by Amy Boesky
“Now, your mother—” Dr. Muto began.
Jacques put his hand on my leg. I couldn’t go there right now, and Jacques knew it.
This was a week where I hadn’t been able to get through to her. Not even once.
“That’s a different situation, of course,” Dr. Muto said. His eye was on the pad of paper—he couldn’t see my face. Then he looked up at me. “Breast cancer,” he said, shaking his head sadly. “One out of eight women is the latest statistic.” He reminded me that while there was some suggestion that having your ovaries removed reduced the overall chance of breast cancer, it didn’t (of course) remove the risk.
And now that we were talking about remaining risk, Dr. Muto said he owed it to me to point out that high-risk ovarian patients continued to be at risk for extra-ovarian cancer. Even after surgery ovarian cancer can still develop in the peritoneum, the lining of the abdomen. There is something called EOPPC—extra-ovarian primary peritoneal cancer—that women can still get, even with their ovaries gone. Dr. Muto himself (sadly) had a patient who’d gotten that, several years after having her ovaries removed. And she had died.
I cleared my throat. I understood nobody was promising me anything rosy. “But the chances go way down, right?” I asked. I was worried we were losing focus. I wanted this meeting to strengthen Jacques’s support for the surgery, not to give him the sense it would only be partly effective.
Dr. Muto nodded. “Dramatically reduced.” Removing my ovaries would bring my chance of ovarian cancer way down. Still there, yes—but close to nothing.
That was all I needed to hear. I didn’t expect guarantees. I couldn’t do anything about falling meteors. But I had a responsibility—to Jacques, to Sacha, to the new baby, to my whole family, to myself—to take care of what I could. Bringing my risk down to almost nothing—that seemed like a miracle to me. If I had to remove a limb to get there, I’d have gladly done it. A two-hour surgery, removing two tiny organs I was done with?
The baby kicked.
OK. Almost done with, I amended.
This, as far as I was concerned, wasn’t a hard choice to make. It was what Jacques calls a “no brainer.”
“I’m ready,” I said, pushing the graph back to him. “Or at least I will be, as soon as the baby comes.”
“Let’s talk in the spring,” Dr. Muto said, shaking hands all around. He cleared his throat, looking at me. “Late spring, early summer,” he revised. “Meanwhile, try to take care,” he added gently.
I read a million things into that. There was so little, it seemed, that I could really take care of. I couldn’t take care of my mother. I couldn’t fix what was happening to her, what my father was going through. I couldn’t stop myself from grieving. I couldn’t protect Sacha from how sad I was, however hard I tried.
But I could plan the surgery. On the way out, I stopped and made a follow-up appointment for April.
WHEN WE WALKED OUT OF the Farber, it was snowing heavily—snow was already accumulating on the sidewalks. Big, soft flakes. We didn’t know it yet, but this was the first of sixteen or seventeen serious storms between now and spring.
That’s what I remember most when I think about that winter. Snow. Endless, constant snow, as if the whole world were trying to erase itself. A white blur, an absence.
We didn’t celebrate Christmas that year. No tree, no gifts. In the last days of December, the year running out like so many grains of sand, my mother died. Upstairs in the Hilton, my father at her side. Sara, Julie, and I had just been there to visit, and we were all planning to come back again after New Year’s, but this time it wasn’t up to us to make the plans.
IT SNOWED CONSTANTLY ALL THAT winter. Twenty-two inches one storm. Eighteen, another. Snow covered bushes and cars, sat on sills, lay heaped in mountains at the curbs where the plows left it. Turned gray, then black; froze; seemed part of an eternal frozen landscape. Sidewalks were impassable. In the afternoons I cut swaths through the snow with a shovel, panting, and as I shoveled, more fell.
I missed her all the time. Sometimes, trying to move the wet, heavy snow, I cried so hard I thought I’d make myself sick. There’s an emptiness words can’t describe and that for me was the emptiness of three and four o’clock every afternoon, when I would look at the phone, and then away. When I would imagine her voice reaching for me. For all of us.
Mellie . . .
Sometimes, napping—being pregnant made me so tired this time—I would wake to my alarm and think it was the phone, and for a minute or two, before I was fully awake, I’d swear I could hear her voice. Bright, sparkly, lucid, the way it used to sound, before the morphine and the pain and the constant sleeping. Like she had something exciting or funny or maddening to say, and she couldn’t wait to tell me.
The things I wanted to tell her piled up, like the snow.
BY LATE JANUARY, I WAS hugely pregnant again—dazed, exhausted, heartsick, trying to take care of Sacha, Jacques, myself. Instead of teaching second semester, I did administrative work for the department through February, then took time off. It wasn’t great timing—I’d only taught for one semester, and here I was, already asking to be an exception. But I didn’t have much choice. The baby was due smack in the middle of the semester. As I was coming to see, life makes its own calendar, and if you’re wise, that’s the one you follow.
SACHA WAS SAYING NEW WORDS all the time now. Slipper-lee. Eenie-meenie. Wow. One night, looking at her alphabet book in the bath, she ran her wet finger back and forth across my father’s photograph.
“Bop-pa! ” she exclaimed, eyes shining.
I stared at her. “Sach,” I said, trying to rein my excitement in. I turned the page, back to my mother’s picture. Taken three or four years earlier, over the Fourth. Her eyes sparkling. “Who’s this, sweetie? Do you know who this is? Can you say?”
“Boppa,” she said again faintly, losing interest.
Words for her came from the here-and-now. She was like a tourist, picking up nouns for what was most essential. Cracker. Mittens. Snow. She knew my father: He came regularly to see her. To see all of us.
“It energizes me, being with you,” he said one night, looking past me out the dining room window.
“He can’t stand being at Lakewood without her,” Julie said sadly, the one time we talked about it. “She was right to want to sell the house. It’s like—what were those boats she used to teach her students about? The ones the Egyptians used? The house is like that. Filled with her stuff. It breaks his heart.”
Even now, all these years later, Sacha calls him Boppa. All the grandchildren do. Bomma—
Sacha never said it—not naturally. It never had meaning for her. Years later, in history papers or school reports, my mother got referred to as “my grandmother.” Distant, historical. “Bomma” was Jenny and Rachel’s word, washed clean of meaning for the rest of the grandchildren, like a Petoskey stone. You had to hold it underwater to see the lines: Otherwise it was bleached and pale, like every other stone on the beach.
JANUARY, FEBRUARY. I REMEMBER SHOVELING . I remember coming inside, tapping the shovel so the snow slid off, Bacchus charging toward me.
Annabel would stand at the window, holding Sacha up to watch my progress as I worked, and from time to time they’d tap on the glass, both of them waving and smiling, but I couldn’t look back.
Which child felt it more, the grief I lived in? Sacha, watching me, trailing me, picking nervously at the hemline of my old, worn Laura Ashley jumper, trying out phrases. “Momma—better now? Momma ohh-kay?” Or this new baby, curling and turning in me, with only my sorrow for succor? What did each inherit?
Would we ever get to that final stage in Kübler-Ross’s hopeful diagram—acceptance?
My mother used to love Dylan Thomas’s villanelle, “Do Not Go Gentle.” She didn’t believe in acceptance (unless it was an acceptance from Stanford for one of her “bubbies”). If rage were a season, my mother would have wanted us to stay in it as long as we could.
And we did. I mourned and raged. I shoveled (endlessly) and the paths filled in around me.
Elisabeth was born March 9, six days early. Healthy, beautiful, with a smile so sweet it tugged at me. At all of us. She seemed to come into the world smiling. I know they say those aren’t real smiles—they’re reflexes or indigestion—but with Elisabeth, who we nicknamed Libby almost immediately, honest to God, I swear they were real.
Jacques brought Sacha when it was time for Libby and me to leave the hospital. We wanted Sacha there with us when we left, so all four of us could start our new life together. It was raining—one of those days in March when winter gives way to spring—and already dark out by the time we got everything packed up. We set the infant seat up next to Sacha’s car seat, experts now, and as we drove west on Storrow Drive, me in the back with the two girls, Jacques in the front, windshield wipers humming, I had an uncanny sense of things falling into place.
I HADN’T FORGOTTEN MY PROMISE. A few nights after we got home from the hospital, I was nursing Libby in the living room, watching the shadows, noticing it was staying light a little longer now. Mid-March. Jacques was dancing with Sacha to one of the CDs she made us play over and over again that winter—Reggae for Kids. Calypso beat. The two of them, feet tapping, spinning. Laughing. How long had it been since I’d heard laughter? I could see their shadows crossing on the wall. I looked from one to the other and felt as if something in me were thawing.
“I think I’m ready for the surgery,” I told Jacques. “I want to do what we talked about, and have it this summer.”
I was surprised by his reaction. After all, we’d gone together to see Dr. Muto back in December. I thought we were on the same page about all of this. But if Libby’s birth sealed my determination to go forward, it had a different effect on Jacques. Maybe it was the reminder of how joyful it is, bringing a new life into the world.
Jacques didn’t think we should rush.
“You’ve been through a lot,” he reminded me. “And Libby is brand-new. Give all of this time—let yourself be for a while. There’s no urgency.”
No urgency? I was going to be thirty-four in less than two months. I had two babies to take care of now. They needed me. There was plenty of urgency.
Jacques didn’t understand. He wasn’t trying to be difficult. He just couldn’t see the point of rushing. To some extent, we were back in familiar territory—me, with my desire to plan and take care of things; Jacques, who wanted to take his time, to be certain this decision was right. But now, the stakes were higher. Surgery was irreversible, and it would have important consequences for us both.
I called Julie to ask her advice.
“Be patient,” Julie advised me. “He may just need some time to catch up with you.”
This was the same old mantra—I didn’t have time. At least, I didn’t feel like I did. But I knew Jacques didn’t understand.
These days, the world for me was divided in two: people who had lost a parent (and understood) and people who hadn’t. Much as I loved Jacques, he was still in the other camp. His father was alive and well at eighty, his mother, amazingly fit and healthy at seventy-four. It changed the way he saw things. He felt like he had nothing but time. And by extension, like we had nothing but time.
I, on the other hand, felt like I had to act now.
For days, we argued. “What if we wanted to have a third child?” he asked one night, out of the blue.
“What if I wanted to be an astronaut?” I shot back. Actually, of all the untried experiences I might regret one day, being an astronaut is not high on my list. I was just trying to give him an example. My point was, there were lots of things we might want to do or try, if we had world enough and time.
But we didn’t.
“It’s not that I don’t think you should have the surgery,” Jacques said. “I just think we need to slow down. I don’t see the rush.”
That was how things stood with us for a while. We were at a standstill.
Then one night, lying in bed together, he put his hand over mine. “You really want to do this, don’t you,” he said.
I nodded. Then, realizing he couldn’t see me, said yes. My voice small in the dark room.
“Listen,” he said, rolling over and cupping my face with his hand. “I don’t see this the way you do. But you’re the one who just lost her mother. You grew up with this fear hanging over you. If you need to have this operation to move on and live your life, I’m behind you.”
I gulped, grateful and heartbroken at the same time. I hugged him, tried to assure him this was the right thing.
The last roadblock was gone. I was determined to move ahead.
I called Dr. Muto’s office to confirm our appointment. April 12. My plan was to schedule the surgery for late summer. Maybe August.
OK: I cried sometimes when I thought about the operation. But that was more relief than regret, I told myself. I was ready.
THEN—OUT OF THE BLUE , IN late March—the letter came from Creighton. Sara, Julie, and I each got a copy. And everything we knew—everything we’d always thought about everything—suddenly changed.
HBOC. Hereditary Breast and Ovarian Cancer.
Fear, Edgar Allan Poe once wrote, is the strongest emotion. He was right. When I read that letter, fear ran through me, like a wick.
HBOC. So it was the same thing—what my mother had. What Sylvia and Gail and Pody had.
Was that why my mother’s tumor had been so aggressive, why nothing had worked? Nonestrogen receptive, my father had told us. A rare cell type, Dr. Brenner had said. Hereditary breast cancers, according to the letter from Creighton, tend to hit women young, and are often more aggressive and harder to treat than other cancers.
She’d done everything she could—everything known to us—but she’d only dealt with half the risk. None of us had any idea. Not even my father, for all his vigilance.
We talked, disbelieving—Sara and I, Julie and I, Julie and Sara. We all talked to my father, who got a copy of the letter, too. What are you saying? You mean what she had was the same thing?
Same thing, different part of the body.
The sharpshooter, after all. Not a different villain.
“Well,” Julie said, trying to understand the magnitude of this. “It isn’t exactly the same thing. It’s a different cancer. It’s just caused by the same mutation.”
I hated the word mutation. It reminded me of spaceships, aliens.
It was hard to turn all of this around so quickly. After almost thirty-four years of thinking one way, suddenly everything was different. Yes, we were a high-risk cancer family. But it wasn’t ovarian cancer. Or not just ovarian cancer.
And, to make everything even more complicated, now there was a test. Not a hypothetical, maybe-one-day test, but a real, actual test. This was nonfiction. The letter from Creighton told us where to go for genetic counseling. Dana-Farber, where my own doctors were, was right there on the list.
“One step at a time,” my father said, though I could already hear the urgency in his voice. “You’ll go see your doctors, get advice—”
What about my appointment with Dr. Muto in April? What about August? Should I still go ahead with surgery? Or should I get the test first?
“I don’t like the idea of taking this test,” Julie said slowly. “I don’t know why, but it makes me . . .” She hesitated. “I don’t know. I just think we need to think it through really carefully. We need to think through all the consequences.”
Sara and I agreed.
What didn’t we like about it? Was it that the test was so definitive? That it might be divisive? I don’t think we knew yet. We were all confused, trying to figure this out. “New information,” my father called it. That was an understatement.
BRCA1 started to hit the media. The New York Times ran a story on the “breast cancer gene,” and people started talking about it. Talk shows, magazines.
Every story propelled my father back to the phones. Had we heard—? Had we see
n the story—? What were our doctors saying? What were we going to do?
I didn’t know what to tell him. Truthfully, I didn’t want to talk about it—especially not with him. Being pregnant and breastfeeding—especially twice in a row, relatively close together—makes your body weirdly public. Complete strangers feel like they can come up to you and pat you on the womb and comment on how you’re “carrying.” Low, high, boy, girl—it’s all up for discussion. People you don’t know see you nursing and start giving you advice about your nipples. I suppose some people get used to that. But I’ve always been private about my body. I’m one of those people who keeps her towel on at the gym. Even when I was young, at overnight camp, I used to get dressed with my back to everyone else, trying to wriggle into my bra before anyone could see anything. Julie and I had perfected the art of changing on the beach in Charlevoix—snaking your underpants down through your bikini bottom. Using your towel as a tent.
I didn’t want to talk to my father about my ovaries or my breasts.
“I’m seeing Dr. Muto in a few weeks,” I told him, buying myself time. “Jacques and I will ask him about HBOC.”
Silence on his end.
“Don’t worry, Dad,” I said, softening a little. He’d been through hell. And I didn’t blame him for worrying. Now that I had children, I could empathize. What was it Francis Bacon said—having children is like giving hostages to fortune? That’s what we were, all of us. Fortune’s hostages. But when you’re the parent, you can’t help it. You want to get in there and fight.
I was lucky to have Sara and Julie to agonize with. We were our own built-in support group.
I thought of all those circles in the diagrams from Creighton. It was like someone had just taken a dark pen and connected the dots. Solved the crime.
The sharpshooter, circling. Eye to the lens. Only now it turned out there was a pair of them. If you sneaked past one, the other was still out there hunting.