December 2001
Throughout our Lenox Hill hospital stay, my mother had regularly complained of stomach pain. Danielle and I had assured her this was perfectly normal. Her mother was dying—who wouldn’t have a stomachache?
Exactly two weeks after Harriette’s death, we were back in the hospital. This time it was the NYU emergency room and the patient was my mother. Her stomach was the size of a large melon and the pain had grown so severe she couldn’t stand. She was suffering from nausea and vomiting. We soon learned that her stomach distention was due to ascites—abdominal fluid that accumulates as a response to advanced cancer.
A few days later, my mother underwent emergency laparoscopic surgery. Another waiting room. This time my sister and I were joined by our father. Everything was a blur.
We were told that my mother had stage IIIC ovarian cancer. We knew this wasn’t good news, but aside from that, we didn’t know exactly what it meant. At age fifty-two, my mother had successfully beaten stage II breast cancer. Would this be a harder fight? When my mother was out of recovery, the surgeon stopped by her hospital room and informed us he was able to remove most of the cancer, but not all of it, because it was strewn around her stomach like small “grains of rice.” My mother held on to this image. In the months to come she would tell everyone she was all better except for “a few scattered grains of rice.”
Years later I would order her hospital records. The summary of this single operation was four pages long. What it makes clear is that the cancer was everywhere.
The hospital stay lasted sixteen days. Danielle and I never left our mother’s side. We shared a small cot and slept beside her every night.
Several days post-op, my mother was sitting up in bed, alert, taking stock of her situation. A dark-haired woman, a doctor, stopped by the room holding a medical chart. I can remember her face, her voice, but I now have no idea who she was. My mother drilled her with questions. In response to one, the woman replied, “We still consider your condition curative.”
Still?
My mother jumped all over this. “How many years can I be expected to live?”
The woman hesitated. “About five years,” she replied.
She exited, leaving me, my mother, and Danielle in stunned silence. Five years to live? It was worse than anything we could have imagined.
In fact, she would live less than two.
A FEW WEEKS LATER, still walking around in a daze, I met a woman named Leslie Rosen for coffee, at the insistence of my friend Gillian. Leslie had started a foundation for the prevention of women’s cancer, in honor of her mother, who had died of ovarian cancer a couple of years earlier. She was a font of information on the subject, and Gillian felt it would be helpful for me to talk to her.
Leslie was around my age, and as it happened, the oncologist who was treating my mother had also treated hers.
“He’s the best doctor in the country,” she said.
I wondered how she could speak of the doctor’s talent with such conviction when her mother, his patient, had died.
She asked me a few questions, and I revealed that my mother had suffered from, and beaten, breast cancer six years earlier. Leslie told me that the women’s clinic she’d founded offered a cutting-edge genetic test for a mutation that predisposed women to breast and ovarian cancer. That was the first time I’d heard those two cancers linked.
“Because of your mother’s history, you’re now in the highest-risk category. You’re the perfect candidate for this genetic test.”
She described the test at length, encouraging me to consider it and to talk to a genetic counselor. Leslie was in the same high-risk category, so I asked if she’d taken it. She lowered her eyes and said no. “Why not?” I asked. She said she wanted to enjoy her marriage and finish having kids before accepting the burden of that kind of knowledge.
At the time, I didn’t grasp what Leslie meant about the burden of knowledge. I remember thinking it was odd that she had founded a cancer prevention clinic that boasted an exclusive genetic test for high-risk women, and yet she had not taken the test herself.
I doubted my mother’s cancer was genetic since Harriette had never had cancer, nor had Harriette’s sister or mother. Still, I thought it would be prudent for me to find out for sure, at some point, by taking the test. I was consumed with my mother’s illness; my own health was not a present concern. I had just turned thirty-two. If I turned out to be at high risk, I believed it was something I’d have to worry about when I was around fifty. I stored the knowledge of this gene test away, and did not think of it again for two and a half years.