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

by Lizzie Stark

  Also, it was good that I had gone on the patch for a few years in grad school, apparently, because a little hormonal birth control reduces a woman’s ovarian cancer risk substantially.

  We talked about timing as well. “Are you planning on having children?” the doctor asked, a question that would seem invasive coming from a parent.

  “Maybe,” was all I could answer. I’d always assumed I would have kids; as a collector of experiences, I was interested in this archetypally human one. But we felt unprepared and uncertain.

  If I got knocked up soon, in the next year or two, the doctor said, we could delay other treatments for a while. It’s pretty unusual to develop cancer while pregnant, he told us, but it does happen very, very occasionally.

  It was a lot to take in within thirty minutes, and I was glad I had brought George to be a second set of ears. I also wanted to force him to confront this diagnosis emotionally and viscerally, to hear the cold facts from a medical professional as I had had to. He had been verbally supportive but distant, almost reserved, as my feelings took a front seat in our relationship. I wanted to push his emotions forward to ensure they were as strong as mine. I wanted to see him grieve with me.

  At home, we discussed the options. I discarded chemoprevention first, because it was a stopgap solution. I didn’t care if it was only temporary; I didn’t want to go through menopause in my twenties, especially because I planned to expedite it anyway. Ovarian cancer is incredibly scary, and I still intend to have my ovaries removed, as the doctors recommend, “after childbearing is completed”—a small, simple phrase for such a big decision—or before age forty. I will have plenty of time to enjoy libido-killing, irreversible, surgically induced menopause when I’m supposed to be at my sexual peak.

  The other options were agonizing to sort through. I was twenty-seven, the age at which it’s likely that Trudy began developing breast cancer. Maybe. I wore her ring on my finger and thought about how she was too frightened to pull the trigger on mastectomy. If I removed my breasts, I wouldn’t be able to breastfeed, and while I wasn’t certain I believed that the children were my future, the idea of giving up potential breastfeeding—my insatiable writer’s curiosity wondered how it would feel—gave me pause. Mastectomy is not reversible. I pictured knives cutting into my flesh and shivered. What about having a baby right now, in the next year, and putting off the decision?

  At that time, I worked part-time for a news site and wrote my first book on the side. George was a PhD student in biophysics with another three or four years of school left. We could barely afford our one-bedroom apartment, which was too small for all our books and cooking equipment and old tchotchkes we were too sentimental to trash. There was no room for a baby there. Still, the idea of delaying permanent solutions for as long as possible was attractive to me. George and I went back and forth, round and round on this issue, one we hadn’t planned to address for at least a few more years.

  Twenty-six years earlier, my mother’s cancer had changed my parents’ plans for a family. We have trouble talking about this, my parents and I, because they want me to feel loved; they want me to feel like enough. But the truth is that they wanted more children. At the time, my mother tells me, the doctors thought that having pregnancy hormones floating around her body might increase her risk of a cancer recurrence, and they advised her not to have more kids. I always thought that meant maybe one more. Decades later, my uncle explains that this news was “a huge hit to the stomach for them. I think they were hoping to have four or five kids, and this was part of their marital dream, and this put an end to that dream. I had the sense that maybe for Dick [my father]—he wanted to have a flock. And it just meant that this part of the expectation of their life, this was just not going to happen.” It was a loss for my father, her illness. As he tells me years later, in addition to his fear for my mother’s life, “I remember feeling sorry for myself. Just that, you know, it kind of disrupted my plans for myself. I wanted to have more children, so that was sort of up in the air, and um, I think at that time the doctors were uncertain of what the prognosis was, you know, so there was a good likelihood that things wouldn’t turn out as well as they did.”

  George and I decided that the idea of breastfeeding wasn’t a good reason to have a baby before we were ready. I scoured the Internet for articles on the benefits of breastfeeding, on moms who hate on other moms because they don’t do it. I began to feel preemptively guilty for my unborn theoretical children and angry at the imaginary horde of moms who might judge me. I concocted vicious retorts to their rude nosiness.

  Another meeting with my oncologist confirmed the decision. “What happens in the worst-case scenario?” I asked him. “Like, if I get cancer while I’m pregnant?”

  He explained that if it were early in the pregnancy, they would ask me to terminate. If it were late in the pregnancy, he would meet with my ob-gyn and schedule a C-section to remove the baby as soon as it was viable outside the uterus. But really, he said, it was a very small chance.

  My mother remembers a similar meeting as she recovered from cancer. She wanted to explore having more children. “My gynecologist said, ‘OK, but I want you to sign a document before you get pregnant about what we should do if you get cancer when pregnant. Abort the baby? Have chemotherapy while pregnant? Deliver the baby?’ I thought I had a responsibility to stay as healthy as I could for you. I just decided that it wasn’t worth the risk.” My parents have loved me deeply every day of my life, and this can’t have been an easy decision for them. The knowledge has exerted a subtle pressure on me as well, to live up to their expectations, to be better than myself, to fill their lives the way a flock of children couldn’t.

  Whether the chance of cancer while pregnant was small or not, the choice of aborting a wanted pregnancy or playing chicken with disease until the baby was big enough to live without me sounded awful. That wasn’t a position I’d choose, no matter how small the odds.

  And so, with a heavy heart, and after numerous calls to the insurance company to make sure the radiology department would actually let me in for a mammogram, I began surveillance again.

  At the front desk of the clinic, we played the same scene over. Every time I remember it, it’s like I’m right back in that moment, smelling the weird medical ozone mixed with terror. I’m here for a mammogram. They don’t give mammograms to women in their twenties. “What part of ‘I have a BRCA1 mutation and my mom got cancer at thirty don’t you assholes understand?’ ” I’d said in my head. I kept my smile even and explained that I had preapproval from my insurance company and I was on the schedule.

  This clinic had the trappings of my mother’s mid-1990s health club—teal walls, varnished wood trim, TVs for you to watch from overstuffed chairs while you’re waiting, little changing rooms with slatted benches in them—but somehow, these did little to conceal the fear that had seeped into the walls. The soothing colors and smiling staff provided only a thin veneer over the reality of maybe-cancer, a veneer I tried to mirror on my face, even though panic had welled up inside me.

  I was escorted to one of the changing rooms and given a sanitized, plastic-wrapped gown in a pinky-mauve color. Pink. Why does it always have to be pink? Why couldn’t we get something stylish, like cerulean, or zebra stripes, or retro navy polka dots to represent breast cancer? Why did this breast cancer clinic have to remind me—as if I could forget—that I am feminine and my girly female lady woman parts could be sprouting tumors. I loathe the cultural expectation that women adore pink. In preschool, I remember obstinately selecting blue frosting for my class birthday cake, even though I knew the teacher expected me to make a gender-appropriate selection. Pink is a straightjacket of assumptions about who I am and what I like based on the faulty premise that all women are the same. To me, pink represents the shackles of socially constructed femininity, the expectation that I will wax my bikini line and laugh stupidly at simplistic jokes to please the men who tell them. It is supposed to be reassuring, I suspect, like the
furniture, a gentle color to paper over the horror that cells inside your body might be uncontrollably redividing. I resent having it shoved down my throat at every opportunity. Pink is a cancer metastasizing into every arena remotely related to this issue. Worried about your breast health? Here, have pink ribbons, pink sweatshirts, pink-wrapped perfume, pink-painted jet planes, pink cosmetics and bras—even the romaine lettuce I buy in the supermarket comes wrapped in pink. Pink pink pink pink pink. It chokes me, especially in October; it never lets me forget for one instant that cancer is waiting to strike, waiting to rot us from the inside. Cancer isn’t cute. And the color that represents it shouldn’t be the same one used to market Barbies, for gauzy tutus fluttering around ballerinas, for princess getups and bubblegum.

  Clearly, I couldn’t go out there naked, though, so I put the damn thing on and took myself to the waiting station to watch TV. The mammogram—like all mammograms—wasn’t particularly pleasant. Stand here. Hold these handles and stay still. Yes, it is uncomfortable, isn’t it, the nurse in colorful scrubs said as she flattened my breasts between the plates. She apologized for putting me through this.

  Afterward, I was escorted back to the waiting station. They had found something in my right breast they wanted to examine more closely, the nurse told me, so I needed to stick around for an ultrasound. I felt blood rush in my ears. This was probably nothing, I told myself. I was still so young, after all. The ghost of Trudy leaned over and whispered, “It might be something. Watch out.” I twisted her ring on my finger and thought of my mother, just a few years older than me, sitting in a waiting room like this in Texas almost thirty years ago, tensed up, wondering, like me, if it is nothing, prepared for it to be something.

  Someone called my name, and I lay on the table. We made a pretense at modesty, leaving my nether regions covered, but obscenely exposing my breast and smearing it with lubricant jelly. The technician watched the screen while firmly pushing the wand over me. “There it is,” she said. She took photos, and then handed me a tissue to wipe off the lubricant. It felt strangely intimate and at the same time, perfunctory. “Stay here—we might need more pictures,” she said, and then left to show this set to the doctor.

  I lay there on the table, my sticky breast ensconced in the hateful pink robe, in agonizing contemplation. What if this was it? What if this was the moment when my life changed forever? What if the doctor walked back in here and had to tell me, at twenty-seven, that I had breast cancer? I pictured myself in a turban like my mother wore in that photo from the Southwest so long ago, only there was no baby in my arms. I had heard that chemo could induce permanent sterility. I pictured telling George and saddling him with a heavy burden so early in his career, my mother weeping, my life acquiring the quietness and resignation that comes when one is sick. I pictured dying with nothing to show for my life, dying without publishing a book or seeing Japan or eating, say, bull testicles. This probably wasn’t that moment. But it could be, and what if it was?

  It was a two-ham eternity later when the technician returned with the doctor, who told me they found a harmless calcium deposit inside me, and that they would follow their usual protocol and send off the films for a second opinion, as certain patterns of microcalcifications could be cause for concern. A preternatural calm came over me, and I managed to keep it together until I was in the parking garage. But when I got into the car I slumped over the steering wheel and let myself go to pieces for a few minutes. Then I drove to the gynecologist for ovarian screening.

  Two weeks later, I received the official results in the mail. They arrived in a plain unmarked envelope that I mistook, at first, for a bill. There was a form enclosed with five checkboxes on it. We have examined your recent scan, it said, and the results are … The first check box, for benign results that indicated a completely clean scan, was empty, as was the last, for cancerous results that required immediate follow-up. One of the middle boxes, “probably benign,” was checked. Probably benign. Probably. The thing in my breast was probably benign. Chances were really good that it was nothing. But probably benign isn’t the same as benign. So, they did find something. Something that was probably nothing, but still something. There was something in my breast. I wondered if the hospital was trying to cover its ass for malpractice suits in case they got it wrong and it really was cancer.

  These mammogram results infuriated me. Was this the future I could hope for, where a draining medical test yielded only nebulous answers? “Probably” didn’t cut the mustard. I wanted certainty. I wanted assurance. I wanted to know that what was in my breast was not cancer and would not develop into cancer. I envisioned a future in which “probably benign” was all I could hope for, every six months like clockwork, bracketed by nervous anticipation. Horror rolled over me. I could keep my breasts and endure surveillance, but living with the crushing fear of becoming like my mother and grandmother, well, it didn’t seem like much of a life to me.

  The weight of breast cancer risk and her second biopsy in five years put my aunt Cris over the edge, just before that fateful Christmas so long ago. “I just think I couldn’t go on with that fear and uncertainty,” she tells me later. “And let’s face it. By then all of my aunts on one side, my younger sister—I mean it just seemed inevitable, you know. It would be a miracle if I didn’t get this cancer. You know, it wasn’t like playing the lottery; it was for sure the right thing to do. Alan was just incredibly supportive. He never indicated anything less than one hundred percent support.”

  Soon after receiving my mammography results, I pressed George on what he thought I should do. He had been giving me extra hugs, shaking martinis, letting me pick what we ate and what we watched, and doling out neck rubs with extraordinary generosity, but he hadn’t weighed in with advice. This was unusual for him—he is a man of strong preferences for everything from sock length to noise artists to bologna brands—and he is an especially strong proponent of science and science-based medicine. I assumed he had an opinion about what I should do based on data. At the same time, I feared what he might say about mastectomy, which had now edged out surveillance in my shaky affections. I was afraid he would tell me not to do it, because it meant cutting off a body part we both enjoyed. I had unanswered questions about my sexual attractiveness without my breasts, and about my sexual enjoyment. If he would miss them too much, how could I face him afterward? At the same time, I was scared he would tell me to go ahead with the operation too. I had this gut feeling that mastectomy was the right decision, but I really didn’t want to lose my breasts. And I was secretly looking for an out, some overlooked justification that would permit me to feel OK about keeping them forever and ever. If he told me to go ahead, I would no longer be able to pretend that was possible. I was frightened to ask the question, and scared of his answer.

  When we discussed it, I had to push him because he didn’t want to weigh in. Years later, he’d tell me that he was afraid to influence me, afraid of that responsibility, afraid that his preferences in that moment could sway me from my own desires. He couldn’t bring himself to say the word “mastectomy.” “How do I feel?” he said when I pressed him. “I love you, and I don’t want you to die.” I pressed him further. “I would do the thing that has the best statistical chance of reducing breast cancer.”

  “So, mastectomy?” I said. It was still a question. It was not too late to avoid the surgery, but once he answered, I knew there would be no going back. He looked away from me and nodded.

  “All right then,” I said. “It’s settled.”

  9 | Barbie Girls

  A week after I decided to cut off my breasts, my grandma Meg died. She did not go gently into the night; rather, she went kicking and screaming, asserting her individuality up to the final moment. The last time I’d seen her, we’d come to visit, in part to introduce her to George. Though by that time she’d been having some mental problems, not just with memory but with anger, depression, and at times, viciousness, she’d turned on the charm for him, cracking jokes about th
e political situation and dazzling him with her smile. When we’d gotten engaged, she had sent us a red wooden salad bowl and tongs and made a little joke about how she knew we were living together, though we were not married, and she thought that was OK. She’d been a proponent of gay marriage because, she said, God is happy whenever two people who love each other decide to make a commitment. She thought people who leave their wives during breast cancer treatment should go to hell. “If she would have seen Newt Gingrich on the street,” my grandpa once told me, “I think she would have spit in his face.” She’d also been into fashion. A few weeks before the end, my mother remembers, they’d gone shopping together. Ever the fashion plate, my grandmother hadn’t been able to decide between two cute outfits, so of course, my mother tells me, “I said we’d have to get them both.” In the kitchen, her survivor hat, the cap she wore to Races for the Cure, still hangs. It is covered with pink ribbons, around forty of them, one for each year she lived after diagnosis.

  I am relieved because congestive heart failure killed her, not cancer. Not cancer. Not fucking cancer. The cancer didn’t kill her. She survived. It is such a relief that she survived.

  At the memorial days later in her hometown of Fayetteville, Arkansas, I comforted my mother and managed to read a psalm aloud during the service. We were in full Rom family mode, with our emotions locked down while we were in public, though if you knew where to look, sorrow and relief etched everyone’s faces. There would not be a home-cooked standing rib roast dinner for twenty-five served on fancy china, as there was after Gov’s funeral a month earlier; the Roms are more pragmatic—they are tacticians with stiff upper lips—so we stopped at the store for cheese plates and potato salad, something easy, so we could be with each other instead of in the kitchen. Kathy and Lisa had flown in from the Midwest, tall and blond with serene faces, and since they had not been there for the wrenching end, they evened us out with pleasant memories of Meg from their childhood visits. My grandpa Roy has a serious photography habit and a secret sentimental streak. He covered the living room in framed portraits of my grandmother smiling mysteriously in front of the house, with the kids on vacation, or in some of the places they visited during their travels. You could tell what era it was by the hair and the clothes. I loved the smile on my grandma’s face in one picture in particular. My grandpa told me it was from a visit to Italy they took in the 1970s. In it, she sits on a patio, leaning forward, with a glass of wine in her hand. Her greying hair floats in a cloud around her cheeks, and she’s smiling and relaxed. Her flowery, flowing peasant top emphasizes her delicate build, and it seems like she is not wearing her prostheses, perhaps because it is the era of flat-chested mod fashions.