Table of Contents
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First printing, August 2010
Copyright © 2010 by Amy Boesky
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eISBN : 978-1-101-45893-8
1. Boesky, Amy. 2. Cancer—Genetic aspects. 3. Genetic screening. I. Title.
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For Sylvia, Pody, Gail;
for my mother, Elaine;
and for the girls.
ON MARCH2 5 , 1 9 9 3 , AT
the end of a long, unusually snowy winter, I got a letter from the chair of the Department of Preventive Medicine and Public Health at Creighton University. They’d been following the cluster of cancers in our family since the 1980s, and they wanted to report what they’d learned. They listed statistics, numbers, names of “first-” and “second-degree” relatives. I read the letter twice. I looked down at Elisabeth, our newborn, who looked back at me with that uncanny infant mixture of myopia and focus. Sacha, our toddler, was upstairs napping.
I folded the letter up and put it away.
I knew this was big news. Even in my postpartum haze, I got that.
But there was a lot I couldn’t fathom. I didn’t realize how much the story we’d grown up with was about to change, how much of a difference it would make, rearranging what we knew—what we
we knew—about our family history. Seeing connections where we hadn’t before. Seeing fissures and breaks where before there’d been smooth, connecting lines.
THIS STORY IS ABOUT WHAT
it’s been like for one family—mine—to live with risk.
It isn’t really a cancer story, or a survivor story, though it has cancer and surviving in it. Instead, it’s a previvor’s story. A
is someone who doesn’t have cancer, but has a known (elevated) risk for it, discovered through family history or through diagnosis with a genetic mutation. That’s good news. If you’re a previvor, you don’t have anything—at least, not yet.
The bad news is, that means you don’t have anything to fix or get better from. You can diagnose being a previvor, but you can’t treat it. There are things you can do, protocols to follow. But the previvor part doesn’t go away. It just becomes part of who you are.
Previvors are a new group—the word hasn’t been around for long—but we’re growing in number every day. By the time this book is finished, there will be thousands more of us. It’s peculiar and compelling, this glimpse ahead—in some ways a curse, in others, a gift.
I used to think all my favorite words began with
Preface. Prepare. Prevaricate. Pregnancy
(that one doesn’t belong etymologically, but still).
for “prior to; earlier than.” Ahead of. I’ve always loved being early: the first to board the plane; the first to get a new piece of technology. The first to plan.
Preview. Premonition. Prevent
Would I have chosen this kind of preview on purpose?
I go back and forth. I talk about it with my sisters. Some days, the answer, emphatically, is
. Who wants to know her genetic destiny and have to live with the consequences? Who wants to sit down and tell her daughters about this?
Girls, guess what? We have this gene
Other days, I’m more upbeat. I tell myself having to live with consequences isn’t the point. It’s
to live. Maybe even choosing to live. For that, seeing ahead is worth it.
Two different points of view, and I have both.
There’s a shaped poem I’ve always liked by George Herbert which modern editors call “Easter Wings.” Most editors lay it out vertically, so the two stanzas (shaped like triangles) stand, inverted, on a single page. Set like that, it looks like an hourglass. But if you turn the poem sideways, it looks like wings.
That’s how it is for me, thinking about the future. Two different shapes. One holding time; the other escaping it. One suggesting fragility, confinement; the other, something transcendent. Turn it one way, you see an hourglass. Turn it the other way, and you see wings.
Why do we remember the past, but not the future?
—Stephen Hawking,A Brief History of Time
Seize the Day
MY FRIENDS FROM GRADUATE SCHOOL
couldn’t believe I was having a baby.
” they asked.
It wasn’t the
of a baby, it was the
“Well—I guess there’s never a perfect time,” my friend Annie said after a pause, by which I think she really meant,
Are you insane?
Annie, who teaches Literature and Trauma at Penn, had been two years ahead of me in graduate school and was much closer than I was to turning her dissertation into a book. Mine,
Time and the Early Moderns
, was still in pieces.
She sounded mystified, though I could tell she was trying to be supportive. “I’m not exactly young for this,” I reminded her. In seventeenth-century Britain—my field—I could have been a grandmother already, having married at thirteen, with a dozen children under my belt.
But in academia, thirty-two was considered young. I wasn’t even halfway through the six-year stretch before I came up for tenure. I could sense Annie’s unasked question: Why have a baby now, when Jacques and I had been married less than a year?
I didn’t want to get into it with Annie, but I had a reason. My biological clock was set way ahead. I’d grown up in a high-risk cancer family, and I’d always known if I wanted children, I had to get going. I had a deadline, and it was looming closer all the time.
In my case, there was no question of if. I’ve always wanted kids. It used to be an abstract, maybe-one-day thing. But after Jacques and I met, I started thinking about babies in earnest. Names and potential personalities floated through my head before sleep. I started doing all the predictable and embarrassing things—stopping strangers to exclaim about the content of their strollers; picking up miniature-sized shoes in Marshalls and turning them over like talismans. I even bought a copy of
What to Expect When You’re Expecting
. Good planners, those authors. There was a whole chapter devoted to people like me called “Before You Conceive.” Vitamins to take. Chemicals to avoid. What to expect when you expect to be expecting.
Planning wasn’t the right word for this. It was more like compulsion.
I didn’t meet Jacques until I was twenty-nine, and I wanted not just one baby (greedy girl) but
. In a different lifetime, with a different genetic makeup, I would have wanted more—a gaggle, a flock. Even as it was, we needed to get going.
I had a timeline. In my family, it was all mapped out—around age six or seven, you got glasses; around eighteen or nineteen, your wisdom teeth came out; and by age thirty-five, it was time to take out your ovaries. We were all on the same schedule, but my sisters (Sara, two years older; Julie, four years younger) had been better about getting their lives in order early. I was the laggard. I’d spent half my twenties in rare books libraries, which takes a toll on your social life. Besides, you can’t hurry love, as the great Motown song reminds us. And as I kept reminding my mother.