Friday, October 31, 2008

Neimans Here I Come

The day after round 3, I begin my day with another preschool tour. The school and director are lovely. I can't believe I have to apply to so many schools and pay tens of thousands of dollars for Miles to play for a few hours a day. Oh - and did I mention that Miles wouldn't even be going until 2010? Geez . However, I'm hoping that being pregnant with cancer somehow makes me more diverse and appealing to admissions directors, or at least makes them feel sorry for me (causing Miles to get into a great school). After the tour, Boris drives me home and I immediately get into Nitasha's car and we head to Tower for hydration.

My nurse for the day asks the usual questions about how I'm feeling. Am I nauseous, vomiting, able to eat, have any numbness or tingling in my hands or feet? No, no, yes, no. After I'm hooked up to my i.v. I turn to Nitasha and ask her if in a million trillion years she ever thought she'd be sitting here with me. "Not in a million trillion," she says. A tall blond woman in a pink coat comes around with a basket full of snacks. There are often volunteers at Tower offering the patients the most unhealthy, processed foods imaginable. They flaunt baskets full of Doritos, cookies, chex -mix and the like. I think it's hilarious. I guess if anyone deserves to eat that shit, it's us, but now that we know how healthy foods can help us in the fight for cancer, I think it's bizarre. But nice in an unhealthy way. When the tall blond woman in the pink coat offers us the loot in her basket, I smile and kindly say no.

Nitasha and I talk about her upcoming wedding and the planning that needs to be done (my dream, her nightmare) and we take out our delicious lunch from Clementine's (courtesy of Deb who was supposed to come to hydration with me but got sick). The tall blond woman in the pink coat comes over and asks where our lunch is from. We tell her Clementine's. "Of course!" she says. "I knew it wasn't from somewhere that delivers here." Then she asks me what I'm being treated for. "Breast cancer," I tell her. "What!?" she exclaims. "I can't believe I've been ignoring you. You just looked so good that I assumed you couldn't be on chemo for breast cancer. I thought you were here for blood or something. Is that your hair? How many rounds have you had?" she says in a single breath. She tells me that her name is Karly and she shows me a picture of herself bald and hooked up to an i.v. "I'm a survivor of 7 years. Would you like to go to a lunch at Neiman Marcus?" I want to do anything involving Neiman Marcus (especially if it includes a popover from their restaurant) so I quickly say yes. I answer her questions and shock the hell out of her when I tell her I'm pregnant. She's effusive with the compliments so I give her my email address and she says she's going to get information for me. I don't get to speak to her again because when she hands me the brochure for her organization, "Bossom Buddies," I'm on the phone with my brother who I've completely forgotten has taken Norman, my cat, to the vet.

Just in case my own health issues aren't enough to keep me occupied, I also have 2 sick cats, ages 11 and 12. Mattie has heart disease and has been on beta-blockers for about 1 year. She's doing remarkably well considering that I forget to give her her morning pill every morning. Literally. Last year while pregnant with Miles, Norman underwent surgery for his urinary tract and then developed diabetes. I had to give him 2 shots of insulin a day. Now I love Norman very much and he loves me and only me, but he will kill anyone who fucks with him. Especially when they're wielding a needle. It was fun. Miraculously, I (and the insulin) cured him of diabetes and the shots only lasted for 2 months. However, about 1 month ago, I noticed that Norman was drinking excessive amounts of water again so I had the vet come to check on him. More important than the excessive drinking is the excessive (and I think intentional) peeing around the house and in our bed. our bed. It turns out he's got a hyperthyroid and either needs daily pills for the rest of his life that could have negative side effects and will need constant monitoring or a vet can inject him with radioactive iodine and he's done forever. I ask if it will fix his peeing problem. If not - I'm not sure I can keep Norman with everything that's going on. But I'm an animal lover and love Norman and opt for the iodine treatment. Seth had taken Norman for his treatment and has informed me that all has gone well so far. Phew.

When I'm done with hydration, I ask Nitasha if it's rude to throw away the Bossom Buddies pamphlet. It's full of wonderful stories of older women which is great, but not so helpful to me. "I don't really want a 50 year old buddy," I say as I toss the pamphlet into the trash. Before she takes me home, Nitasha takes me to Vantage Center for Radiation Therapy, where I'm to meet with my second radiologist for a consult on Friday. I have paperwork to turn in so that I don't have to come early. I run in to the office, hand my paperwork to the man at the front desk and turn to leave. A super chic, tall blond woman in a fabulous outfit stops me and smiles. "It's Karly. You're following me," she says. She gives me a kiss on the cheek, tells me she'll see me soon and hops in to her new Mercedes. I come.

The next morning I feel okay enough to drive myself to Cedars for the duplex scan of my left arm. I've arranged it so that I can go to Tower for day 3 of hydration immediately after the scan. I'm late as usual so instead of wearing my wig as planned, I only have time to tie a scarf around my head and fly out the door. 10 minutes later, I'd be thrilled that I was in my scarf. As I'm driving, I'm also talking to my Mom (bluetooth, of course) and using a tape roller to get cat hair off of my clothes. I'm almost at Cedars when I notice a police car's flashing lights in my rear view mirror. Fuck. "Mom, I have to go. I'm being pulled over." I'm not driving fast and have no idea what I've done.

The police officer approaches my car and asks for my driver's license, registration and insurance. As I hand him everything I ask him what I've done. "Are you distracted?" he asks. I burst into tears and sob "Yes. I have cancer and am pregnant and I'm late for my zillionth scan. I have another lump that no one can identify." He stares at me without saying a word. I keep crying. And I discretely move my scarf a little so that he can see there's no hair underneath. Then he tells me that I blew right through the stop sign at La Peer and Clifton. "You know how busy that intersection is," he says. "Yes," I sob. "I'm so sorry." He tells me that I need slow down and drive more carefully or I won't live to get better. Then he hands me back my driver's license, registration and insurance card and returns to his car. I take a deep breath and keep driving while thinking that he would have gone straight to hell had he given me a ticket.

The duplex scan is in the Cardiovascular/MRI wing of the Imaging Center at Cedars. It's the dungeon. No windows or natural light at all. I wait and wait and finally am escorted to a dark room where a technician explains the scan to me. It's basically an ultrasound of the entire arm that looks at blood flow and my veins. He starts asking questions about why I need the scan and when I tell him he responds "well that must have shocked the shit out of you, to put it in professional terms." Indeed. He tells me I must be used to ultrasounds as he squeezes thick, gooey gel onto my arm. It's true, except I don't usually want to shower afterwards since the goo only touches a tiny part of my body, not an entire limb. He periodically turns on the sound which I find disgusting as I can hear my blood moving around but he explains what he's looking for and looking at.

We discover that our sons were born 1 week apart. His son's name is Cole and I suggest that Miles and Cole start a jazz band. I have no clots and everything looks normal. As he starts to tell me the signs I should watch for that might mean I have a blood clot, I wonder how I'll know whether any of them mean I have a clot, or am just pregnant and on chemo. Most of the symptoms include swelling in the arms and legs - both caused by my two competing "conditions."

Before I leave, he reminds me that I cannot be tested too often and can't be too cautious and urges me not to let anyone convince me otherwise. "I'm real good at being my own advocate," I assure him. "You don't need to worry about me making a stink if I think something is wrong." He also tells me that they can make some really nice boobs nowadays. "True," I say. "But mine are pretty damn nice." He wishes me luck and I head to Tower.

I'm led to what I perceive to be the worst chair in the treatment center. It's on the side I don't like (for no explainable reason), at the very end of the hallway directly across from the men's bathroom. I have no cell reception. It's giving me a headache and clearly won't do. Before I settle into my chair, I ask the nurse if there are any empty chairs elsewhere. She's says there aren't. I don't like that answer so I excuse myself and take a walk around the room. As I head to the side of the room I do like, I see 3 empty chairs in my favorite spots, right across from the nurses station. I see Anne. "Anne, you have to help me. I'm in the worst spot ever and it's making me sick. Can you please tell the nurse to let me sit in one of these chairs? And by the way, why did she tell me there are no empty chairs?" I ask. Anne says of course I can take one of the chairs, I'll just be stuck with her as my nurse. "Oh, boo." I say. "You're only my favorite, but I'll try to deal." I sit down, notice I have cell coverage, and feel much better. I relay the seating situation to Boris who responds that I'm high maintenance. Me?

Halfway through hydration, Anne asks me if I wouldn't mind showing my bald head to a 21 year old girl who is going to be starting chemo soon. I almost rip the i.v. out of my arm as I speed off after Anne forgetting my i.v. is plugged into the wall. Oops. Dana is tiny and looks so young I'm shocked. She's sitting in her chair covered in a blanket and I introduce myself to her and her father. I remove my scarf and say "see, it's not so bad. You could have a really nicely shaped head." She smiles and agrees. Her father asks me how far along I am. I pat my belly and say 5 months. His eyes widen. "I meant how far along are you in your treatment. Um, you can be pregnant?" he questions. "That's what they tell me," I say. I tell him I'm halfway through cycle 1 of chemo but explain I have 12 more rounds after Miracle is born. Then surgery and radiation and more surgery. "There's not much else to say except it sucks," I tell Dana. She nods in agreement. I ask her what she's being treated for. "Sarcoma," she says. "I need 48 rounds of chemo. It's every 3 weeks for 3 days." Fuck. We chat a little more and I tell her that if there's anything I can do to let me know and let her know about some support groups for young cancer patients. I'm so sad. She's just a baby. And as bad as my situation is, I have the most amazing support group. A rock star husband, loving friends and family, and of course my baby boys (who don't even know they're providing me with the best support and hope ever). My friends aren't in college and don't get drunk at bars every night. I wonder how supportive 21 year old's are.

My great Uncle once told me that as terrible as I may think things are, there's always someone whose situation is worse. He's right.

Thursday, October 30, 2008

The List

Shortly after my diagnosis, Amara came to spend the weekend with me. After doing so, she sent out an email to a number of my friends detailing statements and behaviors that annoyed me (it was brief considering that even before cancer, I was easily annoyed and found most people annoying. Just ask my parents who have been told they're annoying for at least 15 years.). Her email began as follows:

Here are some things I would like to share after having spent the weekend with Sharon. There are quite a few behaviors that not surprisingly annoy and upset her. Now, none of us are perfect and we surely cannot help feeling a certain way, but she was clear about a few things – (1) sobbing at the site of her is not helpful, (2) asking a million questions including “how are you” annoys her, (3) feeling sorry for her makes her uncomfortable, (4) she has already told us not to tell her she is going to be ok (though I have said this in a few different ways and sometimes it is ok or it sparks a heated discussion about having faith and believing…) and (4) talking about God upsets her.

The rest of "The List" as she called it, was actually culled from a list of things to not say to a cancer patient and young women's responses from the Young Survivors' Coalition. I found much of what was on the list funny and would add to it as people said things to me that at the time I found annoying, upsetting, or more often than not, just plain stupid.

Before I started treatment, the most upsetting and irritating question was "how are you?" I realize this is part of our culture and usually people say it out of habit, not genuine interest. But it just seemed so dumb. I'm pregnant with cancer. How the fuck do you think I am? The second most upsetting statement was "you're going to beat this," or "in my heart I just know you'll be fine," or some similar variation. While my friends and family want desperately to believe this, they really have no idea whether I'll be fine or not. In my opinion, such statements are totally unrealistic and fantasy and I still have a fight with anyone who tells me I'm going to be okay. Unless they can prove it, I'm not interested in their beliefs. Most of them didn't think I'd get cancer in the first place, so what the hell do they know? Finally, because many people found out about my diagnosis around the high holidays, many people told me they were praying to God for my swift and complete recovery or that they were praying that God would inscribe me in the book of life or some such variation. I have always been somewhere between an atheist and an agnostic, but now more than ever am convinced that there is either no God or he's a giant asshole. And why someone would believe that a God who could cure me didn't give me cancer while pregnant or failed to prevent the cancer is beyond me. It's totally hypocritical, in my humble, godless opinion. So if I do recover completely, it will have nothing to do with God. It will have to do with me and science.

Here's the rest of the list Amara sent out along with some of my additions, comments and reactions. The comments that people have actually said to me are in bold.

You could step off the curb tomorrow and get hit by a bus.

You gotta think positively.
(I was positive and still got cancer. And positive people die from cancer all the time.)

You'll be fine. (How do you know?)

My grandmom died of that.

God gives you what you can handle. (Fuck God.)

God has a reason for everything.

I believe there's a reason for everything.
(Really? Can you name one for my situation?)

What's your prognosis?

If anyone can beat this it's you.

If it's not your time, it's not your time. (Then why bother with the surgery and treatment?)

Life is not fair. (Thanks for the heads up.)

You're one of the strongest people I know and I know you can beat this. (No, actually you don't. You hope, but don't know. And I was pretty strong before I got cancer and still got it anyway.)

It's just a bump in the road. (I think being pregnant with cancer, chemo, radiation, multiple massive surgeries and living in fear of a recurrence for god knows how long is more like Mt. Everest.)

Don't worry.
(Umm, why not?)

Remember Lance.

Just look at Lance. He did it. You can too.

Just think, you're almost done. (Done? I'm done?...I guess I'm done with cancer everyone. Nothing left to do. How about radiation, follow up scans for the next 5 years, residual side effects, numerous surgeries and worrying for the rest of my life about recurrence.)

If anyone can pull off the bald look, it's you.
(I'm not saying I'm unattractive or anything, but I am no supermodel.)

Are you excited for your wig? (Yes. Super excited to have cancer, lose my hair and pay a million dollars for a wig.)

Do you have a cute pixie cut under your wig?
(If I had a super cute short haircut, why the fuck would I need wig?)

So, was the cancer bad? (No, I had the good kind.)

This is a treatable disease.
(Then why do 40,000 women die from it a year?)

How do you know if the chemo is working? (If I die, it didn't work.)

You'll be fine, you have a great attitude. (If attitude really matters then why did I get cancer in the first place? Or does attitude only matter after you get cancer? Right now my attitude about cancer sucks. What does that mean?)

If you really want to live, you will. Just never give up. When people give up, they die. (Good to know my fate is totally in my control. I really didn't want to get cancer and that worked out really well for me.)

People have also said the most beautiful things to tell me that they love me and are here for me in whatever way I need them to be. I realize that no one knows what to say in difficult (a massive understatement, I know) situations like mine and that everyone (myself included) is just doing their best. While I might find people's statement irritating at the time, I'm really just glad that I have so many people in my life who care enough to call and email me on a regular basis...even if they can't magically intuit what I'll be thinking or feeling at any given moment.

Tuesday, October 28, 2008

Over the Hump

Round 3 of chemo is, given the circumstances, uneventful. As Anne is about to access my port for my blood draw, I tell her that hot nurse John didn't use the numbing spray and I felt a lot less pain. So she skips the spray. "Was I as good as John?" she asks. "Sorry, Anne," I reply. "John's better. But you're still my favorite." I tell her I have some questions for her. She has some for me, too. She goes first. She asks about my past week and whether I've experienced nausea, vomiting, headaches and how my appetite has been. No, no, no, fine. The only problems I'm having are with my left arm. I show Anne, then Angela, the mystery lump and how my left arm is more swollen than the right. Angela says she wants me to have a duplex scan (ultrasound) of my entire left arm. Now it's my turn. I tell her that some friends read my blog and want to know if hot nurse John is single. If so, does he like girls or boys and if he likes girls, is he Jewish? So for those of you wondering, hot nurse John lives with his girlfriend and is Catholic. However, hot nurse Anne tells me she has a single, cute, Jewish, entertainment lawyer friend and we promptly contact our respective single friends to arrange a set up. What fun. As I'm emailing my friend who had asked if hot nurse John was Jewish that Anne has a cute friend for her to met, Anne is texting her lawyer friend and asking me if my friend is cute. Love it.

Now down to the real business. Anne returns with my blood results and tells me that my "little body" (we love Anne) is kicking ass and my numbers look great. My white counts have returned to normal (for me during pregnancy that means they're high) which is really good. So we begin with the 5 hour drip of fluid, anti-nausea medications and chemo. "Since you kindly referred to me as little, Anne, let me share with you my husband's thoughts on little," I say. Boris rolls his eyes and tells Anne not believe what I'm about to say because I'm taking it out of context, but...I'm not. And the conversation I share with Anne is almost verbatim. Boris and I were lying in bed one morning (it was early so I'll give him that) when I informed Boris that my new tatas were going to be small. "That's fine, snuggler," he said, but continued "just not too small because you want them to match your body." What!? "Don't you think I'm small?" I ask. I'm 5'2 afterall and while I'm not a tiny tot, I'm certainly not big. "You're not small. You're fuerte," he responds. What!? "You're fit and muscular," he goes on. "So muscular women can't be small?" I ask. Apparently not. I ask for some examples of small women and Boris informs me that the Olson twins are small. I remind him that they're not small, they're anorexic and in and out of the hospital for eating disorders. "Anyone else?" I ask. He names a friend of ours who is about as big as Kate Moss. Nice. "I'm not saying I think that's attractive, snuggler. I'm just saying they're small. And what I'm really saying is that I don't think you'll look good with tiny boobs." Aha. I inform him that I wasn't suggesting I go from a D cup to an A cup, but I just thought I'd let him know that I'm not getting D's again.

Boris and I spend most of the day shopping for Miracle's baby furniture. Initially, I had decided that I wasn't going to buy him a thing because if the worst happened, it would be too painful to have a room full of goods for him in the house. But I've decided that if the worst happens and Miracle doesn't make it - I'm going to have far bigger problems than getting furniture out of my house. Plus, that's part of the fun of being pregnant and I'm missing it because I'm so consumed with cancer.

2 friends come to visit me towards the end of round 3. One states that I look high. I guess that's a nice way to put it. Dr. McAndrew comes to say hello while they're visiting. I'm wearing a yellow t-shit and my orange Hermes scarf and she tells me I look like a burst of sunshine. Seriously. She asks how I'm feeling and how Miracle is doing. I tell her he's doing great although I haven't felt him moving around as much this morning as I'd like. She points to the bags hanging from the i.v's and shrugs. I guess we're both high. And then I'm free to go home. Then nurse who takes the needle out of my port says she didn't recognize me at first because it's the first time she's seen me in a scarf. She's used to me with hair (or at least my fabulous wig). "You look radiant," she says. "Doesn't she?" my friend says. The nurse goes on to say that part of what her cancer patients have taught her is that while as women we think that we need hair to be beautiful, she knows that's false as she sees bald women on a daily basis who take her breath away. So nice.

I've made it over the hump. I've made it halfway through my first cycle of chemo. 3 rounds down. 3 to go.

Sunday, October 26, 2008

Heavy Handed

I'm sitting at Anisette with my husband, my wife (Nitasha) and my dear friend Michelle. I've wanted to eat there for weeks. I want to eat everything on the menu. It's full of cancer fighting dishes like lobster bisque, steak frites and cheese. As I'm enjoying my onion soup and enviously eying the forbidden oysters on the table, I notice that my left hand and forearm are incredibly swollen. I had noticed some swelling after my first yoga practice in weeks, but thought it would go away. After all, it was a fraction of what I used to do. Suddenly, my soup isn't so delicious and I'm just sad. I can't believe I might have lymphedema. It affects such a small number of women (I've been told around 1%). The worst part is that there's really nothing I can do. My physical therapist says we just "watch it." I don't like watching things and waiting for them to get worse. I'm proactive and want to do something to fix it. Immediately. Sadder though, is that if I can't even make it into the 99% side of the statistic, why on earth should I have any hope of making it into the 60% of not dying? It seems inevitable as I can't catch a break. I've always hated numbers.

The next morning I'm discussing this with my therapist. She has lymphedema and we have matching compression sleeves. She wants to know if I had any swelling prior to wearing my sleeve. I didn't. She doesn't understand why I've been told to wear one. "I'm not a specialist," she says, "but I do know that many people don't react well to wearing the sleeve." And she's never heard of wearing one prophylactically. "If I were you," she continues, "I'd take it off now and see if the swelling goes down over the next few days." I can't get it off my arm fast enough. I feel much better after my session (not just because I'm hopeful about my arm/hand sans sleeve) but because she gives me some really helpful advice about how to focus on the positive. She agrees that I could be hopelessly unlucky and there are no guarantees that I won't die. But, another possible outcome to death is that I could be the poster child for pregnant women with cancer. I could live a long and fulfilling life watching my healthy children grow up. Why not add that to my thought process?

Although acupuncture and my therapy session were supposed to be my only doctor's appointments for the week, I should have known that something scary or rare or wrong would come up. Last week I had noticed a small, pea-sized lump just above my elbow in my left arm. My physical therapist wasn't sure what it was and suggested I see Dr. Funk. One of my closest friends, Cass, who is beyond remarkable, (I could actually write a book on how unbelievably amazing all of my friends are), comes with me. I'm so glad she's there because otherwise people might think I'm overly dramatic or taking artistic license when relaying what Dr. Funk says. Dr. Funk feels the lump and looks at it under ultrasound. "It's weird," she says. "I've never seen anything like it before." "Of course you haven't," I say. I ask if it could kill me and she's certain it can't. "It's fluid. Blood or lymph," she says. I ask her again if she's sure it's not cancer and remind her that she didn't think my cancer looked like cancer. "Cancer has shades of grey," she explains. Blood...not so much. She'd take a sample just because she's curious - but given what's going on with my arm, she doesn't think it's a good idea. My lord. So I'm to watch that, too.

The rest of my week is uneventful (finally!) and my arm does in fact get better without the sleeve...for a short while. After 3 days of not feeling swollen, my left arm starts to feel heavy which is a sign of lymph node problems (it's hard to describe the feeling but anyone who may be struggling with lymphedema will know exactly what I mean). I know my physical therapist would tell me to put on the sleeve, but now I'm scared it will make things worse. So I don't know what to do. I leave a message for a lymphedema specialist. And I wait.

Tuesday, October 14, 2008

Not a Bad Day

It's one week after round 2 of chemo and I have an appointment to see Dr. McAndrew. I've been warned to expect a long wait. I'm pleasantly surprised however because she sees me right away (call it a perk of being the only pregnant cancer patient in the office?). She's warm as usual and greets me with me a big hug. She tells me how great I look (I'm dawning my fabulous Hermes scarf - thank you, Deb) and is so pleased at how well I'm handling treatment so far. As usual, I have a litany of questions about radiation, future prevention and other abstract, unanswerable topics. She tells me that she highly recommends radiation because there are numerous studies that show that women who have cancer involved in 4 or more lymph nodes and the lymphovascular system have a much higher chance of a localized recurrence even with a mastectomy and chemo. Wtf??? It's the rudest thing I've ever heard. Seriously. She also tells me that in her opinion, it will be difficult for me to find a radiologist who won't recommend radiation because I'm so young. No one will take a chance on me. I guess that's good - but I don't want radiation. Period. I argue my case to Dr. McAndrew.

First, radiation will only prolong this horrific period of my life. I'd like to get on with it, please. Second, radiation often negatively affects the lymph system and I'm already having so many problems with the few remaining lymph nodes I have in my left arm (I finally have full range of motion back, but am pretty sure I also have lymphedema. I did a very light yoga practice - so light I actually fell asleep - and my arm blew up that same night. It still hasn't gone back down. I had been told that lymphedema is rare - like only 1% of people get it - so of course...I'm one of them). Finally, it's significantly more complicated to reconstruct breasts with radiated skin. It looks freakish. Like plastic wrap, I've been told. To avoid looking like a circus freak, I will probably need to have the latissimus muscles in my back removed in addition to implants which would only prolong and worsen my recovery. One doctor told me you don't need the latissimus muscle but um, it's part of my body, so I kindof think I need it. I was told that the lumpectomy was a piece of cake. It wasn't. I can't begin to fathom how long I won't be able to lift my children with lots of missing body parts.

Dr. McAndrew agrees with everything I've said but reminds me that as shitty as all of that is - getting cancer again is worse. Fuck.

We talk more about what I can do to ward off a recurrence, and sadly, diet and exercise are my only weapons. There's no pharmacological prevention at this time for triple negative tumors. There are some ongoing clinical trials - but no results yet. The drug that's being tested apparently has horrendous side affects and costs $5000 per month. Just in case losing all of our money in the stock market wasn't enough to drive us to the poor house (not to mention the cost of being pregnant with cancer). Before she leaves, Dr. McAndrew hugs me again and tells me that she doesn't know how I'm doing it, but my attitude is amazing. "You're an inspiration," she says. I've been told that a lot lately. I'm an inspiration, a rock, the strongest woman lots of people have ever known, a hero. Am I? I cry about 3938874 times a day and usually cry myself to sleep. Not so heroic. And really, what else am I supposed to do? Give up? Die now? I'm just slugging through each day as it comes. I think it's what anyone would do. Right?

I think I'm done with my appointment, but I have to have a blood draw. Crap. More torture. John, a nurse I've never met or seen, greets me and tells me he's going to access my port. He's hot. "Are you always here on Tuesdays," I ask him? "I've never seen you before." A new oncology pick-up line? Apparently he's there on Tuesdays and I have no idea how I've missed him. He tells me to take in a deep breath...I prepare myself for the worst and am a little afraid that he's not using the topical numbing agent Anne usually uses. And he's done. No pain at all. "I love you," I tell him. "Can you always do that for me?" I ask. He laughs. I don't. "I'm totally serious." He says he's happy to help with my treatment.

My blood results are apparently good. Everyone is pleased.

I go home and Miles greets me with a giant smile and says "hiyeeee." He bounces up and down with excitement saying "mama mama mama." It's the best thing ever. Not a bad day.

Friday, October 10, 2008

Bad Day

It's one of my days with Miles that I always look forward to. No nanny, no appointments, just me and him. Lately, that's not how my "Miles" days go. Today all I had scheduled was a session with my physical therapist in the morning so I thought I'd have almost all day with my monkey. But late last night, I felt a large, hard lump near my left armpit and completely freaked out. Logically, I knew that it would be rare to develop a new tumor while on chemo, but I am rare in everything that's occurred so far so I was terrified. Boris tried to assure me that it couldn't be a new tumor but I reminded him that he didn't think the first tumor was cancer either. So he stopped talking. I emailed Dr. Funk at 1000pm and let her know about the lump. She responded right away that the lump was probably fluid, but that I should come in first thing in the morning. I can't believe this is happening. I mean, for the love of God. Seriously? I cry myself to sleep.

Thankfully, Dr. Funk was right and the lump is fluid and scar tissue. She tells me that I can in fact develop a new tumor while on chemo and says that I should absolutely come in any time I feel anything. I wonder what I'll do when I have no breasts to feel. Can you feel anything with totally fake boobs? How will I know if there's a new tumor somewhere? I'm so relieved that I cry as I leave her office. But I'm also crying because I can't imagine getting to a place where I'm not deathly afraid of my body and new cancers and dying way too young. I'm afraid I'm going to be afraid forever.

Before going to my physical therapy appointment, I stop at the wig maker's because ironically, I think my wig needs to be curlier. He's glad I stopped in because the pieces he's made from my real hair are ready. He places them on my head and shows me how to wear them with a bandanna. I well up with tears to see me with my own hair back on my head (even bald on top, it's amazing and so sad). I can't stop crying.

In the elevator ride up to the physical therapist's office, an elderly woman looks at my scarf. She turns away but then notices my belly and stares. A lot. It's a very slow elevator. She looks at me and gives a nervous smile as she continues to look at my scarf and belly. I want to turn to her and say, "It really is what you're thinking. I'm really pregnant and I really have cancer." But I don't. I just smile back.

The tears continue at the physical therapist's as she massages the cording in my left arm. No one's quite sure what the cording is or why some people get it and some people don't, but it's excruciating and preventing me from having full range of motion in my arm. She starts to massage the left side of my body near my armpit and tells me that the muscle is so tight it feels like bone. She asks if I'm okay and it's only then that I realize I'm crying because it hurts so badly. She tells me the cording actually feels worse near my elbow. "That's very rare," she says. Of course it is. I'm so over being rare. Can't I just be fucking normal and on the the right side of a statistic for like, 5 minutes? 2 minutes? 1 second? I'm tired of being in pain and yet, this is nothing compared to what I have in store for me. How will I survive the next year? There's only more pain - real pain compared to what I'm going through now. And surgery after surgery after surgery. It's totally overwhelming.

I guess I'm just tired period. Everything seems draining and everything seems to take forever. Although I can now take a 3 minute shower, everything else takes so long. I used to shower and walk out the door 10 minutes later. I didn't do anything to my hair (I stared blankly at the wig maker when he told me about brushing and styling my wig as I didn't own a brush, hairdryer, rollers, curling iron, hairspray....until now). I wear almost no make up (if I can't put it on at a stop light in the car, I don't wear it). Now, I have to make sure my wig is brushed and quaffed, then I have to tape it to my head (sounds easy, but getting it on right without half of the hair stuck to the tape is quite a feat for me). If I eat, I have to rinse my mouth with a hot water solution comprised of salt and baking soda, then again with a prescription mouthwash (to keep gross mucositis away). I have to do arm stretches so that I can hopefully raise my left arm above my head at some point soon. I have to put on my compression sleeve and glove. It's exhausting. Plus, everything is moving in slow motion. It's been the longest 6 weeks of my life. Even my pregnancy seems to be moving slowly.

I guess time flies when you're having fun and goes in slow motion when you're suffering?

Tuesday, October 7, 2008

Chemo Round Two

Nitasha is my date for round 2 of chemo. We met in law school through a mutual friend. I liked her right away (she's one of those people that everyone likes right away). She's easy going and friendly and just has an air about her that makes you want to be with her. One day we were taking a walk after one of our classes and she asked me if I wanted to drive to San Francisco for dinner (we were at UC Davis). I think she expected me to say no because she was shocked when I said, "Absolutely!" Once we realized our shared love of food - we fell in love and have been ever since. She's one of the few people I can be with for hours on end without getting annoyed and is probably the only person on earth I can travel with for extended periods of time except for Boris. So it's fitting that Boris and I call her our wife. She getting married soon but rather than giving her up to her fiance, we've informed him that we're adopting him into the marriage, like one happy polygamist family.

Nitasha picks me up on time (quite a feat!). Miles and our nanny are playing outside. As I'm leaving I kiss Miles. He waives and repeatedly says "bye, bye, byeeeee." I melt (because he's so delicious and it's a million degrees outside). We arrive at Tower at 1000am and are led to my chair for the day. The first order of business is a blood draw to see how I'm doing. Anne tells me to take a deep breath in and exhale as she sticks the tubing into my port. "Owww!" I exclaim. "Hmmmm" she says. She's not getting any blood and starts moving the tube around. I start sweating as it hurts like hell. "Keep breathing," Anne says. "Sometimes the tube hits the side of the port so if I can't get this in, we may have to start again." Oh shit. Oh shit. She tells me that this happens a lot but she doesn't like to tell patients since it's quite traumatic. We have to start again. I'm traumatized. She pulls the tubing out, and I'm pricked (a major understatement if you've ever seen the size of the tubing used with a port) again. I want to cry it hurts so bad - but I don't because I look up at Nitasha and she looks like she's going to cry. I tell her I'm okay and just need to mop my face off and take some deep breaths.

Anne comes back with my blood results and says my numbers are great. But then Angela comes over and says my white blood count is really high. Too high, she thinks. I had told both of them that Dr. Funk suggested Dr. McAndrew look at my left breast to see if she thought it was infected. Given my high white blood white count, Angela wants to take a look right away. She does and what she sees is apparently really bad because she starts shaking her head and saying "oh no" and "I'm going to get Dr. McAndrew right away," and "this isn't good," and a flury of other statements that scare the shit out of me. Dr. McAndrew comes in and looks a little alarmed as well, although, like Dr. Funk, she thinks it would be unusual for me to have an infection without pain or a fever. She tells me that some pregnant women have really high white blood counts and has Angela call Dr. Ottavi. Dr. Ottavi is amazing as usual and gets on the phone immediately. She tells Angela that last year when I was pregnant with Miles, my white counts were about the same as they are now. So, Dr. McAndrew decides that I'm okay and can move forward with today's chemo infusion.

So an hour after arriving, we finally begin. The rest of the day is thankfully uneventful. Boris brings us lunch and by 300pm, I'm hydrated and poisoned and can go home. My head is killing me and I feel slugish. It's amazing to me how fast the drugs work. Within hours, my indigestion is back. could be worse. That's my mantra. And I can't wait to see Miles. As Anne is cleaning my port before I leave, she asks if I want to leave the needle in to avoid any possible torture the next day at hydration. Great idea, I think. I'll avoid being stuck with the tube any day. But it was a bad choice.

By nighttime, my arm is so incredibly sore that I don't want to move it. And my left breast is so swollen and red it's shocking. Boris fears the stitches might burst. I email Dr. Funk to ask her if this is normal or if I get to see her...again tomorrow. Just another thing to worry about. Fabulous. She reassures me that the swelling is a result of all the fluids I've been given and that I'm okay. She's right. By morning things are back to normal (if that's even possible under the circumstances).

2 rounds down. 4 to go.

Monday, October 6, 2008

The Day Before

As you might imagine, being pregnant with cancer and the mother of a 1 one year who needs to get into pre-school in West Los Angeles, is insanely hectic. Here's an example of my weekly schedule:

Toddler Program

Chemo (or blood draw and/or meeting with Dr. McAndrew)

Preschool Tour


Physical Therapy

Plus, I have monthly appointments with Dr. Ottavi and Dr. Silverman and intermittent appointments with radiologists, plastic surgeons, Dr. Funk, etc.

It's the Monday before round 2 of chemo. I start my day off with acupuncture with Dr. Dao at the Tao of Wellness. He's told me that he will protect my baby, stave off nausea and will help my hair grow back quickly. Not bad, right? I love him. Today was the first day that I ventured out in a scarf sans wig. I figured that Dr. Dao was going to stick needles in my head, so why bother dawning the wig? Dr. Dao compliments my head shape and tells me that his is not so nice. He knows this because in China, all boys are required to keep their heads shaved until high school (since I've watched Miles and his little friends rub their heads together and lick everything in sight, I think China may be on to something with this. I bet they have far fewer lice outbreaks than we do).

I had expected to have a few minutes in between acupuncture and therapy to go home and get something to eat and almost as important, put on my wig. But Dr. Dao was running late and I was starving, and I realized that I was going to have to go out in public, for real, in my scarf. I live in Beverlywood where it feels like 99% of the neighborhood wears some type of head covering and there are many observant women around the city. You'd think I'd feel comfortable wearing a scarf. But you can tell there's hair underneath those women's' head coverings of choice. Me...not so much. I stop at Literati Cafe to get a sandwich. Several people look up from their tables which I would normally think is totally normal, but I'm so self conscious I can't help wondering what they're thinking. Other than being bald, I don't look sick. At least I don't think I do. I don't know. I still have my eyebrows and eyelashes and I've been told I have "good coloring," (whatever that means). Normally I don't care what people think and I don't know why I don't want strangers to know I have cancer, but I care and I don't. I guess I don't like pity and being pregnant with cancer gets some pretty heartbreaking looks. On a side note, I do have acne which makes me want to shoot myself. Seriously. I'd way rather be bald than have bad skin. Just ask my dermatologist who I have kept in business for years as I run to her the few times a year I get a zit. I realize that like my mother, I have good skin, but when a blemish arises, I freak out. I had read that chemo sometimes causes acne. During round 1 of chemo, I asked the nutritionist at Tower whether I was likely to break out from treatments. "I'm just wondering if I'm going to be bald and pregnant and have acne," I asked. A nurse working nearby raised an eyebrow and looked at me. "Had to look up for that one," she said. "Is that what's going to throw you over the edge?" she asked. "Absolutely," I say. And it kindof has.

From there, I go see my new therapist, a two time breast cancer survivor who doesn't seem to even notice I've lost my hair. We discuss how all I can do is my best during this battle. But I tell her that I can do my best and still die and leave behind the most wonderful husband and two small children and then my best is unacceptable. She's the only person who doesn't tell me that death is not an option or that if I'm positive and fight I'll live. She knows that's total bullshit and that I can fight like hell with the most positive attitude ever...and still die. That's what cancer is: The possibility of death no matter what you do. But my job is to learn how to not be afraid of what could happen and learn to live a good life while knowing that life is fragile and uncertain and that sadly, death is a real possibility (and not in the intellectual sense that people like to discuss with me. I hear often that "we're all going to die someday." I usually refrain from telling those people to fuck off, but that's what I'm thinking.)

After therapy I race home, put on my wig, grab Miles, and race to his toddler program. It's over 80 degrees so after lugging Miles up the stairs to the classroom, back down the stairs to the playground and chasing him around, I feel my wig lift up in the back and I spend a good chunk of class worried my wig is going to fall off. Only one mom in my class knows what's going on with me. Trying to make small talk with the other moms who I don't know is often painful. But all I can do is my best...

Then it's back home with Miles for lunch and then I'm off to see Dr. Funk because my left breast is still very swollen and red even though she's drained excess fluid out of it twice. She wants to make sure there's no fluid in my armpit that could be affecting my range of motion. Dr. Funk doesn't see any fluid in my armpit and is surprised at how much trouble I'm having lifting my arm. It's rare...of course. She also doesn't think my breast is infected because I have no pain or fever. She says my breast and skin are angry because of the chemo, which makes sense. I start asking her a ton of questions about radiation and my reconstruction and she spends a long time telling me what she knows but urges me to meet with radiologists now. Normally she doesn't suggest that patients meet with them until they're almost finished with their first cycle of chemo, but since I like to know as much as possible as soon as possible, she thinks it will put me ease. I agree.

I also ask her if my prognosis numbers change given that I'm having a bi-lateral mastectomy and will have my ovaries removed at some point in the next 5 years (meeting with gynecological oncologists is on my very long "to do" list). The answer is sadly no. The 44% of recurrence and 40% of death wouldn't be from a new cancer in my reproductive organs. Instead, it's a recurrence of my current breast cancer that would recur (and potentially kill me) in my liver, brain, bones or spine. And on that happy note, I go home.

I have a pounding headache. I wonder if it's psychosomatic.

Wednesday, October 1, 2008

Head's Up

It's 830pm and Boris and I are eating dinner. I've worn my hair up all day and my head is starting to hurt. I take my rubber-band out and notice a lot of hair has come out as well. Shit. My hair is starting to go. I was hoping that the doctors would be wrong, that somehow, my pregnancy hormones and prenatal vitamins would prevent baldness. I try to ignore my rubber-band because I'm used to shedding. I think it goes along with having lots of curly hair. But now I'm sitting on the couch with Boris, tugging on my hair like I do every night to make sure it's not going anywhere's going somewhere. It's coming out in small clumps and I'm freaking out. Boris is ready to shave his head tonight, but for some reason, I'm still hoping this isn't really happening.

But it is. Each time I rest my head on a pillow, I lift my head up immediately and take a cautious peek to see if there's any hair on it. "What on earth are you doing?" Boris wants to know. "I'm just seeing if there's much falling out," I say. Boris asks if Gossip Girl will cause more or less hair to fall out and should we watch it now?

A few days after round 1 of chemo, my head started itching and I would routinely tell Boris at odd hours of the night and morning that I thought my hair was falling out. It wasn't. One morning at 400am, I started sneezing and woke Boris up to inform him that I was sure my nose hair was falling out. "Um..." he grunted, "try to sleep, Snuggler," he said. Not a bad response for 400am.

On the day I was diagnosed with cancer, Boris informed me that he was going to shave his head in an act of solidarity. For the past week, he's been jokingly telling me that he needs a haircut and wishes my hair would fall out already so he can shave his off. I ask him if he's sure he wants to shave his head. "Do you think we'll freak Miles out if we're both bald?" I ask. Boris doesn't think so. I remind him that I'm going to wear a fabulous wig 24 hours a day, except at pre-school interviews where I'm going in bald and as giantly pregnant looking as possible.

I've always had a love-hate relationship with my hair. When I was younger, I had stick straight hair which I didn't appreciate until I hit puberty and it suddenly got curly. But not good curly. Confused curly. Parts were straight, parts were wavy, parts were curly. All of it was huge. I was in denial for a few years and tried to blow dry it straight. Not something most 12 year olds are good at. My hair looked crazy. I had to give in to the curl which got tighter and tighter for the next few years. But then the curls started to loosen and the bulk lessened and after I graduated from law school, I loved my hair. It was good curly - like Sarah Jessica Parker curly. I encouraged everyone I could to embrace their curl. So I've learned to love and appreciate my hair just in time to lose it. I have no idea how it will grow back or what I'll look like.

When I learned I had cancer and that my hair would fall out, one of the first things I did was find out who the best wig maker in the city was. I am not ashamed that I'm vain. I was at his salon 2 days later. He took pictures, locks of my hair, $4000 and promised I'd be thrilled with my new hair. For $4000 I fucking better be. One friend thinks that for the price, the wig ought to come with a Sherpa and a masseuse. I agree. The wig maker tells me that when my hair starts to fall out, I should come to the salon immediately so that he can cut my hair. He's going to make some pieces out of it that I can wear with a scarf or hat (neither of which I've ever worn in my life) when I don't want to wear the wig. For $4000, I have to wear the wig 24 hours a day for the rest of my life, I tell him. I also ask if I'm a bad person for not donating my hair to people less fortunate than I am. He says I'm a good person for thinking about the donation. Besides, I can donate the wig and pieces when my new hair grows in.

I've only seen the wig once. It was sitting on a mannequin head. The wig maker wanted to know what I thought. What do I think? I think I see a wig on a mannequin head. I can't picture what it will look like on me, nor do I want to. But the curl isn't the same as mine and I swear it's kindof red. Plus, the wig maker informs me that I'll need bangs. Me? Bangs? Oy. He can't fit the wig or "style it" until my hair falls there's something to look forward to.

I wake up this morning and immediately check out my pillow. No hair. But when I run my fingers through my hair, clumps come out. I show Boris. "Look how much falls out when I do this," I say. "Well why don't you stop doing that, genius," he says and smiles. I don't know what to do. I don't want to watch my hair slowly fall out over the next few days, but what if it's not going to totally fall out? Maybe it's just thinning? Wishful thinking. It's falling out. But just on my head. Of course my bikini, armpit and leg hair are hanging tough. Rude! All the doctors have said with confidence that every last hair on my head is going and once it starts falling out, it will all fall out in 2 or 3 days.

I speak to the wig maker and go in at 1100am. It's almost 100 degrees outside so it's a perfect day to wear a wig. I bring an old friend, Suzanne, who had been one of my dearest friends on earth and I stopped talking to her after college for reasons that are embarrassingly trivial. Ironically, we were reunited at our high school reunion which she resisted going to and have been in touch since. She is brutally honest, even if you're pregnant with cancer. Just the kind of friend I need for this. She's amazing. As the wig maker is about to shave my head, Suzanne asks if I'm sure I want to watch. "It's going to happen whether you're looking or not. You sure you don't want me to turn the chair around?" she asks. I'm sure. The wig maker shears my thick, curls off. I feel like a sheep. It's shocking to watch the hair fall away. When the last clump falls to the floor, I turn to Suzanne and say "well, that's done." "Yes, that's done," she says. I tell her I look like a man and she says "funny, I was just thinking how beautiful you look." I'm fitted with my wig and am relieved that it doesn't look like a wig. It doesn't look like my hair, but it doesn't look fake and I'm okay with it. Suzanne assures me the color is perfect and that it's unbelievable how real it looks. No one will ever know it's a wig she promises. I believe her.

I come home to greet Miles and Boris with my new do. Miles thinks it's funny and laughs and giggles at me. Boris thinks I look great with bangs and thinks the bangs make me look younger. "You look like a pregnant teenager," he says. Fantastic. It's hot and I'm not used to the wig, so I decide to sport my bald head around the house. Miles loves it. He rubs his hands on my head and even takes a lick. I decide I look pretty badass -- like G.I. Jane with a perfectly shaped head. This was one of the scariest parts of chemo to me since I am vain and couldn't imagine looking okay bald. But I do look okay and I even like it...just a little.

Boris comes home from work with dinner. I'm on the treadmill - bald. He looks at me and says "you look good," then walks upstairs like it's totally normal to see your pregnant, bald wife strutting her stuff on the treadmill. I look in the mirror and think he's right.