Saturday, May 1, 2010

The Terrorists Didn't Ruin My Birthday

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.

Friday, March 5, 2010

I Like Your Boobies

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.

Wednesday, March 3, 2010

Angels & Demons

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.

Tuesday, February 2, 2010

These Have Cancer, Take Them Away

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)!

Thursday, December 17, 2009

Just Say Node

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.

Monday, November 23, 2009

Noisy to Baron

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."

Tuesday, November 10, 2009

The Waiting Game

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?