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A Jewish Girl’s Guide to Genetic Testing (Part Two)

[This is the second in a four-part series published on Fridays.] I visited my mom in the hospital only once after she had her hysterectomy. I was 12, and the only thing I remember is being jealous that she could watch television in bed all day. The game shows! The soaps! Jello pudding! I reached for the remote immediately. She snapped at me to turn the TV off.

That grumpiness followed her home to our West Los Angeles condo. I knew that a hysterectomy meant removing the uterus and ovaries, but I didn’t realize that it would throw her hormones out of whack. And I didn’t understand why she had the operation. She was 35 and in good health. To me, she had inexplicably decided to have surgery for no real reason, and the resulting craziness was her fault. When I think back now, I realize she wasn’t crazier, just unhappy.

My mother had her ovaries removed because she was sure she had the cancer curse. Long after her surgery, but shortly after scientists discovered the mutation that caused ovarian cancer, my mother underwent genetic testing to find out for sure. The results were positive.

For Jews, it turns out, fearing cancer isn’t just a neurosis. A disproportionate number of Jewish women have the BRCA1 and BRCA2 mutation: Where the odds in the general population are 1 in 450, for Jewish women, the likelihood that they have a mutation is 1 in 40. Geneticists attribute this to the founder effect, a theory suggesting that genes in certain isolated communities-Iceland and Finland are others-can be traced back to a small number of “founders” who marry only within the group. Intermarriage normally gets rid of unhealthy genetic mutations, since only the children who inherit the healthy genes survive. When the founders only marry each other, though, those unhealthy genes stick around, For Ashkenazi Jews, the founders were a few thousand people who lived in Eastern Europe 500 years ago. My family is Sephardic, but we most likely wound up with the cancer curse by a similar process.

After the surgery, my mom tried every conceivable dose of estrogen in every conceivable fashion. The pills didn’t work. Neither did the time-release patch. Finally her doctor prescribed Estrogel, which came in a long metal tube that she measured out on a spatula and rubbed on her thighs and arms, near major arteries. She kept dozens of tubes in a drawer in the bathroom that she instructed me never to touch. And with all the grief it caused her, I didn’t dare. To top it off, she couldn’t get dressed until the gel was completely dry, so she would walk around the house stark naked for a half-hour every night, insulting my strict 13-year-old sense of decorum.

I hated everything about my mother’s hysterectomy and subsequent estrogen binge, and I wasn’t shy about letting her know. That opinion only solidified as I grew older and more annoyingly well-read. Once in high school I gave her a newspaper article that counseled against preventative hysterectomies.

“I win,” I remember thinking, “Science and rationality triumph over superstition and crazy.”

She took one look at the headline and gave it back to me. “You don’t know what you’re talking about,” she said. In a rare moment of tact, I let it go.

But I wasn’t the only one who could push buttons. As I got older, my mother extended her sense of cancer doom to me. Soon she was handing me articles: on foods that prevent cancer, vitamins that prevent cancer, even exercises that prevent cancer. If it prevented cancer, my mother knew about it and mailed it to me, or slipped it into conversation with about as much subtlety as a brick.

The word itself signaled a fight. When my mother mentioned something about “our” cancer, as if it was some private, fun trait we shared, I’d pick angrily at my cuticles. I wanted out of her neurosis. I moved to New York City for college and stayed long after graduating.

Although she’d never sat me down and told me our family’s cancer history, it felt like something I always knew. We mentioned ovarian cancer-and our relatives who had it-so casually that it seemed ordinary. Didn’t everyone’s grandmother, great-grandmother and great-aunt die of ovarian cancer?

It was only a few months ago, after I moved back to Los Angeles, that my mother told me the full story of her mother Soli’s sickness. I took her out to a belated birthday brunch in West Los Angeles. It was an unremarkable sunny summer day, and I had planned to ask her some questions about our family for this piece. I needed straightforward details-dates, names. Instead, I found myself moved in a way I’d never been before. For the first time, I found cancer scary and unfair and strange-the way most people see it-instead of manipulative and irritating.

Soli, my mother’s mother, died at 49 in Istanbul of ovarian cancer while, in the very same hospital, her own mother was dying of the same disease. A year later, Soli’s sister, Sibelle, who had taken care of my mother during Soli’s illness, was diagnosed-again with ovarian cancer. It wasn’t six months before she died.

Soli lived a year after she was diagnosed, which even in the United States today is a very long time. In 1969 Turkey it was a miracle. A crappy kind of miracle. Ovaries are so small that once a tumor is big enough to be detected, it’s almost always too late for any treatments to work. During the final three months, Soli had no veins left in her arms through which to feed the IV. The doctors used a vein in her foot, then one in her forehead. “Even when fluid filled her lungs, they didn’t just let her die,” my mother said to me, emotionless. “Then they cut a hole in her back to pump air through.”

For the first time I imagined my mother at 18, a time when she still needed a mom, watching a nurse tapping out every vein in her mother’s body. I spent years in therapy trying to understand my own childhood to decipher all the mundanely bad stuff in my own life: relationships, commitment issues. But I could not come near understanding what it would have been like at 18 to change your mother’s colostomy bags. I was bawling.

I’m not sure why that particular brunch unlocked a well of empathy inside me. Maybe it was because I was older, but I suspect the real reason was that I was now knew what the test really meant. I had begun to learn the awful truth of the BRCA mutations from people who were not related to me. I learned my mother wasn’t the only person to have healthy organs removed to prevent cancer, and that in fact many doctors recommended such procedures, even my surgeon friend from college. For once, I stopped approaching her emotions with suspicion and started doing so with love. “Did you want her to die?” I sniffed. “Were you conflicted?”

“Hmmm. No. I don’t think so. I can’t really remember what I wanted anymore,” she said. “But I know that when Sibelle died two years later I thought God hated me.”

Next week: The genetic mutation wager, or, How I learned to start worrying and fear for my life.

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For more information, check out Jewcy’s ever-evolving genetic testing wiki, where you can find-and post-links to resources, support groups, and more.

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