzzcut I get even more compliments. One woman recently told me that she would look terrible with such short hair but I'm "so pretty" with "such striking features," that I can pull it off. Puh-lease! Not to be self-denigrating or anything but give me a fucking break. I appreciate the compliment and all - but as I've said before, I am no supermodel. And no one who is accustomed to long locks thinks they'd look great with a semi-bald do and quite honestly, would look better with more hair. Myself included. I do appreciate that people routinely tell me I'm a bad ass for going out looking the way I do and Boris repeatedly tells me how proud he is that I'm so comfortable with the way I look.

Surrealism.

I often catch a glimpse of myself in a mirror or window and sometimes stop and pause. "Who the hell is that?" I often wonder. I am unrecognizable to myself. In the few dreams I've had recently that I can remember, I look like my old self. I have tons of hair and clear skin and am wearing normal clothes. I know the maternity clothes part will end soon - but the rest...not so much. Even though I've endured 6 rounds of chemo and am gearing up for more treatment, I still can't believe this is happening to me. I've asked my chemo dates if they can believe this is happening, because I can't. Even bald and hooked up to an i.v. I just scheduled all of my post-pregnancy scans and as I was setting up appointment after appointment I turned to the receptionist and said that I was still in shock that the appointments were for me. Sometimes as Boris and I are getting ready for bed and I'm slathering my body in Aquaphor, I'll turn to him and ask if he can believe I have cancer. He can't. I have cancer. Me neither. I have cancer. I think. I guess the cancer has been removed. We hope. We don't know for sure and won't until I have my scans. So I don't know if I have cancer, am battling cancer, am a survivor? How surreal?

The C-Bomb Works.

I'm shameless. I know. But sometimes a girl's gotta do what a girl's gotta do. If Pizzeria Mozza is booked, I just tell them I'm pregnant with cancer and voila - they're not booked anymore. I just purchased a new couch and when the clerk informed me I wouldn't get it before Miracle Warrior arrived, I told him that I had cancer and really needed the couch as soon as humanly possibly. I had it 4 days later. If I'm going to go through this shit - I'm going to milk it for all I can.

I No Longer Care Who Knows I have Cancer.

When I was initially diagnosed I only wanted to discuss cancer with a select few. The marines of my life if you will. Now, not so much. If anyone comments on my hair (or sadly, now, my lack thereof) I blurt out that I have cancer or am being treated for cancer. If people comment on Baron's name ("it's so unusual!") I tell them it means warrior and he and I went through chemo together. I shock people all the time and really, truly don't care.

Silkwood

2009-03-25T10:48:00.000-07:00

It's Thursday. It's one of the big days I've been waiting for and dreading at the same time. I'm to have 2 of my 4 scans. A brain MRI and bone scan. I will finally know whether my cancer has metastasized. If it has, my doctor's goal is to prolong my life but curing me is out. If it hasn't spread, the goal is still to cure me since breast cancer is curable. Once it's metastasized ...not so much. It's almost an all day affair. I check in with the front desk at the Cedars' imaging center and am immediately sent to the "nuclear medicine" wing. I'm there with Cass and she asks me how long the doctors have told me I'll have to stay away from my kids. I have no idea what she's talking about. "When I had my MRI I was told I couldn't pick up my boys for 24 hours because of the radioactive dye used for the scan," she tells me. No one has mentioned this to me and I'm a little freaked out. And pissed. Who wouldn't mention this to me beforehand? "Just ask the doctor," she says.

I get called in a few minutes later and am led into a tiny room with a chair and some cupboards. A technician enters and tells me he's going to start an i.v. with some fluids and a radioactive dye for my bone scan. I ask him if the dye will preclude me from holding my kids. "How old are they?" he asks? I tell him 2 weeks and 18 months. "You're not breastfeeding, are you? he asks. I'm taken aback, tell him no and wait for him to answer my question. He tells me that I can hold Miles for 15 minutes an hour for the next 6 hours but that I shouldn't hold Baron until morning. I can be in the same room with them though. For the love of god. What a fucking nightmare. I can't believe I can't hold my boys and no one even thought to tell me. If I hadn't been with Cass I would have had no idea and would have snuggled them both for sure. Then we'd be one big radioactive family.

The i.v. isn't nearly as painful as I expect and the technician bandages my arm up within minutes of sticking me. "I've left a needle in so that you don't have to get stuck again for your MRI," he says. It's a little uncomfortable, but not bad at all. He tells me to go down to the dungeon for my MRI. I only wait about half an hour before I'm brought into the changing room. I change into my super sexy gown and am am led into the examination room. The MRI machine is massive. A technician comes in to greet me while another gets the machine ready. It's apparently been set up incorrectly because one of the technicians who read my file thought I was getting an MRI of the breast not the brain. I wait while the machine configuration is changed and lay down.

A young woman enters the room and tells me she's going to conduct the scan. "Have you ever had an MRI before?" she asks me. I tell her that I have although I wasn't given the contrast dye. "So you know it's really loud?" Yes. She hands me a pair of earphones and asks what kind of music I'd like to listen to. "It helps drown out the machine," she says. I tell her I'd like to listen to classical music but when I put on my earphones they're blasting opera. I hate opera. I call her over and tell her I'd like the pop station. I try to relax to Britney and songs I've actually never heard (one that's to the tune of You Spin Me Right Round) but the lyrics say "you spin my head round when you go down down." OMG. I'm horrified. And apparently old because I can't believe anyone would listen to this shit. And I'm secretly their target audience.

The scan begins. I have to lay perfectly still for about 45 minutes. I cry the whole time. Not because it hurts at all but because I'm so scared of what they might find. Plus, under normal circumstances if I heard the noises coming from the machine I would run for my life. It's like a war siren. After about 30 minutes, the technician enters the room again and tells me she's going to inject me with the contrast dye. She does and leaves the room. But one minute later she comes back in and says "you're breastfeeding? You can't do that." For the love of god. "I am not breastfeeding," I tell her. "Are you Sharon Shimanovsky?" she asks. Really for the love of god. I say yes. "Well this says you're breastfeeding," the technician goes on. "Well it's wrong," I tell her. "But thanks for reminding me that I'm not breastfeeding and for having a fight with me about it." Super cool. 10 minutes later I'm done. I wipe away my tears and change back into my clothes. I have about an hour before my bone scan. Cass and I go to eat, drink and be merry but it's pretty tough now that I'm just waiting to find out if my cancer has spread to places that will likely kill me. Plus, now I can't stop thinking about how sad and guilty I feel about not breastfeeding Baron. Especially since a recent article just came out that found Perchlorate, a type of rocket fuel, in 15 brands (not identified) of powdered formula. I promptly freaked out and emailed Baron's pediatrician with a subject line that said "having a heart attack," and sent her the article. She promptly responded "Please don't have a heart attack - I would hate for a news article to kill you after you have been doing so well fighting cancer!" (we heart her) and went on to explain that Perchlorate is not new news, is in many fruits and veggies and water and that in a 2005 it was found in most breast milk in significantly higher quantities than formula. Phew. I know that I didn't choose to stop breastfeeding him and that if he's anything like his brother he will be a super healthy genius regardless of the fact that formula touched his lips before he was 1 year old...but still.

We head back to Cedars for my bone scan. The machine is equally giant, but far more comfortable. It spins all around my body while tiny dots appear and disappear on a monitor above my head. The technician asks me if I've had surgery recently. I tell her about my c-section 2 weeks ago and she says she can see it on the scan. Interesting. I ask her when the results of the scan will be available. "Probably by the end of the day today, but for sure tomorrow," she tells me. And then I'm done. I go home to not hold my boys.

On the way home I call my internist who is affiliated with Cedars and is amazing. Knowing that Dr. McAndrew is always swamped and may not call me the second she receives results from my scans, I ask her if she can check Cedars' system tonight and relay any information to me. I decide that Miles should sleep at my parents' house just to be safe and Baron can stay there until Boris gets home. My parents feed Miles while I sit nearby and chat with him. I decide to spend my hourly 15 minutes giving Miles his milk and putting him to bed. Okay, so it might be a little longer than 15 minutes, but I think it should be fine since I haven't held him at all and won't be near him all night. Of course, it's the one night that Miles doesn't kick me out of the room like usual. On most nights, when he's finished his milk and we read a book or two, he tells me "mama, bye bye. Miles. Bed." Instead of being ousted, Miles gives me the greatest snugglage ever. He buries his little face into my neck and just hugs me forever. Then he repeatedly requests that I sing "tinka tinka " (aka "twinkle twinkle little star") while he opens and closes his hands making the twinkle motion. He actually takes my hands to make me clap and caresses my face all while beaming a giant smile at me. What's a mom to do? Even a radioactive mom who doesn't want to hurt her child couldn't resist. I was probably with him for 40 minutes, but I have to believe he'll be just fine.

I go home alone. It's eerily quiet in my house with no children around and I'm sad to not hold Baron. Boris brings him home an hour later and I kiss his head a few times an hour. At 11pm I get an email from my internist. It says "preliminary results for brain MRI is normal! Still waiting for bone scan results." Hooray!!! Finally, some good fucking news. And my phone rings the next morning at 730am. It's my amazing internist who tells me that my bone scan is also clear and that I should breathe a sigh of relief because that is huge. Huge. I want to be relieved but of course I ask her how reliable the scans are. I mean, I had a clear mammogram in May and we all know how that turned out. "Talk to Dr. McAndrew ," she says. "But they're very reliable. Not at all like mammograms which we all know aren't very effective for most young women."

I wait for Dr. McAndrew to call me with the final results, but she doesn't. I'm pissed. It's not like I'm waiting for the results of a pap smear or something and assume that no news is good news. Jesus. At least I already know that the preliminary results are fine so I'm not jumping out of my skin. I wait and wait and wait and...nothing. I decide not to call but rather to talk to her on Monday when I'm at Tower for chemo.

At Tower, I ask Angela if it's normal that I received no word about my scans. "Not normal at all," she says. "Dr. McAndrew was out of town and knew you would be here today." Hmmm. Sounds suspect, but whatever. Angela brings me the final results of the scans. CLEAR. I read it again. CLEAR. God I hope they're right.

It's Thursday again. I have my remaining 2 scans at Tower. The PET and CT. I don't really understand what they are and no one has really given me a good explanation except that together, they cover all soft matter in my body. I was instructed to eat an Atkins-esque diet for 24 hours before the scans. No carbs, dairy, starchy vegetables, beans, or sugar of any sort. And then no eating for 6 hours prior to the scan, which is set for 930am. The instructions also state that I'm not to exercise for 24 hours before the scans. Not a problem since sadly, I haven't exercised in months. I'm hungry when I check in at the front desk at Tower and take a seat in the waiting room. I pull out my laptop and am typing away when a woman in a white lab coat sits down next to me. She introduces herself and tells me she's going to be with me during the scans. She explains that after my i.v. has been started and I've been injected with radioactive dye, I'll have to sit as still as possible for about 2 hours. No typing or talking on the phone as that may cause the dye to pool in areas where there isn't anything to worry about (hence the no exercise for 24 hours prior). I wonder what the hell I'll do for 2 hours without my computer or phone. I also wonder whether the radioactive dye is the same as that used during last week's scans. I assume not since the instructions I received didn't mention anything about staying away from children and everyone at Tower knows about Baron and Miles. I tell her about Baron and Miles and that no one told me I wouldn't be able to hold them. "You can't," she states. "You actually shouldn't go home until 5pm and should stay about 15 feet away from them until midnight," she tells me. Even worse. "How come no one thought to tell me this before today?" I ask her. I am so upset it's ridiculous. I start to cry and she tells me that she had breast cancer when her daughter was 3. I have no idea why she's telling me this, but I guess it's because we're cancer sisters? She goes on to tell me that she's "lucky" to not be BRCA positive. Bitch.

Jose, the technician who often draws my blood calls me into an examination room to set up my i.v. I'm not worried about it hurting because he is the best at accessing my port. He's fast and there's no pain. Sadly, this i.v. was neither fast nor painless. For some reason it's excruciating and I nearly pass out. Jose hands me a barf bag...just in case. I am weak and lightheaded and am just hoping that I don't throw up. I've had enough trauma for the day. After several minutes, Jose takes my bag and computer and leads me to the imaging center at Tower. I didn't even know this part of the office existed. The imaging center is housed behind thick steel doors and I sit down slowly in the waiting room. My arm is killing me where the i.v. is bandaged up. I'm asked to fill out some paperwork and can barely hold the pen. And then the woman I met previously comes to get me. She asks if I'm okay enough to move forward with the scans. I don't want to delay and don't want to have to eat only protein for another 24 hours. I tell her that my i.v. is unbelievably painful but that I'm okay. Still a little nauseous. She injects me with the dye. While I'm waiting, Anne walks by to get some warm towels and says hello. I tell her that I am livid about this whole radioactive-can't-hold-my-kids situation and that I want to throw up. She kisses me on the cheek and leaves.

A nurse takes me to a small room with two large lounge chairs and a television. She hands me a remote control and reminds me to be as still as I can. Although I've been cautioned about the phone (the example she gave me was that she once had a Realtor who was on the phone for 2 hours have an abnormal result due to her excessive phone use - you know how Realtors are), I have to make arrangements for Miles and Baron. I'm lucky that I have so much help and wonder what people who don't have family nearby do. I also text Debbie and tell her she has to take me to lunch because I'm a wreck and surely can't drive. I didn't think the scans would be a big deal after last weeks so I was flying solo at Tower).

After 1.5 hours a nurse comes to tell me that I should go to the bathroom as my scans are about to start. I thought I had read that I was supposed to drink a glucose drink before the scan so I ask her if I need it. She tells me that it's chalky and pretty gross and since I was so nauseous I'm not going to have it. I'm assuming that the scans will still be accurate but am already nervous that they won't be as reliable as they otherwise might. The room where the machine is is freezing. I'm wearing sweats and a thermal but the nurse tells me that I have to change into a gown because the sweats have metal on them where the drawstring is and my bra has a metal under wire. The machine doesn't like metal. I lay down on my back and she covers me up with warm blankets. I have to lay with my arms above my head so that they "can get a good look" at my lymph nodes. It's ridiculously uncomfortable and the i.v. is still making me want to cry. I have to lay like that for almost an hour. The tray I'm laying on slowly moves from one end of the machine to the other. The nurse is very nice and constantly tells me that I'm doing great and eventually, when I think I can't take it anymore, that I'm almost done. I get dressed and the nurse instructs me to eat lots of carbs. Done. I wish I was under doctor's orders to do that more often.

I leave a message for Dr. McAndrew asking her to call me as soon as she has results from the scans.

Even though I was told to stay 15 feet away from my kids, I go home and quickly make out with Miles. Then I nap by myself since I can't snuggle Baron and need to be quarantined. I decide that Miles will sleep at my parents' house again and we'll have our baby nurse come that evening to take care of Baron. I take both boys to my parents' house and watch from a distance as my Dad gives Miles dinner and my mom holds Baron. As my Dad is putting Miles to bed, Miles repeats "have Mommy, have Mommy, have Mommy." Just shoot me.

Since I have no boys at home, Nitasha suggests that we go get a massage. I'm not really supposed to have massages lest my lymphedema act up, but I ask her to find out if any of the masseuses know about the lymph system or alternatively, if they know acupressure which is supposed to be fine for me. She finds me a masseuse who will do a combination acupressure/Swedish massage. Yay! My massage is relaxing, but not nearly as fabulous as I would have liked. I like really firm massages and "acupressure" just doesn't cut it. But I don't want to piss off my arm, so I settle for relaxation. My masseuse is very sweet and massages me for longer than an hour. When she's finished, she tells me about a health food store in Venice that has a book I "have" to get about why eating a raw diet will cure me of cancer. Not vegan, just raw. "Sushi with cream" is particularly good for me she tells me. Gross. And weird. Most "cancer diets," cut out dairy completely and as much fat as possible so cream seems surprising.

Before we leave, Nitasha and I sit in the Burke Williams' lounge drinking water and I check my cell phone. I see I have a message from Tower and check it immediately. It's Dr. McAndrew . She's left me a message at home too, but wanted me to know that my PET/CT scans were clear and normal and she's thrilled. I am too. I hug Nitasha and cry.

Finally some good news. And good news of the utmost importance. My doctors are hoping to cure me. Not prolong my life, but get rid of this shit for good. Me too.

Just Another Manic Monday

2009-03-24T15:08:00.000-07:00

It's my first day of cycle 2 of chemo. My appointment is for 930am as I was told that it's very possible I could have an allergic reaction to my infusion and it could take all day. I spend the morning breastfeeding Baron for the last time. Of course, my milk supply is just building up and he's finally eating more. I cry the whole time. It's so sad to know this is the last time I will ever breastfeed my children. I have almost no time with Miles before I have to leave and I cry some more as I kiss both boys goodbye. I kiss Boris and cry some more. Who has a baby and starts chemo 2 weeks later? But Nitasha is waiting outside for me, so I pull myself together and walk out the door.

Nitasha and I pull into the parking lot of Tower 5 minutes later. The receptionist at the treatment center greets us with a big smile and asks how the baby is doing. "He's doing great," I tell her. Eating and growing and thankfully, sleeping. "And how's mommy doing?" she asks. "I'm pretty sad to be here," I lament, "but am otherwise okay. I'm taken to a chair right away. I meet my nurse for the day, Nellie. I'm a little disappointed that Anne isn't there, but Nellie seems nice. She asks me a few questions about the break I've had from treatment and then accesses my port and takes my blood. She also checks my c-section incision. "So you had surgery a month ago?" she asks? "2 weeks," I tell her. "Wow," she responds. I would have said "fuck," but "wow" will suffice. My incision has healed nicely according to Nellie and my blood counts look good. I'm given the okay for treatment.

Angela comes to talk to me before the infusion begins. She asks to see pictures of Baron. "He's a month old?" she asks? "2 weeks," I reply. I don't know why no one knows when he was born, but whatever. I pull the pictures up on my computer but we're sidetracked with chemo explanations and questions and she forgets to look. I want to know if I'm getting steroids, what they'll do to me and whether I need hydration. Angela tells me that there will be a steroid dripped through my i.v. It's to help me eat and hopefully feel as good as possible. It shouldn't make me too energetic because I'm also being given a huge dose of Benadryl which will pretty much knock me out. I wonder how my body will react to uppers and downers at the same time. Angela says she's going to re-confirm everything with Dr. McAndrew before my infusion begins. When she returns, she tells me that the plan is for me to receive 3 weekly treatments and then have a week off for my body to recover. "That is not the plan," I tell her. "Dr. McAndrew and I discussed weekly treatments, period. I don't want a week off." Angela explains that my body has already taken a huge hit with the first cycle of chemo and that the revised plan will ensure time for me to recover if my body can't handle cycle 2. "I don't want to assume that my body can't handle it," I tell Angela. "Let's assume it can and we'll skip a week only if I have to. I want as much treatment as possible. I never want this shit to come back and I never ever, ever, want to do this again." She goes to talk to Dr. McAndrew who agrees.

Angela tells me that I'm going to be just fine. "I hope so." My standard reply. "You will live to see your boys grow up and become successful adults. You'll dance at their weddings," she goes on. I start crying as she's talking. "I hope so. I hope so. I hope so," I repeat. She doesn't know but I sure hope she's right. I sob some more and then Angela starts to discuss the drugs I may need to get through this second cycle. "I'm going to prescribe you more Zofran (nausea) and something even stronger in case you need it. And you might need Ativan in case you're stressed and can't relax or sleep." I wonder who has cancer and isn't stressed and who has cancer and sleeps well? And throw in a newborn who wakes up every 3 hours to eat. I've been tired since August and have gone without sleeping pills so I don't know why I'd start now. If I have joint or muscle pain I can take Advil or she can prescribe something stronger. I have no intention of taking any of the drugs but take the prescriptions anyway. I'm already a pharmacy with a nice supply of pain killers that I've never taken. I should turn it into a business. I could star in my own private Weeds.

Nellie gives me literature on my new chemo agents that includes how they're made and the possible side effects. It's a nightmare. Reading it makes me more nauseous and afraid then reading The Jungle or Edgar Allen Poe. She tells me that because some of the side effects can be permanent (like neuropathy in the extremities) there will be required tests along the way to monitor me. I'm terrified. And then we begin the infusion. First Benadryl and other medications to help with allergic reactions and nausea. I feel drugged immediately. As she begins the drip of Taxol she tells me that the infusion will be incredibly slow and that I'm to be heavily monitored. She wasn't kidding. The nurse takes my vitals every 10 minutes and Nellie asks me a zillion times whether I'm itchy and can I breathe and am I short of breath and is my throat closing up. Shit. I don't think so but I'm so nervous I don't know what I'm feeling. I just keep saying no. It's all relative, right?

During the infusion, I meet a young woman receiving treatment next to me. We're the same age and have matching hairdos. We tell each other how good we look and ask about each other's cancer. Breast cancer all around. Her's was stage I though and she's HER2 positive so she gets the benefit of Herceptin. She cries when I tell her about Baron. She's resigned to the reality that she's probably not going to have children. She's single and will be in treatment for another year. She chose not to freeze her eggs. I can't imagine how horrible that reality is if she wanted children. But I tell her how lucky she is to be stage I and to get Herceptin. We talk about treatment, our doctors and detoxing as soon as we can.

Katie 1 brings Nitasha and I lunch and Boris comes to visit, too. I look like I'm holding court. I suppose I am. Katie cries when she sees me. "I was supposed to see you with Baron first," she says. "Mommy Sharon. Not cancer Sharon." We eat and chat and after 5 hours, I get to go home.

Miles is asleep when I arrive. But Baron has just woken up and is ready to eat. I get to feed him and snuggle with him for an hour before Miles wakes up. And then I get to play with Miles the rest of the afternoon while Baron naps. I think this isn't so bad. I'm so happy with my boys it makes everything better. And Miles is so funny it's really the best medicine. He used to say "uh oh" when he dropped something or as a warning that he was about to throw something (he'd say "uh oh" and then hurl food onto the floor). Soon that morphed into "oops," and lately when he drops something or falls he says "sorry." So he'll crash into something and say "sorry, sorry," and I always respond "it's okay, Miles," or "that's okay, Miles. Things fall etc." In the evening as I'm sitting with Miles reading with him and giving him his milk, I spill some on him and say, "oh, sorry Miles." And Miles turns to me and says "it's otay. It's otay." I heart him.

That night my head is pounding and I'm incredibly itchy. But other than that, I feel remarkably good. Too good. I wonder if the drugs worked or if I just need to wait longer to feel like shit. But I wake up feeling okay in the morning. I still have a headache and am still itchy, but I'm functioning and not too groggy. This doesn't seem so bad. As I'm laying in bed with Baron I hear Miles yelling "pee pee, pee pee, pee!" So I get out of bed and ask Miles where the pee pee is and he leads me into the hallway and exclaims "here it is!" Then he turns to Baron and says "hi Boon." And then he's off. We eat breakfast together and as I place my feet up on his highchair he tells me "mama, foot, bye bye." Geez.

Each day I wait to feel worse. But I don't. The itching subsides and I can deal with my headache. I've had one since August. I'm just hoping it's chemo and not brain cancer. By the end of the week I realize that I'm not going to feel like death. At least not this week. My taste starts to change which is unfortunate and sad, but tolerable. Water tastes horrible and I'm supposed to drink several liters a day. But I force myself to drink and eat regardless of what it tastes like and I go on with life as usual (you know, my usual crazy, surreal life). Before I know it, it's Monday again.

Anne's back in town for round 2. We hug and briefly catch up. Then I'm whisked away to get weighed (a traumatic event that happens each week before my infusion). After losing 15 pounds in 2 weeks, I learn that I've just gained 2 pounds in the past week. Gained. 2. Pounds. Shoot. Me. Although Anne is asking me important questions about how I'm tolerating treatment and about the neuropathy in my feet and legs, I can't stop complaining about my weight gain. It's all I can think about. I'm pissed. And a little suicidal. Anne and my chemo date, Debbie, continuously remind me that I could pee and lose the weight immediately and that I need to remember that weight gain is temporary and trivial given the circumstances. But I already feel like a fat lesbian (no disrespect at all to my sisters who choose to wear their hair super short, but I didn't choose this look) and getting fatter is so rude. I know I had a baby 5 minutes ago but I should be losing weight each week, not gaining it. Shit. Worst mood ever.

To make matters worse, there's a new nurse at Tower who I see instead of Angela. She's nice but meek and can't answer any of my questions regarding my upcoming scans. She tells me that she's spoken to Dr. McAndrew and has set up my chemo schedule for 3 weeks of treatment and 1 week off. "What?" I ask her. "I just went through this last week with Angela. I'm having weekly treatment and am only having a week off if I can't handle it," I tell her. She says she's unaware of that but that I can "play it by ear," next week. I'm not amused and explain to her that I cannot and will not play chemo by ear, that I need to know what the hell is going on and why my schedule keeps changing and that unless someone can tell me what the research shows about taking breaks during chemo, I'm not going to consider it. Plus, would that mean that I'm to get chemo through June instead of through May? According to her, it would. I've already scheduled my surgery for early June and am mentally prepared to be finished with chemo in May, not June. I don't want to prolong this shit any longer than is absolutely necessary. She can't answer most of my questions so I ask her to please let me speak to Dr. McAndrew. I can tell that she has no idea what to do with me. Debbie sends me an email telling me how annoying she is. The joys of modern technology. The nurse seems nervous and says she'll go talk to Dr. McAndrew and will let me know what she says. When she returns she says that according to Dr. McAndrew, my prognosis doesn't change with the 3 week on 1 week off schedule but that there's not a lot of research yet. I am so frustrated I could cry but decide that I will deal with this next week when I am scheduled to see Dr. McAndrew. In the meantime, I tell the nurse that I am planning on getting chemo next week and to make sure the appointment is set up.

I have the same side effects after round 2 as I did after round 1. Headache, itchiness and exhaustion. But it's still tolerable. And I'm still waiting for things to get worse. They don't. And before I know it, it's Monday again.

Round 3 starts out slightly better than round 2 because I have lost the 2 pounds I gained last week. But I didn't lose anything else, hence the slightly better part. My nurse for the day accesses my port. He asks me if its ever had problems with blood return. I never watch the nurses as they prick and stick me but I ask him what he's talking about and if something is wrong. He assures me that nothing is wrong but that he's not getting any blood out of me. He asks me to move my head in various directions, breath in deeply, cough. I want to vomit this is so gross. Nothing is working and so I keep doing neck and breathing exercises. He flushes my port numerous times telling me that there must be a small piece of tissue that's clogging the port. I ask him to never tell me what's going on again because that is so disgusting and wonder if he's going to have to start over again. He calls over another nurse who gets blood on the first try. He must have loosened the lid of the jar for her. My blood is taken and Angela comes to discuss the results with me.

"Your counts are good for chemo, but very low for you," she tells me. That explains why I am brutally exhausted (just in case getting up every 3 hours with Baron and then running around after Miles isn't enough of a reason). "If they get any lower, you will not get treatment next week. You need to be prepared for that." Ugh. "They can't go down," I say. Angela tells me that in all of her years in this field she has never seen anyone handle the chemo I was previously on as well as me. "You were the topic of many conversations here," she tells me. "You are amazing and handled it so well. You are so determined and each week you surprised us. So I wouldn't be surprised if you will you body to produce more blood so you can get treatment next week." We shall see.

After the infusion begins, I go to see Dr. McAndrew. We look at pictures of Baron and Miles and she tells me how beautiful they are (of course! but they really, really are beautiful). She asks about breastfeeding and how I'm doing now. I tell her that I was able to breastfeed for 2 weeks and that it was really sad for me to stop (especially knowing that I'll never be able to do it again if I'm able to have more kids). And I tell her that I'm incredibly itchy the night of treatment (despite the huge dose of Benadryl I'm given in my infusion) and that I've basically had a headache since August. Other than the neuropathy (which is also in my knees and calves on occasion), my taste buds have changed and food isn't as delicious as it used to be, but I'm otherwise okay. She's impressed.

And then we discuss my treatment. She tells me that I can get weekly treatments if my body is up for it but that if I have to miss a round or two it will not affect my prognosis. She explains that most people can't handle 100% of the treatment when they've previously undergone a full cycle of chemo. "Your bone marrow has taken a really brutal hit already and it's suffering," she explains. "Most of the studies show that if patients receive 80%-90% of the treatment, they do just as well as people who receive 100%." She says that I won't receive treatment past May (meaning that we won't tack on any missed treatments at the end if there are any) so I can keep my surgery scheduled for early June. What a relief. I ask if this is the case because this second cycle of chemo is icing on the cake (if that euphemism isn't too ridiculous) while the first cycle is what's really important. Dr. McAndrew explains that in her opinion, this cycle is just as important as the first. The Taxol I'm receiving is a Taxane based chemo and while some research shows it's not as effective with BRCA positive breast cancer patients, BRCA positive ovarian cancer patients who receive Taxanes fare much better than their BRCA negative counterparts. And the Carboplatin I'm receiving is recently being used to treat triple negative tumors and the preliminary studies are very positive.

Best of all, she says that come August, I will have been cancer free for 1 year. 1 year! It's a great milestone even though I'll have been in treatment the entire time. The only benefit of having a triple negative tumor is that unlike other breast cancers, it doesn't come back after many years. If I make it 2 years without a recurrence, my chances of a recurrence plummet. And if I make it 5 years without a recurrence, it's almost a certainty that it's never coming back. And if I make it 8 years without a recurrence, it's never coming back. Ever. 8 years seems like an eternity, but I can't believe I'm not too far off from the 1 year mark.

I set my appointment for the following week knowing that I may only have a blood draw. But I will hope that I can plow through. I go home to my boys. Baron is sleeping but I pick him up and get into bed with him. He's delicious and doing so well. He gained 2 pounds his first month and looks like a real baby (instead of a chicken) with an 87 year old's face. We wake up to Miles yelling "hello!" and pounding on the door. He reaches his little arms up to me and says "mama, hug, bed." I pick him up to snuggle but Miles thinks our bed is a giant trampoline and starts bouncing about. He does sit down for a minute (informing me that "Miles, sitting.") but pushes me away and says "bye bye." "Do you want me to leave, Miles?" I ask him. "Ya, otay," he says. Nice. And before I know it, it's Monday again.

I jump onto the scale wondering if I'm going to be in a good mood or a bad mood during round 4. Bad mood. I've lost nothing. Nothing! What is going on? Am I going to retain the rest of my baby weight for the next 2 months? So rude. The good news however is that my counts are really good. My white blood count almost doubled since last week. Angela is amazed and tells me she wants to "bottle" me. "You did it," she says. I'm given the green light for treatment. My infusion is totally uneventful except for a fight I have with my insurance company regarding a $64,000 bill they sent me for "unknown Shimanovsky." It's for Baron but since the hospital billed them without his name (weird since they knew it the second he popped out) Blue Shield is pretending they don't know who he is and is denying the claim. It's kindof like when I practiced law and had to object to opposing counsels' written requests for information on the basis that the questions were too vague or ambiguous even though I knew exactly what information they wanted. If I actually get a bill from the hospital I'll deal with it then. For now, I tell the "health care advocate" (are you fucking kidding me?) from Blue Shield that she is absurd and that I'm not paying one cent of this bill. I leave round 4 with a headache and itchy as usual.

I go home to my boys and take Miles to the park that's a few blocks away from our house. He starts crying "no want it," as I try to get him into the stroller. "Car! Car!" he yells at me. "You want to go to the park in the car?" I ask him. "Otay, ya," he says. I guess he's a proper Angelino. We swing and play in sand, Miles begs for food from total strangers and I feel like a relatively normal Mom. He's obsessed with trucks and cars and points out taxis, buses, street cleaners and almost has a coronary when a cement mixer drives by. "Mixer, mixer!!" he shouts with glee. When I was in college I would get so upset when parents would tell me their child was "all boy," or "all girl." I honestly believed that there was no innate differences between men and women but rather we were taught to have gender "appropriate" preferences. Then I had Miles and I swear I didn't only make him wear blue and certainly never did anything to foster a love of motor vehicles. He has a wide range of toys, including dolls, and zillions of books. But...he's all boy and only wants to read about big rigs and diggers and finds the one patch of dirt wherever we are and rolls around in it. And I love it. And so we read his truck books before bed and the day is over. I snuggle with Boris and Baron as we go to sleep.

Before I know it, it will be Monday again.

Homeward Bound

2009-02-28T22:07:00.000-08:00

Boris and I carry Baron upstairs and welcome him to his new home. Miles is in his highchair eating lunch. I'm so happy to see him. I sit down next to Miles with Baron in my arms and say, "Miles, this is Baron. He's your baby brother." A giant smile spread across Miles' face and he starts waving and blowing kisses to Baron. He repeatedly says, "Hi. Hi Boon (Baron's new nickname for life)." And he asks to hug and kiss Boon and says "baby brother." Amazing. After 5 minutes or so, he does say "bye bye Boon," and I have to tell Miles that Baron is here to stay. I tell him that we're all here to stay. No more running back and forth to the hospital. No more leaving the house and not returning for 7 hours. I get to enjoy the rest of the week at home with all 3 of my boys.

The next few days are familial bliss. Baron is an angel. An absolute angel. He rarely cries, sleeps for 3 or 4 hours at a time (we actually got a few 5 hour stretches out of him) and Miles likes him. At least for now. It's such a stark contrast to the first few months Miles' life. Miles was a madman and for several months would cry for 3-4 hours at a time. He was either asleep, eating, or awake and screaming his brains out. Boris and I lived in fear of the evening as that was when he cried the most and was the least consolable. There was a time when I was terrified of leaving the house with him lest he burst into one of his screaming fits. You couldn't have paid me to go anywhere with him alone. Maybe it's that we're second time parents now and less afraid, or maybe Baron really is an angel baby. But our house is actually calm. I'm not nervous or stressed. All 4 of us go the park and on walks. Baron can be sleeping peacefully and we can pick him up, put him in a car seat or sling and he stays asleep (what!?) or looks up at me and blinks and then goes back to sleep (what!? what!?). He's eating like a champ and gaining weight. It's heaven.

But hell is around the corner and it's preventing me from truly enjoying myself. Knowing that each amazing day with my family brings me one day closer to chemo is torturous. And now that I see how peaceful and happy I am with all of my boys at home (instead of the chaos I was expecting), I'm pissed. It just seems so unfair that I lost an entire week to the NICU. Of course I am thankful that Baron is fine. And I'm thankful that he's home without an infection. But I feel robbed of precious time that I can never get back. And I'm afraid of what lies ahead and wonder if I'll ever get to experience days like I've been having again.

NICU

2009-02-23T20:58:00.000-08:00

I think the NICU is the worst place I've ever seen. Small plastic cribs neatly lined up in rows encase tiny babies hooked up to tubes and monitors. I cry as I'm wheeled up to the plastic crib encasing my tiny baby. As I peer into some of the other plastic cribs, my baby doesn't look quite so tiny. But the sight of my child with a tube down his throat and a nasal cannula taped down to his face is really too much for me to bear. He however doesn't seem nearly as upset as me. He looks almost content. I speak with Susie, Baron's nurse. She explains the blinking monitor hanging above Baron's bed. "The first line is his heart rate, the second is the oxygen level in his blood and the third is his breathing rate. He's doing great and breathing much easier. We've taken some blood to see if there's any sign of infection." I notice the tiny prick mark on Baron's foot and start crying again. I ask Susie if I can hold him. She tells me that she'll have the equipment around his crib rearranged so that I can pick him up without disconnecting any of the wires. "For now, we can open the top of his crib and you can touch him," she says. The top of the crib is slowly removed and I stroke Baron's little body and place my face close to his and tell him how much I love him and that I'm here with him. He has tiny chicken legs and feet. I know a 6 pound baby isn't all that small, but compared to Miles who was over 9 pounds, Baron seems so scrawny. All around me I can hear the sniffles and murmurs of new mothers aching to hold their babies. "Mommy is here, mommy loves you, hi sweetheart it's mommy," they whisper over the beeps and buzzes of the monitors while sticking their hands through cut out windows in the cribs. It's tragic.

I tell Boris I must have been a serial killer in my past life to deserve this. First cancer (which is enough in and of itself) but cancer while pregnant, then a baby in the NICU. Anything else? I ask him if I can jump out of the window of our room or if he could please, please shoot me. He can't. But seriously, I can't take it. I just can't. I want to die.

I'm only allowed to stay with Baron for an hour before I'm told the nurses are changing shifts and I have to leave until the night nurses arrive. "You can stay all day and all night except for 1.5 hours in the morning and early evening," Susie tells me. I weep as I'm wheeled back to my room. I tell the nurse that I'm keeping the wheelchair so that I can see Baron promptly at 8pm when I'm allowed back in the NICU. And at 8pm sharp Boris and I scrub our hands and push open the doors to the NICU and park ourselves outside of Baron's crib. I ask the night nurse if she can take the top of the crib off so that I can hold Baron. "He's connected to a lot of wires," she says. I want to respond, "no shit. I'm not blind," but I don't. I just stare at her. "Are you going to want to hold him every time you come here?" she asks. "Yes," I state. "I'm going to want to hold him every time I come to see him." And I do. I am so happy to hold him! He looks so uncomfortable with tape on his face and he repeatedly tries (and often succeeds) at pulling the nasal cannula out of his nose. I swear he gives me a look like "mom, what the hell?" "I don't know chicken," I whisper. "They're trying to get you well so you can get out of here. I'm going to stay with you until I pass out and then will come back the second I wake up in the morning."

Boris and I stay in the NICU until after midnight. I cry myself to sleep that night. I just can't believe this is happening. My 2 weeks of bliss. I only get a few hours of sleep before the nurse's assistant comes in to take my vitals. I can't understand why it's more important to take my temperature and blood pressure instead of letting me sleep. And why every few hours? I'm fine. Jesus. Plus, she kind of freaks me out and I make Boris stay in the room with me every time she enters. She is always chomping on her gum so loudly it's hard to hear anything else. But the next morning through her chomps she tells me that she hopes my son looks like me because I'm so pretty. Um...creepy? She tells me that several times. Then I think she asks me if I'm Christian, but that can't be right so I say "excuse me?" "Do you go to church?" she asks. For the love of God. I was right. "No I do not go to church," I curtly respond. Now that she thinks I'm a heathen she has nothing to say to me.

I enter the NICU at 5am sans wheelchair. The nurses seem impressed that I've hobbled over so soon after a c-section. And without narcotics. They keep asking me if I'm in pain. I probably am but everything is relative. After chemo, massive surgery isn't really so bad. Nothing is. I chuckle to myself as I tell them that I'm just uncomfortable. For as long as I can remember, whenever I would ask my mom if something hurt, she would respond "no, it's just uncomfortable." I never understood why she never seemed to think anything hurt until now. Baron's nurse tells us that he did great during the night. "He's breathing well, staying warm and his CBC was good." I'm overjoyed. I have to speak to the neonatologist, but think that surely he'll be out of the NICU in no time.

So I'm surprised when Dr. Trintou tells us that Baron's CBC was not good. "His band count was very high. Although the blood culture came back clear, he's going to need a full course of antibiotics," she informs us. Fuck. I ask how long the course is. "7 days," Dr. Trintou says. 7 days!? Please shoot me now. I start sobbing. I can barely speak through the sobs but manage to blurt out that they cannot keep him for 7 days because I start chemo in 14. Susie hugs me and wipes my tears with a tissue. One of the other nurses walks over and suggests that I be moved to the room closest to the NICU and that we try to get Baron off fluids and the nasal cannula as soon as possible so that he can room with me while I'm at the hospital.

Cancer is so prevalent that there's not a single person's life it hasn't touched. Each nurse or doctor I met at the hospital had a story to share with me about their experience with cancer. Everyone wanted to know about my experience and how I was doing. And they wanted to help me however they could even if that meant bending the rules a bit for me. And interestingly, they all wanted to discuss my hair. I think I've moved out of the military phase and now look like a Chia pet.

I will not go in to detail of all the exceptions that the unbelievable nurses and doctors in the NICU made for me as they undoubtedly violate all of the hospital's rules. I will say that I am beyond grateful to them and that I spent 3 blissful days and 2 blissful nights with Baron before I was kicked out of the hospital. Baron slept on me for 72 hours straight and I nursed around the clock (another sad irony to my situation is that Baron, like Miles, latched on immediately and breastfeeding was really easy for us). I did have to give him bottles each time he ate because we were under strict instruction to feed him a certain amount of milk. It was actually incredibly stressful and I often felt as if we were being forced to force feed Baron. To keep him off fluids, he had to eat at least 30 cc's of milk. For a 6 pound, 2 day old, this seemed like an outrageous amount of food to me, but I wanted him with me. I hated trying to get him to take more from the bottle when he obviously didn't want it. I tried to get Boris to throw any left over milk away so the nurses wouldn't know when he didn't finish the requisite amount, but he refused. Boris didn't want to cross the very same people who were going out of their way to help and accommodate us. And of course...he wanted Baron to be okay. Baron often preferred to use my boob as a pillow, but I was so happy to have the snuggle time with him that I would have given up the breastfeeding all together.

I wish there was some way to blend motherhood and science and that I didn't have choose. It's one of the tragedies of the NICU. The doctors and nurses save so many little lives with science and medicine. For the truly tiny (and early), everything is monitored and controlled. There are specific "touch times" when mothers can hold or touch their babies, but the rest of the time the babies have to be in the climate controlled cribs. I heard a devastating conversation between a new mother and the nurse caring for her 4 pound twin boys born at 34 weeks in which the mother was begging the nurse to hold her babies "skin-to-skin" as she had read so much about how touch not only promotes bonding, but growth. The nurse was explaining why the babies had to be in their cribs except during "touch time." And even mothers of larger babies who could feasibly breastfeed often aren't able to successfully do so because they can't sleep in the NICU and miss too many feedings. Their milk supply dwindles and the babies won't latch on to the breast. I realize that having their babies come home as soon as possible is the most important thing, but it's all just so sad.

Another tragedy of the NICU, in my environmentally friendly and non-toxic opinion is that the NICU is well...highly toxic. For some reason I wasn't as bothered by the frequent use of xray machines as I was by watching toxic cleaning products sprayed all over the place. I realize that cleanliness is godliness at a hospital and that ensuring as sterile an environment as possible is crucial for premature babies but there are alternatives to cleaning products with harmful and harsh chemicals. One evening when Baron was rooming with us, his nurse came to take him to the NICU for a blood test. When he returned, I commented to Boris that he smelled like perfume. Boris thought the nurse must have had a lot of perfume on and it rubbed off on Baron. I later found out that they had given Baron a bath and used (gasp!) Johnson and Johnson shampoo. From then on, I instructed each nurse who cared for Baron that he was not to have any baths (I mean he's a newborn, how dirty do they think he's getting?) and they were not to use any soap, shampoo or other products on him. Since the beginning of his little couldn't have been more toxic (chemo and antibiotics - please, please shoot me), sparing him sulfates, "fragrance," and a paraben was the least I could do.

As happy as I was to have Baron in my arms 24 hours a day, I missed Miles tremendously. Miles has had like 3 colds in his entire life so of course he gets his 4th the day I give birth to Baron. I knew that Miles couldn't meet Baron while getting over a cold, but on day 4 of my hospital stay, I tell Boris that I might die if I don't see Miles. Boris brings Miles to the waiting room of the maternity ward. I had envisioned him running into my arms yelling "mama!" I know he's not the snuggliest boy, but surely he must be beside himself not seeing me for 4 days. Okay, so maybe not beside himself, but a little sad? Not so much. Miles coolly saunters over to me (Boris dressed him in a rock star outfit complete with designer jeans, a Fender t-shirt and L.A.M.B. tennis shoes), waives and says "hi, mama." Then he proceeds to wander around the floor pointing out doors, trucks, trees, windows, babies and people. He now calls all adults "man," so as each adult walked past us, Miles would yell "hi, man!" or "a man!" When he wants something he says "have it," and he spent a long time pointing to the table lamps demanding to "have it." Then one of the NICU nurses walked by and said hello to Miles. He was apparently quite taken with her, asked her to pick him up, then murmured her name the rest of the visit. I got a few hugs from him when I fed him ice cream, but without the ice cream, he could have cared less that I was there. So sad.

The next day was day 5 at the hospital and thanks to my insurance, my time was up. Dr. Ottavi made a few phone calls to the powers at be at the hospital to see if I could stay longer. She said that moms used to be able to stay at the hospital when their babies weren't discharged at the same time. The hospital basically provides a room but no care (no medical services or food). The nurse in charge of the floor comes to tell me that she can't let me stay. She says that if she makes an exception for me, she'll have to make an exception for all of the NICU moms. "I'm not going to tell any of them," I say. "So unless you are, that shouldn't be a problem. And I am an exception because as far as I know, none of the NICU moms have cancer and won't be starting chemo next week." Silence. "Well we're also full," she says. I couldn't really argue with that one, so that was that.

Boris and I spent the next 2 days and nights running back and forth between Miles and Baron. I was at the hospital between 7 and 8 in the morning so I could feed Baron and usually stayed until 4pm, at which point my parents would come to the hospital to hold him (I wanted him held as much as humanly possible) and I'd go home to play with Miles, give him dinner and put him to bed. Then it was back to the hospital until close to midnight if we didn't pass out sooner. It was agony. Having your heart split in two is brutal and guilt racking and a total nightmare. And what made it worse was the floor was not full. Far from it. Each night as Boris and I hobbled down the hallway we passed empty room after empty room.

But 2 hellish days and nights later, Baron gets the okay to come home. I hug the nurses who cared for both of us. Boris brings bagels. There's nothing like food to thank people. "You are so strong," Susie says as she loads up our bag with wipes and diapers. We promise to send updates of Baron and then are free to leave with our son. And the nightmare is over.

Milton Baron

2009-02-18T19:43:00.000-08:00

My grandfather, Milton Baron, was one of the best men I've ever known.

He was generous, smart, kind and compassionate. And he was a mensch. It sounds trite, but it's true.

He ate puffed wheat cereal with milk lovingly warmed by grandmother every morning. The rest of the day he munched on raw vegetables, fish and salads with no dressing. So it was shocking that he succumbed to pancreatic cancer at the young old age of 70. I'm not sure why I was surprised since my mom was (is) one of the healthiest women I know and she too had cancer. I was pretty healthy, too. I digress. When my grandfather was diagnosed, he knew that his cancer was a death sentence. But he was determined to fight. He decided to have a risky surgery which only 5% of patients survive after 5 years in the hopes of prolonging his life. I remember sitting in the hospital with him after his surgery and listening to him tell my grandmother that his quality of life wasn't going to be good anymore. Quality of life, family and his work were everything to him. My grandfather practiced medicine until his illness required him to stop. He served a lower income population that desperately needed his services and he loved his work and patients. When he realized that he would no longer be able to practice, he quietly ensured that his wife and children were taken care of, and died.

He was the first and only man to tell me that I could have "whatever my little heart desired," (I'm still trying to get Boris on board with that one). And he was serious. So was my grandmother. If my parents wouldn't buy me something I wanted, my grandparents would. As a child I used to have weekly sleepovers at my grandparents' house. My grandfather used to tuck me in to bed at night and tell me a bedtime story. It was always the same. A recount of the day and night's activities. He and my grandmother took me on my first international trip: Israel and London when I was 13. On the beach in Tel Aviv, he wore black dress socks and dress shoes. He snored like a train. He never got mad. His temperament was even keeled and calm. Always. Upon meeting Boris, my family immediately likened him to my grandfather. I wish Boris could have met him to know what a compliment that is.

My grandfather was an avid gardener and grew stunning orchids and cymbidiums. When he gardened he looked homeless. His clothes were dirt stained and full of holes. My grandmother was mortified. He could have cared less. He never wanted to offend people. One day he was gardening and needed cardboard boxes. He went rummaging through a garbage can of a local grocery store that my grandmother regularly shopped at. One of the employees apparently thought he was homeless and gave him a few dollars. Much to my grandmother's horror, rather than embarrass her and tell her that he was a doctor who lived up the street in a giant house on Rodeo Dr., he humbly said "thank you."

He was also incredibly open minded and wanted to understand the passions of his family. When I was in the 11th grade, I took my first Women's Studies class. I was enthralled and idealistic and wanted to change the world. I went on to major in Women's Studies in college. The more I learned, the more pissed off I became. Sexism was (is) so pervasive in every aspect of our culture. I was angry and combative a good majority of the time. Particularly when it came to religion. Women's role in the bible horrified me as did the way they were treated in most devout homes. I hated that God was (is) always referred to as a man (although quite frankly I think the world is so fucked up that if there is a God, he's a he for sure). Raised as an orthodox Jew, my grandfather's commitment to Judaism and Israel were vital to him. We often battled about the role of women in the bible and their role in Jewish life. I refused to go to temple with my family during the High Holidays which was devastating to my grandfather. I remember him telling me that Women's Studies was becoming my religion. But even though he was hurt and angry, he still wanted to understand me. He read my college thesis ("Pseudofeminism in Advertising") and came to discuss it with me. "I feel like I understand you much better now," he told me before he died. And he told me how proud he was of me.

Before Boris and I got married we discussed (or rather fought about) whether I would take his last name. Initially I told him I'd change my name, but I wanted him to make his middle name my maiden name. It only seemed fair that we should take each other's names. He was hesitant. He said that he didn't expect me to change my last name, but thought it would be sad that when we had kids, they would all have his name and I wouldn't. I was shocked and responded that I didn't understand why he thought the kids would get his last name when they were coming out of my body. "That's just the way it works," Boris said. I reminded him that we used to have slaves and women couldn't vote and that's just the way it worked, but it didn't make it okay. And then my insanely smart husband actually said "I'm the man and the kids will have my last name or I'm not having kids." Jesus. That now comes in handy and I frequently remind him that he's the man and thus the breadwinner and I'm going to stay home with the kids and be a homemaker (with a nanny and housekeeper). He usually replies that that entails me having dinner on the table for him when he gets home from work and being subservient. Hilarious. We ended up agreeing that I would take his last name, we would both make my maiden name our middle names, and any children we had would also have my maiden name as their middle names. And, since I do not believe that childbearing is a partnership, I would get to choose our children's' names and he'd retain veto power if he really, really hated it.

When I became pregnant with Miles, I knew immediately that I wanted to name him after my grandfather. Before settling on Miles, Boris and I briefly discussed naming him Baron. I loved it. Boris wasn't sure. But we both loved Miles so we really didn't give much thought to other names. When I became pregnant with MWFS and was diagnosed with cancer, I wanted his name to mean miracle or warrior. The options for miracle were grim. Milagro, Chinua, Breindel...not so much. And then one day I looked up the meaning of Baron on several websites. "Young warrior," and "warrior" was its most frequent meaning. Done. Done. Done. I could once again honor my grandfather. And I could honor another woman warrior - my mom since Baron is her maiden name. And even though Boris wasn't smitten with the name, it grew on him throughout my pregnancy. And now that Baron is here with us, we couldn't imagine him with any other name.

I wish that my grandfather could have met Boris. I wish he could have seen me mellow out and not be angry all the time. I wish he could have seen me be a mother. I wish he could have enjoyed his great grandchildren. But I believe that he knows I am happy and I couldn't think of a better way to honor him than thinking of him every time I look at my beautiful boys. Miles and Baron. In honor of Milton Baron.

MWFS' Arrival

2009-02-17T15:44:00.000-08:00

I had planned on spending the morning with Miles, but he woke up late so I woke up late and before I know it, it's 730am and Boris and I are still at home. We're supposed to be at the hospital. Oh well. I shower quickly, make-out with Miles, tell him I'll see him tomorrow and introduce him to his baby brother, and Boris and I jump in the car. It's raining. And it's L.A., so everyone is driving 2 miles per hour. Since cancer, I don't stress at all about trivial things like being late so I'm a little surprised at my anxiety over the time. I suspect it's really that I'm driving to the hospital to have MWFS, but regardless, I'm anxious and being a total backseat driver. Boris just smiles at me.

We arrive at St. John's close to 800am and the parking lot for the new building that houses the maternity ward is closed. Of course. We park elsewhere and have to walk through one of the older buildings to get to where we're going. As we're making our way through the halls, I notice where we are. Radiation Oncology. I turn to Boris and say "the irony of having to walk through the Oncology Department to get to Labor and Delivery is not lost on me." He chuckles. I feel a little sick. We finally make it to Labor and Delivery and are greeted by a nurse who asks me if I'm Mrs. Shimanovsky. My first instinct is to say no as being called that often makes my skin crawl. Mrs. Shimanovsky is my mother in law, who as far as I can tell only has one redeeming quality and that is she gave birth to my husband. Not how I want to start the day off. But I say yes and Boris and I are escorted to a delivery room.

A young and very sweet nurse enters the room and asks me to fill out paperwork while she asks me a ton of questions about my health and pregnancy. When she asks about the medications I've taken during my pregnancy I answer "6 rounds of FEC ." She looks up from the computer and stares at me. "I have cancer," I tell her. She wants to know what kind. "Breast cancer." She feels compelled to tell me her "experience" with breast cancer. "My grandmother had breast cancer a few years ago. 4 years later, she got ovarian cancer and died. I just wanted to tell you because they're related, so you should be cautious." I look at Boris, puzzled. Why people feel the need to share death stories with me is a mystery and why anyone would think I'm not cautious about cancer when I fucking have it is beyond a mystery. But, I'm about to meet MWFS and don't really care what stupid and ridiculous things people say to me. Besides, it happens on a regular basis so I'm kindof getting used to it.

The nurse tells me that she's going to start an i.v. with fluids and then the anesthesiologist will be in to talk to me. I tell her that I have a port and that Dr. Ottavi already spoke to someone about accessing it so I don't have to get stuck unnecessarily. The nurse pulls something out of my chart, says "oh right," and makes a call to Oncology. An oncology nurse enters the room a few minutes later and accesses my port with no problems or complications. Phew. She starts the fluids and I wait. However, the Labor and Delivery nurse says that the fluids aren't flowing fast enough. The oncology nurse explains that all she needs is an i.v. pump. She says that the port is the fastest way to get fluids into someone - hence its use for chemotherapy. Duh. But this is Labor and Delivery and they don't know shit about pumps and ports and apparently it's too difficult to find a pump, so after I get stuck through my port, the Labor and Delivery nurse takes it out and starts a regular i.v. So annoying. But, I'm about to meet MWFS, so I can deal with multiple pricks.

Before she leaves, the nurse tells me that I'm a rock star, which I appreciate. I'm told that a lot. Boris wonders why I'm compared to rock stars so often when really, rock stars don't have the best reputations. They're generally not known for strength and courage but rather for drug and alcohol abuse and a penchant for destroying hotel rooms and cars.

Dr. Ottavi comes early to see me and we start chatting about how exciting today is. While we're chatting, 2 anesthesiologists enter the room. Roger and Kathy. Roger introduces himself and then introduces us all to Kathy. He tells me that Kathy is going to be my anesthesiologist and that I should pretend he's not there. I'm afraid she's a resident or something so even though she's asking me a zillion questions, I'm looking at Roger in slight terror. I finally look at Kathy and ask her how many epidurals she's performed. I don't mean to be rude or anything but today is really not the day for a new doctor to gain some experience. At least not with me. Today I will tolerate only the best and most experienced doctors. Kathy explains that she's been practicing for 6 years and has performed countless epidurals, she's just new to the Labor and Delivery floor. "Good question though," says Dr. Ottavi. Just checking.

As Kathy is preparing the epidural, Dr. Ottavi stands in front me as I sit up at the edge of my bed. She tells me to put my arms around her waist. I do. I start to do my yoga breathing as she rubs my back and strokes my hair. She's the best. Ever. Ever. Through my deep breaths, I ask if an epidural is painful when you're not in labor. I don't even remember it with Miles because I was in agony. They could have shoved a jackhammer into my back and I would have thanked them if drugs came out of it. Dr. Ottavi says, "compared to what you've been through, it will be nothing." "It's much better when you're not in pain," Kathy chimes in. Wrong. It's much, much worse when you're not in pain. When you're in excruciating pain you barely notice that a giant needle is being shoved into your spine. When you're not in pain, um, you notice. The whole thing is pretty gross since I can hear the needle grinding into my bones. Kathy and Roger say many times that I'm "about to feel a lot of pressure." "Pressure" is apparently code for "this is going to hurt like hell." I think I scream "ouch!" several times, but then it's over. My back hurts as I get up to use the bathroom for the last time before I go into surgery. When I come out of the bathroom, there's a wheelchair waiting for me and I'm wheeled into the operating room.

I'm transferred to a bed while the doctors are preparing the room. As I'm staring up at the stark white ceiling with alien looking fluorescent lighting, I can't help but think how unnatural this all is. It's so far from my wanted natural birth at home in a bathtub. True I'll suffer no pain, but the sterile hospital and planned birth is so odd. I can hear the doctors setting up all of their equipment and the chatter of their conversation. Roger and Kathy are discussing food. One of my favorite topics. Roger is telling Kathy about a Chinese dumpling restaurant in Monrovia. I don't know where Monrovia is, but ask if it has soup dumplings. Roger says it does and then almost simultaneously we both ask the other if s/he has been to Joe Shanghai in New York. We both have and agree it has the best soup dumplings ever. We also discuss Pizzeria Mozza and our favorite burgers (In n' Out because neither of us like thick patties). Roger and I continue to chat food while Dr. Ottavi says she'll have to write all of these restaurants down later on. And then it's time to begin.

Boris isn't in the room yet and before he arrives I smell burning. It's disgusting. Within a minute though, Boris is by my side and tells me to try not to smell anything. He knows me so well. Apparently, I've already been opened up (hence the burning smell. I just didn't realize it was my flesh). I ask for more drugs several times as the "pressure" I'm warned about hurts. After what seems like too long, Dr. Ottavi says "we're close to the baby. Just a few more minutes." And then I hear the best sound in the whole world. Crying. Loud, strong, healthy crying. Although Dr. Ottavi was under strict instruction to clean Miles off before handing him to me (yes, I'm his Mom and love him no matter what - but if I have the choice I'll skip the blood and goo from childbirth), she hands my baby to me immediately. Blood, goo and all. I sob and sob as I look at his perfect little face. "Is he okay," I ask her? "Does he look healthy and normal?" "Perfectly," Dr. Ottavi boasts.

"What's his name?" she asks. "Baron. His name is Baron."

Boris and I take turns holding Baron as I'm closed back up. And then we all go to the recovery room. I hold Baron for 2 of the best and most tender hours before he and Boris go to the nursery for his first examination and bath. "Hurry back," I tell Boris as they walk away. "I want to hold him every second I can."

Dr. Ottavi comes to say goodbye to me before she leaves the hospital. My eyes well up with tears as I tell her that I worship her and am so appreciative of everything she has done for me and Baron. And how relieved I am that he's healthy and perfect. "I worship you, too," she says as her eyes also well up with tears. "You are so brave," she tells me and kisses my cheek. "I know you have a long, long road ahead of you with a lot of uncertainty, but you have come so far and what a relief to know that Baron is here and safe and healthy." What a relief indeed.

But Boris and Baron are gone for way too long. I start harassing the nurse after 20 minutes asking what's going on. "Baron's having a little difficulty getting warm," she says. "He's under the heater. Not uncommon at all." That doesn't sound so bad. But the minutes continue to slowly pass and I'm still waiting to get him back into my arms. After an hour I can't take it anymore and I ask the nurse to get Boris. Boris comes in to tell me that Baron is still having some difficulty breathing and the nurse wants to take him to the NICU for examination. My heart sinks. This can't be happening. I am terrified that something is terribly wrong. Boris tells me that he's going to the NICU with Baron and will come back with more information.

Another hour passes. I'm wheeled up to my room. It's been 2 hours since I've seen Baron and I'm dying. Dying. Finally Boris appears. "Baron is still working too hard to breathe," he whispers. "The doctors took a chest xray and there are some patches on his lungs that could be a sign of infection. I start crying. "I can't believe my baby is 4 hours old and has already had an xray. This is all my fault. I've ruined his life." Boris reminds me that he wouldn't have a life at all if it weren't for me and says that the neonatologist will be in shortly to talk to us. Dr. Trintou is blunt and to the point. "Your baby will be just fine, but he'll need antibiotics. We're waiting for results from his blood test to know how long." I learn that Baron will have to stay in the NICU for the night.

I am beside myself. Babies should be held by their mothers when they are born. Not whisked off to a cold and sterile room with strangers while medical tests are performed on them. This is so far from what I had envisioned. I was to have a perfectly healthy baby whom I would hold non-stop for 3 days in the hospital before we were allowed to go home to enjoy a week and a half of family bliss before I start chemo again. Now I'm in a room without my baby and don't know how long he and I will be separated. And I still have almost zero information about what's actually wrong with him and why he's in there at all. My nurse comes in to take my vitals. I tell her that I need to go to the NICU immediately. She tells me she has to find a wheelchair for me. I wait. And wait. And wait. Almost an hour passes. I lose it. I tell her that it's been 5 hours since I've seen my baby and I have to see him NOW. "We just need a wheelchair," she says and smiles." "Well you have to find one now. Or I can walk," I tell her. She doesn't think I can walk since I had massive surgery a few hours ago, but she doesn't know me. They could have cut off my legs and I could still walk to see my baby. "I can walk," I say again. She says no. "Or you can wheel me in my bed and then I'll just take a few steps to a chair in the NICU." She says no. "My parents have a wheelchair at their house. They can bring it here." She says no. So I have no choice but to cry and say "I have cancer and am starting chemo in 2 weeks. I will have far less time to be with my baby once that happens. So I have to see my baby right now." A wheelchair appears in my room 5 minutes later.

After 5 hours, I finally see Baron again.

To my Miracle Warrior

2009-02-16T23:54:00.000-08:00

To my Miracle Warrior,

I haven't slept in days. I am too nervous and excited to meet you. I lie in bed with my heart pounding thinking about the moment I will see your face and hold you in my arms. Although I haven't met you yet, I am already so in love with you and think you are truly amazing. You have endured so much already and yet you fight and grow and thrive and are a constant reminder to me that I have to live. I am terrified that the doctors are wrong and that you won't be perfect and that it will be my fault. I hope that someday you will understand that I have done, am doing and will always do everything I believe is best for you and that everything I have done, am doing and will do is out of the tremendous and overwhelming love I have for you and your brother. The two of you have pulled me through the most terrifying and challenging period in my life and for that I am so grateful.

Tomorrow my life will change forever. I will be the mother of two. After 10 long months, I will finally see your precious face. Miles will be a big brother. I've cried all day thinking of how lucky Miles and you are to have each other. And how sad Miles may be to have to give up his place in the spotlight. I sat with Miles tonight and kissed his little face and told him that tomorrow he'll get to meet you. He smiled, patted my belly and said "baby." Baby Miracle Warrior. We all can't wait to meet you. You are a miracle. You are a warrior.

I love you more than I can ever properly express. I love you. I love you. I love you.

And I will see you tomorrow.

The Beginning of the End

2009-02-09T15:29:00.000-08:00

The week before Miracle Warrior (who I've begun calling MWFS for Miracle Warrior Fiedler Shimanovsky) arrives I have a slew of doctors' appointments. Everyone wants to see or at least speak to me before I deliver. First, I have a consultation with my new surgeon, Ed Phillips. I haven't been to the Breast Center in at least a month and the receptionist compliments my hair as I sign the necessary paperwork. I'm led to one of the examination rooms and am introduced to Dr. Phillips' assistant. She needs to update the system and asks me a zillion questions, most of which I've answered before. I'm annoyed and hate having to answer them, especially because I know I'm going to have to answer them all again once I meet with the doctor. Plus, some of the rote questions are so fucking dumb that quite honestly I don't know how to answer. Like "do you have any pain." Um, what kind of pain? MWFS is ripping my pelvis apart. Does she want to know about my vagina pain? Emotional pain? I'm afraid I'm going to die. That's painful. I have to ask her to clarify. She means cancer pain. I'm not sure what that means but I say no. After at least 30 minutes, I've answered everything and she leaves.

Dr. Phillips enters the room and gives me a hearty handshake. He's a stout man with a ring of white hair on his mostly bald head. He is not surgeon-like at all. He's warm and asks me several times how I'm feeling and doing and holding up. It makes me uncomfortable to have to say "I'm hanging in there" so many times. The more I say it the more I wonder if it's true. We go through my "case" and he examines me. We discuss radiation and he suggests that I speak to Dr. Botnick again about how necessary the radiation is and says that in his opinion, radiation will make any slight lymphedema I have worse. Ugh. He asks about my plan for reconstruction and says that he totally agrees with my decision to have expanders/implants instead of a more complicated flap surgery that entails a lengthier and more difficult recovery. I had been warned that I might need a blood transfusion during the mastectomies. Blood transfusions scare the shit out of me so I ask him if I'll need one. "Definitely," he says. "It's not 100%, but close. With the removal of two large breasts, it's almost a certainty." I'm so upset. I ask if I can donate my own blood. He doubts it since it's too early to donate now for a June surgery, plus I'm pregnant and MWFS needs all of my blood and I'll need it for my c-section. Then I'll be on chemo and my counts will be all fucked up. He suggests finding family and friends who will donate blood for me. I know I could have 98730023 pints of blood donated in a second, but I'm still really upset and really scared. If there's a .0001% of anything going wrong with the donated blood, it will happen to me.

The meeting with Dr. Phillips takes about 45 minutes and then we're done. It seems strange that we meet for such a brief period of time for such a long surgery, but I guess there's not too many variables for him. He tells me that he books up far in advance, so I need to set a surgery date with his assistant. I ask him how we pick a date when I don't know exactly when I'll be done with chemo. Plus, what if I need longer than the standard 2 weeks to recover before surgery? Will I have to wait months before my operation?? He promises that he would move heaven and earth for me and would never make me wait for any prolonged period of time to get this over with. "You've been through enough," he says. Damn straight.

I have a short period of time to spare before my next appointment of the day with Dr. McAndrew. I call Dr. Botnick to discuss my radiation therapy. He's not in the office but calls back within minutes. I ask him the details of my therapy. What exactly will he be radiating? Exactly how many rounds? Is he sure I need it? How are my odds of living improved with radiation? What about lymphedema and other side effects? Dr. Phillips had mentioned that in his opinion, if the lymph node near the clavicle is radiated the risk of lymphedema is high. After I spit out my 20 questions, Dr. Botnick begins by saying "let me remind you that you absolutely need radiation." I know. I know. I tell him that Boris has already told me that he will kill me if I don't get it. "And I'm second in line," Dr. Botnick says. He goes on. "I'm being conservative with numbers but your chances of survival are increased by 2-4% with radiation. But more importantly, your chances of a localized recurrence are decreased by 20%. If the cancer recurs in a local lymph node, which is more likely without radiation, your chances of survival are much lower. You have to do everything you can to prevent the cancer from coming back. That's why you're having radiation. Forget about everything else." He tells me that if my arm isn't significantly swollen when I start radiation (it's not - in fact during my most recent lymphedema treatment, the therapist measured my arms and they are the exact same size except for a .05 cm. difference in my wrist!) then radiation shouldn't change that (but many breast cancer patients I am friends with disagree). I guess we shall see. Dr. Botnick also tells me that he wants to meet with me before I have surgery. He still doesn't think I need a double mastectomy. "Just promise you'll call me before you do anything." Although there is nothing on earth he can say or do to change my mind, I promise.

Then I go to Tower to meet with Dr. McAndrew. Amazingly I only wait 5 minutes before seeing her. We discuss MWFS and then it's down to business about my second cycle of chemo. I will be receiving 2 chemo agents: taxol and carboplatin. She tells me that most of the research shows that weekly taxol is not only more effective but easier to tolerate. Done. However, most of the research on carboplatin is based on doses every 3 weeks. She has many patients who have received weekly doses and she believes that it's very effective, but there's not much data yet to verify this. Fuck. If there's no data, why think it's okay? She also tells me that although 12 rounds is optimal, I may only have 9 depending on how I tolerate the agents. The neuropathy can get so bad that it could cause permanent damage. And the risk of infection is incredibly high. So if I get a fever or infection that turns septic, the schedule and rounds will change. Fuck. Fuck. Fuck.

Before I leave I have a blood draw and set up my scans. The nurse taking my blood compliments my hair and how much has grown back. Then she says, "you know it's going to fall out again, right?" Ugh. Yes, I know. She tells me that when I'm setting up my chemo schedule, to set up the first treatment as early in the morning as possible. "The first infusion can take all day." I don't understand. She explains that many women have an allergic reaction to the drugs (including shortness of breath, skin reactions, burning and a host of other really pleasant things). "If you have a reaction, we stop the infusion, watch you, then start the infusion again when the reaction subsides." Jesus Christ. I still can't believe this shit.

I set up my scans and as the nurse is telling me what I can and can't eat before each and how long they will take (one of them takes 6 hours!) I just stare at her blankly. "It's so surreal setting these all up," I tell her. "I just can't believe these scans are for me." But they are.

The rest of my week is an emotional roller coaster. I am getting more nervous and excited for MWFS' arrival and more depressed and nervous and sad that I start chemo again on March 2. Just 2 weeks after I give birth. I didn't realize how horrible I felt on chemo until I wasn't on it. I've been feeling so good and happy these past few weeks. And now I'm just so sad to know that I'm going to feel like death again so soon. Maybe worse than death. Who knows? I hate the unknown. I hate chemo. I hate cancer.

But setting up my scans and second round of chemo means that I am approaching the beginning of the worst part of my treatment. The sooner it starts, the sooner it ends.

Our First Withdrawal from the Karma Bank

2009-01-28T13:34:00.000-08:00

My mom's surgery goes remarkably well. There are no complications and from what the doctors could tell at the time of surgery, there was no cancer. Phew. I go to see her in the recovery room. She looks amazing. Her face is full of color and she's pretty alert considering she's just undergone a 5 hour operation. The narcotics haven't worn off yet and she repeatedly tells me that she can't stop talking and that I look beautiful. If she's going to repeat herself, I'm glad it's going to be complimenting me. Her plastic surgeon, Susan Downey, used an anesthesia pack not used at Cedars and my mom swears it's a miracle. She tells me over and over again that she has no pain in her stomach and only a tiny bit in her breast (in addition to a mastectomy and reconstruction she had the muscle and mesh in her stomach that weakened from her TRAM flap 10 years ago tightened). She also tells me over and over that I need to use the pack for my C-section and mastectomies.

Hours later when I'm leaving the hospital, I decide to see if my buzz cut and big belly can still get me free (or almost free) parking. I've parked in the South Tower lot of Cedars clearly marked for Admissions. I go to the front desk and ask the clerk to validate my parking ticket. He asks me what I'm here for. I tell him that I dropped my mother off for surgery. "When?" he asks. "Early this morning," I tell him (it's currently 1000pm). "Have you been here all day?" he wants to know. "I haven't," I respond. He validates me anyway. The validation means I only have to pay $4 instead of $15. Whoo hoo! When I show my ticket to the clerk at the parking lot exit, he smiles and waives me through. Maybe he thought I was sick or possibly returning from my tour in Iraq, but regardless, I leave without paying a dime, which makes me smile.

I don't know if it's the pack that's a miracle or my mom, but she gets the okay to go home 24 hours later. She had been told to expect 3-5 days in the hospital. She's thrilled and we are, too. The other thrilling news for me is that her doctors think it's a great sign for me that she's been cancer free for so long while having the BRCA1 gene. Even though my numbers suck, they tell her that those numbers are culled from a large genetic pool. She and I share the same mutation and similar genes, so most likely that's good news for me. Another phew. But 4 days later, Dr. Funk calls my mom to tell her that she definitely made the right decision by choosing to undergo the prophylactic mastectomy because the final pathology report revealed precancerous cells. Those cells would have become cancer in the next few years. So I guess that's 1 good thing about my cancer. It (and I) spared my mom from having to suffer through cancer again. I'm nervous that maybe her pathology report means something bad for me, but Boris reminds me that those cells were not a recurrence of her original cancer 25 years ago. They were the beginning of a new, primary cancer, which isn't that surprising given the BRCA1 gene and its statistics. He reminds me (and Dr. Funk confirms) that by removing both breasts, I'm reducing my chance of a new, primary cancer to almost nothing. Rude that it isn't nothing, but it's the best I can do. It still doesn't help my crappy numbers in terms of recurrence and death, but that's where my mom's genes come in (I hope I hope I hope).

So finally...some good news. My mom is doing great, isn't getting cancer again, and hopefully I will follow in her footsteps.

The other bit of news (I think it's good) is that I've changed my mind about plastic surgeons....again. My mom had such a great experience with Dr. Downey and Dr. Funk was very impressed with her work so I'm going to use her. When I met with her and explained my hatred of implants, she showed me several pictures of women who had some slope in the shape of their breasts which is what I'm hoping for (as opposed to the coconut shells on the hula girl shape). I know that Dr. Slate's work is amazing and reliable, but I'm hoping that maybe I can get a more natural look. So now I really have made all of my decisions (although I certainly reserve my right to change my mind for the 89736349th time). I have a new surgeon and plastic surgeon ready to go in June.

Now I just have to get through the next 6 months with a newborn and chemo and crazy surgery and radiation. I feel a second withdrawal coming on soon.

Happy New Year?

2009-01-21T14:01:00.000-08:00

I've often found that when someone is making up an excuse, they tend to lay it on so thick that it makes the lie that much more obvious. Instead of just saying "sorry I'm late, I should have left more time for traffic," he or she might say, "sorry I'm late, I lost my keys, got rear ended, the freeways were a parking lot and then I had to rescue a busload of orphans." When I think about how to describe the first month of this year, I can't help but feel that people will think I'm adjusting the plot for dramatic effect. I'm not saying that 2009 is worse than 2008, but let's just say we're not off to the best start. So much for leaving all the really bad shit behind with last year. Of course I knew that along with starting out the new year with a new baby, I'd also be starting it out with cancer and more treatment. But I didn't know that along with treatment I'd be starting off the new year with a lot of unexpected, and to put it bluntly, fucked up, drama. If it wasn't actually happening to me, I don't think I'd believe it.

First, my mom had an irregular mammogram of her remaining breast. Whatever it was, it was too small to biopsy and according to her follow up tests, isn't cancer. But, we did get confirmation that she is a gene carrier (she and I not surprisingly have the same mutation). She's to be monitored more closely. Dr. Funk suggested a prophylactic mastectomy given the incredibly high chance of my mom developing a new cancer in her breast (87% by the time she's 70) but my mom didn't want to hear it given everything I'm going through. Worst timing ever. But, I told her that she has to have the surgery tomorrow because I'm going to need her when Miracle Warrior is born. It's never going to be a good time and at least I'm doing well at the moment. After his arrival, it's going to be chaos and chemo. I remind her that as much as she hates surgery and lord knows she's had enough for a lifetime, in case she's forgotten, cancer and especially chemo are worse. So, she's scheduled to have a mastectomy and reconstruction next week. Because it's not enough for 1 family member to have to go through this at a time.

As if that's not enough, in a random IM chat with my mom (my cancer has catapulted my mom into the 21st century and she now emails and IMs with me regularly) she mentions that Dr. Funk is pregnant with triplets who are due in June. What!? Not to be totally selfish, but my surgery is scheduled for June so what does this mean for me!? I email Dr. Funk and of course congratulate her but ask if I need to find a new surgeon. I'm not sure why I ask because I already know the answer. Even if she wasn't delivering in June but anytime near June I wouldn't use her. I've been a new mom and only to 1 child and my brain definitely didn't function normally. So there's no way I'm letting a new mother of 3 perform an incredibly complex, lengthy surgery on me. Dr. Funk asks me to find out if I can wait 4-6 weeks to have my surgery and if not, she recommends a few surgeons for me to meet. I don't want to wait 5 minutes to finish this hellish process, so there's no way I'm waiting a month (and Dr. McAndrew says absolutely no way), plus we have the whole new mom of triplets doing my surgery issue (I hope that's not sexist of me - I was a Women's Studies major and basically have an all female medical team but....), so I have to find a new surgeon. I tell Dr. Funk that I love her and want her to be my BFF, but I have to end this chapter of my life so I'm going to find someone else. So much for being done with all of my decisions. Thankfully there are other great surgeons to choose from although I kindof want to cry that I have to start all over again with someone else. Dr. Funk responds "well BFF, TTYL." Love her.

And if that's not enough, I had to give Norman away. He peed around the house so many times that I just couldn't take another drop. In the last 2 weeks he peed on the couch 3 times (once with me on it and quite honestly I was in such shock that I couldn't even move and didn't know where to begin the cleaning process. Me? The couch? Just shoot me.), knocked over my favorite vase because he prefers to drink water out of freshly cut flowers in expensive home decor and left poop bits scattered around the house, shoes, etc. (sometimes by accident, other times, we suspect not). I have no immune system and am not supposed to clean the litter box let alone mop urine and feces up several times a week. My new hero, Dana, is very involved with a cat sanctuary that she swears is amazing (and I trust her completely). She says they will take such good care of Norman and maybe even find him a new home. She took him to the sanctuary on Saturday. I cried my eyes out as I said goodbye to Norman and apologized to him, explaining that I just didn't know what else to do. 2 days later, Dana sends me the following email from the head of the sanctuary:

Norman is doing terrible here - he is extremely stressed and actually very violent. I'm sure in time he'll calm down, that's not the kind of cat he is, it's just a very hard transition. They've had to skip some of the shots - nobody can handle him without risking going to the ER.

And Dana tells me that he hasn't eaten anything at all. So now I feel even worse. I just cry and cry. We decide the best thing is for Norman to spend a few days at my parents' house. Even though he'll mostly be alone in a room upstairs, it won't be nearly as stressful as the sanctuary. Then the most amazing thing happens. A colleague of a dear friend's mom offers to adopt Norman - urine, diabetes and all! She and her husband are saints. They have a 20 year old cat and a 2 year old dog, but no kids to terrorize him. Norman is apparently hanging in there. He's not thrilled, but is eating a little even though he's hissing at everyone. He's even taken over the dog's bed which is a great sign. Even better though, the couple is committed to making Norman part of their family and I'm so relieved. Now I just have to deal with Mattie losing her best, although sometimes abusive friend of 12 years. Boris amazingly agreed to let her sleep with us as long as she didn't wake us or Miles up, but that sadly only lasted for 2 nights. So now Mattie has to sleep downstairs by herself which also makes me want to cry, but not as much as listening to her clean herself (one of the most irritating noises ever) at 3 in the morning.

But why should I expect things to go well? Not 2 days later, I get a call from the saints informing me that Norman has stopped eating and is incredibly lethargic and barely moving. They're going to take him to the vet. The vet calls me Monday evening to tell me that Norman needs food, hydration, insulin therapy and will have to spend several days in the hospital at the cost of $1200 a day. Holy shit. I ask if what they're doing will jump start his appetite or is the problem that Norman is never going to be okay with anyone else but me (even though I don't think he was very happy here, hence the intentional urination on me and my things). There's no way for the vet to know that, but he does tell me that even though Norman needs medical attention stat!, he's hissing and violent and really is his own worst enemy. Fucking great. My options are to spend a fortune on a 13 year old cat who is likely to be back in the hospital days later from his hunger strike, or put him to sleep (why do we call it that when really, my option is to kill him). I'm so stressed out and don't know what to do. I can't believe I have to make this decision in like, 3 minutes. I tell the vet not to do anything and I'm coming to see Norman.

Boris and I get to vet's office just as they're closing. The saints are there and they couldn't be nicer and sorrier that things went south. I pick Norman up and hold him for a few minutes. He just lays there. So not Norman. Even though I am the only person who he loves, he never, never, never lets me hold him. He's no longer himself. He's sick. And old. And I want to die. I'm pretty hysterical but decide that I have to put myself first for once. I've put my health at risk to clean his urine and feces and give him shots that I wasn't supposed to and I can't do it anymore. In 4 weeks I'm going to add a newborn to the mix and know that I just can't do it all. I tell the vet that I'm going to put him to sleep but that I want to hold him and be there with him. The vet explains that they will have to put an i.v. in Norman and sedate him first because they can't risk any harm to me. Fine. They take Norman to put the i.v. in. It seems to take an eternity and through my sobs I ask Boris to find out what the hell is going on. I want Norman back. Now! Boris returns with the vet and with Norman. They've already sedated him and I'm suicidal. This is not the way it was supposed to go. The vet seriously asks me 20 times if I have any questions at this time. I'm sure it's protocol , but I wish he'd shut the fuck up. What questions could I possibly have and I've already said no 20 times. Why ask again? He administers the shots and within seconds, Norman is gone. I hold him sobbing for a while. But it's for me, not for him and it was supposed to be the other way around. I wanted to hold him during the stressful parts for him, like the i.v. and sedation. But I guess asking a vet to let an 8.5 month pregnant person with cancer (I showed up with my G.I. Jane buzz cut) hold a violent cat while getting an i.v. is a bit much?

So on top of pregnancy and cancer and my mom having surgery, I just killed my cat who I loved tremendously for 13 years. I'm a fucking wreck. I'm wondering what else can come my way and how much more I can take.

And just in case that's not enough, we received a second letter from the I.R.S. asking for our tax return from another year. When Boris called about the first letter, he was told that the I.R.S. needed our return for their investigation of another tax payer. But now this? Whatever. At least it doesn't require anything physically painful or death.

And speaking of physically painful, I have a new unbelievably torturous pain in my pelvis. It feels like someone (I'm assuming Miracle Warrior) is pulling my bones apart. Actually, it's more like he's pulling them down into the ground and somehow I hope holding up my vagina will help the pain when I walk. It doesn't. I just look like a giant asshole and Boris keeps asking me what the hell I'm doing and can he help. I realize it doesn't sound like it, but I'm not complaining, just sharing. I'm still so glad to be pregnant that I don't care how painful it gets, but it's just something to throw into the mix.

So there's my lengthy, piled on set of issues. It's just sadly all true. Happy fucking new year to me.

So far 2009 is off to a great start. At least it's not uneventful. And despite the drama and pain and death it's not all bad. I'm feeling much better. Just exhausted, but not poisoned or on drugs, so that's good. And at my most recent blood draw at Tower, I talk to Angela and learn some news about my second round of chemo that makes me feel better about it. She tells me that if I choose the weekly chemo regimen, I'm not likely to feel like death all the time. Just for a day or two. Plus she says that in her opinion, the regimen I just completed is much more toxic with far worse side effects and I did so well with it that maybe I'll have a repeat performance. Plus, she says I won't need the really horrible steroid that will cause all my bones to hurt. If my counts get too low, I will need to boost them up, but she'll use a different, less painful steroid and a smaller dose of it. And I won't get it automatically. We'll just have to see how I do. Sad that that is good news, but it is.

Plus, there's the overwhelming daily joy I get from Miles. He just gets more amazing by the second and makes me laugh and smile all the time. Boris tells me that although this is undoubtedly the most challenging and saddest time in his life, it's also the happiest. He and I have a weekly date night and despite the intense stress we're living under, we still love each other fiercely and are doing the best we can. Miles brings him endless joy and he's so excited to meet Miracle Warrior. Me too.

And speaking of the miraculous warrior, I just had my last appointment with Dr. Silverman before I see him the day before my scheduled C-section to ensure Miracle Warrior's lung maturity. Miracle Warrior is perfect. Perfect! Dr. Silverman actually says "this kid looks great and I am really really happy." If he's happy I am ecstatic. And Miracle Warrior is still big for his age. He's just under 5 pounds at the moment so he should be about 7 pounds when he's born. Had I carried him to term, he'd be 9 pounds, just like his perfectly healthy and amazing brother. Dr. Silverman tells me how great it is that I had no growth restriction at all. "Since the placenta consists of rapidly dividing cells and the chemo is attacking rapidly dividing cells, it's a risk," he says. It is great news, but I ask him if that means the chemo didn't work. Of course I have to take good news and find something alarming about it. But it is a little scary, right? He tells me that chemo affects everyone differently and that we could take 5 women staged exactly the same and give them the same chemo regimen and they will all react differently.

I'm karmically due for some good news and good times so hopefully my newly sprouted hair and large, healthy baby are signs of good things to come - not my treatment failing. One of my closest friends told me that Miracle Warrior wasn't affected by my treatment because he was meant to be. I think she's right.

The End of the Beginning

2009-01-10T20:44:00.000-08:00

The day after round 6 I don't feel nearly as terrible as expected. Round 5 was way worse. I couldn't really eat my new year's eve dinner and needed to get air several times to quell the nausea, but we did venture out with friends and I was awake (although not so pleased about it) at midnight. The next few days weren't the best, but not the worst either, so it could have been worse. The doctors' appointments have started tapering off too, which is scary and a relief all at the same time.

I meet with Dr. McAndrew 1 week after round 6 and have to wait forever. I thought cancer had taught me patience for doctors, but I am impatient and annoyed. She's pleased with my blood results and says that she doesn't need to see me again until I'm about to deliver. "What?," I ask her. "Don't I need to be monitored? What if the cancer comes back? Don't you want to take some blood or something?" She smiles and tells me that my white blood counts are higher than most people's are normally, and I'm in my low immunity week, so it's not necessary. And sadly, there's really no way to know whether my cancer has come back or has metastasized until I can have my scans, which I can't do until I deliver. She tells me that we can set my scans up now though and again tells me how much better I'll feel once I have them. I guess I'll feel better if they come back clear, but not so much if they don't. The only reason I need to come back to Tower over the next 7 weeks is to have my port flushed out. So scary. And so nice.

We spend a long time discussing my next chemo regimen and the options I have. I can either have smaller, weekly doses that I am more likely to tolerate well, larger doses every 3 weeks if I don't want to come to the office every week, and larger doses every 2 weeks that I probably won't tolerate well at all, but I'd be finished with treatment in 2 months instead of 3. Dr. McAndrew warns that this condensed "dose dense" treatment is particularly brutal because the body really needs 3 weeks to recuperate. She says that no studies indicate a difference in the results of the treatments and that we can discuss as we get closer to March, but that the decision is mine. I email my friend who is a fellow at U.C.I to see if Dr.Mehta , who I met with before beginning treatment, has any insight into which course of treatment is best prognostically. I wonder if it's better to feel pretty crappy for 3 months or incredibly crappy for 2. Boris and I will discuss.

Now that I only have 1 or 2 doctors' appointments a week instead of daily appointments, I decide to cut back on acupuncture to take advantage of my time off. The fewer appointments the better. For some reason, even though I'm super anal and so good about taking medications, I can't seem to remember to take all of my herbs. Each time I see Dr. Dao he asks me if I need more and usually I don't. He asks me how I'm feeling and about my appetite. I tell him I'm feeling pretty good, just tired, and my appetite is fine. He asks me what I've been eating. "Macaroni and cheese," I tell him. He looks up at me with a quizzical look and smiles. "Sharon, you know that's all fat, right?" "Yes," I tell him. "And it's delicious. I'm going to have to eat the saddest most un-delicious food for the rest of my life, so please don't make me feel bad about my macaroni!" He laughs and says I can eat anything I want but warns me that after I've completed chemo, he's putting me on a strict diet. Hurray. He also tells me that I should drink freshly made vegetable juice daily. "Nothing sweet," he says. "Greens, celery, cabbage, ginger, carrot tops." I can include a beet for flavor. I promptly order a juicer. The juice is one of the most disgusting concoctions ever. It takes me 1/2 a day to drink 1 glass. Now I cheat and add a carrot and a pear and it's much more tolerable. So tolerable that Miles will occasionally take a sip (although he usually ends up letting it dribble out of his mouth all over my clothes or floor).

I also use my time off to meet Susan, a woman I was introduced to when I was first diagnosed. Like me, she was diagnosed with a triple negative tumor during her first trimester, and like me, she opted to keep her baby while battling the disease. Unlike me her cancer didn't spread to her lymph nodes. She has been a source of strength, inspiration and information to me. When I first spoke to her she told me that after going through this, I will be superwoman and there won't be anything I can't do, there won't be anything that's overwhelming or daunting (except beating cancer). It is so wonderful to put a face to her voice and emails and best of all, I meet her gorgeous, perfectly healthy, happy little girl who just turned 6 months old. Susan and I could talk for hours about our experiences so far, our fear of the cancer returning, our babies. She shows me pictures of what she looked like pre-cancer. Her now dark brown, wavy short hair used to be straight and blond. I wonder what I'll look like when my new hair returns (which, thankfully, it has started to do! I look like G.I. Jane again. My hair is dark but too short to tell whether it's straight or curly. I can only tell that it's not as thick as before, although I've been told that will change.).

We spend a long time talking about how different our second pregnancies were/are from our first. With Miles, I knew his exact gestational age every day of my pregnancy. I knew how he was developing every day of my pregnancy. I knew when his bones were developing and when he was getting eyelashes, nails and hair. I thought about being pregnant every day. This time....not so much. I've had to ask Dr. Ottavi several times how far along I am in my pregnancy. I have no idea what Miracle Warrior is doing, I just know that he's busy and miraculous and kicking ass (often mine) every day. That's really all I care about. Miles' room was in perfect order a month before his due date. Miracle Warrior's room looks like a bomb of baby clothes exploded all over it. He has no furniture. And he probably won't until after he's born. And as much as I want to nest, and swear that our lives might come to an end if I don't have a chair for his room prior to his arrival, I know that he doesn't need furniture. He just needs me and Boris and some diapers.

I'm also using my time off to obsess about important things like new end tables for the bedroom, more pillows for my couches and art to hang on the bare walls of the house we've been living in for over a year. I'm driving Boris nuts with my daily emails and questions about decorating. I'm trying to convince him to let me buy an amazing orange leather chair that I "need." He swears it will go on sale and I explain to him that things I want never go on sale. A wise friend recently told me that if you have taste, what you want doesn't go on sale. So true. And so sad. I thought we were in an economic crisis but the stores that I want to buy things at apparently aren't suffering. At least not enough to discount the items I want. Sigh. Even though I can't buy anything I want at the moment, I'm enjoying browsing Elle Decor and Cisco Brothers instead of medical journals and cancer websites. It just feels so much better wondering which chair I should buy than which surgeon, chemo regimen, reconstruction technique, and the million other surreal choices I've made in the last few months.

The Plastics

2009-01-03T20:52:00.000-08:00

Let me begin by stating that I don't like implants. Neither does Boris. Actually, we hate them. Hate hate hate. Sorry if I'm offending anyone out there but I just don't get them. Boris and I are often horrified at what women do to their faces and bodies and don't understand how anyone finds it attractive. Urth Caffe is one of our favorite sightseeing venues. Women with lips the size of my head and breasts that defy the time/space continuum strut by and Boris and I just stare. We call them our girlfriends, and less frequently boyfriends. We sing it under our breath to each other "your girlfriend or your boyfriend," and as they walk by with their plasticky, taut faces, and basketball boobs, Boris and I only have to hum the tune to know what we're saying. I recently forced Boris to watch Desperate Housewives with me. In one scene, Nicolette Sheridan was wearing an incredibly revealing dress with a plunging neckline that revealed two perfectly hard, round balloon breasts with a huge space in the middle. "Oh my god. What if I look like that, Boris," I lament.

Friends trying to find some optimism about my situation often say things like "you're going to have the tatas of a 20 year old," or "you're going to have the perkiest boobs ever," or "when we're 50 and my breasts are in my belly button, yours will be perfect," etc. etc. etc. My boobs are already perky and yet they're still subject to gravity, which is just the way I like them. So it's with great sadness and trepidation that I start my research on reconstruction and my quest for a plastic surgeon.

After meeting with 8 plastic surgeons, yes 8, and reading everything I can find online (which I don't suggest because the web is full of horror stories and pictures), this is the world of reconstruction as I understand it. There are 2 main types of breast reconstruction: implants and flaps. Implants are, well, implants. There are 2 procedures that can be done: 1) expanders are placed under the chest muscle and slowly filled up with air until the chest muscle is sufficiently stretched, then the expanders are switched out for final implants or 2) the final implant can be placed on top of the chest muscle and covered with an acellular skin (skin culled from cadavers then washed until no cells remain). The latter is far easier and less painful, although there is no consensus as to which holds up better (no pun intended). Flaps are muscles taken from either the back (a latissimus flap), tummy, butt or inner thighs. All are complicated and lengthy surgeries and will require longer recoveries. Flaps created from the tummy risk loss of muscle use and flaps from the butt take almost 20 hours of surgery. The latissimus flap is the most common flap surgery for women who don't have enough stomach fat for 2 breasts, but the muscle isn't big enough to create a medium sized breast, so an implant is still needed. The theory is that the implant will tolerate radiation better because it will be placed underneath a larger, healthy muscle (as compared to the chest muscle which isn't very large). But all the risks of implants with radiation still apply.

All 8 plastic surgeons recommended something different for me. Of course. Why should this decision be any easier than any other I've had to make? They all agree though that I am too small for a tummy flap (which I promptly inform Boris of after each appointment) and that the butt/inner thigh flaps are probably far more complicated surgeries than I want. Plus, none of them actually do very many of them so I'd have to go to New Orleans to have the best doctors. I haven't been to New Orleans yet, but am not so interested in going to have multiple surgeries. Interestingly, the recommendations regarding implants versus a latissimus flap are split depending on the sex of the doctor, except for Dr. Slate. He is the only man who recommends the expander/implant surgery. All the others recommend the latissimus flap, the reason being that radiation and implants don't mix well. When an implant is radiated or inserted into radiated tissue, the chances of scar tissue contracting around the implant are incredibly high. The contracture can cause pain, asymmetry (the tissue becomes firmer and the implant rises up and becomes more round) and the breast to feel more firm (um, as if implants aren't firm enough already). I had never felt one before and cried when I did. These surgeons said that the latissimus flap is far more natural looking than an implant alone (although the procedure would still require an implant) and that I don't really need that particular back muscle. They all say that unless I'm a professional athlete, I won't miss it all and all minimize the giant scar the surgery will leave on my back by saying the scar is where my bra line is. But since they all tell me that I won't wear bras anymore, I'm not sure why that matters.

The women surgeons all tell me that in their business, it's just a matter of time before you think you are going to get breast cancer and if they had to have reconstruction, they would want the easiest procedure regardless of aesthetic. They all have families and children and think they need as many body parts as possible. So do I. One surgeon who I loved told me that when she goes to the beach, she doesn't want to worry about giant scars on her back (she wonders why the male plastic surgeons all say that the scars will be hidden by a bra or bikini when bras won't be necessary and most women who get breast cancer are past the bikini wearing age) and instead would like to focus on things normal women worry about, like fat thighs. Plus, while she may not be a professional athlete, she enjoys swimming and tennis with her friends and would be incredibly sad if she lost range of motion to do these things.

When I first learned that I had cancer and would lose both my breasts I wasn't going to meet with any plastic surgeons but Dr. Slate. His reputation is unbelievable and every doctor and woman I know recommended him. But when I learned I needed radiation, I decided I needed to meet with other doctors to see what my options were. Implants are bad enough when they look good but perfectly round, possibly asymmetrical grapefruits on my chest is more than I can handle. Or so I thought. My first few consultations were so depressing. The first doctor was a wealth of information and was very honest about all the risks each procedure entails. He showed me endless photos - good and bad - of his work and I cried as he flipped through the pages. He also brought me into one of the examination rooms to meet a woman who had a latissimus flap procedure over a year ago and just had her nipples put on. Her back scars were gnarly and her nipples were terrifying. They looked 12 feet long. Like little penises on her breasts. Seriously. I didn't want to be rude and start sobbing in front of her so I smiled and thanked her for letting me see her breasts, left the room and became hysterical. The doctor was so nice and explained that the nipples shrink by about 90% and reminded me that fresh surgery is never pretty. But holy fucking shit. He recommended a latissimus flap for me and said that he would place a slightly expanded expander in me at the time of the mastectomy, I would have radiation, then he would do the flap and replace the expander with an implant.

The second doctor couldn't stop talking. Although I told him I was aware of all of my options and only wanted to hear what he would recommend for me, he felt it necessary to give a lecture on the history of breast reconstruction. I was there for hours and wanted to slit my wrists. He discussed all of the trials and tribulations of implants and their history with the FDA. His conclusion: since the FDA says they're safe, they are. I had to tell him that I realize I have few options, but the FDA has a pretty fucked up history when it comes to womens' health, so their blessing means shit to me. He recommended that I have my mastectomies, radiate the chest wall totally flat (what!? - as if a double mastectomy isn't traumatic enough, he wants me to go from a D-cup to totally flat and stay flat for months!?) wait a few months, then do the latissimus flap procedure. Just in case the consultation wasn't annoying enough, on my way out, his receptionist looked at me and asked if it was "okay" for me to be pregnant and have cancer. Instead of saying "no bitch, it's not okay but I am and I do," I tell her that I'm not a doctor, but if she'd like more information from my oncologist, I'm happy to give her the number. I totally get that very few people know you can be pregnant and go through chemo and that if I'm going to be the poster child for pregnant women with cancer I need to be ready to dole out information, but do you have to ask the question in the dumbest way possible?

The third surgeon was brief and to the point. He would do the latissimus flap procedure at the time of my mastectomy. That means I would radiate healthy muscle and tissue which seems crazy to me. I am not a doctor, but why would I do that? What happens if it goes badly? I only have 1 latissimus muscle on each side, so I would have no other options. I vote no.

I decide to meet with Dr. Slate because I can't take all the flap recommendations. Plus, he's who I wanted to use initially and recently I have met several young women who used him even though they were having radiation. They are all really pleased and 2 have completed radiation and the tatas still look fantastic. Dr. Slate is prompt and wonderful. He tells me that he's going to grab my file and then we can talk for as long as we need. He means it because we talk for almost 3 hours. I ask him 98798733 questions which he answers happily and doesn't seem irritated in the least. He explains that he does flap procedures but only when the expander/implant procedure fails. He explains to me that his practice has sadly gotten younger and younger and that as active women with families, why would we remove body parts as a first option? "I know lots of excellent surgeons who recommend flaps when radiation is needed," he says, "but in my opinion they are very cavalier about the recovery and the necessity of the muscles they are removing. If you are unhappy with the implant procedure after radiation, you can always have a flap procedure. But I would make it a last resort, not a first." I agree. He also tells me that of his patients who have radiation, the vast majority aren't unhappy enough with the reconstruction results to change anything. I ask him about the cost of the procedure even though I already know he's a fortune. In total, it will cost me $25,000. He doesn't take insurance. None of the good plastic surgeons do. We hug as I leave and I'm convinced that I'm done with my search. I still have 1 more consultation set up, but my mind is already made up. I'll end up where I started - with Dr. Slate.

Of course I should never think I've made up my mind because something always changes. The next surgeon I meet with is the person who told me about the implant procedure that doesn't use expanders. She's also wonderful and concise and tells me that if she were me, this is what she would do. She would put in final implants at the time of the mastectomies. Part of the implant is covered with the acellular skin and part with the pectoral muscle. Then I would radiate the final implant. This spares me the pain of expanders and multiple surgeries. Sounds good to me. She explains that it's a not procedure routinely performed mostly because it hasn't been the standard of care and because there is a higher chance of infection. I will have to be "watched like a hawk" in the first few weeks after the surgery to make sure the incisions are clean. So now I'm thinking I will use her and do the final implant procedure. Before I leave, I meet with her patient care coordinator who gives me the price of surgery. $8,000. Hmmm..... Is she K-Mart? Her coordinator also tells me that given her experience with Blue Shield (my insurance provider) I will get $750-$1,500 from them. I think that has to be illegal. $750? The parts have to be more than that. I can't imagine any doctor in California doing the procedure for that amount of money. At least I know why no good surgeon takes insurance. It's tragic that women either have to go bankrupt trying to get decent boobs after battling cancer or have a dentist who accepts insurance and does plastic surgery on the side for $750 perform their surgery.

I call Dr. Funk and tell her that I'm confused. I tell her about my most recent consultation and ask her what her thoughts are about the surgeon and the final implant procedure. She tells me she thinks the procedure is a good one, although it's risky with radiation. But, she tells me that she can't let me use the surgeon because her work is inconsistent. I love her for being so honest. She tells me that I should meet with other plastic surgeons who might perform the final implant surgery. She recommends several plastic surgeons who primarily work out of St. John's who have great reputations, but she has no firsthand experience with them. Fuck. One of them is the surgeon who my mom used a million years ago when the tummy flap was first introduced. The quest continues.

So do the mixed opinions. I meet with 3 more plastic surgeons and speak to 2 more on the phone. Only 1 recommends the final implant surgery. The rest recommend expanders/implants. Some believe using the acellular skin is risky and offers little benefit unless my skin/chest muscle is thin while others tell me that it will help create a more natural looking breast, even in the expander/implant procedure. The last surgeon I meet with hasn't performed any reconstructive surgery since his training in medical school. I had spoken with his assistant and made it clear what procedure I was interested in and that I was especially interested in seeing pictures of women who had received the final implant surgery with radiation. I have no idea why she let me make the appointment. I'm totally over this. He did mention that he makes nipples from scar tissue as opposed to skin from the labia which many plastic surgeons use. What!? I almost vomit. My vajajay is painin' just from the thought. No one except Boris is going near the vajajay. Holy shit. I call Dr. Slate and the surgeon who my mom used - the 2 surgeons I'm deciding between and ask how they make nipples. Scar tissue for both. Phew.

I email a past client who is a plastic surgery fellow in Texas. He's been a wealth of information and referrals throughout my cancer experience. I ask him his opinion about my options and surgeons. He sends me an incredibly detailed and helpful email. It ends with the following paragraph:

If you were my patient I'd tell you to stop worrying about good boobies and concentrate on the fact that the most important thing is to rid yourself of the cancer and minimize the chances of recurrence. You can always buy yourself good boobies later. I would tell you to get the mastectomies and not have immediate reconstruction. Go through the radiation, and see what happens. In the interim, wear a prosthesis when going out in public. Then at a later date I'd book you for bilateral latissimus flap reconstruction. You'd pay only for that operation and the minor nipple reconstruction/tattooing to follow. But this is only the opinion of a first year Fellow in plastic surgery. I may change my tune as I gain more experience! I'm only proceeding in terms of the standard of care with regard to what I've seen/read so far, and the data that's been presented at meetings. Most important thing to remember is that the foremost issue is the oncologic one. The reconstruction can always wait. Concentrate on taking care of babies first!

Smart man.

But I can't go boobless for that long and I want to hope that I'll be satisfied with the easiest procedure. Since I know so many women who have used Dr. Slate, I decide to go with him. I have seen his work firsthand. He didn't introduce me to any of the women so I'm not only seeing the patients or pictures that he wants me to see. They are all happy. Even those who have had radiation (although it can take up to 2 years for the side effects of radiation to materialize). Plus, I loved him.

So 8 consultations and way too many hours, weeks, months, later...I arrive at my decision. That was the last big one I had to make. Finally.

Chemo Round 6

2008-12-30T22:08:00.000-08:00

It's my last round of chemo before I deliver. Amara is in town so she takes me. She's never been to Tower or the treatment center and she can't believe how big it is. There's a chair shortage again, so I begin treatment in a private room but don't wait long for my chair. There's no drama, just treatment. The only drama comes from Boris and lunch. When he left for work in the morning, he said I should pick any restaurant I wanted to get lunch from and he'd bring it to Tower for us. Amara and I decide we want chop salads from La Scala (sans salami) and I inform Boris. Boris however decides that parking is kindof a pain in the ass but passively aggressively asks me if I'm sure that's what I want to eat. Um, yes, I'm sure which is why I asked for it, but I don't care enough so we order Chin Chin which can be delivered. Then Boris doesn't show up until 2:00pm. Oh Boris.

I only have 2 questions. One for Anne and one for the nutritionist. My hair has started to grow back and I'm scared it's a sign that the chemo isn't working. I ask Anne. She assures me my hair growth has no bearing on the efficacy of the chemo and tells me that for some reason, lots of women's hair starts to grow back before their last round. She also assures me that it will fall out again as soon as cycle 2 of chemo starts, so I shouldn't get too excited. Rude. I speak to the nutritionist about my break. I want to know if I should start my cancer prevention diet (i.e., broccoli for breakfast, lunch and dinner). She tells me to keep eating as much protein as possible. "You're preparing your body for surgery and more chemo and we want your baby to get as big and strong and possible." So I can still eat In n' Out. Phew.

Before I know it, I feel like shit and am done. Done for 7 whole weeks. As happy as I am (and I am, I am!) I'm afraid that the cancer will come back or get smarter and stronger during my break -- the way that an infection does if you don't take all of your antibiotics. I may feel better and start sprouting hair, but maybe I'm developing some sort of cancer super strain. Anne says it's totally normal to feel afraid but reminds me that I'm in the best hands and they wouldn't have told me it's safe to have a break from chemo if they knew that it wasn't. So, that's it. Now I'm just a pregnant person waiting to deliver. A bald, pregnant person who still is afraid of dying every day, but no more treatment or feeling like crap for 7 weeks. 7 weeks!! And I get to meet my Miracle Warrior so soon. February 17 can't get here fast enough. I want to know for sure that he's perfect and normal and healthy.

Before we leave, several Tower staff members and volunteers come by to wish me a happy new year. Some ask what I'm doing to ring in the new year. I don't want to be rude or anything, but I'm getting chemo the day before, so what the hell do they think I'm doing? Dumbest question ever?

6 rounds down. Delivery, 12 rounds of chemo, double mastectomy, radiation, reconstruction to go.

Resident Evil

2008-12-23T14:31:00.000-08:00

So it's my doctor free week (sort of) meaning that I don't have to go to Tower. Instead, I have the usual appointments with my acupuncturist, o.b. and perinatologist. God forbid I actually have a drama free week. Monday started out like usual. I had acupuncture with Dr. Dao and then saw Dr. Ottavi. Miracle is doing great. I even have the energy for Pilates and then go home to play with Miles. Around 430, I realize that I've tried to pee about 27 times in a 10 minute period and think that I must have a bladder infection. Nice. I call Dr. Ottavi who orders pregnancy safe antibiotics for me. I take them at 500. But by then, I also have intense pain along the right side of my belly. My brother comes over and insists that we go to the emergency room. I think I'm okay, just in pain, but am convinced it will go away. It doesn't. I call Dr. Ottavi and Dr. McAndrew. I speak to both and both agree with Seth and insist that I go to the emergency room. Boris comes home as Seth and I are piling into his car. He jumps in and we head to Cedars.

Walking into an emergency room 7.5 months pregnant with abdominal pain is never a good thing. It's even worse when your o.b. only has privileges at St. John's. I'm ushered up to the maternity ward immediately. As I'm crying in the elevator, people are congratulating me. I realize it's normal for them to think I'm in labor, but I want to shoot them. I'm taken to a triage room. It's the ghetto and I'm very glad I'll be delivering at St. John's. A nurse enters the room and wants to know what's going on. I explain to her that I have cancer, am on chemotherapy and am having horrific pain on the right side of my abdomen. I tell her that I thought I had gotten a bladder infection about an hour ago so maybe the infection has spread seeing as I have no immune system. I explain that I am not in labor, that I know my baby is fine, that I have had a child and know I'm not having contractions and would like to see a real doctor immediately. She smiles, but says they have to ask me routine questions and need to monitor the baby. She asks me a ton of questions about my pregnancy and then hooks me up to a fetal monitor. I can't sit still because the pain is too intense and have to take the monitor off after a few minutes. I tell her that if I can't see a real doctor soon, something terrible is going to happen to me. She doesn't seem to care. The pain is so crazy that although I haven't thrown up once from pregnancy or chemo, I proceed to throw up a truly shocking amount. I fill an entire bucket and then some. Then some that ends up on the floor is ignored by the staff and Boris ends up cleaning it up because I'm so grossed out. After 2 hours of excruciating pain, a doctor comes to see me. Let me rephrase - a resident comes to see me. I answer her questions and ask her if a real doctor is coming to see me any time soon. No offense to her, but she's 12 and an ob/gyn. I want off the maternity ward immediately.

I wait in agony for another 30 minutes and then the "chief resident," also an ob/gyn comes to see me. He's incredibly handsome and I wonder if he's a fake doctor - like on t.v. His name is Jeff. By this point, I'm hoping to die the pain is so horrific and I have no patience for people who aren't going to help me. I hear Boris telling my Dad that I'm "hostile." I prefer to think of it as advocating for my rights. No one else is. I tell Jeff that I need drugs 2.5 hours ago and that I'm pissed that no one seems to care about me, just the baby. "My baby is fine," I tell him. Jeff says that I'm there as a mother too, and he needs to take care of both of us and he can't give me pain medication until he's monitored the baby for 20 minutes. "Well, Jeff," I tell him, "I've been here for over 2 fucking hours so you and your stellar team have certainly had ample time for monitoring. And please don't patronize me about motherhood. I was diagnosed with cancer and opted to risk my life to have this baby. My tolerance for pain is more than you could possibly imagine. I have all kinds of pain and side effects on a daily basis that I suffer through without so much as a Tylenol for this baby. So if I tell you that this is the worst pain I have ever experienced in my life - like more than trying to push a 9lb+ baby out of my vagina without an epidural, which yes, Jeff, I tried to do for over an hour - I am totally fucking serious and need drugs NOW." Jeff tells me that he has treated pregnant women with cancer and that his mother had cancer (thanks for sharing) and promises that I can have pain medication after the 20 minutes of monitoring. Fine. In the meantime, I ask him why no one has taken my blood or ordered other tests to find out what the hell is wrong with me.

A nurse comes into my room a few minutes later and I ask her to hook me up to the fetal monitor (it's clear that that is not why she came into the room). I'm watching the clock like a madwoman counting down my 20 minutes. Actually, we're watching The Hills Live Aftershow and Boris is trying to understand why it's a show and why anyone cares about these people. I have less than 5 minutes to go and I tell Boris that he needs to find the nurse or doctor to make sure they give me drugs the second the 20 minutes is up. He says they'll come to us when it's time. Are you kidding!? I start screaming at him that if he doesn't get someone to ensure I get drugs the second my 20 minutes is up, I will run out into the hallway half naked in my gown and bald head and take care of it myself. It was very Terms of Endearment of me. Before either of us can leave the room, a beautiful nurse named Rachel comes in. She should be on t.v. with doctor Jeff. She tells me she's come to hook me up to the fetal monitor for 20 minutes. I go a little ballistic and tell her my 20 minutes are up in 2 minutes and she better have drugs for me. "What is going on here?" I ask. "Do you people speak to each other at all?" She leaves the room and returns to tell me that Jeff didn't order pain medication for me and he's gone into a c-section. "Rachel," I say, "I suggest you get him out of the c-section or find another doctor or nurse to write the order. This is a fucking hospital, right? Surely you can find someone to write a prescription and I know for a fact that most narcotics are safe during pregnancy." She leaves the room. Finally after 4 hours of suffering, I get a shot of morphine. It barely helps at all. Jeff comes back and tells me that he's going to order some additional tests (after 4 hours they asked for a urine sample, nothing else). It's about time. What doctor doesn't take blood immediately when you tell them you're pregnant and on chemo. Hello infection anyone!? Nurse Rachel tells me one of the ordered tests is for preeclampsia. I turn to Boris and lament that they are going to kill me. Preeclampsia?

I have to wait another 30 minutes for someone from the "i.v team" to come access my port. I totally understand that nurses on the maternity ward don't know anything about ports which is why I had wanted off the ward like 4 hours ago. My blood is taken and I'm given fluids. Jeff tells me that he's thinking I either have a kidney infection or might be passing a kidney stone and that I can no longer eat or drink anything. Not that I was chowing down or anything but I had lunch at 230, barfed it up and then some up, and was feeling weak and thirsty. Oh well. He also tells me that he's ordered an ultra-sound of my liver, kidney and gall bladder. Amazingly, even though I'm on the Labor and Delivery floor, there aren't any portable ultrasounds available so I have to go to the imaging center for my scans. Before I'm wheeled away, Dr. McAndrew comes to see me. I've never been happier to see her. "A real doctor!" I exclaim. "Dr. McAndrew, you have to help me," I cry. "No one cares that I'm in pain. They only want to monitor the baby and no one knows what they're doing." She assures me that Jeff is doing a good job but promises to get me more pain medication. She says that the results from the urine test are fine so no one is really sure what's going on. "You would have blood in your urine if you had a kidney stone," she explains, "and there's no sign of an infection. You're always rare and never an easy case," she says and smiles. "We're working on it. If the ultrasound doesn't reveal anything, we may want you to have a CT scan. Even though there is some risk to the baby, the risk is outweighed by something being wrong with you and we need to find out what it is." I'm still in so much pain that I agree to the scan if it's necessary. I also beg Dr. McAndrew to make them give me more morphine, which they do. I'm still in pain, but am no longer writhing around in agony, so I guess that's progress.

The good news as I inform Boris is that I am now totally at piece with my scheduled c-section. Initially when I got pregnant, my goal was to have a vaginal birth. I had watched The Business of Being Born and not only wanted a vaginal birth, I wanted to deliver at home, with a doula or midwife in my bathtub without any drugs. I'm serious. Ask Boris. But after 4 hours of the worst pain in my life, I'm 100% over the whole natural birth thing. I want to be hooked up to an epidural as soon as humanly possible. Pain free and civilized sounds damn good to me.

Rachel wheels in a wheelchair and I'm taken to the imaging center for my ultrasound. I'm freezing (it's crazy how warm hair keeps you and how cold chemo makes you) and nurses are wrapping me up in blankets as I'm pushed down the hall. It's very sweet. Even though I'm bald, they're asking if this is my first baby and are smiling because they think I'm in labor. I just look at Boris and roll my eyes. It's a nightmare. The ultrasound technician asks me a few questions and then starts the scan. He's running the machine over the top portion of the right side of my belly. Not at all where I'm in pain. Then he moves to the left side. "Are you going to look at where I'm actually in pain?" I ask. "I know what I'm doing, okay?" he says. "Absolutely. But I have no pain whatsoever on my left side, so just asking." Jesus. He asks where the pain is and does run the machine over the area before dismissing me. I go back up to my shitty room with the most uncomfortable bed on earth (the kind that breaks down - mommies - you know what I mean) and I wait some more. It's almost midnight and Jeff comes to the room to tell us that there's nothing out of the ordinary on the scans. He's waiting for a portable ultrasound and wants to take one last look at me and the baby and then he'll let me eat, give me more drugs and let me go to sleep. He says that all of my tests are normal. No signs of infection whatsoever and he doesn't think the CT scan is necessary. Scary that no one knows what's going on with me, but I'm relieved to not need the scan.

An hour later Jeff returns with the ultrasound. Miracle Warrior is moving around like a superstar. His foot is jammed up against the right side of my belly, right where I'm hurting most. Interesting, but highly unlikely that such a teeny tot is causing so much pain for so long. Everyone is at a loss, but I get Vicodin which actually relieves the pain, so I'm finally happy. Exhausted, starving, but not in pain. Rachel wheels me to my new room which has a bed for Boris (poor guy has been trying to sleep in a rocking chair) and orders us food. We meet our new nurse, Beverly, who tells me that the second I start to feel any pain, I should call her so she can bring me more drugs. Rachel assures her that she doesn't need to worry about me asking. Now that I'm not in agony and am not starving, Rachel and I talk about my pregnancy and my cancer and she's very sweet and caring. Boris and I eat, drink, I take Vicodin and we pass out at 300am. We get a few hours of sleep before the pain comes back and I have to call Beverly for more drugs. When she comes in she tells us that the doctors are changing shifts and they are going to discuss me at 800am. They'll determine whether I have more scans or go home a mystery.

At 730am, Miracle Warrior kicks the crap out of me and the pain is gone. Poof. Just like that. No pain whatsoever. Doctor Jeff comes to see me after the changing of the doctor guards and says that the full work up from my blood reveals absolutely nothing except for a potassium deficiency. "You were my most boring labs of the night," he says. "I can give you potassium pills or you can eat a banana." I tell him I've been potassium deficient for several weeks and I'll eat a banana and the next time I go in for hydration they'll give me potassium. I tell him that Miracle Warrior beat me up and now I don't hurt at all. "Fascinating," he says. Then he tells me that the doctors all agree (read he spoke to an actual doctor not a resident) that I can go home. Dr. McAndrew also comes by and agrees. She says that she's called Dr. Silverman and I'm to go straight to his office from the hospital. Done. She says that they're going to find someone who can flush out my port (I've been receiving fluids all night) and discharge me. A nurse enters the room and gives me my discharge instructions (all labor related). I'm to come back if I don't feel Miracle Warrior kick me 10 times in a 1 hour period (he kicks me 10 times every few minutes, so no problem there), start bleeding or a host of other totally irrelevant problems. She reminds me many times not to forget to go to Dr. Silverman's. Then she flushes my port and tells me we're free to leave. "Um, there's a giant needle in my arm," I tell her. "Aren't you going to take it out?" She says "that's your port, not a needle." OMFG. "I need to speak to someone who knows about ports, now." She tries to convince us that she knows about them and then has some sort of an epiphany, realizes I'm correct, and says that she can just pull the needle out - but there's no way I'm letting her near me. I tell Boris that we should just leave and go to Tower and have someone who knows what the hell they're doing take the needle out. That's what we do and hot nurse John is a dream after the nightmare of Cedars. He removes the needle and Boris and I go to see Dr. Silverman.

We're seen after a short wait and Miracle Warrior is a miraculous warrior who is doing great. He's actually big for his age. He's in the 66% for size and we couldn't be happier. Dr. Silverman assures me that the morphine and Vicodin didn't harm Miracle Warrior at all (he says there's very little I can do to really harm him at this point) and then we discuss my delivery. I tell him that I want to deliver at 38 weeks. He says that it's much better for me to deliver as soon as possible so that I can get on with my treatment. After my experience at Cedars, it's so shocking to hear a doctor (particularly a baby doctor) take me into account and want to do what's best for me. He says that statistically, Miracle Warrior's lungs will be fully developed at 37 weeks, and says that we should do the amnio then. If his lungs are fully mature, we'll deliver. He promises me that once his lungs are mature, there is no difference in delivering at 37 or 38 weeks and reiterates that it's better for me. He says I should come back in 4 weeks and wishes us a better and happy new year. "Things can't get worse," I say, "so it just has to better." Always a realist and never one to mince words, he says "well, it can get worse, but we're going to hope that it doesn't."

We are. We are. We are.

We go home. Miles is so happy to see us and we him. We eat lunch together and then we all nap. I don't wake up for 4 hours. I wake up to Miles yelling "hi!" and hear him toddling down the hallway. Later that evening as I'm filling up the tub for his bath, Miles pulls up my shirt and kisses my belly. Swear. He bathes, has his milk and then we snuggle before I put him to bed. After about 5 minutes of the most tender snugglage ever I ask him if he's ready for bed. "Noooo" he whispers. "Okay, monkey," I tell him. "You let me know when you're ready. We'll snuggle until you are." After a really long time in Miles minutes, he looks at me, smiles and says "bye bye." I kiss him a zillion times and put him in his crib.

Over the next few days I've experienced a few twinges that are similar to the pain that drove me to the hospital, but nothing as severe and nothing that lasts longer than a minute or two. Yet again, I'm a medical enigma. The mystery of Sharon continues.

Womanizer

2008-12-18T21:07:00.000-08:00

The week after round 5 is the worst yet. I think the cumulative effect of the poison has started to catch up with me. I'm so tired I just cry all the time. I don't like relaxing and don't like feeling lazy. Even though I know I'm neither relaxing nor being lazy, it's incredibly difficult for me to be so inactive. I barely exercise other than my 2 Pilates sessions per week (minus chemo week) and I sleep a lot. Boris is amazing as usual and lets me sleep in in the morning while he takes care of Miles. He usually stays at home until our nanny arrives. I should have shut my mouth about not being nauseous, because now I am. But only when I go to eat, so it could be worse. I could feel like throwing up all the time. But I don't. And I still manage to eat. But with the nausea, I want to eat like a pregnant person, not a cancer patient. Protein and vegetables are revolting. I want bread and pasta and Cheetos and Sprite (I really want Coke but not enough to drink caffeine). The nutritionist at Tower always comes to visit with me while I'm there and I tell her that I've been eating far more carbs than protein. She tells me it's fine to give into my cravings as long as I have protein with them. Proteins are must. "You just have to eat them," she insists. Ugh. And yuck.

My second day of hydration is brutal. Russell is my date (and has been for several of my hydration sessions). He's a reformed lawyer, too (that's how we met) turned talk show host/blogger (www.popsquire.com). He's perfectly content to compute for a few hours with me and not at all phased by the treatment center. We wait for an hour because all of the chairs are full. Annoying. I see Darcy who I haven't seen in a few weeks. She looks tiny and tired and has a thick wool cap on her bald head. I ask her how she's holding up. She gives the routine "I'm hanging in there" response that I give when I can't deal. I've noticed it's the most common answer that I hear the young people at Tower give. "It's really tough," she says. I know. I know. We chat for a few more minutes and then I'm told that she's about to leave and I can have her chair. I bring over my belongings but when Darcy goes to stand up she's so sick and weak that she sinks back into the chair and looks like she's about to cry. She slowly peels off her sweater and says she can't move. I leave. As I'm walking back to the waiting room I start to cry. I see Anne and she wants to know what's wrong. I tell her that I just saw Darcy. "She's going to be okay," Anne says. "I'm going to get her a snack. Please don't worry." I'm not sure how Doritos will help the situation, but there's nothing I can do. I tell Russell that sometimes I forget that I'm dealing with cancer and how sick people get from chemo. I've been so lucky. I try to get my good spot in the treatment center where I see and hear very little but when I can hear other patients describing their side effects and problems and when I see how sick they are, it's unbelievably sad and terrifying.

I'm exhausted when I get home. I play with Miles a few minutes and then have to nap. Boris comes home early because pre-cancer, I had bought tickets to see Kathy Griffin. Some friends and I go to see her every time she's here and even though I feel like shit, with Clay Aiken coming out and Britney's "comeback", I'm really looking forward to it. But when it comes time to actually get dressed and go, I'm so tired I don't know how I'm going to survive the night. Plus I'm still traumatized from seeing Darcy. I start crying to Boris that I just don't know how I can do this. I hate being so tired. He reminds me that I should sleep if I don't want to see Kathy and that I can do this. I can do anything. I go. The last few shows we've gone to we somehow end up sitting in front of drunk, white trash who are so not Kathy's demographic. They're loud and can't help but keep a running commentary of their thoughts and feelings on everything she says and are incapable of containing their alcohol in their cups. One year I turned around and asked them to be quiet and a woman with bleached, permed, trailer park hair kicked my chair and threatened me. Weird. This year though, we are surrounded by Kathy's peeps (women and gay men) and so I'm able to sleep through the entire show. It was the first time my friends saw me struggling and they repeatedly told me we should leave, but I assured them I was content to sleep and they should enjoy the show. They did.

The following week I meet with Dr. McAndrew. She's just returned from a national breast cancer conference and tells me there were numerous lectures on triple negative tumors. Though currently all of the studies involve metastatic disease, she is optimistic that those of us with triple negative cancer will soon have a preventative drug in our arsenal. I show her a study I found in a medical journal about a new drug called trastuzumab that doctors have been using in an adjuvant setting. It doesn't directly speak to triple negative cancers, but I ask her if I can take it. According to the study, it reduces recurrences and overall survival tremendously. She smiles and tells me that trastuzumab is Herceptin. Crap (and a little embarrassing, but that's part of why I love her madly because she willingly reads all the studies I bring her, doesn't belittle me for doing so, and doesn't make me feel stupid for asking if Herceptin may help a tumor that's not receptive to Herceptin).

We also spend a long time discussing the timing of my remaining treatment. I had recently spoken to the young woman Hilary Swank introduced me to (who is being treated at UCLA) and she told me that 17 weeks elapsed between her chemo regimens in part because each scan she had was ordered separately and she had to wait a few weeks for results before receiving the next scan. I am not a doctor, but thought it sounded absurd. I want to know how quickly I can have my scans and when I have them. I don't want to have unnecessary time gaps between treatments. Dr. McAndrew explains that while UCLA is an incredible facility with some of the best doctors in the field, they are primarily research doctors at a research institution and things work differently. There's a lot of bureaucracy. She assures me that I'll have all of my scans and results back within a few days. And I can have the scans during my second course of chemo so they won't impact the timing between treatments at all. It's also good news that I won't have to get the scans immediately after I deliver. I can have my 2 weeks to just be a new mom and not a cancer patient. She does say that the results from the scans coupled with the pathology from the mastectomy (scheduled for early June) will determine the timing of my radiation. If everything is clear, I may have more time between chemo and radiation which is preferable for my reconstruction. If not, I'm not sure what happens to me. I'm too scared to ask.

At the beginning of week 2 post-chemo, I start to feel much better. My energy is back and the nausea is gone (phew). Amazingly, I have no mouth sores (I'm hoping I didn't just curse myself) so all things considered, life is pretty good. When I'm not at doctors' appointments, I'm able to enjoy my time with Miles who gets more amazing every day. His vocabulary is (in my unbiased opinion as his mother) phenomenal (he has well over 60 words which I think is impressive for a 15 month old boy) and it's so much fun talking with him. He points out everything in his world so we spend hours running through the park saying "bird, tree, bark, bow wow, swing, dirt, shovel," and naming his various body parts. He has also fallen in love with his friend Abby and so we spend a lot of time pining away for her. He woke up this weekend at 620am, said "Abby, Abby, Abby," then went back to bed. Each night before we go to sleep, Boris and I tell each other how much we love the other and then we talk about how much we worship Miles. I share with Boris all of the hilarious things he did that day. Much to Boris' horror, my most recent story involved Miles' love of Britney. We were listening to Womanizer in the car and as soon as it ended, I hear Miles say "more." I play the song again. It ended and Miles says "more, more." I ask him if we can listen to the next song but no....he likes Womanizer and apparently wants to listen to it over and over. A man after my own heart. Boris, Miles and I were in the car the next day listening to the song and each time it ended, Miles asked for more and Boris looked suicidal. Good times. Miles now says "Britney" and a huge grin spreads across his little face each time he hears the chorus.

Chemo Round Five

2008-12-09T13:46:00.000-08:00

My wife and her soon to be husband take me to round 5 of chemo. I've been getting progressively more tired so I ask Boris to spend the following day with me at home instead of coming to chemo. The waiting room is packed and after waiting 30 minutes, Anne asks if I will get started in a private room and she'll move me as soon as a chair opens up. I sigh, but want to get this over with, so I agree. Anne asks how I've been feeling as she takes my blood. Unfortunately, I caught a cold from Miles that morning and feel like death. I can barely breathe and am nervous that the doctors won't let me get this round of chemo. Anne says that unless I have a fever or other infection, it's not a problem. "Just get better by next week," she says. Um, okay.

I tell Anne that in addition to my normal side effects, I've had a ringing in my ear for the past 1.5 weeks. Initially, I didn't think anything of it. But then I was speaking to a pregnant with cancer friend of mine who has finished treatment and she was telling me that she recently freaked out because she had some persistent pain in her elbow. Although her husband thought she was crazy, she was convinced she had elbow cancer and insisted on getting an x-ray (came back normal - phew). I didn't think she was crazy but we laughed (so sick, I know) about elbow cancer since we don't even think that exists. I started telling her that I might have ear cancer and described the ringing in my ear, but then it dawned on me that it could be brain cancer and suddenly didn't think it was so funny. So, I tell Anne about the ringing and my possible brain cancer. "I'm so glad that you're such a good advocate for yourself," Anne says "but you don't have brain cancer." "How do you know?" I ask. Anne asks if I've researched brain cancer. Of course I have. "Of course you have," she laughs. "In your research did you find ringing in one ear a symptom?" Um, no. I found signs like persistent headaches, blurry vision, loss of balance, dizziness, but no ear ringing. But...you never know. It could be a rare side effect and I am rare. Nitasha's fiance is an ER doctor so he asks if he can look in my ear. He doesn't see anything except for some wax (which I'm pretty sure he called by its medical name "goober.").

I also ask Anne a ton of questions about my next cycle of chemo and my side effects and ways to ward them off. I tell her that I've heard the steroid causes horrific bone pain and ask if it's possible not to get it. "What did Dr. McAndrew say?" she asks. I tell her that Dr. McAndrew says I'll need it because the risk of infection is so high. Anne wants to know why I'm asking again, but I tell her that I ask everyone I can about everything I can because I want as much information as I can get. Yes I chose Dr. McAndrew because I was most comfortable placing my life in her hands, but I still want second, third, fourth and fifth opinions. Anne tells me that a Percocet or Darvocet will help with the pain. I ask her if medical marijuana is more effective. It's more natural so I'd rather be high on weed than Percocet (I think. I'm not sure which is more dangerous with a newborn). Unfortunately, she tells me that marijuana is great if I'm nauseous, but won't help with bone pain. Oh well.

Anne returns with my blood results and my white counts are even higher than usual due to my cold, but I get the green light to start my infusion. I don't wait too long before I'm told I can move to a chair, but after packing up all my belongings and heading towards the chair, someone else sits down in it. My instinct is to play the cancer card to get the chair, but then I remember that they have cancer, too, so that's not going to work. I head back to the private room. Anne tells me that she almost played the pregnant with cancer card to get me another chair, but refrained. I wait about an hour and then settle in to my chair.

Angela comes by to see how I'm doing. She tells me how wonderful I look (but of course) and asks if I feel beautiful. I'm caught off guard because it's the weirdest question I've been asked so far. Do I feel beautiful? Hmmm. I'm 7 months pregnant, bald, have acne and 1 chin hair. So, I have to vote no. But instead I smile and say "not so much, but thanks." Angela asks if I want antibiotics for my cold which I definitely don't. I thought I had made it clear that I don't want to take any additional medications, not even a Tylenol for a raging headache, but I guess I wasn't so clear. I'll save the pill popping for after Miracle Warrior's arrival. Apparently, I'm going to need it.

After 2 hours, I already feel like shit. Cold and breathing problems aside, I'm groggy and realize I feel nauseous. The smell of the hand soap at Tower is making me sick. Dr. McAndrew stops by to see how I'm doing. We discuss my cold and then I tell her about the ringing in my ear and possible brain cancer. She places my face in her hands, smiles, and tells me how relieved I'll be when I can have my scans. She assures me that the ear ringing is not a side effect of my chemo and it's highly unlikely it's a sign of brain cancer. "Please concentrate on feeling good and having a healthy baby," she says. "You'll have your scans as soon as you deliver, but for now, let's get through chemo and having a baby." I ask her again about my delivery date and whether I can deliver at 38 weeks instead of 37. That will mean I'll have 10 weeks in between my chemo regimens. "Do you think I'm risking my life by taking a 10 week break between treatments?" I ask. "I really don't," she answers. Of course there is no data whatsoever on what the delay between treatments means for me, but I trust her and like the answer, so I'm going with it. I'm going to start looking into possible birthdays when I get home. Maybe there's a lucky number or day that means health or life or something that I can choose. And I think I prefer Aquarius over Pisces, although I need to do more research.

I spend the remaining hours shopping online, my favorite passtime. Although I have a trillion new books on fighting cancer, raising fabulous children and child development, I can't bring myself to read any of them. I just collect. With my taste in music being what it is, Amazon.com thinks I'm a 12 year old girl with cancer and 14 children (but apparently I'm quite old because a friend recently reprimanded me for buying Cd's instead of buying albums on iTunes and Boris forbade me from buying Britney's new album on Amazon because the "new items" Amazon suggests for him are "humiliating.").

The treatment finally ends and I get to go home to Miles. He's still napping when I get home. I'm thrilled to be home when he wakes up so I can get him from his crib and get in some good snugglage before he's off and running. He's getting more cuddly in his old age and finally prefers me over most people (it's about time!). I've been complaining his whole little life that he really could care less whether I'm around or not and would enviously listen to moms I know talk about separation anxiety. While we still don't have any separation or stranger anxiety (not complaining), Miles does occasionally seek Boris and I out and doesn't spend all of his time with complete strangers (although this weekend he literally traversed an entire soccer field while Boris waited to see what his "comfort level" was with distance before I insisted that Boris follow him because he has no fear and didn't look back once as he ran farther and farther away and ultimately joined a group of 20something soccer players and their dogs). Now he'll run up to me yelling mama and throw himself into my arms. It's the best thing ever.

5 rounds down, 1 more to go.

Two Weeks in Review

2008-12-07T12:51:00.000-08:00

Hydration the following two days after chemo is the same as usual. My side effects are getting a little worse, but still tolerable. I still have mouth sores, incredibly painful indigestion and my fatigue is ridiculous. Sometimes I'm so tired that I actually can't move even when I just want to get off the couch and go to bed. It's a little scary. The second day of hydration, I make plans to meet another young woman, Katy, being treated for breast cancer. She was one of the non-pregnant cancer patients I wasn't going to meet, but then I learned that she was using a plastic surgeon (Dr. Slate) I had ruled out due to radiation (more on this in another post) and decided to call her. I am so glad I did. We have all of the same doctors, the same acupuncturist, both take power yoga with Vinny (or I should say took power yoga with Vinny since neither of us are allowed to do yoga due to lymphedema), are both struggling with lymphedema and both can't believe that this is fucking happening to us. It's so good to put a name to the face. I had seen her before at Tower, but she prefers the side of the treatment center that I don't like, so we had never spoken. She's particular too and I listen to her sweetly (but firmly) tell the nurse that hot nurse John is going to have to come to the chair she wants to sit in. She's there for her last round of chemo. I'm jealous. We swap complaints, discuss side effects and agree to get together after she's recovered from this last round. Before I leave, she takes me into the bathroom and shows me her reconstructed breasts. She still has expanders in and no nipples, but the girls look damn good.

From there I go to meet a group of women who call themselves "Slate Mates," (I am not making this up). They are all breast cancer survivors or BRCA gene carriers who removed their breasts prophylactically and used Dr. Slate for their reconstruction. If you're going to have expanders and implants, he's the man. Period. I had called another non-pregnant breast cancer patient, also named Katy (I'll call them Katy 1 and Katy 2), when I learned that she also needed radiation and was using Dr. Slate. She told me to come meet the Slate Mates who were lunching at Urth Caffe while I was hydrating. When I get to Urth Caffe, Katy 1 informs me that I just missed the big outing to the bathroom to check out everyone's boobs but she offers to show me hers. I pass and tell her we'll make a later date for a viewing. Katy 1 finished chemo 3 months ago and had just finished her last round of radiation earlier that morning. She is elated and beautiful and dawning her newly sprouted hair. It's come back gray (she's the second person I know whose hair came back sans color). I tell her that her hair looks amazing (it does) and my friend who was with me tells her that women would pay a lot of money for her hair cut. "I paid a lot of money for this hair cut," Katy 1 says. While I have never wanted short hair because I don't think I have the face for it - now I can't wait. I'm so envious and ready for my boy hair! I'm not even finished with my second cycle of chemo until the end of May so I have a long time to go. Boo.

I have my blood draw and appointment with Dr. McAndrew a few days later. While waiting at Tower, I see a partner I used to work with at my law firm. I go to say hello. He has the most amazing talent for remembering people. I think he's a little thrown off by my new look though so I give him my name. He introduces me to his wife who is receiving treatment and tells her that I was a "promising young lawyer who left the law to go into real estate with her family." "The Fiedlers," he says several times. His wife looks at me and says that surely I'm not here for treatment because I'm way too young. I agree, but sadly tell her I am being treated for breast cancer. And I'm pregnant. "Well," she says, "I had breast cancer when I was 39. I've never had it again. They can cure breast cancer. I've had other cancers since then, but never breast cancer." She's probably in her 60s or 70s now and was most recently treated for lung cancer and sarcoma. I don't want to tell her that I'm pretty sure her "other" cancers were breast cancer recurrences since breast cancer doesn't come back in the breasts. It prefers to come back in deadly places like the lungs, brain, bones and liver. But...she's alive so what do I know. She's in great spirits and looks wonderful, especially considering that she has a ton of hair and was apparently bald 3 months earlier. A random man waiting in the room interrupts our conversation to tell me that his wife was treated for cervical cancer while pregnant with their now perfectly healthy 34 year old son. And she's still alive, too.

After waiting an hour (patiently), I see Dr. McAndrew. We go through all of my side effects and she tells me again how pleased she is with how well I'm tolerating treatment. I know it could be much worse. I show her my latest and greatest issue which is dark patches of extremely dry skin on the protrusion points in my feet, ankles and right knee. "That's very rare," she says. I swear she said that (Cass was there and she can testify). Of course. Apparently it will go away after treatment, although the patches may remain discolored for years. Good times. Then Dr. McAndrew leans her head back in her chair and waits for me to begin the onslaught of questions. I do. I have a ton of questions about my next cycle of chemo. I've been speaking to women about their side effects and am terrified. First, they've all gained weight. A lot of it. One woman gained 20 pounds. It's apparently from a steroid they give you to boost your white blood counts. Dr. McAndrew gives me a look that kindof says, "really, you're pregnant with stage III cancer and worried about gaining weight?" but goes on to explain why the steroid is necessary (incredibly high risk of infection otherwise). And yes, I'm pregnant with stage III breast cancer and am afraid of gaining weight. I mean, if I'm going to have cancer and be on chemo when I'm not pregnant, then I'd like to wither away to an emaciated 90 pounds. You know, I could be small the way Boris defines it. Gaining weight postpartum is just fucking rude. I ask her how on earth the plastic surgeons will know where to put my new, small boobs if I'm twice my normal size. I also asked Dr. Dao during my last acupuncture treatment if he'll be able to help with weight gain and other side effects after I deliver. He tells me that I'm a really good planner but goes on to say that he used to plan and now he prefers to "live in the moment and cherish every precious moment of life." I asked him if he's ever gone through chemo. He hasn't. "I was just wondering if you cherished your time being hooked up to an i.v. for 5 hours having poison dripped in to your body." That was the end of our conversation.

Back to Dr. McAndrew: Second, they've all experienced neuropathy. Dr. McAndrew says that I will almost certainly experience neuropathy in my hands and feet. The level of pain and duration differs for everyone. Some people experience it for years. Lastly, they've all experienced excruciating bone pain. One woman described it as horrific pain coursing through your veins and bones. Nice. Dr. McAndrew explains that that's also a result of the steroid but again tells me it's necessary. Normally I'd say shoot me, but since I'm doing all of this to stay alive, that seems inappropriate. Instead, I just tell her I'm so sad and afraid.

Our meeting isn't all bad news. We discuss Miracle Warrior and how miraculous he is. In my most recent appointment with Dr. Silverman, Dr. Silverman confirmed that his growth leaves nothing to worry about. Everything looks perfect. So perfect that I don't have to go back for another ultrasound for 6 weeks (not that I don't love seeing Miracle as often as possible, but it means Dr. Silverman truly isn't worried). Plus, I see Dr. Ottavi almost every 2 weeks, so I get to check up on him in the interim. We discuss my birth. My last round of this cycle of chemo is scheduled for December 30. I will be 32 weeks pregnant. I have to wait at least 4 weeks before delivering to ensure that my white blood count, and Miracle Warrior's, are normal. I tell Dr. McAndrew that I really don't want to deliver at 36 weeks and ask if I'm putting my life at risk by waiting another week. She doesn't think so. I'm going to try to push it back to 38 weeks the next time I meet with her. How much difference can 1 week make for me? She tells me that I'll have to wait 2 weeks after giving birth before starting the second cycle of chemo. 2 weeks. That's it. That's fucking it. While I start to tear up, she gives me news that makes me cry for the next few days. She says that I can breastfeed Miracle Warrior during those 2 weeks. She assures me that the chemo will be out of my system long before I deliver (and I confirm this with a doctor who literally wrote the book on drugs and breastfeeding). I am elated with the unexpected news and cry every time I think about it.

I leave Tower feeling really happy and positive. My baby is healthy, I can breastfeed him for 2 whole weeks and for the most part, I feel okay (under the circumstances). A good friend and my Aunt both tell me that they're going to be raising money for breast cancer and want to know if there's an organization I would like them to support. I go online to look for organizations that specifically provide money for research on triple negative breast cancer. I don't feel so happy and positive anymore. The only organizations I can find were created in honor of young women who died tragically young. All of the articles I read discuss how women with triple negative tumors are far more likely to die from the disease and have recurrences. Not that this news is new, but fuck. I become hysterical. I show Boris the website for the Triple Negative Breast Cancer Foundation and the picture of the 37 year old mother of a 2 year old who died 2 years after being diagnosed. "You are not going to be her," he tells me. "How do you know?" I ask him. "I know. I know. And it's what I have to believe. You are not going to be her," he repeats. He also says that foundations aren't interesting unless someone has died and insists that I stop looking online because I'm not going to find anything good. I do, but still cry myself to sleep.

Thankfully, I have breakfast with the 2 Katys in the morning. Katy 1 has finished treatment and Katy 2 has finished chemo and is about to start radiation shortly. It's like we've been good friends forever and we'd be friends even without cancer (although that certainly creates an instant bond). For fun (in our world), we exchange driver's licenses and can't believe how different (and younger) we all look pre-cancer. We compare scars from our surgeries and our ports. I tell them that I'm so tired and my mouth sores are the worst thing ever but then correct myself to say they just suck. Katy 1 insists that they are really are the worst thing ever. Actually, she says that every side effect is the worst thing ever. She's so my people. They look at me in shock when I tell them I haven't thrown up once and can't believe I can make it to pilates twice a week. "I'm exhausted just from walking up the stairs to the restaurant," Katy 2 says. She goes on to say that she just can't take it anymore. "Sharon, I'm sorry to say this in front of you because you still have so much treatment left, but I can't take it. I'm having a breakdown. Honestly, I just can't take it. Aren't you afraid of a recurrence?" she asks. "I can't go through this again." I am terrified of a recurrence and don't understand how can I possibly be monitored closely enough. Plus, I have zero control over the situation which I hate. Katy 1 tells us both that we can go through this again should we have to. "What choice do we have?" she says. "Look how strong we are," she continues. The time flies by and before I know it, we all have to leave for various doctor's appointments. We were all invited to the Bosom Buddies breakfast at Neimans and will see each other there in a few days.

I pull up to Neimans at 9am. The store isn't even open yet but there's a volunteer at the entrance who asks me if I'm here for the breakfast. I am. She tells me where Mariposa is but I'm already heading towards the escalator (as if I don't know where Mariposa is!). I see Katy 2 right away and she introduces me to 2 other breast cancer survivors - 1 who has been cancer free for 2 years and 1 who has 2 more rounds of radiation left and then she's done with treatment. Her name is Lucy and she also used Dr. Slate for her reconstruction. I'll have to see her tatas later, but she looks amazing. As we head towards a table, I hear a few women whispering "oh my god she's pregnant," as I walk by. It's really nice to be pitied even by women who have cancer. I ignore them and Lucy and I start chatting. I'm eyeing her unbelievable eyelashes and fabulous hair. She mentions that all of the eyelashes on her left eye fell out during her second to last chemo treatment. I just stare at her, confused. She tells me that she has an amazing eyelash woman who can give me the best lashes ever should mine fall out. So now I have to ask if her hair is real or not. It's not. We have the same wig maker. It's so real I can't believe it. Neither can she. She just assumed I didn't lose my hair because I was pregnant. It's hard to see how real the wig looks on your own head but on someone else, it's pretty incredible.

As we dine on popovers and eggs, Neimans' employees show us how to put on fake eyelashes and tie scarves. It's pretty amusing. And then one of the Bosom Buddies gets up to speak about the event and Tower Hematology and how lucky we all are to be in such good hands. She looks familiar to me and I realize that she was my 10th grade English teacher. I cry as she tells us that the original organizer of the event lost her battle to cancer a year ago. I approach her later and she looks at me and says "please tell me I'm not seeing one of my students here." "You are," I tell her. She's an 8 year breast cancer survivor and it's really nice reconnecting with her. We have been in touch since and she's going to be my Bosom Buddy. In her email to me she wrote "You have probably heard this sentiment, but it is worth repeating. As a friend and breast cancer survivor said to me when I was first diagnosed, this is a club none of us ever wanted to join, but it is truly an amazing sisterhood. I'm sorry you ever had to join, and especially so young, but you have many "sisters" who are here for you." I cry.

I have 3 more days before round 5 of chemo. My last appointment of the week is with a new lymphedema specialist (who my English teacher also sees). My left arm isn't visibly swollen, but it feels heavy and I can tell there's some swelling. The physical therapy office is in the south bay which is a schlep. The specialist is warm and motherly and quickly gets down to business. She measures both of my arms and tells me that there's a 1/2 inch difference in size in a few places in my upper arm. Great. She tells me that the compression garment (sleeve) I've been wearing is insufficient and orders me a new one. I tell her I rarely wear my sleeve because I thought it was better not to restrict the flow of any fluid. Wrong. If there's any difference in size, she says the sleeve is a must. "Will I have to wear it for the rest of my life?" I ask. "Why? Is it uncomfortable?" she wants to know. It's not uncomfortable, it's just ugly and who would want to wear it forever? She doesn't tell me I won't have to wear it forever. She just says we should concentrate on minimizing the swelling.

She begins a 45 minute "drainage massage" that's relaxing, but not really a massage. The lymph nodes are just under the skin, so the pressure is virtually non-existent. I ask her if I can still get normal massages (which I love). I can't. Fuck. Is there anything I can do? I tell her that I normally walk on the treadmill and do power yoga for exercise. She says "well you can definitely walk as long as you don't work up a sweat, and yoga is great because it's stretching and breathing." Who takes a leisure walk on a treadmill? And I explain to her that I don't breath and stretch in yoga, I sweat my ass off and do 100 push ups. "Oh no. That's not something we recommend." Fuck. I've taken a yoga class before where all we did was breath and stretch and it wasn't relaxing. It was frustrating and annoying and I was crawling out of my skin wondering when we were going to actually do something. I ask her if she's aware that women should do cardiovascular exercise to prevent cancer. Do I have to chose between cancer and looking like the elephant woman? I might.

She teaches me a self massage that I really can't imagine does anything, but I'm to do it twice a day (and I have been doing it religiously, but see no difference whatsoever). And, she also is ordering me a nighttime sleeve that looks like an oversized oven mit that goes from my knuckles to my armpit. Just in case sleeping isn't already uncomfortable enough. That sleeve is forever, too. I'm just going to believe, regardless of what anyone tells me, that once I'm not pregnant and not on chemo and not swollen all the time, that this is going away. It has to. I can't deal with compression garments for the rest of my life (as long or short as that my be) and a life with no activity. At least the kind of activity I like.

And on that happy note I have 2 appointment free days to spend with my boys before chemo round 5.

The Book of Sharon

2008-12-03T10:51:00.000-08:00

I think I'm a modern day Job. I'm being tested for sure. I don't know why since I think I'm a pretty good person and if there is a God, he already knows I think he's an asshole and don't believe in him. But...just in case being pregnant with cancer isn't enough to deal with in and of itself, this week I woke up on the morning of chemo round 5 with a cold. A cold that Miles gave me. He's fine now but for a cough that causes him to wake up at 5am and moan in bed for an hour. Poor Miles. Poor me. Mama needs her sleep and since I'm up every 2 hours to pee and then can't fall back asleep listening to my husband snore or worrying about whether I'm going to die soon, 5am is usually when I'm able to pass out for an hour or two. And just in case that's not enough, my vet called to tell me that Norman's diabetes is back and he needs 2 shots of insulin per day. I had found someone willing to adopt him until he moves on to kitty heaven knowing full well that he's peeing all over my house, but now I have to ask her if she'll take him and poke him with a needle twice a day. Methinks no. And just in case that's not enough, Boris and I received a letter from the I.R.S. asking for our 2006 tax return. Because what we need now is to be audited. Good times. Good times.

Things I've Learned From Cancer So Far

2008-11-26T15:40:00.000-08:00

Free Parking
When I was first diagnosed, Boris and I had appointments with oncologists almost daily. After the second appointment, I asked Boris if he noticed that we didn't have to pay for valet parking. Normally, it costs $15-$20 to park in a medical building or hospital for 10 minutes. Not when you have cancer. We get validated. When Amara and I went to UCI a few months ago, as we gave our car to the valet, he asked for $10. "Did you tell him I have cancer?" I asked Amara. "Sharon!?" she replied. "Well, it should be free," I said. And as we left our appointment, the woman at the front desk asked if we had a valet ticket she could validate. "The valet will give you back your money," she said. I turned to Amara and gave her my best "I told you so" look.

I have my own Army of Women and a Few Good Men
I have always been fortunate to have the most amazing group of friends, the majority of whom I've known since I was 12. But cancer has revealed to me just how many people love me. Close friends, acquaintances and total strangers have done the most incredible things for me. Before I even began treatment my friends rallied into an army to make my life as easy as possible. They were delivering food at such a furious pace that I had to explain to them that no one on earth could possibly eat that much. Plus, nothing had happened to me yet. I was perfectly capable of buying groceries, cooking, and certainly ordering in. No one cared. Boris was concerned that everyone would burn out before we really needed help, most likely after Miracle's arrival. He told me that my friends weren't going to feed us for over a year. "You don't know my friends, Boris," I told him. My army of women delivers food to us once or twice a week. They buy groceries and bring us delicious home cooked meals. They drive in from far, far away places like the valley just to bring us food. Some of them have never ever cooked a meal for themselves or their own families, but they make food for me and mine. When they cook, I'm informed that everything is organic and if the food is packaged in plastic, they assure me that they let the food cool off before packaging it up. But of course.

For those who beg to bring me food but I refuse because we really, really, really don't need anything, they find other ways to help. I've been sent articles on cancer fighting foods, referrals to healers, acupuncturists, herbalists, therapists who specialize in cancer patients, meditation cd's, book lists, cashmere sweaters and blankets to stay warm, scarves, even a faux Goyard bag I was eyeing (I was actually eyeing the real deal but refused to spend $1200 on vinyl and this baby is identical). Close and not so close friends have asked if they can babysit, run errands, do my laundry. Seriously. A client of mine who knew about my cat traumas with Norman asked if she could come over and clean my litter box every day. I actually have a visitor's schedule because Amara doesn't live here but wants to be involved. So I have friends who call several times a week wanting to know if they can come over and "visit" (read help). We have small fights as they take off work early or leave their children at home and burst into my house and demand to do my dishes or straighten up toys.

I have one friend who was going to stop breastfeeding when her son turned 1, but knowing how sad I was to find out I couldn't breastfeed Miracle, she delayed weaning so she could provide him with breast milk. She is pumping a 2 month supply of milk for him which she drops off each week. Another close friend who is due with a little boy at the same I'm due with Miracle has also offered to pump milk for him. Each week I am reminded of how lucky the two of us are to have friends like them.

I also have a waiting list of friends who want to come to doctors' appointments, chemo and hydration sessions with me. I had so many requests that Boris wanted to know if he'd be able to come with me again. I receive daily emails, cards and phone calls just sending me love and good thoughts. Cancer has reconnected me with people I haven't spoken to in years. My friends are more amazing and love me more than I ever imagined. And I am grateful to them in a way that words can't accurately express and hope to be in their debt for a long, long time.

Random Acts of Kindness
In one of my favorite Seinfeld episodes, Jerry Seinfeld declared that 90% of the population was undatable. I used to argue that his statement should be taken one step further. 90% of the population is not only undatable, they are annoying and dumb. Until now. I have been touched by the generosity and support of my friends and family, of course, but of acquaintances and total strangers. A friend of a friend owns Childish clothing and when she heard about me, she stuffed a giant bag full of fabulous maternity clothes for me. I thanked her profusely and her response was that if I wanted anything else or any children's clothing, to let her know. A client who works with Paige Premium Denim gave me several super cute pairs of maternity jeans so that I could "rock it" at the hospital. I have been given delicious ParkerBlue sweats outfits, insanely soft robes and one friend (Cass!) has given me every comfy top and pair of sweats she can get her hands on. Not to mention that I haven't been allowed to pay for a meal since I was diagnosed. And believe me I try. Anytime I sound sad, my brother brings me gorgeous flowers with a poignant card that might say "life sucks right now but at least these are pretty to look at." I guess I'm still not convinced about most people's intelligence (especially given the outcome of Prop. 8), but I am convinced that there are many, many good people out there who want to do nice things for someone going through a shitty, shitty time even if they don't know them. I'm hopeful that Marc Jacobs might hear about me and want to outfit me with a post-baby, new boobs wardrobe. If anyone reading this knows him - I'm totally serious.

Complain Less
I have spent 15+ years complaining about my unruly hair and large breasts. Now I'm bald and going to lose my breasts. I wish I had appreciated them both more. I had great hair and my boobs are rad. Seriously. When Miles was born, he would breastfeed for what seemed like eternity. 45 minutes to an hour each session only to want more 30 minutes later. He'd often fall asleep at the breast and I would complain to Boris that I was a human pacifier. But I was committed to breastfeeding and as he got older and ate faster and less frequently, I loved our time together. Since Miles has always been a man on the move, feeding was our only snuggly time together. But Miles only breastfed for 5 months. I had to introduce him to the bottle and when he realized that he could get back to playing faster, he was over the boob. Since that time, I've been joking that I'm going to breastfeed my next child until s/he is 12. And now I'm carrying my next child who I won't get to breastfeed for 5 minutes - forget 12 years. I wish I had complained less about Miles' newborn feeding frenzies because now I'll never get to experience them again.

Cancer has taught me not to take anything for granted and to appreciate more. Things I complain about now may disappear in the future. It has made me painfully aware that I am not immortal and that there is something beautiful and significant in the most mundane tasks and seemingly unimportant moments. I relish every second I have with Miles even if it's changing a diaper, wiping his nose or watching him throw a tantrum. And while I'm getting more uncomfortable with my pregnancy, I'm just so grateful to be pregnant and have a healthy child growing inside me that instead of complaining, with each kick and hiccup I smile. I've even stopped complaining about unwanted hair because now it's all wanted. I am bald bald bald on my head but still have 1 hair growing out of my chin. Normally I'd have that sucker lazered off in a heartbeat, but not now. To me it means that some part of me is healthy and growing and normal so it's not going anywhere.

Being a Parent is the Hardest but Best Job on Earth
When I was younger, my father used to tell me often that there were many things I wouldn't understand until I was parent. Love was one of them. "You won't understand how much I love you until you have kids of your own," he'd say. I would roll my eyes and tell him how annoying he was. Afterall, with the most amazing friends and family, a husband I couldn't love more....I love a lot of people a lot. But then I had Miles and understood what my father was talking about. The love I feel for him his the most overwhelming, encompassing, phenomenal love I've ever known. He is the only person on the planet that I want to spend every second of every day with. Seriously. I've been told that will change when he's 2, but for now, I simply worship absolutely everything about him. Like most parents, I think my child is the most incredible, gorgeous, gifted, charming and lovable person on earth.

And so I cannot fathom the pain and suffering my parents are going through. They tell me repeatedly that they would die in a heartbeat to make this go away and that not 1 second of 1 day goes by that they are not thinking of me. I think it's worse for them than it is for me. They are completely helpless and no parent wants to see their child suffer and not be able to do a damn thing about it. Like my friends, they call me daily wanting to know how they can help. And like my friends, they're sad that they can't do much more than buy me food or small gifts that might brighten my day. And even though I understand their despair, I am still their child and still me and tell them almost daily to stop being annoying. There are some things that even cancer doesn't change.

The Worst Thing Ever
I have been known to speak in hyperbole. Tons of things are either the best or worst thing ever, or just the best or worst. When I was living in San Francisco, a co-worker introduced me to his mother as follows: "This is Sharon. Everything in her life is either amazing or not okay." While I still catch myself saying things like, "that movie was the worst thing ever or my indigestion is killing me or this sore in my mouth is the worst thing ever," I now correct myself. I go on to say "actually, indigestion is not killing me. Cancer might be, but not indigestion. And the mouth sore is not the worst thing ever. It just fucking sucks (except recently Boris forced me to watch Don't Mess with the Zohan which actually might be the worst thing ever. Ever.)." When people other than close friends or family complain to me about how trivial disappointments, office or playground politics, lack of sleep, blah blah blah are the worst things ever I just think "excuse me, but being pregnant with cancer is the worst thing ever." Period.

I have a Perfectly Shaped Head
I'd be thrilled to never have known this, but it's something I've learned.

Cancer Sucks
I've read many accounts from cancer survivors who claim that their cancer was a blessing and made them better people. I think that's bullshit and am not into the "cancer gave me a fresh start and made me a better person" perspective. I was a good person before cancer. I told my family and friends that I loved them often and while I may have complained about trivial issues, I wasn't totally ungrateful for what I had. I knew I was strong before I had cancer and would be happy not to learn just how much I can endure. Cancer has made me more grateful, but it hasn't changed my core. Someone still annoys me on a daily basis, I still hate my mother in law and I still want to shop a lot. Boris and I recently had breakfast at Quality and afterwards took a stroll down 3rd St. As we were walking, I told him that I wanted to buy everything I saw. "Hasn't cancer taught you anything?" he asked. "Absolutely," I said. "But it hasn't made me stop wanting cute clothes or shoes or bags and honestly if I have less time here, I'd like to look really good." Right?

And even if cancer has given me a chance to start over (even if I don't think I need it) I'd gladly give it up to avoid over a year of hell. Pain, unbelievable exhaustion and worse, fear. Unimaginable fear and sadness. Fear of death and guilt of undergoing chemo while pregnant (as if pregnant women don't worry enough about their babies in the best of circumstances!), a lifetime of worrying about whether I've harmed Miracle, mourning the loss of my body, my hair (except where I'd actually like it to fall out), my life as I knew it. Time with Boris, Miles, my family, friends. The inability to relate to most normal people who just don't get it. A blessing? No fucking way.

Patience for Doctors
As a general rule, I think it's rude to keep people waiting for long periods of time. Now many of you know that I am eternally late, but only by a few minutes. I used to throw fits in doctor's offices insisting that my time was just as valuable as theirs and keeping me waiting for 30 minutes or an hour was simply unacceptable. Don't get me wrong, I don't like wasting time in a waiting room, but now I realize that someone like me might be on the other side of the door. Someone newly diagnosed with a horrifying disease who is terrified and in shock and has a zillion questions. And luckily for me, I have found doctors who will spend as much time with me as I need any time I need it. All of my doctors have spent hours with me, literally, discussing studies, abstract 'what ifs,' the unknown, until I was satisfied. All of these women are the best in their field and have busy, hectic practices. And yet when they enter the room, I am their only patient and they will patiently answer all of my questions, even the ones I've asked before. It's only fair that I return the favor. Dr. McAndrew has spent hours on the phone with me over the weekend and in the evening not to mention all of my office visits. Dr. Funk answers my emails almost immediately and fits me into her schedule whenever I need. She has checked up on me throughout my treatment. And if our state didn't suck and I could marry a woman (assuming neither she nor I were happily married) I would seriously try to marry Dr. Ottavi. These women are my angels and protectors and are hopefully saving my life and Miracle's, too.

It's Possible to Love Boris More
I have never loved a man as much as I love Boris which is why I married him. I didn't think I could love him any more than I did before we got married. But as each day went by during our first year of marriage, I loved him even more. I never ever dreamed I could be so comfortable with anyone. Then we had Miles and I fell in love with Boris all over again. Watching him with Miles still makes my heart feel like it might explode (although I admittedly feel pangs of jealousy when I snuggle with Miles at bedtime and Miles whispers "daddy"). And now this. And now I love him even more. He is my rock, my support, my hope, my heart, my life. It's impossible to write all of the unbelievably tender and loving things he says to me that reiterate his love of and support for me. Real, unconditional love. Not the "things-are-bliss-and-we're-so-happy-love," but "things-couldn't-be shittier-and-our-life-will-be-forever-changed-and-we-will-be-forever-changed-and-I'm-never-going-anywhere-and-still-love-you" love.

Fear and Sadness
Cancer has opened up a world of fear, loss and sadness that I never knew possible. I think until a doctor looks you in the eye and says "you have cancer," and you think "I'm going to die," it's impossible to understand. I have gone to the dark place where you wonder how much more time you have to live. Someone has told me that I have a 40% chance of dying in the next 10 years. 40%! People like to tell me that we're all going to die someday or that I could get hit by a bus tomorrow. But I ask them if they cry themselves to sleep at night because they're so afraid of when they're going to die or because they're terrified of being hit by a bus tomorrow. They don't. I ask them if they cry when they look at their children because they're afraid they won't get to watch them grow up. They don't. I ask them if they check their bodies every day for new lumps, tenderness, moles, anything that they fear might kill them. They don't. I do.

They also complain about gray hairs, unwanted facial hair, menstrual cramps, saggy breasts. I don't. I think those are all luxuries. I can only hope that I get to complain about them (minus the saggy breasts which, sadly, I'll never get to complain about) soon.

Being "Green" and Cancer Don't Mix
One of the many ironies of me getting cancer is that Boris and I had gone "green" when I was pregnant with Miles. I tossed out all of our toxic household cleaners and replaced them with non-toxic ones. Over the course of the year, I got rid of those too and now our entire house is cleaned with baking soda, vinegar and castille soap. We don't use any products with parabens or chemical fragrances (when I was diagnosed Boris asked if he could start using "normal" shampoo again). I've use a natural deodorant for years (Real Purity - it's the best). The only toxic products I use are my hair products (I'm too vain to have an afro, although cancer has solved that problem for me) and lip gloss (I'm obsessed and haven't found a natural one that I love). Recently, Boris and I decided that in addition to using non-toxic products, we would replace our paper towels with cloth, stop using plastic and paper bags in favor of reusable bags and even flush the toilet less (not gross, swear).

Cancer has derailed our efforts. Because of my nearly non-existent immune system, my doctors have advised that I use paper towels that I can throw away after 1 use (instead of risking germs and possible cross contamination in the kitchen) and I have to flush the toilet twice every time I pee. I've had to start using Aquaphor again to help with my chemo induced dry skin (not toxic but petroleum based so bad bad bad for the environment). Oh well.

Sisterhood of Breast Cancer Patients/Survivors
I am part of the sisterhood of breast cancer patients and survivors. I have been introduced to the most amazing women who have braved and battled breast cancer while pregnant. Women who do not say "I can't imagine" when I share my experience with them, because they don't have to imagine. They have lived it. These are women who call or email me in their chemo induced stupors on days I have treatment to wish me luck and love and an easy week. Women who are recovering from double mastectomies while caring for newborns who regularly check up on me. Women who know exactly what I'm going through and how I'm feeling. Women who can tell me what toothpaste hurts the least with a mouth full of sores, what exercises help regain range of motion after having 17+ lymph nodes removed, what my hair may look like when it grows back and more importantly, how they survived or are surviving this time in their lives.

Sadly, the number of young breast cancer patients and survivors is growing at a terrifying rate. When I was diagnosed, friends asked if they could introduce me to women they knew who were battling or had battled the disease. Unless they were pregnant, I didn't care to meet them. And many were lucky to only be stage I in which case I really wasn't interested in meeting them. Recently (and thankfully) I decided to meet a few of these women who have super fucked up cancer, like mine (not that any cancer is good cancer, but there are stages for a reason). Although they're not pregnant - they get it and have been invaluable to me. For now, these are the women I relate to and am so grateful for. I know that I will provide the same love, support, guidance and hope to someone like me.

The Best Plan is not to Have One
When I was pregnant with Miles, I remember discussing my "birth plan" with Dr. Ottavi. Essentially, I wanted to stay at home for as long as possible to avoid unnecessary medical intervention (such as Pitocin and epidurals) that might prolong my delivery and result in a c-section. I made it very clear to Dr. Ottavi that unless me or Miles was at risk of dying, under no circumstances did I want a c-section. Dr. Ottavi wisely counseled me to keep an open mind because as much I like to be in control and generally get my way, I would have no control over my birth and she didn't want me to be disappointed on one the best days of my life. Plus, she said the nursing staff would laugh at me if I actually brought a written birth plan to the hospital. Miles didn't really care about my plan and 10 days after my due date, I had to be induced. So much for staying home and avoiding Pitocin. And after holding out for 6 hours without an epidural, my water broke and I had my first giant, crazy contraction. The anesthesiologist was in my room 2 minutes later. 15 hours later, Miles still didn't want to come out and I apparently was pushing wrong (who knew that was even possible?). Dr. Ottavi turned my epidural off to help me push correctly (I still love her though) which I did once and started screaming for drugs and a c-section. Knowing my plan, Dr. Ottavi didn't let me give up that easily. But an hour and half later, that's exactly what happened. And it was still the best day of my life.

Throughout my treatment, I've made plans for how I wanted things to go. They haven't. Each time I think I've reached a decision, I do more research and change my mind. Now I've decided to give up plans and just take each day as comes.

A 3 Minute Shower is Possible
No need to elaborate. Without hair, it's true.

Chemo Round Four

2008-11-18T20:19:00.000-08:00

Miles and I begin the day at a 900am toddler group. He has a blast licking paint, throwing balls and watching a puppet show. During song session, Miles climbs into a chair at the snack table and patiently waits by himself yelling "hi," every few minutes. He chows down on cheese and Pirates Booty (stealing the Pirates Booty off his classmates' plates) and then we go home. I jump into Boris' car and we head to Tower for round 4.

After waiting for longer than usual, Anne asks how we feel about a private room because there aren't any empty chairs. It sounds fancy so I say okay. But as we enter the room, I know it won't do. There's no reclining chair, just a bed with a bad mattress on it. I raise the back of the bed up as far as it will go but it's terribly uncomfortable. Anne promises to move me to a chair as soon as one opens up. As usual, we begin with a blood draw. As usual, my numbers are good, my white counts super high since I'm "special," as Anne and Angela say. And we begin. I don't have to wait long before Anne asks Boris to approve a newly empty chair. He does, we move and I'm much more comfortable. I ask Anne if I'm a pain in the ass and she says "yes, I was going to talk to you about that," and rolls her eyes.

Angela and I schedule my last 2 rounds of chemo. My last round is December 30. She's concerned I won't feel great for New Year's Eve, but I tell her it's highly unlikely I'll be out partying it up regardless and that I don't want to delay getting this over with. I can't believe I still have 2 rounds left and yet am so relieved that I only have 2 rounds left and then I get to meet Miracle Warrior! Angela tells me that everyone at the office holds me in such high regard and everyone is so impressed with how well I'm tolerating everything and with my attitude. I think she doesn't know me so well, but I'll take the compliment anyway.

As Anne administers my chemo, we discuss important things like how much we love Gossip Girl and how mad we are at Jenny's hair. Much to Boris' dismay, I spend the rest of the day window shopping online for designer bags and shoes. He wants to know what on earth I'm going to do with yet another pair of boots and forbids me from buying a gorgeous bag for $800. "But it's on sale," I proclaim. He gives me a look that says "you are crazy and better not spend $800 on a stupid bag" and reminds me that I'm barely working, he's working at a start-up and my new boobs are $30,000. Fabulous. "If you're going to buy anything now, it should be slippers and pajamas because you're not going to be going out much after Miracle comes. " True. But I can still collect, right? Wrong. Ugh.

One of the Bosom Buddies volunteers walks by with her basket full of junk food. I pass but then start craving Doritos. I beg Boris to track her down and grab a bag, which he does. It's a half bag of Doritos which means there are 5 chips in it. I devour them. When the volunteer walks by again, she asks if I want anything else. I turn to Boris and ask if it's bad if I have another bag. "Aren't you afraid it's going to give you cancer?" he asks. Good point. 4 rounds down. 2 to go.