by Amy Boesky
Table of Contents
Title Page
Copyright Page
Dedication
PART I
Seize the Day
What We Knew
Emily
Ninth Month
Birthday (I)
Help (I)
First Christmas
Going Back (I)
The Interview
The House with the Green Shag Carpet
Self-Exam
Turning Over
PART II
Two Calendars
F-U
What We Always Did
Help (II)
Words for Things (I)
Birthday (II)
Drawbridge
Going Back (II)
The Moon Ring
Safe as Houses
Words for Things (II)
What We Know (Now)
EPILOGUE
Acknowledgements
GOTHAM BOOKS
Published by Penguin Group (USA) Inc.
375 Hudson Street, New York, New York 10014, U.S.A.
Penguin Group (Canada), 90 Eglinton Avenue East, Suite 700, Toronto, Ontario M4P 2Y3,
Canada (a division of Pearson Penguin Canada Inc.); Penguin Books Ltd, 80 Strand,
London WC2R 0RL, England; Penguin Ireland, 25 St Stephen’s Green, Dublin 2, Ireland
(a division of Penguin Books Ltd); Penguin Group (Australia), 250 Camberwell Road,
Camberwell, Victoria 3124, Australia (a division of Pearson Australia Group Pty Ltd);
Penguin Books India Pvt Ltd, 11 Community Centre, Panchsheel Park,
New Delhi–110 017, India; Penguin Group (NZ), 67 Apollo Drive, Rosedale,
North Shore 0632, New Zealand (a division of Pearson New Zealand Ltd); Penguin Books (South
Africa) (Pty) Ltd, 24 Sturdee Avenue, Rosebank, Johannesburg 2196, South Africa
Penguin Books Ltd, Registered Offices: 80 Strand, London WC2R 0RL, England
Published by Gotham Books, a member of Penguin Group (USA) Inc.
First printing, August 2010
Copyright © 2010 by Amy Boesky
All rights reserved
Gotham Books and the skyscraper logo are trademarks of Penguin Group (USA) Inc.
The author wishes to make clear that while this is a work of
nonfiction, some of the names, events, and dates have been
changed in order to protect the privacy of those involved.
eISBN : 978-1-101-45893-8
1. Boesky, Amy. 2. Cancer—Genetic aspects. 3. Genetic screening. I. Title.
RC265.6.B64 2010
616.99’4042—dc22 2010008873
Without limiting the rights under copyright reserved above, no part of this
publication may be reproduced, stored in or introduced into a retrieval
system, or transmitted, in any form, or by any means (electronic, mechanical,
photocopying, recording, or otherwise), without the prior written permission
of both the copyright owner and the above publisher of this book.
The scanning, uploading, and distribution of this book via the Internet or via
any other means without the permission of the publisher is illegal and punishable
by law. Please purchase only authorized electronic editions, and do not
participate in or encourage electronic piracy of copyrighted materials.
Your support of the author’s rights is appreciated.
While the author has made every effort to provide accurate telephone numbers
and Internet addresses at the time of publication, neither the publisher nor
the author assumes any responsibility for errors, or for changes that occur
after publication. Further, the publisher does not have any control over and does
not assume any responsibility for author or third-party Web sites or their content.
Penguin is committed to publishing works of quality and integrity.
In that spirit, we are proud to offer this book to our readers;
however, the story, the experiences, and the words are the author’s alone.
http://us.penguingroup.com
For Sylvia, Pody, Gail;
for my mother, Elaine;
and for the girls.
PROLOGUE
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 thought 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 previvor 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 pre. Preface. Prepare. Prevaricate. Pregnancy (that one doesn’t belong etymologically, but still). Pre 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 no. 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 getting 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.
“Now? ” they asked.
It wasn’t the what of a baby, it was the when.
“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 two. 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.
Once I’d found love, though, I was good to go. I was thirty-one when Jacques and I got married. The way I saw it, we had four years—two per baby.
The trick was not to lose focus. I’m a born planner—I love thinking ahead. Jacques, on the other hand, thinks planning and over-planning are more or less the same thing. By the time I realized how great a premium he puts on spontaneity, we were already in love, and what could we do? Forget that he’s from South Africa and I’m from Detroit, or that he loves numbers and newspapers, and I love poetry. The real difference between us is how we deal with the future. It’s like the Montagues and the Capulets, and as long as we’re together (which given that we’ve promised each other “till-death-do-us-part,” I hope is for many, many years), this aspect of our life together will drive us both to distraction.
Jacques and I may live together, but we inhabit different time zones. Say it’s twenty to eight, for instance, and we’ve got dinner reservations downtown at eight. Jacques will be upstairs dreamily flipping through the pages of the Boston Globe, still in his sweats, languid, oblivious to any sense of impending deadline. Whereas I’ll have been ready, pacing, fingers tapping, for at least half an hour. Wherever we are and whatever we’re doing, Jacques feels early and I feel late. He claims it’s a northern hemisphere/southern hemisphere issue. We grew up with different frames of reference—when I think north, he thinks south; when I think winter, he thinks summer; the constellations that show up in his dreams are unfamiliar to me.
Maybe it’s geographic or genetic. Maybe it’s just who we are. All I know is, Jacques likes letting things unfold, and I like pinning them down. He likes to “wait and see”—his personal motto—and I like to plan. I like knowing where we’re going on vacation next August or how it feels, all air-conditioned and unpressured, getting to the airport an hour before you have to. Time to buy Lifesavers, to browse the magazines. It’s the pre in me.
Jacques is more post than pre. Maybe even anti.
We didn’t know this about each other right away. I was actually running late when we met, and Jacques was early. Friday afternoon traffic had kept me trapped in a taxi three blocks from Boston’s South Station while he, fresh from the Red Line, fell into one of the last available seats on the southbound Yankee Clipper.
It was a strange period for me. I was anxious about the job market, and to compensate, I’d been trying to adopt a devil-may-care approach to the whole process. Whenever anyone asked me about it, I was offhand, blasé. But it felt unnatural, like trying to tell a joke in another language. After long discussions with my advisors, I sent off applications for jobs in every English department hiring in my field—thirty in total. There were no jobs in Boston. Most were west of the Mississippi, in obscure locations like Lubbock, Texas, and Tempe, Arizona. I pictured myself, the lone single woman, making my way through Safeway with a cartful of prewashed lettuce.
Georgetown, near my sister Julie and her husband, Jon, seemed like the ideal option on the eastern seaboard, and it happened to be the only place I knew a single soul. Right from the start, that was the job I wanted, even though I knew it was wrong to fixate on one position. My advisors were always reminding us not to be “bicoastal.” We were supposed to be like missionaries, grateful for any crumb. Who cared where you lived if you got to teach seventeenth-century literature three days a week?
Actually, I did, but I tried to keep this to myself. Maybe it was time for a change. I was sick of the Northeast. I was recovering from a bad relationship with a graduate student in history who used to make me listen while he read out loud to me from his dissertation on war. I figured I could use a fresh start.
If I got the job in Tempe, I could buy southwestern pottery, wear turquoise. I’d reinvent myself, save up for a pony.
Bolstered by my feigned open-mindedness, I sent my applications off Express Mail and headed down to Philly to visit Annie. Friday, five o’clock, Amtrak. Rumpled and irritated, I fell into the last seat as the train was lurching away from the station—no time for Lifesavers, let alone magazines. I didn’t notice Jacques, half dozing against the window, until I’d finished stuffing my book bag under the seat. Then I couldn’t take my eyes off him. Dark beard, beautiful gabardine suit. He was half asleep, and I had to do a lot of throat clearing and elbow bumping to wake him up.
Once he opened his eyes, I was transfixed. He was like a magnetic field; I felt this extraordinary pull in his direction. I know this sounds crazy, but it’s true: I looked at him and thought, This is it. This is the man I’m going to marry.
“You can’t be serious,” Annie said, when I told her that later. “He was asleep.”
“I’m telling you how I felt,” I said, unapologetic. I’d been reading Petrarch that week and was steeped in neo-Platonic longing.
Besides, Jacques hadn’t stayed asleep. We talked all the way from Boston to Penn Station—his stop; he was on his way to a conference in New York for the weekend. Four and a half heavenly hours. Time felt slowed down, then speeded up; everyt
hing seemed both to matter and suddenly not to. Jacques has a beautiful, lilting South African accent, and I was enchanted by his voice.
“He could’ve been saying anything,” Julie objected, going over the encounter with me later on the phone. “He could’ve been talking about the weather! You’re smitten with an accent.”
But the accent was only part of it. Mostly, I was spellbound by the sense between us of same and different. In one way, Jacques and I seemed like opposites. He worked downtown—computers and finance—and owned his own house, complete with a small yard and a pear tree. I was still in grad school, living in a dorm in exchange for writing fellowship letters for scholar-athletes. But we had an instant sense of shared values—what Malcolm Gladwell calls a “blink” moment. Jacques couldn’t believe I was writing a children’s book about a boy named Mordecai. Mordecai! He had an uncle named that!
We both had grandparents from Lithuania. We’d both had Labrador retrievers as children. We both loved Thai food, and political cartoons, and were both down at the Charles River early every morning—Jacques to ride his bike, me to go running.
Our birthdays were one day apart in May. A year and a day, to be exact, since he’s a year older. 366 days. “Do you know what three hundred and sixty-six is?” I asked Julie, who still sounded skeptical.
“I think you’re going to tell me,” she said.
Three hundred and sixty-six happens to be the number of love poems Petrarch wrote to Laura in The Canzoniere. One for each day of the year, and then one more, to represent perfection. Perfection plus.
I was smitten, and it wasn’t just Jacques’s accent. I loved everything about him. I loved how tender he sounded when he talked about taking care of his tiny house, with its postage stamp of lawn and its burnished pears. It reminded me of the Little Prince swabbing out his miniature volcano each night, and in fact, Jacques looked to me like a dark-haired version of the Little Prince, a mop of curls and eyes an extraterrestrial shade of blue. By the time we reached New York, we’d exchanged phone numbers. When he got off at Penn Station, we waved passionately, like Yuri and Lara in Dr. Zhivago. The next week, back in Boston, he called me up, sounding shy, and asked me to meet him in the Square for dinner. The next night, too. By the following week, we were spending almost every evening together. “That was fast,” Annie observed dryly, when I spent half my time at the English job fair that December phoning Jacques to report how my interviews had gone, and by January he was coming with me to visit universities where I had callback interviews. I didn’t even pretend to be open-minded anymore. I didn’t want to be in Tempe or Lubbock. I wanted to stay as close to Boston as possible. Georgetown, a short flight away, was by now my clear first choice. It also happened to be the best place for Jacques, if he were to leave Boston and come with me. That was a big if—it was way too soon for planning, as I reminded my mother and my sisters, one at a time. Sara, in a different time zone and preoccupied with Geoff and her daughters, was long out of this phase of life. But Julie zeroed right in.