Don't Call Me Princess

by Peggy Orenstein

  Spiegel’s original groups were therapist-led, met weekly, and accepted new members only when someone died or moved away. They were somewhat structured, focusing on seven tasks that ranged from improving communication styles to learning self-hypnosis to help manage pain. My initial group was also facilitated by a therapist, but had no set agenda. New members joined regularly, and when they did, we’d have to backtrack, repeating the diagnosis stories from which we desperately wanted distance.

  I also noticed that after a couple of months, I began leaving meetings feeling anxious. “Are you sure you want to keep doing this?” my husband asked one night. “You’re more depressed when you get home than before you leave.” He was right. I’d had my surgery, finished my radiation. Although I’d always be vulnerable to getting cancer again, I wanted as much as possible to emigrate back to the land of the healthy. I attended the group sporadically for a while longer, mostly because I genuinely liked the women in it, but eventually, without saying goodbye, I drifted away.

  A year later, Natalie called. She was organizing a potluck reunion at her house. Would I like to come? I don’t remember much about that night, but by its conclusion, almost unintentionally, we re-formed. Without a leader, we weren’t precisely a therapy group anymore, nor were we quite friends—I haven’t been to most of my fellow members’ homes, couldn’t tell you all of their last names. But our intimacy remained intense.

  Yet oddly, as we grew closer, we also grew more careful with each other. Although we talked about cancer in a general way—decoding the latest research, debating genetic testing or the value of tamoxifen—we stopped asking direct personal questions. Two out of ten of us had recurrences to the breast, but I didn’t really know what that meant. Sharon had bone metastasis, but I was unsure about her status. Maybe I no longer felt I had the right to inquire, or perhaps I didn’t want to know. Yet, I didn’t consider abandoning the group any more than I would have expected others to leave if I’d been the one to relapse. It felt wrong, especially once Robin was dying.

  Robin’s cancer had spread to her lungs and was growing rapidly. Her ex-husband, meanwhile, had died of a heart attack, leaving her as the sole parent of two young boys. She talked frequently about to whom, among her siblings, she might entrust the children. She talked about her treatment and the toll it was taking on her. But the subject of her imminent death came up only once, at a surprise forty-first birthday party we threw for her, which we suspected would be her last. She blew out the candles on her cake and announced that her wish was to have sex one last time. “I’m thinking of taking out a personals ad,” she joked. “It would say, ‘Single White Female Looking for Good Time. No Long-term Commitment Required.’” We all laughed—Robin was a big presence, fiercely funny and resistant to pity—but then she grew serious. “I have to be able to talk about dying. When I try to talk to my friends, they tell me, ‘Oh Robin, if anyone can beat this, you can.’ It’s not a matter of beating it anymore.” We all fell quiet, but then Meredith’s new baby cried, and Robin went to soothe him. The moment passed, the conversation changed, and we never found our way back. Later I realized how Robin’s comments echoed Sue’s several years before. In those days, we could listen to one another talk about death without flinching. We were, after all, in it together. But now, even in this group, Robin was on her own.

  Robin died on September 9, 2001. Her funeral was two days later. All morning I watched the Twin Towers collapsing on TV. Then I drove along the empty freeway, the jetless sky above me, to the service. About half of our group attended. Along with hundreds of those who’d loved and respected her, we listened to the James Taylor songs she’d chosen, heard the eulogies of old friends and family, and cried. We promised to get together soon. But here’s the thing: we didn’t. We stopped meeting entirely. In the weeks and months that followed, as no one, including me, called the group together, I began to think it was for the best. I’d joined during a crisis. I’d stayed, in part, to see someone else through hers. And now? How much did I want cancer to define me? What, exactly, was my commitment to my fellow survivors? What did I want theirs to be to me?

  A year later I still felt unsettled. I mentioned my quandary to David Spiegel. “I think that’s where a good leader would come in,” he said. “There’s a point where people who’ve had primary cancer don’t want to identify themselves as a cancer patient. But if I were running your group, I’d say, ‘That may be true, but grieve the loss of Robin first. Then if you decide it’s time to stop, fine.’” I realized he was right. I couldn’t leave it like this. In the end, I was the one who gathered us together, with this article as my pretext.

  As always, seeing these women filled my heart with gratitude. Esther’s hair, which had fallen out during a new round of treatment, was now long and lush. Sue had just given birth to a second daughter; four months pregnant myself with my first, I was eager to talk to her about pregnancy after cancer. Sharon, who was in remission, passed around pictures from her daughter’s bat mitzvah. There was sad news, too: one member, who had moved out of the area, had discovered her cancer had returned and was now metastatic. She’d been clean for seven years.

  As we caught up, I asked why we hadn’t met since Robin’s death. “It’s true,” Natalie said, “we didn’t naturally draw back together. If I’d said, ‘Okay, we’re all coming back to my house—’”

  “And why didn’t I do it?” Sharon cut in. “I think I just withdrew.”

  I’m no therapist, but that night, as a reporter, I felt a little like I had in the group’s early days, when we were strangers and the rules of polite friendship didn’t apply. Why did we now avoid difficult topics? I pressed. “I didn’t even tell the group about my metastasis for a long time,” Sharon admitted, “because . . .” She paused, searching for words. What did it mean that she couldn’t tell her cancer support group that she had cancer? “It felt like a betrayal,” she finally said. “Here you were all moving on. I felt . . . different.”

  “For me,” added Laurie, whose cancer returned in her chest wall two years after her initial diagnosis, “I didn’t want to talk about it much. Maybe it was a form of denial.”

  At that moment, Natalie’s kitchen phone rang. Usually her canary mimicked the sound, but this time it was silent. “Hey, what happened to the bird?” someone asked.

  Natalie rolled her eyes. “It died of a brain tumor.” We laughed so hard her husband shut the door to block out the noise. We all found out new things about one another that night, particularly about Sharon. I hadn’t known that she had stopped working when the metastasis was discovered or that her disability payments had been in jeopardy. I didn’t know that she was dogged by fatigue, or how she felt about the chance that the cancer would kill her. “I do think of myself as somebody who has metastatic breast cancer,” she said. “I appreciate that I’m in this great period of being able to be blissfully ignorant of it. But I know what a remission is. It delights me to go for days without thinking about cancer. But it also makes me feel secure to know that when I do dip into it, it doesn’t totally throw me.”

  I asked Sharon how she thought the group could improve. Her answer was immediate: “If we went back to meeting more often,” she said. I felt a stab of apprehension. Earlier that evening, I’d confessed that I’d felt relieved to give up the group after Robin died, ready, possibly, to let go, or just attend the occasional reunion. Yet tonight, I’d also realized that this group held a part of me that no one else could reach. I honestly wasn’t sure where to go from here. So I said what was true, but not the whole truth. “Seeing everyone again makes me so happy.”

  Laurie nodded. “It’s like a miracle,” she said, and I saw tears spring to Natalie’s eyes.

  “You know,” Esther added, “we’ve seen each other reach milestones that at one time we thought we might never see.”

  “And we’ve always had fun,” Natalie said.

  We were quiet. “I say, we all pitch in and buy Natalie a new bird,” I said, and the mood broke. A
good therapist might not have let me get away with ending on a joke, but as in life, a good therapist is not always around. It’s just us, muddling through.

  Put to the Test

  I wasn’t tested for the gene mutations indicating a predisposition to breast cancer until a decade after my diagnosis. I didn’t want to know the results unless I was sure of what I’d do with the information. Then I had a daughter and I thought: it’s time. This piece was published in October 2007. In the future, more of us will be able to find out whether we have an inherited tendency toward specific, sometimes life-threatening conditions. Already, companies such as 23 and Me can predict your chances of contracting Parkinson’s disease or Alzheimer’s for a couple hundred bucks and a vial of spit. Yet, more knowledge may not always be better. Incidentally, I did eventually have an oophorectomy, which was a huge relief, but I waited until after menopause, when attendant risks of cardiovascular disease, dementia, and Parkinson’s disease (among others) dropped.

  The thing I remember most about being told I had breast cancer was how the colors in my home office—where I’d been tidying up for the day, preparing to go to a movie with my husband—went flat. Isn’t that odd?, I thought, looking down at my newly alien torso. My red shirt has turned gray. My red shirt has turned gray, and I might die.

  That spectrum shift was the first sign that I’d passed through an invisible membrane into the parallel universe of the ill. I turned to my husband, Steven, who was standing in the doorway, listening in disbelief on the extension as the surgeon told us that I was a lucky woman, that the cancer was low-grade and slow growing, eminently treatable with a lumpectomy and six weeks of radiation. We stared at each other for a beat, as close and as distant as we had ever been. He reached his hand out, as if to keep me with him. “But I eat organic broccoli!” I wailed, and then began to cry.

  That was January 1997, only six weeks past my thirty-fifth birthday. The odds of being diagnosed at that age were one in 233. A fluke. “Do you have a family history?” an acquaintance asked when I told her the news. I suppose it was a natural question, although fewer than a quarter of breast cancers are familial. “No, I don’t,” I said, perhaps a little too harshly. “No one in my family has had breast cancer. I’m just like you.”

  As far as I knew, that was true.

  A week later, I read an article in the paper about a blood test that could detect inherited mutations in the BRCA genes, BRCA1 and BRCA2. In most women the BRCA genes suppress tumor growth. In some families, however, the gene contains a flaw, passed along by either the mother or the father, that makes it do the opposite, predisposing its carriers to breast and ovarian cancers. About one in eight hundred people in the general public carry the BRCA1 mutation, but among Ashkenazi Jews—those whose ancestors emigrated from middle or Eastern Europe—the rate of mutations in either gene is closer to one in forty. I’m an Ashkenazi Jew. My aunt had died of ovarian cancer at fifty-four. At the time, we thought that was a fluke, too. Yet even as the thought This could be me entered my head, I rejected the idea. No one else in my extended family had been sick. Besides, I already knew my lifetime breast cancer risk: it was 100 percent.

  There is a little bit of Vegas in predictive genetic testing, a roll of the statistical dice. Even if you found, let’s say, that you had an 80 percent risk for some disease, who’s to say you wouldn’t be in the other 20 percent? What if the known risk-reducing treatments come with risks of their own, the way tamoxifen, the widely used breast cancer drug, raises the risk of uterine cancer? Increasingly, all of us will be running the numbers and weighing the trade-offs on one scary condition or another—we all have skeletons lurking in our skeletons. In its zeal to find them, science has outpaced the medical, psychological, and ethical implications of its discoveries.

  Cardiovascular disease. Diabetes. There will be gene tests for all of them and more, and each will bring with it the same questions: Who should be tested? What is the benefit of knowing you’re at risk, especially if, as with the degenerative and ultimately fatal Huntington’s disease, there is no cure available? What responsibility does a person who tests have to family members, including those who might not want to know the status? Should genetic testing be a factor in choosing whom you marry? Would some couples want to abort if their fetuses were found to have a tendency toward cancer? Mutations are not a guarantee of cancer, remember, and cancer is by no means a death sentence. Maybe there are some things we can’t, or shouldn’t, control.

  The BRCA tests were among the first gene tests to hit the marketplace, and since they involve half the population and are harbingers of so much to come, they’re important and bear watching. That doesn’t make them any easier to deal with. “There are people who come in for their first genetic counseling session, then we never see them again,” said Richard King, director of the division of genetics and molecular medicine program at the University of Minnesota, in Minneapolis. “The risks are scary to face. But I’ve also seen the benefits of testing, even with Huntington’s disease. Families can get things organized and understand things better, be more prepared.

  “Would I be tested in that position?” He paused. “I don’t know. I can’t give a direct answer without thinking about it. Just like everyone else.”

  My mother mentioned something in passing: my great-aunt Golde had died of a “stomach ailment.”

  “You mean she had ovarian cancer?” I asked.

  She hesitated. “It’s possible,” she said. “Though who knows? Back then, it could’ve been appendicitis.”

  Oh, she continued, and Great-Aunt Jane? On Grandpa’s side? She had breast cancer in her seventies. And Anice, my first cousin once removed? The one who’d lived on a ranch in Montana? Breast cancer killed her in her early forties. Then there was Great-Aunt Minnie; she died of breast cancer, too. “But she was phobic,” my mom assured me, as if mental illness explained the physical one. Minnie wore only white and lived in an all-white house in Los Angeles with all-white furniture, including her grand piano. When she got sick, she refused to go to a hospital for treatment—she was afraid there’d be germs there. It seemed to me that Minnie had a lot more to worry about than breast cancer.

  I, on the other hand, was getting progressively more nervous—maybe cancer really did lurk in my family’s gene pool. I still hoped to have children; what might I be passing on to them? A year after finishing my breast cancer treatment, I finally mentioned it to my GP. “Everyone has some family history of cancer,” he said, shrugging. But he suggested I make an appointment with a genetic counselor, saying, “I think it will ease your mind.”

  I eyed the other patients at the Comprehensive Cancer Center at the University of California, San Francisco (UCSF). Were they getting treatment, or were they also waiting for someone to read their genetic tea leaves? An elderly couple shuffled in with his-and-hers walkers, the legs of which had been made scuff-proof by attaching Day-Glo tennis balls. In another context I might have pitied them their frailty, but now I found myself envious. At least they’d made it this far.

  My counselor was a young, sweet-faced woman named Lisa, who would assess my risk of a mutation from what was already known; then the decision of whether to get tested would be mine. She took my family history, tapping her pencil on her desk a few times before explaining that a Jewish family with just one case of early-onset breast cancer, combined with one case of ovarian cancer at any age, was statistically likely to have a mutation. Then she pulled out a pie chart. “See this section?” she asked, pointing to a large white slice. “This is sporadic breast cancer. It’s random. It represents about 70 percent of all breast cancers. These women have no previous family history of disease.”

  I nodded. That, I had assumed, was me. “Now see this section?” she continued, pointing to a smaller, striped area. “These are people with familial cancer, but without any known cancer-gene involvement; they may have other behavioral or inherited factors at work, such as body size or a naturally higher level of estrogen. This represents
about 20 percent of cases.”

  I nodded again. “Now this section,” she said, pointing to a thin, black sliver of the pie. “This is where I think you fall. These are people with a genetic mutation. My suspicion would be that you have a BRCA1 mutation. It carries a 60 to 85 percent lifetime risk of breast cancer and a 20 to 50 percent risk of ovarian cancer.” She went on to say that if I did have children, there was a 50 percent chance that I would pass the mutation on. She continued, but my mind had already floated away. It was so tacky to make that pie segment black, I was thinking, so insensitive. Couldn’t they make it green? Or polka-dotted? Less of a grim reaper?

  I focused my anger on the chart; I couldn’t absorb what the counselor was saying. Not yet. If she was guessing right, that meant I could get cancer again and again? And the next time, it could be in my ovaries? If I had children and they got sick, it would be my fault. Should I not have them? What if my mother hadn’t had me?

  If I did have the mutation, I heard Lisa say, the most effective risk-reducing options for carriers were a double mastectomy and an oophorectomy, removal of one or both ovaries. That is: amputation of healthy body parts. Once again, I gazed down at my body, which suddenly seemed like an assassin, a stranger. I’m a journalist, someone who believes in the power of knowledge. But for the first time in my life, I was weary of information. I wanted to go back to the land of the well; I wanted my visa to this other, desolate country permanently revoked.

  A long time later, I would find a kind of terrible beauty, a poetry in the BRCA mutations. They are ancient flaws, which some say date back to about 75 CE, around the time when the Romans sacked Jerusalem and forced the Jews into an exile that would last nearly two thousand years. There are now as many as eleven million Ashkenazim scattered throughout the world, but, since we’ve had a tendency to intermarry, we mostly descend from the same few thousand forebears. As devastating as the thought of having a mutation was, it was still a tangible connection to my deepest past, to a web of ancestors stretching across millennia. One of my grandparents had carried that legacy, deadly yet sacred in its history. So had his or her grandparents. And their grandparents. And theirs. The schism in our DNA had flowed through each of them into my own mother’s blood and finally into mine. Somehow, knowing they were all in me—with me—through this made me feel stronger.