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 seen 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.
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.”