by Lizzie Stark
Now Kathy calls that time “the most intense period of my life.” To cope with her mother’s imminent death, her impending mastectomy, and her failing first marriage, Kathy threw herself into work and wrote a book.
In January of 1979, El died. Hundreds of people came to the funeral, Kathy says, “shocking numbers, people frantically getting folding chairs to extend. And a scholarship was set up for her. But she died young and tragically [in] a small town.”
Soon afterward, El’s original breast surgeon and friend, now retired, had Kathy and Lisa over to his house, a cool modern affair. Lisa remembers, “We’re sitting there on his couch and he’s telling us that we ought to have this surgery, and I remember it seemed so outrageous to me at the time. I couldn’t even get my mind around it. It sounded so horrific and dramatic, and he was so insistent. He said with the family history and the age at which these women got cancer …” Lisa couldn’t begin to relate to the conversation. “I’m so out of here,” she thought. But her sister, of course, was already deep into the planning stages.
Three months after El’s death, Kathy and a friend visited the hospital the day before her scheduled operation to do the pre-admitting stuff. While she filled out paperwork, an administrator walked into the room and told her the surgery had been cancelled. Kathy felt devastated. After everything she’d been through—a marriage on the rocks, her mother’s death, the emotions around voluntarily cutting out her breasts, and meetings with thirteen surgeons—this was one barrier too many. It was too much, too much to ask of a person, to do this. If she didn’t do it now, she wasn’t sure she could do it at all. They simply could not cancel on her. She broke down and wept in the office. The administration used the excuse that they hadn’t gotten preapproval from her insurance company, apparently, even though that “was never done in those days,” she says. They wanted her to pay for everything up front. Sitting in that office, crying, Kathy wondered how she could pay for it all. Maybe her father could help. Eventually, she got ahold of her plastic surgeon. They couldn’t cancel it. They wouldn’t cancel, he said. He stormed into the administration office fresh out of surgery and still in his scrubs. And then, as Kathy tells me thirty years later, her voice rough and on the verge of breaking at the memory, “The plastic surgeon pulled out his credit card and paid for it. The whole thing. And at the time, oh my God, it was thousands of dollars. It was a six-hour surgery with two surgeons, and it was thousands of dollars.” When Kathy’s father heard, he drove several hours to Chicago to hand the man a check, shake his hand, and thank him.
The surgeons wrote up Kathy’s operation for the insurance as exploratory surgery of her breasts due to previous biopsies. She had a subcutaneous mastectomy, kept her nipples, and had silicone implants installed all in a single operation.
Four years later, my mother developed breast cancer, and the Muehleisen curse had trickled down into the second generation, an insatiable dark beast demanding appeasement from my matrilineal line under penalty of death. Although Lisa had resisted surgery after watching Kathy’s, now she felt compelled. She remembered the trip to the house of her mother’s surgeon, she says. “I could hear the doctor’s voice in my head saying that I was a little young at twenty-two. It just seemed like that was enough reason to do it. I don’t even remember waffling. In my head, I just had to figure out that medical insurance part of it. My husband at the time, his family just thought I was insane. He thought I was nuts. I went forward with it.” At the time, Lisa was about twenty-seven, and, like Kathy, her surgeons went to bat for her, informing her insurance company that if they didn’t pay for the operation now, they’d be shelling out for cancer treatment in ten years. The lack of support from her first husband and his family ultimately caused a marital rift so deep that, eighteen months after the surgery, they separated and a year later they divorced. She thinks they would have split up eventually, anyway. The mastectomy “was the catalyst,” Lisa says. “The marriage was broken anyway, but it was the trigger that set things in motion.” It had been the same for her sister Kathy: the surgery—and her husband’s lack of support then and when her mother was dying—set her divorce in motion too.
Lisa’s and Kathy’s mastectomies share many similarities with Frances Burney’s. They all did it without the support of their husbands. They all dreaded the procedure. And for Kathy and Fanny, administrative delays made the agonizing waiting time a little worse. Finally, the weight of uncertainty about the procedure settled over all of them, despite 170 years of medical advances. For Fanny, the uncertainty lay in whether she’d survive at all, caught between her tumor and often-lethal surgery performed in an era before antibiotics. For Lisa and Kathy, the uncertainty lay in defining their risk. The family history appeared to give them a very high chance of developing breast cancer, but the identification of the gene and data proving that prophylactic surgery could successfully lower breast cancer risk were decades away, though we now know, thanks to at least five studies, that mastectomy lowers the risk of breast cancer in BRCA patients by about 90 to 95 percent, and maybe even more. They all made grueling decisions—they chose mastectomy—and for that they are amazons. Yet they are subjects, too, martyrs to the imperfect knowledge of science.
Still, it’s queer that as surgeries for actual cancer shrank in scope during the twentieth century, from the Halsted mastectomy to lumpectomy, drastic surgery for something far less palpable—cancer risk—became part of the protocol. And even now, when the most advanced technology of all can look inside your DNA and find the tiniest error in code, the smallest blip of a mistake inside the cell nucleus, it seems ironic that the main treatment offered is removal of an entire organ. But how can one fight something as nebulous as uncertainty? Who can see the wind? How does one fight a ghost?
8 | The Black Cloud
In some ways, my grandpa’s funeral revived me. It gave me permission to cry, mostly for him, but for myself too. And it contextualized my genetic results—this wasn’t a death sentence, but simply a statistic of cancer risk. An up to 87 percent chance of developing breast cancer in my lifetime. A 40 to 60 percent chance of ovarian. After the funeral ended, my aunt put the box of ashes in my arms to carry home for my grandmother. It felt heavy for a man who shrank to almost nothing in his final days, and when my curiosity forced me to open the polished wooden lid, all I could see was a smaller plastic box. It fit perfectly inside.
I drove from Tennessee back to DC with my parents, and my mother drove me further, back up to New Jersey, where she would stay with George and me for a few days.
Since my mother doesn’t sit still, we don’t when she visits. We visited the Ikea vortex to look at furniture, different grocery stores for all the cooking we would do, the needlepoint shop in Princeton for a project I wanted to start, and the park, where we walked around and around before dinner.
Our conversation circled too. We shuttled between talking about cancer and carefully not-talking about it. I was still in a state of shock, uncertainty, and terror. I couldn’t climb out of the thick of these emotions the way I would have liked to, because what I imagined on my mother’s face was potentially guilt, as well as dread that our family’s curse might be seeking its next victim. I wished I was in shape to comfort her. She told me about her surgeries and how much she loved me and how glad she felt, after cancer, to have the luxury of dull mediocre days stretching in front of her. She assembled delightful salads with Asian pears and toasted pumpkin seeds. We ate ice cream together, and she taught me how to needlepoint; but eventually she had to drive home.
After she left, George and I tried to return to normal. But the truth was that after the genetic test, the old normal no longer existed, and the new one haunted us.
The gene consumed me, at first slowly, but as the shock wore off it devoured every waking moment not forcibly occupied with other activity. I was OK three mornings a week, from 5:00 to 10:00 AM, when I was summarizing news articles. And I was OK when I worked on my first book, which would find a publisher in only a few
months. But I couldn’t sleep. I lay in bed and thought about the inevitability of this mutation, my risk written into the DNA in every cell of my body. I knew it upset my husband when I cried, so I tried not to sob unless it was really bad. Whenever he realized I was weeping, he rolled over to hold me, but surely, by this time, he was tired of the grating endurance of this pain. My life operated by rote. In the mornings, I woke like an amnesiac; everything felt blank until the memory of my situation descended in a fresh shock, and I was crushed to resurface into this reality once again. Occasionally I cried while George was in the shower.
During the day, in between bouts of work, I cruised the online forums and scoured the web for other BRCA narratives. They made me feel like less of an alien. I e-mailed friends and researched medical treatments. Too often, my Internet meanderings ended with wallowing in my own misery, thinking obsessively about what could happen to me—the hair loss from chemo, the radiation therapy, how sad George would feel after my lovely funeral—and about how horrible cancer must have been for my mother and grandmother. I developed increased sensitivity toward anything vaguely intended to be moving, from Internet videos on bullying to calculated commercial efforts, like a corny BP campaign about renewable energy. As a kid, I always found it weird that my mom and grandma cried during the cheesy parts of movies, and now I wondered whether this, too, was hereditary.
The sea of tears I navigated daily became its own source of guilt. I was weak willed, I thought. After all, I was still a healthy twenty-seven-year-old newlywed. And I didn’t even have cancer.
My uncle Alan remembers this period in his relationship, living under what he called “the black cloud” before my aunt Cris decided what to do about her cancer risk after it spiked as a result of my mother’s diagnosis. “She talked a lot about it,” Alan recalls. “She’s very communicative, and we have a talky kind of relationship. Oh yes, she talked a lot to me about it. And she was frightened. She was frightened for her sister; she was frightened for herself, and when she’s frightened she talks.” Cris found the topic inescapable. As Alan tells me, “She knew the best thing she could do was not think about it and not worry about it because there was nothing she could do about it…. When it affected her most she would even have long periods of weeping and even attacks of anxiety, and as I said, other times she was fine. It was not a constant pall over our lives, but it was definitely part of it.”
My father remembers living under that same cloud, one that my mother’s breast cancer diagnosis made particularly black and threatening. My parents didn’t live with the uncertainty of whether my mom would get cancer; they dealt with uncertainty about whether she would survive. What he and my mother went through after her diagnosis sounds like hell. As he tells me, “I thought that [her dying] was a real possibility. And of course she was real worried about it, you know, because of the family history. She was worried she wouldn’t get to see you grow up and that sort of thing. And of course there’s just the emotional aspect of seeing the physical consequence of the mastectomy, which is pretty shocking. So, you know, you have your image of yourself as a healthy couple, right? And then suddenly you’re not a healthy couple.” The pall of uncertainty changed more than just my mother’s body—it changed his image of their relationship.
Women may experience the primary trauma of a BRCA mutation—in the form of cancer, fear of cancer, mastectomy, and so on—but their partners, who have a lifelong stake in their well-being, also suffer. When I appeared on the Today Show years later to talk about my life under the pall of cancer, my grandpa Roy, Ace to his grandkids, watched and put his head into his hands and cried. He’d seen this gene affect his in-laws, his wife, his daughter, and now his granddaughter.
Mostly, George and I dealt with the grief through food, and I craved the comfort fare of my childhood. The day of the fateful phone call, I demanded the easy solace of Kraft macaroni and cheese and Dove bars. The next day, he made sure I got out of the house by sending me to the farmer’s market. We had pesto and grilled squash. Then I wanted braised Chinese short ribs with noodles and homemade kimchi and plain tacos in hard shells from a mix, like I remembered my mother making, and though we exchanged some half-hearted banter about how soft tacos with home-braised pork would taste superior, in the end he appeased me. I made watermelon granita—a favorite of my mother’s—and because I knew I would eat as many brownies as we made, I dug up an Internet recipe for a single-serving version microwaved in a mug.
We drank martinis, bourbon manhattans, scotch and soda, beer, wine, and occasionally champagne cocktails. I made rosemary and thyme simple syrups and we concocted new elixirs. When we drank, I felt guilty. After all, alcohol consumption has been connected to increased risk of breast cancer. But remaining in my natural mental state for twenty-four hours a day was intolerable. I needed relief. My uncle Alan remembered this too. “She and I have always liked wine,” he says, but when the black cloud hovered over his relationship, “every time she had a glass of wine or any alcoholic drink she would be very worried because there were indications this would increase her odds of getting breast cancer.”
We turned to television for balm too. We needed to escape to worlds where there was still hope and magic was possible, entertainment with repeating units of reassuring structure, where Xena outwitted her enemy and Veronica Mars caught the criminal and Hercule Poirot explained what really happened, where Dale Cooper loved him some coffee and Buffy slayed the demons of teenage existence and the lawyers argued hard on Law & Order. We hadn’t had real TV in years so we watched on DVD or our computer, our old favorites soothing us, although through familiarity they’d lost their ability to distract my brain from the ever-present focus. And even this genre television could trigger me. We skipped the Buffy episode with no soundtrack, the one where her mother dies—not from vampires but from brain cancer that metastasizes. We tried to pick up Battlestar Galactica, but its dour plotline—will the human race survive?—and the breastcancer stricken president didn’t offer the relief we craved. Even Dr. House sometimes lost patients. Neither booze nor fatty food nor television could wipe away the fear that seeped into me the moment my brain was unoccupied.
Over time, George and I began to talk about how I would handle this diagnosis medically. I recognized immediately that at some point—ideally far in the future—my breasts would probably come off, but in the meantime, I really wanted to keep them. In fact, I’d do anything to keep them. We visited the oncologist together and learned in detail about the options.
I had four. I could do nothing, which the oncologist didn’t recommend and which seemed impossible to me anyway. I could undergo intensive surveillance—a barrage of tests and scans of my breasts and ovaries every six months in hopes that any cancer that might develop would be detected early, when it was more curable. This method wasn’t invasive and sounded quite attractive. I could remove my breasts or my ovaries, or ideally both at some point. If I removed my ovaries, my breast cancer risk would be halved thanks to the reduction of estrogen from my body, and my ovarian cancer risk would drop even more dramatically. Of course, I was only twenty-seven, and oophorectomy causes surgical menopause and infertility. Removing my breasts would slice my breast cancer risk but leave my ovaries intact—with their ability to allow me to bear children, or to explode with cancer. And then, there was chemoprevention.
“What’s that?” I asked my oncologist.
It meant taking estrogen blockers such as tamoxifen. Essentially, lots of tissues in the body—including the breasts—have receptors for estrogen. The hormone fits into these receptors like a key into a lock. Chemoprevention drugs put gum into that keyhole, preventing the body from absorbing the hormone.
In a way, the connection between estrogen and breast cancer has been recognized for centuries. Once known as “nun’s disease,” breast cancer seemed to afflict the habit-clad at a noticeably higher rate. A professor of medicine writing in Italy in 1713 who wondered about the cause of the phenomenon eventually settled on celibacy�
��an obvious lifestyle difference between nuns and other women. As we now know, being sexually active doesn’t raise or lower one’s breast cancer risk, but having kids does. Women who give birth—particularly at young ages—and who breastfeed their children for a long time have a lower incidence of breast cancer than women who do not. It’s thought that pregnancy and breastfeeding reduce cancer risk by disrupting the menstrual cycle, which reduces total lifetime exposure to estrogen. For the same reason, women who have fewer periods during their lifetimes—because they start menstruating late or have more than one child—also have a smaller lifetime risk of developing breast cancer. Pregnancy reduces ovarian cancer risk too. Still, it’s complicated. Pregnancy and breastfeeding don’t reduce all breast cancer risk, merely the risk of the more common flavor, which is estrogen-receptor positive. And having kids only helps if you do it before thirty—if you get pregnant afterward, your risk of cancer is slightly higher than that of a childless woman. While having kids lowers risk over a lifetime, in the short term—for about ten years—it slightly raises risk.
Tamoxifen and raloxifene lessen that risk by preventing the body from absorbing estrogen that may nurture incipient cancer cells. Tamoxifen reduces the risk of developing future cancers in women with ductal carcinoma in situ (DCIS), a sort of stage 0 cancer that raises some of the same clinical ambiguity as a BRCA diagnosis. A 1998 study of more than thirteen thousand women at high risk for breast cancer found that tamoxifen significantly reduced the rate of cancer, but that study did not focus on BRCA patients. A subsequent smaller trial of tamoxifen among BRCA patients showed a benefit for BRCA2 carriers, but not BRCA1 carriers, though the sample size was too small to be statistically significant. This may be because tamoxifen reduces the risk of estrogen receptor-positive breast cancers, while estrogen receptor-negative cancers are more common in BRCA1 women. Of course, taking estrogen blockers sounded unappealing. They induce temporary reversible menopause in all its hot-flashing, libido-killing glory, and if you take them for more than a few years they increase your risk of uterine and endrometrial cancers, as well as other rare but potentially serious complications. Basically, my oncologist explained, they could buy me a little time to make a further decision about surgery while immediately lowering my risk.
