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By the time I find out the future written in my body, my mother has already lost her hair in chemo, so she sits next to me in a wig in the waiting room. The walk from the waiting room to the office seems long. The genetic counselor is asking about the snowfall in New England, where Justin, my husband, and I visited his family over Christmas. I don’t want to talk about the snowfall, though; I want to scream. My mother and I are walking into the caverns of the Cancer Center, where she gets weekly treatment for breast cancer.
Before I left for Christmas, I got three vials of blood drawn to send to a lab that would test it for the same BRCA1 mutation my mother has. The mutation causes up to a 90 percent chance of developing breast cancer and up to a 40 percent chance of ovarian cancer. Today, we are walking to the same room where we learned my mother’s results, with Hannah, the same counselor. She had made a family tree for us both, branches and circles looking more like a biology midterm than the manzanitas and oaks I grew up climbing.
Hannah, mercifully, tells me as soon as we’re sitting down that my fears are confirmed. “We found the same mutation that we found in your mother,” she says, pushing a stack of papers toward me to confirm, although it’s my body we’re talking about, which feels fine.
She is business-like and sympathetic, and for a brief moment I think how awful it would be to give people bad news for a living when you can do so little to help them. “I know it’s not what we were hoping for,” Hannah says impotently. My mom holds my hand; she is the only person who knows exactly how I feel, and she is sorry for this thing she could not help. Later, she even apologizes, but an apology implies intent, and I know she would get breast cancer every year to keep her child from having to go through it. She is that sort of mother, the sort who loves me beyond my own understanding.
“If you’re interested in having children but don’t want to pass on the mutation, you have a number of options,” Hannah tells me immediately. “You can do IVF and only implant the embryo that didn’t inherit the mutation, or test a fetus you conceive naturally with the intention of terminating it if it has inherited your gene.” The chances are 50 percent, a flip of the coin.
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“Can we just take our chances?” I ask. After all, medicine moves at the speed of light. I seem to have too much control over some choices and not enough over others.
Hannah explains that a sentence written in our bodies is misspelled. The sentence should read “The big black dog sees the ball.” Instead, my mother’s and mine say “Pig big ball black sees.” All of our bodies have our futures written. My mother and I just got to read ours sooner. But because I can elect to get prophylactic surgeries now, while I’m still healthy, I have a chance to rewrite the ending of my story. It’s not an easy choice even if I’m happily childless, because it requires making a decision in this moment that will impact the rest of my life.
When I go to the bathroom a few minutes later to text Justin my results, I see a sign that says, “Sometimes all you can do is laugh.” I told Justin not to take the morning off work to come with me, because I was confident I would be fine. After all, I felt fine. I have no symptoms of illness. He replies that he’s so sorry, we’ll figure this out, call him when I leave. We both know the only way to cut the risk of developing breast and ovarian cancer is simply to remove any organs or tissues — ovaries, fallopian tubes, and breast tissue — by age 35. I am 31. The small window I have to conceive, carry, and deliver a baby feels like it’s closing on us as we stick our heads out for air.
* * *
As a BRCA1 carrier, I need breast exams every three months. This is done through mammograms, MRIs, and ultrasounds, some of which I’m expected to pay for out of pocket. For now, I decide I will take my chances and continue getting my breast tissue checked rather than removed. It’s much easier to screen than ovaries.
When I first see the breast surgeon, she walks in the room, sits down, and asks, “Kids or no kids?”
“We want children,” I tell her, “but not right now.”
“Well, sooner rather than later,” she tells me. She has the same advice as the ob-gyn, as my primary-care doctor, as the Internet, and as my mother’s oncologist. “Every year you wait, your chances go up.”
My choice is between waiting until I’m ready for children, and increasing my risk for cancer each year I wait.
When I remove my shirt for her to take a picture of my breasts with the hospital iPad, she tells me, “You get really splotchy when you’re nervous.” I look down and see my neck and chest are bright red.
“You’d be a great candidate for a full mastectomy now,” she tells me as she snaps her picture. “You’re petite, so I’d make the incisions here and put in implants.” She points to the bottom of my breast.
“But what about breastfeeding?” I ask.
“It’s up to you,” she shrugs, “but it would be much more convenient. No more screening.” More convenient for whom, I want to ask.
“Come back in September for a mammogram and full-breast ultrasound,” she instructs. “Unless you’re pregnant by September, in which case we’ll cancel the mammogram.”
“Should I be?” I ask her, the alarm in my voice rising.
“Sooner is better than later,” she says.
* * *
My primary-care doctor explains that taking birth-control pills for fifteen years greatly reduces my risk of developing ovarian cancer. So for now, I take the oral birth control to prevent the children the doctors urge me to hurry up and have. I’m lucky to have health insurance through my job. Because paying for women’s birth control was one of the most hotly debated additions to the Affordable Care Act, it is one of the most vulnerable provisions now that Congress is working to dismantle the ACA. I take it to save my life, like people take a pill for cholesterol or heart disease. For me, it’s not a luxury. Women’s reproductive rights are not one-size-fits-all. We have lots of bodies and circumstances and should have lots of options. Justin and I take to the streets of LA for the Women’s March for women who don’t have the options I do.
My choice is between waiting until I’m ready for children, and increasing my risk for cancer each year I wait. I dream of traveling with Justin to Paris and Morocco, publishing my book, taking our time. We wish we could have children on our own terms, without feeling pressured by doctors or politicians.
In many ways, it feels like my mother’s body made a decision for me before I was born, just as I am taking my chances on passing on a genetic mutation for cancer to my own future children. Sometimes it feels like I have a ticking time bomb inside me, and by waiting until I am ready to have a baby, I am endangering myself just to prove a point about my bodily autonomy.
The decisions I will make over the coming years wake me up in the morning, sneak up behind me during the day, overtake so many of the quiet conversations I have with Justin in the evenings. Everyone has advice for me, projections of the choices they’ve made over the years: the babies they have had or not had, the careers they’ve secured or given up on, the books they’ve written or regretted leaving unfinished. It surprises me that I knew what I wanted to do — wait and see, rather than remove my breasts — as soon as I first learned of this diagnosis, and how strong my resolve has remained. For now, I’m not getting any surgery, but I give myself full permission to change my mind at any point.
In some ways, we all know the end of our stories, although we don’t know how they unfold. The agency I have in my decision uses those misspelled sentences to make something deliberate, carefully crafted, and beautiful. The shape of the story written within me can be rewritten by me.
Ellen O’Connell Whittet lives in California, where she is writing a memoir about ballet and the forces that control female bodies.