by Amy Boesky
APRIL 12, JACQUES AND I went to see Dr. Muto at the Farber.
Sacha stayed home with Annabel. We brought Libby, since I was nursing and couldn’t be away from her for more than a few hours. When we got off the elevator, the department I’d gone to for all those years was gone. They’d merged, annexed now to the high-risk breast cancer group, like a tugboat pulled up onto an ocean liner. Before, there had been two hallways, two departments, two diseases. I remembered the way I used to get off at the elevator bank and turn, looking back at the breast cancer wing, with its shop selling scarves and wigs, and I’d feel a stab of something. Not pity, just that not-me sense (relief ?) as I turned and walked the other way, to the smaller, less crowded waiting room where we ovarian people waited with our separate anxieties and terrors. Now, I had a whole other hallway claiming me. A whole new set of options to puzzle through.
This new department (Women’s High Risk Cancers) was buzzing. Ten doctors to every one I was used to. Lots of cherrywood and granite. They were trying to set up a protocol for genetic testing, but it was all still brand-new. One doctor (a geneticist) came over to talk to me before my appointment with Dr. Muto. She had a clipboard, a pager, and a watch that looked like the kind runners wear. This was all just breaking news, and none of the support systems were in place yet—the counselors, the routine. It was all frontier. The ink wasn’t dry yet on the brochures they gave me. A lot of information had to be ad-libbed, nobody had the story completely straight yet. She explained what it would mean if I carried the mutation. An 85 percent chance of getting breast cancer over my lifetime. A 50 percent chance of ovarian cancer. If I had the gene, that is.
But of course, there was a chance—a 50 percent chance—I didn’t.
What would that mean, I asked. If, say, I happened to test negative?
Well, she said, considering. That was actually hard to say. They had found this one gene, but they were very close to finding another. Until we knew exactly what my family had—she glanced at my chart—that is, until someone tested positive, we couldn’t know for sure. Positive for BRCA1, that is. Not for something else. It was possible my family had a different gene, in which case, we could all test negative, and that wouldn’t really tell us anything at all.
Here’s the way she explained it: They’d found Dallas, and maybe Houston, but there was still the rest of Texas out there.
“What about your mother?” she asked me. “Was she tested before—?”
I cut her off. “No,” I said. Most days, I could manage when people asked me about her. This didn’t feel like one of those days.
While we waited for Dr. Muto, my head buzzed. I felt even more confused about the test.
I needed to talk to Sara and Julie, and see what they thought.
What I really needed, though, was to ask my mother. What would she do?
My mother liked tests. Wasn’t she the AP guru? On the other hand, this seemed more like pass-fail. My mother had never thought much of pass-fail as an option.
I had no idea what she would say: She’d taken the answers with her. We were on our own.
WE FILED INTO DR. MUTO’S office. Jacques took one chair, I took the other, Libby in my arms.
“I’m sorry about your mother,” Dr. Muto said, looking straight at me.
I dropped my eyes.
“Thanks,” I said. Jacques leaned over and put his hand over mine.
I told Dr. Muto we wanted to book the surgery. Remember, I said, we talked about it back in November? “I’ll be thirty-four next month,” I reminded him.
Dr. Muto cleared his throat. “What about getting tested first for BRCA1?” he asked.
I shook my head. “I don’t think I’m ready for that yet,” I said. “My sisters and I need to learn more about it, figure out our family’s strategy. But that’s going to take a while. And in the meantime—” I paused. “I don’t want to wait much longer for surgery,” I added. “Not past this summer.”
I wanted my ovaries out, test or no test.
“Why?” Dr. Muto asked gently. (He is a kind, kind man.) “Why wouldn’t you want to think about having the test first?”
The most honest answer may not have been the best one. Because I’ve always planned this.
This surgery had always been on the horizon for me. Always. I’d grown up believing this was the one thing that would keep me from ending up like Sylvia and Pody and Gail.
I understood the landscape had changed, tectonic plates had shifted, we were on new terrain. But I was almost thirty-four. In just a year, I was going to cross the line. I wouldn’t be on the safe side anymore.
What if I took the test and it was negative and Dr. Muto wouldn’t do the surgery? Hadn’t the doctors just told me that until they got a positive—for one of us—the negative wouldn’t mean anything definite? Neither Julie nor Sara was keen to be tested. Sara, maybe one day. Julie felt the way I did. It could be years before we knew for sure which exact mutation my family had. And I didn’t have years.
“Well,” Dr. Muto said, thinking this through. “There’s three of you, right? So the odds are—”
The odds were one of us was positive. Maybe two. Only for me, these weren’t just three circles on a grid. These were my sisters and me.
“It’s a group decision for us,” I said. “We’ve agreed to wait till we’re all sure it’s what we want.”
At least what we had now—new information—was something all three of us shared.
But once we started taking the test, that would change. Given the odds, we wouldn’t all get the same results. Picture that in my family. Picture Tricky Triangle crossed with Who Got What. I could barely imagine that. What would that do to the three of us as sisters?
“What do you think of all this?” Dr. Muto asked, turning to Jacques.
Jacques cleared his throat. “It’s hard, imagining Amy having the surgery right now,” he said slowly.
Dr. Muto nodded, waiting.
“But, knowing her—” He glanced at me. “I think the test would be a bad idea.”
I was surprised. We hadn’t talked about this yet. Jacques is usually very rational about decisions. I would’ve guessed he’d want me to be tested, especially since it could delay or even prevent surgery.
Dr. Muto looked thoughtfully at him, considering. “OK,” he said at last. “Here’s a plan. Why don’t we schedule surgery for late this summer, which is what Amy wants. In the meantime, though, you two should keep thinking and talking. I’d like to meet with you both in July to reevaluate before we go ahead and confirm this.”
That seemed fair to me. We set the date for August 25. One night in the hospital at most. The whole thing would take less than two hours. Thirty-four years of worrying, over just like that.
No more ovaries. No more Tampax or periods or feeling particular ways at particular times of the month. No more thinking about myself the way I had since I got my period at eleven.
The worst part: no more babies.
But on the other hand, no more CA-125s. No more ultrasounds. No more living from fear to fear. At least not this fear. And that was a start, wasn’t it?
IN MAY, WE HAD A naming ceremony for Libby. My father came. Julie and Jon came with Maddy. We had some neighbors and friends. One reason for the ceremony was to talk about how we’d chosen Libby’s name: Elisabeth.
In Hebrew, it means “God’s promise.”
Funny, how much I liked that. Even the God part.
I sat up the night before the naming ceremony, thinking about why that was. Maybe it isn’t completely true to say I don’t believe in God. Maybe it’s just that I haven’t found the story yet that makes sense to me. Not the Christian story. Not the Jewish one, with all those smitings and begettings. But something that explains the ways in which we are connected to one another, generation after generation. The things we give each other. The love of poetry. The way it feels to turn a word over and over, until it glows. Predispositions. Predilections. Gifts.
SARA COULDN’T F
LY OUT FOR the naming—she was teaching, the girls were in school. But she had written Libby a letter, which I tried to read out loud. I got through most of it, but my voice broke when I got to the ending.
We will always love you with a special kind of love, because you are our E.
E: Elfin. Exuberant. Empathic. Energetic. Elegiac.
Elisabeth. Who is almost never called that, but instead called Libby. For Elaine, giver of nicknames.
Who was herself almost never called Elaine. Mom. Bomma. Mellie. My father called her “Tude.” “Nails.” Gail, who couldn’t pronounce Elaine as a child, called her “Naincy.”
Names—like gifts—connect us. We name each other, and then name each other again. It doesn’t stop.
This wasn’t a ceremony for my mother, though. We’d had that. New Year’s Day at Cranbrook. The ground too frozen to bury her ashes.
This ceremony was for Libby: for life, not death. For the start of things, not the end.
“When,” I asked Julie that night, sitting up with a glass of wine in the kitchen, “will everything we do stop feeling like a memorial service for her?”
Julie shrugged. “Never?” she said.
I asked her about August. Would she be able to come down and help Jacques with the girls when I had the surgery?
“Absolutely,” she said.
“I’m next,” she said after a moment, thinking. “After the next baby, whenever that is.”
Then we talked about the test. BRCA1.
“The problem,” I said, trying to figure out what the problem was, “is that it doesn’t just change things for one of us. It’s all of us.” I looked at Libby, who had fallen asleep in my arms, still half-nursing. “It’s them, too. We’re deciding, once we know, what they’ll know.”
I was still in between, still used to thinking more like a daughter than a mother. But that was beginning to change. Jacques and I had talked ourselves blue in the face about this, and though we disagreed about a lot, one thing we both felt strongly was that we wanted the girls to grow up as unafraid as possible. I wanted them to love their bodies, to love being alive. I didn’t want them to panic over every rash or mole, the way I always had.
I didn’t want them to hear the word ovary and think of dying.
When I asked Jacques why he’d said what he said to Dr. Muto—about the test being a bad idea for me—this is what he came back to.
“I just know you,” he said. “If you get bad news, you’ll never stop worrying. Ever. You could have every surgery imaginable, and you’d still worry.”
He wanted to protect me from how he knew I could be.
Julie wanted to know what I was going to do after August. What about the rest of it? Ovarian surgery was only part of the solution. What about breast cancer?
I hadn’t thought that far ahead. One body part at a time, I told her.
IT’S A FUNNY PHRASE, “ SETTING the date.” Like you’re putting something in place—a brick in a foundation. Something to build on.
I’d thought about this surgery for so long it was hard to believe it was getting closer. August 25: an auspicious day. Actually, it just happened to be the day that worked best for everyone: Dr. Muto; Julie, who was staying for a few nights to help us out; Annabel, who by some lucky fluke had decided she wanted to keep working with us, even after her year was up. (Neither of us ever wanted to go back to Eileen Diamond.)
“Are you scared?” Julie asked me.
“A little,” I admitted. It wasn’t the operation itself, which Dr. Muto had explained was fairly simple. Because they could use a laparoscope, there wouldn’t be much pain, and the recovery time would be very short. What was unnerving was imagining what life would be like afterward. As Dr. Muto kept telling me, the ovary is a smart little organ. It does much more than just produce an egg every month. Ovaries produce estrogen, helping all sorts of functions in the body: circulation, memory, nerve conduction, energy, libido, skin tone and elasticity. Moisture in the eyes. The body’s sense of cycles, of time. It would be a little like taking the mechanism out of a clock, I thought. For months, I’d been insisting it would all be fine, that I was ready. But now that the day was here, I couldn’t help worrying. What would it feel like?
I was probably the first patient in Dr. Muto’s practice to have this operation so soon after delivering a baby. But I was ready. The timing was good. Waiting till August had given me five months to nurse. I’d be back on my feet, we’d have ourselves settled before I started teaching. And I could make my deadline. I’d be having the surgery before I turned thirty-five.
In some sense, I was doing this in my mother’s honor. We couldn’t turn our backs on what we knew. We still had our family history, even if it was different from the one we thought we knew. It would be unthinkable, after all this suffering, not to try our hardest to keep this from happening again.
We knew, each of us, that the sharpshooter was still out there, circling. Watching my mother fight for her life moved each of us one step closer to the enemy. She’d been our guard. To the very end, that’s how she saw it.
In December, the three of us had gone back to see her, not knowing it was the last time. She was on oxygen, she could barely speak, but she was still trying to reassure us. Wasted, barely able to draw breath, grabbing our hands with her bony fingers, like a claw. She gasped at us: This is it. I’m the last one. This stops with me. As if superstition, not science, really had the final word.
But we were all too much her daughters to believe that. None of us could just let this go. She’d gone through too much for us to shrug, move on, forget our family history. To just say, what will be, will be.
No. We owed it to her to fight back.
I HAD THE SURGERY AS planned, on August 25. Julie came down from Maine the night before with Maddy, and cooked dinner for us, and we stayed up late, talking about things that mattered. Such as: Is Gymboree a racket, or is it worth it? Why does everyone think men are so great when they do something perfectly ordinary, like cooking a meal or taking kids to the park or (amazing) changing a diaper? We didn’t talk about genetic testing or closing doors or what it would feel like, living without the smart little organs that had made my body tick since puberty.
“Don’t worry, Mellie,” she said before we each headed off to bed at midnight. “It’s going to be OK.”
“I know,” I said. And would have hugged her, if we were a family that does much of that.
The next morning, they let Jacques go with me as far as the point where the orderlies roll the gurney off into the OR. He held my hand as we rolled, walking faster to keep up. Last thing, I gave him my glasses to hold.
“Listen,” he said, leaning over close. “I want you alive and well. For a long, long time—till you’re old and cranky, OK? I don’t care about anything else. You hear me?”
I did. I nodded. And off I went, in the direction of whatever came next.
EPILOGUE
FLASH FORWARD TWO YEARS. SACHA and Maddy were in nursery school, Libby was a toddler. Julie had a new baby. Remarkably, she had a boy—the first in our family. They named him Ben. True to her word, she started planning her surgery. Like me, she didn’t waste time.
We were all busy, life moved on in its messy way. So did the world. Researchers found a second gene, BRCA2. Now, when the three of us got together, we added new topics to our ever-changing list: Was Suzuki really the best way to learn piano? Why don’t kids actually play outside on their own anymore? Added to this, we wondered about hormone replacement therapy and the risks of extra estrogen for women with family histories like ours, and soon Sara was forty, I was thirty-eight, Julie, thirty-four, and before we knew it, we were talking about surgery again. Breast surgery this time. A bigger surgery, more extreme.
We still said we didn’t want to get tested, even now that there were two genes to hunt down. But then we got more “new information.” After my first surgery, I tracked down my second cousins in Illinois. Gail’s children, Paul and Jill, roughly our ages.
We barely knew each other—in fact, I had to get their phone numbers from my mother’s second cousin, out in California. But I finally got hold of Jill one afternoon in spring. At first, she had no idea who I was. Then, she was happy to hear from me, very warm.
Yes, she knew all about the gene. She and Paul had both been tested. She was matter-of-fact about it, happy to share the results. She’d tested negative—a huge relief, she told me, especially since she had three kids—but Paul had tested positive. He had the mutation: BRCA1.
So now we had our answer—we’d found our broken gene. This meant if we got tested, the results would be “meaningful.”
Julie and I went back to the Farber together. We met with the top people running genetic studies there. We called Sara and debated. What should we do?
Sara had already scheduled prophylactic mastectomies for that winter. She didn’t want the test now. She didn’t want to risk her HMO pulling their support—there was no way she could swing the surgery (which cost tens of thousands of dollars) without her insurance paying. And honestly, she said, even if she tested negative now, even with this new “new” information, she’d still worry. She’d found a lump the year before, had to endure an awful biopsy, sweating out the results for two of the worst weeks of her life. She didn’t want the test at this point. Later, when Jenny and Rachel were older, maybe. But not now. Surgery—again—but no test.
So we moved ahead, one by one. Second surgeries. Physically, these were much harder. Much more complicated, each requiring weeks off from work and day-to-day life—no driving, no lifting.
Sacha was five when I had breast surgery. Libby, three. I had two operations, ten weeks apart. Jacques and I weren’t sure how much either of the girls could understand at their respective ages, but I gave them an analogy. Sacha had a favorite stuffed toy, a whimsical Humpty Dumpty my mother had given her from the Met. She carried him with her everywhere, flapping one of his legs back and forth, rubbing his fraying arms, until eventually his stuffing came out and Annabel (ingenious) restuffed him and made him a new pair of overalls out of some old jeans.