September 2004
I hung up with the doctor from the cancer medical lab, my head spinning from the news of my “genetic mutation,” and ran across the courtyard to the Gilmore Girls writers’ room, where the rest of the staff had already gathered. This was not a simple task, as I was wearing high heels. I had inherited my mother’s vast designer shoe collection because my sister’s foot was a size too big. When my mother had been alive, I’d criticized her devotion to high fashion, my reproach extending to her sixty-some pairs of Manolos, Jimmy Choos, and Chanel stilettos. As her illness progressed and she became increasingly present as a mother, my judgments against the material things she loved were silenced. Now, every item that belonged to my mom was endowed with emotion, special because it had been hers. I’d begun wearing her heels to work. As I traipsed up the stairs to join the other writers, I realized I was literally and metaphorically walking in my mother’s shoes.
I did my best to maintain my composure in the writers’ room. The doctor’s statistics whizzed around in my head while I made up pitches on the fly: Lorelai spends her first night at Luke’s and is caught in her underwear by Kirk …? Caught shimmying down the trellis by Miss Patty and her band of child ballerinas …?
On our break, I pulled Rebecca aside and told her, laughing and crying in disbelief, that I’d tested positive for the breast cancer gene. She burst into tears—only after which she asked, “What does that mean exactly?” I replied that a doctor with the world’s worst bedside manner had just spewed statistics at me, but I confessed that I didn’t really know what it meant, either.
There are proper channels to go through if one elects to undergo genetic testing. There are cancer prevention centers staffed with genetic counselors, armed with pamphlets, and offering spots in support groups. The sensible choice would have been to go to one of them for counseling and education before taking the test, but I chose not to. I opted to take the test at a lab where they had me sign a release form and then drew my blood, no questions asked. I was so convinced I would test negative that I didn’t feel I had to bother with any of those steps.
After my conversation with Leslie Rosen several years earlier, when I’d first heard about the BRCA test, I made a mental note to take it at some point. I felt no urgency to do so—not one doctor had ever suggested I take it. My mother had never been tested; she died without knowing that such a test existed. There was no prior history of cancer in our family. My mom had believed her cancer was due to twenty-five years of a high-stress career in the garment center, and this explanation rang true to me. I knew that only one in ten cases of breast cancer was genetic. I also knew that if my mother had carried the mutation—which I felt was highly unlikely—I’d only have a 50 percent chance of inheriting it from her. I was absolutely certain I did not have the breast cancer gene. I wanted to take the test simply for the peace of mind of having a clean bill of health in writing. I likened it to taking an HIV test every ten years or so—of course I knew I didn’t have AIDS, but it was always comforting to see it in black and white. In spite of the fact that my mother had cancer twice, I did not feel the disease would ever strike me. I had witnessed the horror of cancer up close. I knew my mother had been shocked each time she’d been seized by cancer. And yet, strangely, I still felt invincible.
EIGHT WEEKS after my mother’s death, my sister and I moved back into her house. It was the end of November, and Southampton was cold and quiet. The summer crowds had long since vacated; only the locals and the diehards who made weekend trips year-round remained. The flowering trees along her driveway were now bare. Danielle and I wandered the halls of her beloved house like ghosts. It didn’t feel real that we were there and she was not.
Since she had every intention of beating her cancer, my mother hadn’t wrapped up her affairs. Her Southampton store remained full of antique dishes, crystal, and silver. Danielle and I decided the most practical solution would be to have a going-out-of-business sale and work in the shop ourselves. Bruce and our father helped. I had never understood the big fuss over china. “They’re just dishes,” I would say. It took less than a week of handling the delicate items my mother had hand-picked on shopping sprees across the country and in Europe for me to recognize they were treasures. In no time, I found myself hoarding things. “These are rare Limoges—we can’t just give them away!” We kept a photo of Mom in a silver frame on the counter next to a candle that was always lit. Her customers poured in, asking, “Where’s Stephanie?” All were shocked at the news; many wept. My mother had kept her illness a secret. “She was so young,” they would say, “so vibrant.” Each customer had a personal story or memory about her to share. She’d given a silver rattle to one woman’s grandchild; she’d comforted another woman through her divorce. All admired her exquisite taste. All described her happily fluttering around the shop like a hummingbird. Working among her precious things, sitting behind her counter, and listening to her customers’ stories was a poignant way for me and Danielle to inhabit her life one last time.
We worked in the store all winter, finally closing up shop in early March. In May, I moved back to California to resume my own life. I got a job writing for Gilmore Girls, moved into a new apartment, and began catching up on mundane tasks I’d been long neglecting, like renewing my license at the DMV and getting my teeth cleaned. It was in that casual vein that I added taking the BRCA test to my list. I called my cousin, a doctor, and asked him to set up an appointment for me at a cancer lab. When nearly two months had passed and I still hadn’t received the results, I was annoyed but considered it a good sign. Doctors call right away with bad news and tend not to bother when everything’s fine.
Now, a year after my mother’s death, Rebecca and I stood in the patch of grass behind the Gilmore Girls writers’ building. She hugged me and held my hand, and we cried for a few minutes like children who knew something scary had happened but couldn’t comprehend quite what. I kept repeating how shocked I was that I had tested positive. I’d never entertained it as a possibility. Rebecca tucked her long blond hair behind her ears, grabbed both my hands, and gazed at me intently with watery blue eyes. “Don’t worry about this,” she said with maternal compassion. “We’ll learn more about it, we’ll figure it out together. I will be right by your side.” I knew she would, and it made me feel a little better. “Now, until we get further information, I think you should try and let it go.”
And that’s just what I did.
We kept our reservations that night at the Edendale, a hip restaurant in Los Feliz. After an hour of hanging out with friends and drinking cheap red wine, I’d forgotten all about the BRCA mutation. Over the next week, I casually informed a handful of my closest friends: “It’s primarily an Ashkenazi Jewish gene—as if the Jews didn’t already have enough problems ….” I had a very hazy, limited understanding of what the breast cancer gene was, and I did not seek out further information. I decided not to worry about it. I rationalized that since my mother got breast cancer when she was fifty-two and I was only thirty-four, I wouldn’t need to think about it for at least another ten years. When people expressed concern, I pretended I knew what I was talking about and said, “It’s no big deal—all it means is that I’ll go for extra screening.” After three years of tragedy and sadness, I had only recently been laughing again, enjoying dinners with friends, movies, hikes through the Hollywood Hills. I relished this return to freedom, so I pulled a Scarlett O’Hara: “I can’t think about this right now. I’ll think about it tomorrow.”
The one exception to my willful oblivion was the day the lab results arrived in the mail. I had asked the doctor over the phone to send me a copy. It was a single sheet of paper headed by a futuristic logo beneath which read MYRIAD. I would later learn that Myriad Labs in Salt Lake City owns the patent for the BRCA test and thus processes all BRCA results, regardless of where in the country you give blood. To the left of the logo was stamped CONFIDENTIAL. This added to the outlaw feeling of the test. The fact that advances in biotechnology now made it possible to predict future illness from a blood sample already made me feel like I was living in a chilly, genetically predestined future. In the center of the report, POSITIVE FOR A DELETERIOUS MUTATION was printed in bold letters and framed by a rectangular box for emphasis. The paragraph underneath contained the grim statistics the doctor had told me over the phone, but in greater detail: “Deleterious mutations in BRCA1 may confer as much as an 87% risk of breast cancer and a 44% risk of ovarian cancer by age 70 in women. Mutations in BRCA1 have been reported to confer a 20% risk of a second breast cancer within five years of the first as well as a ten-fold increase in the risk of subsequent ovarian cancer.”
I felt an ominous chill run through me. I was grateful that my mother had never known anything about this test. She had not had to suffer from the knowledge that she had passed this horrible genetic predilection on to me.
I read the report once, tucked it back into the envelope, put it in a drawer.
Then I blocked it out for three months.