Pandora's DNA: Tracing the Breast Cancer Genes Through History, Science, and One Family Tree

Home > Other > Pandora's DNA: Tracing the Breast Cancer Genes Through History, Science, and One Family Tree > Page 23
Pandora's DNA: Tracing the Breast Cancer Genes Through History, Science, and One Family Tree Page 23

by Lizzie Stark


  Although I’d checked these guys out and they seemed top rate, in the end, it wasn’t their expertise that convinced me, but my gut feeling. I liked this odd couple, and in the pit of my stomach, I felt I could trust them. If I was sailing into a strange, threatening new world, then I felt safe with Kirk and Spock at the helm.

  Maybe I was not the prone patient, the damsel to their heroes, though. After all, I had sought them out and made this choice, and something about that felt empowering. During the consultation, Ashikari kept congratulating me on saving my own life. In the months to come, some people—Internet commenters, friends, and so on—would go further and call my choice brave or heroic. I don’t think it was either, because on some level this didn’t feel optional—I couldn’t have chosen otherwise. I felt like I’d unwittingly entered a torture porn horror movie, or a Korean revenge drama, as if some psycho had broken into my house, leveled a gun at my head, and given me a choice between a slow, horrible death and mere torture. I chose pain.

  11 | Ta-Ta to Tatas

  I scheduled my mastectomy the same day I signed my first book contract. It felt like karmic retribution, to formalize both arrangements on the same day. One of my major life goals was to publish a book, and now I wouldn’t have that as a deathbed regret. That the hospital should have called to finalize the arrangements right after the contract-containing FedEx arrived seemed ironic—the things I most and least wanted converging at the same desk, as if I had to give up something precious in exchange for my heart’s desire.

  When I got off the phone with the hospital, I started crying again. Putting the date on the calendar made it feel real—my sealed doom given a concrete time and location. But the day was supposed to be a happy one. I’d signed my book contract. When I mailed it at the post office, I tried to smile for the selfie of me with the Priority Mail envelope, but it came out a grimace. The Facebook congratulations I normally live for—“likes” validate my solitary existence—barely puffed up my mood. Forty-two days until someone chainsawed off my breasts.

  In some ways, the countdown had begun long before that, after I decided to remove my breasts. For my last birthday with my real breasts—my twenty-eighth—I wanted lobster, something I’d heard had dropped in price thanks to the financial collapse, but the ones we bought for the celebratory dinner with my parents tasted funny, as if the crustaceans had gotten a bit long in the tooth, faintly bitter and off-flavor, the experience so unappealing that none of us would consume lobster again for years. The last Christmas with my breasts we spent at my parents’ house even though it was our year to visit George’s family. I remember nothing of that holiday except that a dear family friend who practiced Reiki wanted to meditate over me and I let her. We spent New Year’s in Boston, but I couldn’t take pleasure in the cheap champagne or the celebration. This year was going to suck. I’d gotten a giant zit on my chin right before the party and was feeling insecure about it; so I’d troweled on makeup. My unsteady hand hadn’t been able to draw in the red lip liner with the precision I would have preferred, so I spent the party feeling like a sad smeared clown in a bright yellow dress, making awkward small talk and wishing desperately that I could turn back the clock.

  By mid-January, in addition to committing to an always-dresses fashion statement—when you wear them with leggings, it’s sort of like sporting pajamas all the time—I’d also become obsessed with painting my nails and plucking my eyebrows, ways of doing something nice for myself that didn’t involve Häagen-Dazs or gin fizzes. I’d never been into the eyebrow thing for feminist reasons, but now it made me feel tidy and neat. Maybe it’d draw the eyes upward, away from my gut. I tried a new brand of makeup and used my first anti-aging eye cream. In retrospect, I now realize that with my femininity under threat from the surgery, I gravitated toward the hyper-feminine and the synthetic. If I wasn’t going to be a natural woman any more, fuck it, I could wear red lipstick as much as I wanted. One of the nice and terrible things about femininity is that a lot of it’s about the packaging—I could go through the motions of self-manicure, waxing, and eyelash curling whether or not my new body dewomanized me. I found my new urges peculiar because I have never considered myself a girly girl. My mother likes to joke that I entered my black phase in third grade and haven’t shaken it since—even though, in her best mom voice, she usually adds that pink looks so cute on me. I’d always felt like a person first, woman second, and I viewed femininity as a constrictive lens that society superimposed over my intelligence and curiosity. Yet, evidently, I valued it on a deeper level than I’d known.

  Forty-two days left with my breasts. Only forty-two. What did I need to do with them before they left me forever? Well, I wanted to have a bunch of sex with my husband, for starters, despite the libido-killing depression I was battling. Our encounters, rare though they were thanks to my emotional state, often dissolved into tears. When he touched my breasts, my mind would flash forward, and I’d envision a gloved hand gently curving a scalpel down toward my chest. This is one of the last times I’ll be able to feel them, I’d think. This is one of the last times with my breasts. It made me sad. And it’s not what you’re supposed to think about during sex. It’s not sexy; it’s awful.

  George was kind about this, more than kind. He hugged me and said comforting things and gave sympathy. But even this dissatisfied me because I wanted empathy, and no matter how much he tried to understand, he couldn’t grasp my particular sheen of sadness—I was losing the way my breasts looked in my favorite shirt, my capacity for sexual arousal, my body parts. He couldn’t understand my flavor of grief the way I wanted him to, because he is a man and he doesn’t wear the cultural context of breasts under his skin every day. This frustrated me—I wanted him to share my feelings because then I wouldn’t feel so alone in my grief, and though I knew it was irrational to want something from him that he couldn’t give, I selfishly wanted it anyway.

  My female relatives understood, but since we weren’t close, they passed little notes through my mom. Several months earlier, I had written about my mastectomy decision for the Today Show website, an article that garnered hundreds of comments and gave me my first taste of Internet hate—assertions that I was ugly and stupid and crazy for making this choice, that I should never have children, that I’d remove my brain if I had a risk of brain cancer, that I’d never have needed to do this if I’d practiced Ayurvedic medicine, drunk water with a basic pH, and become a vegetarian, no, a vegan, no, a raw foodist, or taken some extra vitamins or a tonic that totally cured this one guy of cancer this one time. But I wasn’t putting my life in the hands of anecdotal evidence—I required science-based medicine. To the one guy who told me that I should just go ahead and get cancer because it’s really a fungus that can be easily treated with baking soda, to the people who wanted me to become a fruitarian yogi, I say—go pedal your snake oil and false hope elsewhere. I know what happened to Trudy, and until you can provide time-tested scientific proof published in peer-reviewed medical journals, basically, you can bite me. It’s assholes like you that make things worse for cancer patients by telling them that they must have sinned greatly for God to punish them like this, as one doctor told Trudy, or that they had invited this illness into their lives with their negative attitudes. No. Nearly one in two American adults gets cancer. As columnist Molly Ivins once wrote, “I suspect that cancer doesn’t give a rat’s ass whether you have a positive mental attitude. It just sits in there multiplying away, whether you are admirably stoic or weeping and wailing. The only reason to have a positive mental attitude is that it makes life better. It doesn’t cure cancer.”

  Still, after I wrote about deciding on mastectomy for the Today Show and after I’d gotten over the idiocy that poured into my e-mail inbox and into the comments section on the website, Lisa and Kathy both wrote to me about how emotional it made them to revisit their own surgeries in this way. My aunt Cris wanted to come be with me during the aftermath, my mom wrote to me, but I had scheduled my surgery during her long-p
lanned vacation to Spain. It was nice to know that I had three breastless graces looking out for me, three women who had done this preventively and lived to tell the tale, lived happy, fulfilling lives even though they were still sad, who did what they had to.

  The only thing worse than having a mastectomy is planning it. I began to contend with the logistical angle. I had presurgery blood tests and scans to complete, films to have sent from one hospital to another, and insurance approval to facilitate. I knew I wanted my parents there for some of my recovery, so we planned for them to come up and bring an easy chair for me to sleep in. What hotel would they stay at? When in the morning did I need to be there? What kinds of clothes could I wear afterward, and was it OK to take my asthma medicine in the lead-up to surgery?

  During this time, my mother sent me two categories of e-mails—ones that focused on the surgery and the logistics around it, telling me she was proud of me for educating myself and making a difficult, informed decision, and others that carefully revolved around not-cancer, little notes about the weather or the plants in her garden, or that just said that she was thinking of me and loved me. My father isn’t a sentimental guy, but he wrote me too. Since we’d both been on the gain, we decided to attempt weight loss together. Once a week, we’d hop on the scale and send our numbers, and every few days we’d send food diaries of what we’d eaten. At the time, they seemed like pragmatic, if ineffective, e-mails. In retrospect, I read them as my dad telling me he loved me, over and over again, in his lists of bad weeks full of hamburgers and good weeks full of fish.

  Twenty-four days before I cut off my breasts, George cast my chest in plaster. I wanted to remember my old body, the size and shape of my slightly lopsided and completely perfect-for-me breasts. We drank beers while he dipped plaster bandages in water and smoothed them over my cellophane and Vaseline-encrusted torso. In the kitchen, we’d gone crazy with cooking—curing salmon, Canadian bacon, and our own kimchi. It struck me that we were preserving my breasts just as we preserved the pork tenderloin and the salmon filet. In a blog post about the event, I wrote, “I could feel the cool plaster molding to me, but slowly, it grew stiff and I could no longer feel his hands smoothing the edge of each strip down, just pressure on top of the carapace that had become my chest. I wondered if this is how I will feel after I recover because the operation comes with permanent loss of nerve sensation.”

  That same day, I sent an e-mail about my surgery to my cousin. I felt glad to be proactive about my health, I wrote to her, “but there is still some weird gap between the smart thing to do and what I emotionally want to do.” I wanted to run, but I knew that no matter how far or fast I did, the crippling fear of breast cancer would follow close on my heels.

  As the day drew nearer, I began to feel completely crazy. I spent three-and four-day jags in the apartment, not managing to drive George to work or even to make it out of pajamas. My mind focused like a laser on the impending misery, and I found it difficult to distract myself from the horror to come. I decided to work with my focus and try to channel it into something more positive, and I began planning a “good-bye to boobs” party, or as I privately dubbed it, “ta-ta to tatas.” George and I brainstormed about the foods we could have—braised breast of veal, slippery nipples, boobtinis (with two olives, of course), prosciutto-wrapped melons, punch served in jugs. My friend Urban would use a free plane ticket to fly into Boston from Seattle for the bash. Our old roommate Chip would be there, along with four of George’s good dude friends and a few of the women I’d grown close to in graduate school who worked on a literary magazine with me. We set the date for the weekend before my surgery, when I’d be most in need of distraction.

  Ten days before the operation, I decided I needed to change my hair. “I am a wreck,” I wrote to my lady friends. “I’m basically fine except for when I remember that my boobs are coming off, which is, you know, pretty much all the time except when I’m distracted by hanging out/watching genre TV/drinking. I needed to get that off my chest (ha ha)…. What I need from you is hair advice.” Every one of them responded, noting that I probably shouldn’t change things too drastically from my usual bob, because I’d want to wake up feeling like myself. We decided that I could go asymmetrical and needed the blue streaks I’d been too timid to get in college, and I rushed off to the salon for an unduly expensive procedure that made me feel different, jagged, unbalanced, on the edge of something. I liked it. Now we could talk about my hair instead of my breasts.

  Emotionally, I was laid out. I felt like I’d planned my own execution and thought of the approaching date with dread and also desire—I wanted this over with. The fear of the procedure—not just of losing my breasts but of the surgery as well—subsumed me so completely that I counted down the number of days on Facebook each morning. I reached a fever pitch. The week before the surgery, I came home drunk on the commuter rail after an unexpectedly late night out with a girlfriend who couldn’t make the tata party, and I lost my phone. The next day at the mall I let missionaries talk to me for an hour. I watched three seasons of 30 Rock in two days. I needlepointed an entire pillow, and gave myself a manicure and pedicure. George and I spatchcocked chickens, fermented batter for dosai, roasted vegetables, and cracked raw eggs over Caesar salad.

  At the supermarket the morning before the good-bye to boobs party, George and I found a pair of honeydew melons to give away in the half-baked breast-pun contest we had concocted. At first we pored over the bin, searching for the ripest, most delicious ones, and came up with two of differing sizes and shapes. They didn’t match. We needed melons that matched, he said, that looked white and unblemished, and suddenly, in the sinking pits of our stomachs, we knew we couldn’t find what we sought in any fruit bin.

  The party, which my in-laws graciously let us host at their house in Boston, helped me. I could have spent that weekend weeping, but instead our best friends kept us laughing with puns and jokes about how I was about to have perfect, perky zombie boobs. We took pictures holding the melons in front of our chests. They brought melon-flavored Midori and wheat beer (my favorite) and seven-layer taco dip and single-malt scotch and hugs and smiles and sympathy and compliments about my new hairdo and handmade greeting cards and memories of earlier, happier times when I’d been young and carefree, and assurances that those days weren’t over yet either. Afterward we went out to a bar and drank beer and made plans to meet again on the other side.

  And then we went home to New Jersey, so I could have my breasts cut off.

  The night before, my parents take us out to what my aunt Cris and uncle Alan call “the last supper,” the last meal the night before surgery. We eat some kind of Italian food and sleep in a hotel up close to the hospital, in Tarrytown, New York.

  At the hospital, after we do the paperwork, I give all my jewelry and clothing to my mother, and as I hug her good-bye in my terrible hospital gown, I can see her nose getting red, and she asks the nurse one more question to delay the inevitable. This must be hard for her, to see her child do this. I want to comfort her, but I have no reserves to spare for anyone else today so I turn away. In the prep room, Ashikari and Salzberg keep things light, asking about my writing as they draw with permanent marker on my chest, marking the center of my breastbone. I feel self-conscious about my blotchy un-makeuped face as the hunky, very kind anesthesiologist hooks me to an IV tube.

  I take a last trip to the bathroom with my drip, because I’m not ready. I’m not ready to lose my breasts, and I want to see them and feel their softness one last time. I open my gown in front of the mirror and try to fix them in my memory: warm, round, a little droopy. I wish I’d taken a photo of them before now, because now it’s too late, and I’ll forget. I’ll forget them and what they looked and felt like. I will miss them so much. I want to look for longer, but I don’t think I can bear up to that; so I tear my gaze away and dab ineffectually at my face with toilet paper and force myself back into the public of the OR where I know I can’t break down. As they put me under,
I recite some stanzas from “The Cremation of Sam McGee,” a favorite poem my grandpa Gov had known by heart before he lost his wits. I barely make it through a stanza and then, I’m out.

  When I regain consciousness, Ashikari and Salzberg are wheeling my bed somewhere, I think, and it seems important to try to tell them I’ve appreciated how nice they’ve been about this whole thing, how their offices had been just like spas. But I’m coming out of anesthesia, and probably incoherent. When I wake again, I feel like Frankenstein’s monster, coming to life—everything seems dim and creaky, and I’m hooked to machines that beep. I can’t breathe, so I call the nurse over and she allows me a puff of my asthma medication. My lungs seem made of turgid rubber, difficult to expand. She tests the oxygen level in my blood; it’s fine. Probably just the pressure from the new implants, she says.

  In my hospital room, George and my parents meet me. The men spent the morning making chicken soup with rice in the hotel kitchenette and have stashed a supply down the hall so I don’t have to eat the hospital food. I imagine the awkward trip to the grocery store, the friendly kitchen bickering over how to do it right, shot through with the tension of waiting for a loved one to come out of surgery. It tastes clean and fresh. George doesn’t want to go back to the hotel with my parents; he sleeps in a cot in my room both nights, leaving only for meals while I’m passed out.

  The next day, I shuffle around the floor with my IV and my family, and a nicely dressed woman comes to our room. She’s in her early fifties and thinks I’m here because I have cancer. We don’t know how to tell her that I don’t. She tells us about her own experience with cancer and leaves some pamphlets. In bed, I feel like I’m dying—doped up on painkillers and exhausted from the surgery and anesthesia—and all I want is for her to leave so I don’t have to act polite. She is from the Reach to Recovery program that my grandmother took part in a decade or two after its inception in 1952. Survivors marched into hospitals and connected with current cancer patients without doctors present—a radical move at the time. Later, I will complain about this woman, foisting her own cancer story on me at a vulnerable moment. My mother, whose ordeal has been different, will say, I don’t know, Lizzie. When you feel so horrible in the hospital, when you’ve had chemo, I think it can be pretty transformative to see a nicely dressed woman who has been through the same thing and know that you can make it through.

 

‹ Prev