by Lizzie Stark
Plenty of BRCA carriers told me they would do IVF to prevent passing BRCA along—some of them had already done IVF because they had trouble conceiving or for other reasons—but many women, most of them young, told me that in the big scheme of things, they didn’t think BRCA was so bad, and they put their hope in future treatments for the condition. It’s hard to know what that hope might look like in practice, though, since inherited BRCA mutations, for those of us who have them, exist in every cell of the body. Joy Larsen Haidle, presidentelect of the National Society of Genetic Counselors, anticipates that medical advancements will allow women to make decisions more tailored to their personal health and lifestyles—there is still data coming in on when the ovaries are best removed, for example, or whether taking just the fallopian tubes earlier in a woman’s life might help protect against risk and possibly delay surgical menopause a few years. There are scientists studying how to best attack BRCA-related cancers, and whether and how to best screen for ovarian cancer. For a dose of optimism, she also pointed to major advancements in surgical techniques over the last twenty years that the world has been aware of BRCA.
All this is wonderful, of course, but it’s not the magic bullet I dream of.
I’m sure some people believe it’s ridiculous and immoral for me to procreate—and hey, if you don’t believe in global warming, I feel that way about you too—but from my point of view, I’ve made my peace with it. As a society, we have only just begun to understand the predispositions to disease that lurk in our genomes. In all likelihood, every single one of us will curse our kids with some susceptibility to an illness. The difference is that mine was identified early; I am blessed and cursed to know where my Achilles’ heel is and how much that risk is elevated. Of course, I would be devastated to learn a child of mind had a BRCA mutation, to know that my kid would have to endure the awful gauntlet. At the same time, this gene has shaped who I am, and I happen to like that person. I have lived a happy and fulfilling thirty-two years so far, and I’d like to live many more. Armed with knowledge of the family mutation, my kids—who would have a fifty-fifty shot of avoiding the ordeal—would have the opportunity to choose their own paths.
I am in the first generation of BRCA patients, the first generation of people who might knowingly pass this mutation to their children. With knowing, comes moral culpability—I bear it more than my mother and grandmother, who went into the process with eyes shut. A simple blood test opened mine. In this way, the knowledge itself is a burden—I am fully aware of my potential guilt and have to accept that responsibility. Is it really so bad, to have this gene? When Dr. Cook-Deegan of Duke University tells me to put on my Pollyanna hat, I do. He explains, “Basically, being a person with one of these mutations is now a predictor of not necessarily getting cancer, but of having to do something to prevent getting cancer.” My kids will have a 50 percent chance of having to do something sucky, and I think I can live with that.
But in large part, it’s family pathos that has pushed me into pulling this trigger—after watching my mother treated for cancer, I could hardly do otherwise. I wonder whether my potential child—let’s make her a daughter since BRCA attacks women’s organs more intensely—whether my dream daughter will make the same decisions. If all goes according to plan, if I do not get cancer, then she won’t have to see her mother suffer, won’t have to fear for her mother’s life the way I did. And if she doesn’t have the fear, will she have the surgery?
As Kathy puts it to me in an e-mail about her daughter Ellie, “Both you and I experienced our mothers constantly being treated/watched for cancer. Pretty intense. Ellie hasn’t, thank goodness, had that experience. However, cancer is not as real for her either.” It’s then I realize: if I have kids and I’m not one of the few unlucky people who get cancer even after having preventive surgery, then they’ll be in Ellie’s shoes. So I call her.
Growing up, Ellie tells me, “I probably thought more about heart disease than cancer,” because both of her grandfathers suffered from heart problems and because her mother shielded her from knowledge of the family plague. Ellie tells me she didn’t find out about it until she was twenty-two, though her mother and brother remember at least one family talk about it before then, one that apparently didn’t sink in. “Obviously, I knew about my grandmother [El] and obviously that there was a lot of history in our family, but I definitely had no idea about the extent and definitely had no idea about my mom or aunt,” Ellie says. She is five years my junior and learned of the family BRCA mutation the same year I received my test results. Her mother’s preventive mastectomy shocked her, in part because for her undergrad thesis in psychology she’d helped with a research project on BRCA, learning about the condition and taking down the histories of many women in our shoes. “The entire time I had no idea it was so part of my family, so when my mom first told me it was really a shock,” she explains. And yet, she understands why her mother decided not to discuss the issue with her. She believes the knowledge would have burdened her growing up, until she was old enough to process it. For Ellie, the family legacy “seemed more of an abstract idea or concern” for the first few years after she learned of it. In her early twenties, “I was working like eighty hours a week, ninety hours a week, trying to keep my head above water, and I think that made me push it into the back of my mind because I had so little energy for it,” she tells me.
The news changed Ellie’s relationship with her mother. It felt weird “for me to not know that my mom had done all that and all this has been weighing on her for twenty-two, twenty-three years and she never said anything…. I guess it made us closer in some ways. I feel like I understood her life better; I understood what she went through in her twenties…. I could just see my mom more clearly now, as the twenty-something year old, her mom having just died, having this significant concern and being single.” The news made her mother “more human, for lack of a better phrase, especially as I’m now this age and depending on the day I do or don’t know what I want to do with my life.”
Like me, Ellie sat with the knowledge of her mother’s positive genetic test for a few years. Over those years, her mother encouraged her to get tested by her mid-twenties, and they talked over all the options together. She also opened up about her doubts and fears to her boyfriend of one year. “He was the first person I ever talked to about it outside of my family,” she says. “And he’s been very supportive in terms of helping me talk it out about the effects of getting tested, let alone afterwards.” Ellie describes herself as the sort of person who always wants to know “the most information about everything as soon as possible,” so she surprised herself—and her boyfriend—by vacillating about the test. Eventually, in 2013, at age twenty-six, she went to her ob-gyn’s office and had blood drawn—her doctor felt that she was so informed about the options and risks that she didn’t need to go to a genetic counselor—and the simple act of getting tested made her feel immediately better. “I felt relief that one way or the other I would be able to make a decision,” she says.
While she waited for the test to come back, her grandmother—her father’s mother—died. So rather than feeling anxiety about the test, “I was upset about and processing that.” For a moment, on the phone, I flash back to my own grandmother’s funeral, a mere six weeks after my own test results.
But my story is not Ellie’s story. She felt relieved when she received her results, she tells me, “but even then it took me a month to realize what that meant, … that I wouldn’t need to be so concerned about it and all of the ‘if this happens,’ ‘when this happens,’ ‘when I do this,’—I didn’t have to do that anymore.” When she tells me about her negative results, the flash of pure joy stays with me all day. Someone has escaped. One of us has escaped, and she doesn’t have to continue down the horrific decision tree, doesn’t have to eat at the BRCA restaurant where all they serve is gristle soufflé and castor oil soup—she is free. The coin landed right side up at last.
Still, she must have prepar
ed for the worst, so I ask her if she knows what she would have done if the results had been otherwise. “Not with certainty,” she says, “but I think I probably would have gotten surgery. Kind of for the same reason—I wouldn’t want to spend my life waiting for a shoe to drop.”
If I have children, I hope they will be like Ellie—smart people engaged in the world who thoroughly think through decisions, even the decision about whether to test at all, with the help of people who love them. And yet, BRCA has shaped her life too, has changed her relationship with her mother, singing its silent pedal tone of fear and uncertainty for a few years until she decided to make her move. It’s not an easy or simple thing to deal with. A BRCA mutation denies closure. One surgery may not be enough for me—I must contemplate another. My mother still feels guilty; it hits her in fits and starts. Occasionally she still cries about it, calls to apologize and say she wishes I didn’t have this gene and that she’s sorry I do. I don’t mind so very much, I tell her. After all, this gene has made me who I am. There are worse things in the world.
13 | Through the Looking Glass
What I am living with is just one possible outcome of a BRCA1 mutation.
In December 2012, when I am partway through writing this book, I get a call from my friend Sarah. She and I met in graduate school, and we’ve been through a lot together—starting the literary magazine Fringe, marriage, her divorce, my mastectomy. Though we live in different states now, we still meet up occasionally to watch our favorite TV shows and cook together. When she calls me, shortly after Christmas, I can immediately tell that something is wrong. It’s Cheri, she tells me.
Sarah and I are very close—but Cheri and Sarah are so close that their friendship transcends the word. They have been best friends since junior high and are essentially family at this point. I know and like Cheri. We’re in each other’s orbit—she worked on Fringe for a while, I’ve been to dinner parties at her place, and she and Sarah once drove eight hours to play a role-playing game with me for my first book. We run into each other at Sarah’s parties, and I usually ask after her when Sarah and I talk. She’s the best friend of one of my best friends. And as it turns out, unhappily, we have far more in common than that.
That December, Sarah has called me in a panic to tell me that Cheri has breast cancer. I feel her fear palpably rolling through the cellular space and into my body. I’m shocked, but not as shocked as I am when Sarah calls me again after New Year’s. It’s not just breast cancer, it is Stage IV breast cancer that has already metastasized to Cheri’s lungs, lymph nodes, and liver—incurable cancer that is grade 3 on a scale from 1 to 3, which means the cells look abnormal under a microscrope and are dividing very quickly. It’s also triple-negative, meaning that hormone therapy won’t help. Cheri’s cancer is advanced, aggressive, and will ultimately be lethal. And it is caused by a BRCA1 mutation she didn’t know she carried.
Five months later, after Cheri has been through biopsies and radiation and two rounds of ineffective chemo, she and Sarah go on their long-planned trip to Europe with Cheri’s sister and stepmother. It was important to everyone that they still go despite the dire news. It’s a difficult trip—not just because of the diagnosis, but because it is Cheri’s first time away from her infant son since his birth. As the trip progresses, Cheri notices that half her face won’t smile right in the photos, so she e-mails her nurse. At the Louvre, she and Sarah split off to see the winged Nike of Samothrace together, a white marble statue of the goddess of victory, heavy drapery pressed against her breasts, wings arched back in triumph. They pose for pictures and wander into the Egyptian wing of the exhibit hall together and are looking at sarcophagi when the phone call from the doctor comes, along with the news that either it is a palsy or the cancer has spread into Cheri’s brain. But she can finish the trip and see the doctor first thing when she returns. Cheri tells me the news was “just enough to give me a sliver of hope but be worried the rest of the trip, because deep inside I know the truth.”
When Sarah tells me about the sarcophagi, how they reeled among the elaborate coffins in the exhibit hall, all I can think about are Imhotep’s words in the Smith papyrus, the simple statement that there is no cure.
When they return from Europe, the MRI shows many small inoperable tumors in her brain. It can be hard to treat brain tumors, because much chemo cannot break the blood brain barrier. Cheri, age thirty-four, undergoes whole-brain radiation.
The diagnosis ripples outward through my circle of friends. Within less than a year, Sarah has remarried, to a divorcé, and is stepmother to his four kids, her life accelerated, perhaps, by the new knowledge that time is limited and precious. With the exception of Sarah, none of us are super close to Cheri, and we feel as if we are not entitled to the scope and intensity of our grief. When we meet up, we talk about how much this has affected all of us—we weep at home after reading her husband’s updates on the private site dedicated to her care or after she posts a new blog entry about living with this diagnosis. Two of our friends meet up with Sarah to try out a new bar in Boston, and they all begin crying so hard that they joke they can never go back there. The Fringe editors who knew her—all women, all close to Cheri’s age—band together to do something for her. Though we exchange many e-mails about what we should buy her, we feel thwarted by the cancer too, by our inability to help in a meaningful way. We pay for someone to clean her house. It feels like a pitiful offering.
It is unendurable. It is miserable. It is beyond crappy. And we are all distanced from the epicenter, where the vast blue space of hope must be limited, folded up over and over again until it is small enough to swallow. A long, healthy life for Cheri is unlikely, so we hope she will live a good life for as long as possible, even while understanding that her cancer did not respond to the first two courses of chemotherapy, and now it is in her brain.
The fall after her diagnosis—nearly a year later—I decide to visit Cheri and interview her, if she is willing. It’s hard to schedule our meeting, since first she is recovering from whole-brain radiation. “I had that for fourteen days,” she tells me. “That sucked.” Then she is in the middle of a chemo cycle, which means she is tired for nearly a whole week after she receives treatment. But eventually, we find a day and time, and although I’m terrified that I’m getting a cold—not so bad for me, but dangerous for a person whose immune system is weakened by chemo—we settle on a meeting.
The truth, though, is that I am scared to see her. As we rattle forth about dates and times, as I make the four-hour drive from New Jersey up to her house in Massachusetts, I revisit scenes from my childhood.
After all her own illnesses, my mother has a soft heart for other people in their times of need. Growing up, it felt like she was always baking crumbed chicken pieces to take to families with people who were sick, dying, dead. She took women from her church to Nordstrom to be fitted for prostheses and wigs, served as a member of the prayer chain, remembering people on the list before bed. She seemed physically sick when one of her church friend’s children got asthma, like I had, or a rare blood disorder, which I didn’t. Sometimes she’d babysit other people’s kids for a few hours to give the adults time to sort through the insane hash of their lives.
I often played with those kids. For a few weeks in kindergarten, another girl came over a couple of mornings a week. We’d all heard her mother had died, and we whispered about it on the school bus, shrinking away from her as if she might contaminate us. In fourth grade, I became friends with a girl whose mother developed breast cancer, so my mom scheduled twice-weekly playdates that lasted until the troubled girl, jealous that I had advanced further in ballet, nicked my toe shoes. A few years later, her mother died.
Most of all, I remember a woman from our church who developed terminal breast cancer when I was in high school. Her kids were a few years older than me, and I knew them from youth group—though they were way cooler than I was, so we weren’t friends. Our moms, both active in the church, had a very friendly relation
ship, though. After hospice had been called in, I went with my mother to deliver a large batch of my father’s beef soup, homemade down to the hand-diced meat and meticulously skimmed stock. I remember stepping over the knotty roots of a tree outside their house with my tray of goodies. Inside, the absence of the teens relieved me—I was an awkward kid. Nothing could have prepared me for the sight of this woman. Her skin stretched so tight over her skull that she looked like the walking image of death. Her skeletal arms reached up to touch my face, the fingers pinching my cheek, and she laughed hysterically as she told us that the cancer had spread to bone and brain. Her husband looked on calmly and tried to reassure her.
My mother has never been one to flinch at the body, to deny the lived experience of anyone; she sees the essential humanity and goodness in people. She kept up the light patter of small talk for fifteen minutes, and then made sure to show herself out over our hosts’ protests, with the firmness of someone who knows how tiring visitors can be after chemotherapy.
