Wednesday, November 26, 2008

Things I've Learned From Cancer So Far

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, November 18, 2008

Chemo Round Four

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

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

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

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

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

Sunday, November 16, 2008


I feel him move for the first time at 756pm on September 24. My miracle baby. I am in love and so happy.

Today (10.13) I have my first big structural ultrasound. I'm 19 weeks pregnant and have gone through 2 rounds of chemo. Dr.
Silverman's office is packed. I'm in for a wait. After about 30 minutes I realize my heart is pounding. I also realize it's pounding not because I'm irritated that I've been waiting almost an hour (although I am, just a little) but because I'm so nervous about this ultrasound. In my heart I just know that Miracle is okay, but given the onslaught of beyond shitty news I've received lately, I can't help but be nervous that I'm wrong. I certainly am getting bigger so I assume he is too, but I won't be relieved until I hear Dr. Silverman tell me that Miracle is perfect.

And he does. Miracle is a miracle. As Dr. Silverman navigates the ultrasound to inspect every inch of Miracle's body, he tells me how pleased he is with his heart and his brain and his spine looks perfect. He has 2 hands and 2 feet, each with 5 digits. No cleft lip (I wonder who cares about that, but still it's a relief. Boris and I wonder out loud if anyone aborts when they find one, and he tells us that some people do. I'm shocked. "I guess everyone is entitled to their choice, right?" I ask. Dr. Silverman replies that unless a certain governor from Alaska has her way, yes.). Dr. Silverman looks at me and smiles and says "you have nothing to be concerned about at this point. He's doing just great." I tell Dr. Silverman that I call Miracle "Miracle or Warrior," and Dr. Silverman agrees. "He's doing it," he says. Then he tells me how pleased he is to see me looking so great and tolerating treatment so well.

A week later I get my results back from the state mandated
AFP blood test for spina bifida. My numbers are great and there's no concern there either. Now I'm 24 weeks pregnant and just saw Dr. Ottavi. Miracle is doing great. He's even a little big for his age. I have my next appointment with Dr. Silverman next week and will hope for the continued good news. I will have undergone 4 rounds of chemo and if there's going to be growth issues, we'll start to see them now. I used to joke that I'd be happy with a smaller baby given that Miles was over 9 pounds and I actually feared exploding, but now I'm hoping that my proclivity for breeding giant babies continues. When it comes to Miracle, the news seems to only be good and I'll hope it stays that way.

In the meantime, I can feel him moving more and more which is exciting and comforting. Often I'm so focused on cancer that I forget I'm pregnant. I'm so consumed with fear and sadness and treatment and side effects and 9879878792 doctors' appointments that have nothing to do with pregnancy. He usually gives me a little kick in one of my forgetful or depressed moments and I'll rub my belly and thank him for the reminder. And just when I start to freak out that I haven't felt him in what feels like too long, he gives me a reassuring nudge. I can feel him most at night, mostly because I think I'm so busy during the day. My favorite moments are when I'm getting Miles ready for bed. I still give Miles one bottle at night, not because he won't drink out of a cup, but because it's the only 5 minutes he snuggles with me. I'm going to give him that bottle until he's 12. Miles lies quietly with me, stroking my face or arm, or holding my hand, and I can feel Miracle busily moving around. Both my boys and me. It usually brings me to tears (not that that's hard to do these days). I tell Miles that's his baby brother in my belly. Of course Miles has no concept of pregnancy or brother, but he'll often smile and pat my belly
(I think more because of his recent fascination with my ever disappearing belly button, but still, it's sweet) and will say "baby."

I often forget I'm pregnant when I'm out as well because I'm so focused on whether my wig is going to fly off, or if people know it's a wig or if I'm wearing my hair pieces with a scarf whether people think I'm auditioning for Rock of Love. Then someone will come up to me and ask when I'm due. If I'm with Miles, they'll raise an eyebrow and tell me that I'm crazy or that I'm going to have my hands full with 2 boys under 2. So sweet of them to share their unsolicited and unappreciated opinions. If they only knew that I'm going to have 2 boys under 2 while undergoing 12 weekly rounds of chemo, possibly 28 rounds of radiation, a double-mastectomy and reconstruction....they might keel over. I might too.

I was lamenting to my therapist that there is so much bad shit going on that I'm not enjoying my pregnancy the way I want to. Cancer has made me realize what a gift pregnancy is and how lucky I am to be pregnant. Although I'm hopeful that I will have more children, whether the chemo will destroy my ovaries is unknown. I have been told that I have a 40-60% chance of going through menopause after chemo. But even if my fertility is decreased maybe it will take me a month or two to get pregnant instead of 1 day. Boris would be thrilled. Although he was excited to find out I was pregnant with Miracle, he did tell me that part of him had hoped that this time we'd have to have sex more than once before I was pregnant.

My therapist suggested taking time each day "attune" with Miracle. I told her I talk to him all the time, but I usually end up apologizing to him for less than optimal womb conditions. She reminds me how well he's doing and that I'm not only eating for two, but filtering for two as well. "You're protecting him and he's protecting you," she says. "Look how well you're doing. You don't think that he's doing just as well? You think it's a coincidence that pregnant women have fewer side effects to chemo? Or that your doctors are telling you that your baby is perfect and healthy and growing and that every woman you've spoken to who has done this before you has given birth to a perfect, healthy baby? You are both miracles and you are both warriors (I've started calling Miracle "Miracle Warrior" since he is kicking ass)."

So now I try to take a few minutes each day to tell my Miracle Warrior how much I love him and how fucking amazing and strong he is and that I'm doing everything in my power to protect him. And when he gives me a nudge or a kick I smile and pat my belly and if I'm with Miles I put his little hand on my belly and we look at each other and grin.

Saturday, November 15, 2008

Going Nucular [sic]

When Dr. McAndrew told me I needed radiation, I was in shock. I'm having 18 rounds of chemo and a double mastectomy. I've already had a lumpectomy and 17 lymph nodes removed. Why on earth would I need radiation? She explains, but tells me to meet with some radiologists who can provide more statistics and information than she can. Dr. Funk gives me 2 referrals. Both have been practicing forever. One is a very conservative woman who apparently will tell me to radiate no matter what, and one is a little more cutting edge, and if anyone will tell me I don't need to radiate, it's him. After doing some brief research online, I tell Boris that unless radiation is going to drastically improve my chances of living, I'm not getting it. Period. I don't need another 7 or 8 weeks of hellish daily treatment and I don't want a significantly more complicated (and ugly) reconstructive surgery.

My first meeting is with the more conservative doctor. She's at Cedars. I check in at the front desk and wait for my escort to take me to the radiation wing. My escort greets me, picks up my file and leads me to an elevator. I ask to see my file out of curiosity. He looks concerned and tells me I'm not allowed to look in it. "Well that can't be right," I say. "It's about me." Now there's no way I'm not going to see the file so I tell him to get a supervisor, doctor, whoever, but I'm not moving until I see my file. "Uh, okay," he says. He goes to speak to someone at the front desk who comes out to speak to me. "Of course you can see your file," he says. "There are some privacy issues, but go ahead." Of course there's nothing in the file since I haven't met with the doctor yet. Whatever.

The waiting room of the radiation center is packed. Dressing rooms flank the back wall. I think it would be odd and uncomfortable to change in such a public place and then have to wait in my robe. I'm already unhappy. To make matters worse, the television is set to Fox News and Sarah Palin is on. She's talking about her wardrobe and how her newly acquired expensive clothing will go to a consignment store in Anchorage. I have the same reaction to her voice, wink and smile that I have to George W's. I cringe, my skin crawls, and I'm hoping someone might shoot me. But they don't. Instead, I wait and wait and wait and wait. Boris joins me. We wait and wait and wait and wait. Finally after 1 hour, a nurse approaches us and apologizes for the delay. She explains that the front desk just notified her that I was here 10 minutes ago. I'm glad the ship is running smoothly.

We're led into a small room with an examination table and a few chairs. The nurse asks me the obligatory questions about my health and then asks if I'd like some information about radiation. "Yes, please." She returns with a pamphlet and some cream that she says I'll want to use daily. "Um, why do I need to use this?" I ask. She explains that the cream may help my skin from burning during treatment. "But I'm months away from treatment," I say. "Oh," she responds. "I'm having a consult with the doctor, not treatment." I'm scared. Shouldn't she know that? She leaves to get the doctor.

A tall, attractive woman in her 50's enters the room and introduces herself. She tells me that she was at the tumor board meetings a few months ago when my case was reviewed (multiple times) so she knows a great deal about me. We talk about my treatment so far, and then I ask her to please make the case for radiation. She talks for well over an hour and gives one of the more scattered explanations we've heard. I think that Boris and I are about as educated as lay people can be about this stuff and I can tell that Boris is as confused as I am. We do get the basics though: She is recommending approximately 28 rounds of daily radiation of the entire left breast area, including an important lymph node on my upper chest (the lymph node is difficult to follow and if the cancer recurs there I'm kindof fucked) and part of my left lung which will die. Without radiation, I have a 20% chance of a local recurrence; with radiation my survival rate increases by 5%, my chances of developing sarcoma are small (but she can't give me a number), my chances of lymphedema are great, if I have reconstruction that involves an implant, I have a 5-70% chance (glad that's so specific) of the tissue around the implant hardening and contracting into a painful, uneven mess and if I ever smoked a "significant" number of cigarettes, my chances of developing lung cancer in 10+ years are unknown. Like any good lawyer, I ask what "significant" means. She doesn't know. The studies are inconclusive. Great. I did smoke for a few years in high school and college and lord knows exactly how many cigarettes. I inhaled. Plus, she explains that some women do experience burns in the radiated area that might never go away and the tissue will be forever damaged and weakened. Fucking fabulous.

I tell Boris there is no fucking way I'm going through that for 5%. 5%!? He's silent. Then he suggests that rather than discussing this now, let's speak to the second radiologist before making any decisions. Fine.

Two weeks later we meet with radiologist number 2 at Vantage Center for Radiation Therapy. The difference between Vantage and Cedars is pretty remarkable. It's small, not swamped, Fox News is not on and I wait for all of 2 minutes before being brought into a small office where I'm to meet with a nurse (for the obligatory questions) and then the doctor. I like Dr. Botnick right away. He's sarcastic and funny and doesn't make me feel like I'm going to die. The first thing he says is that he works for me, not any of my doctors and he's here to make me happy. I tell him the only way he can do that is to tell me that I don't need radiation. "I can't do that," he says. "You absolutely need radiation and you won't find a good radiologist on earth to tell you otherwise. I'm not going to push you into anything you don't want to do. But you need radiation." He says that he doesn't know who scared the shit out of me about it, but my fears are unfounded. I ask him about sarcomas and lung cancer and looking like a circus freak after surgery to only increase my survival statistic by 5%. "First of all," he says, "you could never look like a circus freak. You're attractive and lovely and radiation won't change that." Love. "Second," he continues, "5% is 5%. It all adds up, right?" I look at Boris and know that he agrees. Shit.

When I tell him how shitty my numbers are, Dr. Botnick waives his wrist like a true New York Jew (albeit from Boston) and tells me to stop listening to everyone's numbers. He says with confidence that I'm going to be fine. "You only have 4 nodes involved (only!?) and had a small tumor," he says. "I have treated plenty of women who live long lives who had 20 and 30 nodes involved. And women with cancer in both breasts. And women with giant tumors. You are going to be fine. Really." He says the risks are so small that he's actually never seen most of them in all of his years in practice. I inform him that I have met a woman who developed a secondary cancer after receiving radiation for breast cancer. He doesn't care. But the most shocking thing that Dr. Botnick tells me is that I don't need a bi-lateral mastectomy. Or even a mastectomy of the left breast. What!??? He believes that prophylactic mastectomies are becoming popular but there's no research to prove they reduce my risk of recurrence. But I'm a BRCA 1 carrier, I remind him. I have like, a bazillion percent chance of a new cancer in my right breast. He says I'm going to be closely monitored. Closely monitored enough that if a recurrence or new cancer were to appear, I'd know early on. I remind him that everyone thought I had caught this one early on and we all know how that turned out. But he tells me that if I don't want to lose my body parts, I don't have to. And at the very least I don't have to lose them while I'm dealing with a newborn. After I tell him that I hate, hate, hate fake breasts, he tells me that I'm not going to be happy with implants because they look fake and they don't do well with radiation. "Meet with plastic surgeons and find out what your options are. I'm here to answer any questions and remember that you don't have to make any decisions right now."

As we leave, I ask Boris if he thinks I should get the radiation. He does. "Snuggler," he says, "I know it's inconvenient and complicated, but I don't care what you look like and I don't think you should make this decision based on plastic surgery. I want you to live for a long time and I want you to do everything humanly possible to do that." I cry. He's right. 5% is 5%. Nothing to dismiss lightly.

I go home and email Dr. Funk for plastic surgeon referrals. I'll start making appointments in the morning.

Sunday, November 9, 2008

The Bald and the Bellyful

Two weeks ago, my friend Jenny called me to tell me that she and her Mom wanted to do the upcoming City of Hope Walk for breast cancer. She asked me if I wanted to participate. I did. We decided that it would be most effective if I became the team captain as we assumed people would be more likely to donate money to me than to others, even if they were walking for me. Jenny tells me that her parents, sister and Aunt will be on our team and names a few of our friends who she knows want to walk as well. I go online to register. It's easy until I have to come up with a team name. I'm stumped. So is Jenny. I ask Boris if he can help. He rattles off a few suggestions like Due or Die which I reject (hello!?) and then he comes up with The Bald and the Bellyful. Perfect. I send out an email to almost everyone I can think of asking for money. Shortly after, a friend emails me and tells me to look at the City of Hope fundraising page. "Its been an hour and you've raised over $1000," she wrote. "I guess I'm not the only one who thinks of you as their hero." Within 2 hours, I raise close to $3000 and receive several emails from people who want to join our team.

The response to my request is overwhelming. Friends from high school and college who I have not spoken to in years receive my email through friends and several join my team. Strangers donate large sums of money. Current and ex-colleagues donate and spread the word. I get introduced to Hilary Swank (long story but bottom line is that she is the nicest person ever). It's staggering. I quickly become the top fundraiser for the Los Angeles walk (thanks in part to my teammates who have their friends and family donate directly to me) and The Bald and the Bellyful rises to third place for the team to raise the most money. We raise more than Sav-On and Albertsons. As a naturally and maybe insanely competitive person, I become obsessed with our fundraising efforts and check the City of Hope page often to make sure I'm in the lead at all times. I am. In the end, The Bald and the Bellyful raised just under $20,000. Not bad for my first fundraising endeavor. Perhaps I'll take up a new career when I'm finished with treatment.

When Miles was a few months old, I joined a babygroup. One of the women I met in that group has a gorgeous son 1 day younger than Miles. She and I have become very close and over the past year, Boris and I have become close with her husband as well. The best way to describe her husband is a friendlier, more compassionate, less annoying Larry David. He has a filter, he just chooses not to use it. He's sarcastic as hell and we get along famously. One night Boris and I are having dinner at their house and we start discussing Facebook. He wants to know why we're not Facebook friends. "I don't know," I say. "I guess you haven't asked to be my friend." He wants to know why I haven't asked him to be my friend. "Oh, I don't really do that," I explain. I just collect friends." He laughs. I don't remember what we discuss next, but I comment that I'm nice and he responds, "you are so not nice. Have you seen Mean Girls?" he asks. I have. "Well you're Rachel McAdams." She was the queen bee who always got what she wanted regardless of what she had to do to get it. I deny this vigorously. Rachel McAdams was mean and narcissistic. I'm nice. "You're not mean, but you're not nice. You're a queen bee. You get what you want," he says. Sure, in high school I had my moments, really, really long moments and lots of them, but I'm older, wiser...nicer. But her husband is insistent, "You're always in charge. It's nothing to be ashamed of but nice, that's not how I would describe you." Since I can't convince him that I'm secretly Mother Theresa, we both agree to disagree. I don't lose arguments and neither does he.

The conversation comes to mind as the donations and words of love and support pour in for my walk. I inform his wife that since I'm the top fundraiser for the City of Hope, people must be really scared of me, or they think I'm really nice. Or I suppose they could love and support me even if I am, or was, a Mean Girl. But then I realize that what he meant was that I'm spirited, passionate, unwilling to lose. If being someone who is unrelenting, even in my battle against this disease makes me a Mean Girl, then I'll take it. Because the truth of the matter is I do always get what I want. Right now, there's only one thing I want: to kick the crap out of cancer's ass and give birth to another perfect, healthy baby. And I never lose.

The morning of the walk, I put on my "In the Fight" Stand Up 2 Cancer t-shirt and bright orange scarf. I opted not to get a City of Hope t-shirt because I knew it couldn't possibly be cute (and I was right). I decide that although our walk is only a 5K, our team could use fuel and I go to get bagels for everyone. As I get in to the long line at the Bagel Factory, I suddenly realize that my "I'm pregnant with cancer" outfit for the walk may be a bit much for bagels. I run into a friend in line and he tells me I don't look like I have cancer, I just look orthodox (preggo with a head wrap). He's orthodox, so he'd know, although he says the fact that I'm talking to him is kindof a giveaway. I head home and slowly my teammates arrive at my house. We pile into a few cars and head off to Duarte with google maps in hand. There's no traffic on the series of freeways I've never been on (and neither has most of my team even though we're all from L.A.). We pass cities I've heard of like Montebello, but never knew where they were. As we're driving, I get a call from a young woman who Hilary Swank introduced me to. She was diagnosed with a triple negative tumor while 4 months pregnant and has a healthy, happy, perfect little girl who is nearing 5 months. She had emailed me the night before and in my response, I mentioned the City of Hope walk. She tells me that she and her husband are on their way and she hopes we can meet. I do, too.

Some of my teammates call to tell me they're stuck in terrible traffic waiting to exit the freeway. Boris decides to skip the traffic and informs us that he'll use his phone to figure out how to get us there. Miraculously (or maybe not so miraculous with an i-phone), he navigates us through Duarte and by dumb luck, we park 2 short blocks from the start line of the walk. As we're waiting for the rest of our team to park, one of our teammates, Heather, notices that several teams have signs and goes to an information booth to see if our team has one, too. The volunteer at the booth tells Heather that only teams of 10+ people have signs. Heather tells her that we not only have 10+ people but we are the number 3 team for raising funds and I was the number 1 fundraiser for the entire walk. "I was a little bitchy," Heather says, which is why I love her so. We find a sign that says The Bald and the Beautiful and decide that the City of Hope either screwed up our team name or team The Bald and the Beautiful mistakenly took The Bald and the Bellyful sign so we grab the sign, round up our team and proceed to the start line.

We notice that the volunteers at the start line for the 5k walk are rerouting the stragglers to the "Leisure Walk" entrance. We're told that they've closed the 5k route so they can open the street back up to cars. I don't think so. Neither does anyone else on my team and as we're told to go towards the Leisure Walk we all just nod, say okay, and walk through the cones and volunteers and start the 5k. If you've ever been to Duarte than you know that any walk can't possibly be scenic. Far from it. We're following the freeway. Breathing in the fumes and exhaust must be good for us. The buildings are impressive though and along the way we're met by volunteers who tell us to look up and waive to the patients watching from the windows above. Because we were late, we basically do the walk alone. While it was great to catch up with people I haven't seen in years, the walk wasn't emotional or inspirational to me in any way. Not like the Revlon walk my parents and I did a few years ago where we were surrounded by a sea of people who were survivors, walking in memory of friends and family members and where music played and speakers spoke and I was overwhelmed and awed. But I know several women who received treatment for breast cancer while pregnant at the City of Hope and am grateful for their research and facilities and am thrilled I could raise so much money.

Our team completes the walk as we're munching bagels. I get a call from the young woman Hilary (we're on a first name basis) introduced me to and we appropriately meet at the Survivor's Booth. It's so nice to put a face to her voice and we hug and compliment each other on how good we look given the circumstances and comment on what we normally look like. She looks at the sea of people standing around me and asks if they are all on my team. They are. I think there are 15 or 20 of us plus two munchkins in strollers. It's impressive and an honor. "Wow," she says. Wow is right.