- Gila Pfeffer is a humor writer who divides her time between New York and London.
- The following is an adapted excerpt from his memoir, “Nearly Departed: Adventures in Loss, Cancer, and Other Inconveniences.”
- It chronicles her journey as a pre-survivor and cancer survivor, determined to reverse the cycle of death in her family.
Eleven years after my mother died in 1994, when I was 31, I learned that a simple blood test could confirm whether I carried a BRCA gene mutation. Named after the first two letters of “breast” and “cancer,” a positive result would put my chances of developing breast cancer at 87 percent.
As a bonus, BRCA carriers have a 66% chance of developing ovarian cancer. That seems pretty high, unless you consider my family history of cancer, which increases my risk even more. A blood test would be nothing more than a formality, a scientific breakthrough that would tell me what I knew instinctively. I would be 100% BRCA-positive.
Testing was not yet common practice
It was 2005, and genetic testing was far from commonplace. The famed Human Genome Project, an international effort to generate the first complete sequence of the human genome, had just achieved its goal of producing a sequence that could decode 92 percent of human DNA.
Consumer genetic testing was gaining traction, and while we were still a long way from at-home saliva tests like those offered by 23andMe or Ancestry.com, this breakthrough could tell me exactly what my body was up against. After a decade of playing defense, I was finally going to have a chance to go on the offense. I could see a path to reversing my family’s health trajectory.
Pregnant with my third child and tired of seeing everyone in my family die too young, my self-preservation instincts kicked in. I was already thinking about my own mortality more than the average thirty-something, but my obsession didn’t stop there. I also had my younger sisters and my granddaughter to worry about. Since my sisters were still children when our mother died, the main impact on them was that they were orphaned.
For me, as an adult, it was a wake-up call to raise awareness about breast cancer. As the matriarch of the family, I felt responsible to take preventative measures, not only for my own sake, but also to set a good example for my siblings.
At the same time, my friend underwent a prophylactic double mastectomy
Shortly after hearing about genetic testing, my friend Stephanie told me she was going to have a procedure called a prophylactic double mastectomy. That’s a lot of syllables and it boils down to intentionally removing healthy breast tissue before cancer can take hold. It was the first time I’d heard of it, and my immediate reaction was, “I want that.”
Reconstruction is usually done at the same time, unless the woman chooses to “go flat.” Unlike the modified radical mastectomy my mother eventually underwent, the prophylactic version leaves the outer skin and sometimes the nipple and areola intact. It would be years before Angelina Jolie would make “double prophylactic mastectomy” a household term with an op-ed in The New York Times. about his choice to undergo the same procedure.
Stephanie and I met when I moved to Highland Park a few years earlier. Our children were about the same age, and we were both stay-at-home moms and active volunteers at the school. We also had a family history of breast cancer in common, but her mother, who had been diagnosed at age 20, had caught it early and survived. By the time Stephanie told me about her impending mastectomy, she had already tested positive for the BRCA1 gene.
I went to visit Stephanie while she was recovering at home. My intention was to fulfill the mitzvah (good deed) of Bikur Cholim (visiting the sick), but it was also a reconnaissance mission. Aside from a dental implant, I had never had surgery before and I came armed with a million questions. How long did the surgery take? Did she have any reaction to the anesthesia? Was it painful and where? Did her new breasts look natural? And most importantly, on a scale of 1 to 10, how relieved was she now that breast cancer was no longer a threat?
I knocked on the door and entered, announcing myself.
“Hello! You have company!” I sang as I crossed the entrance hall. His mother greeted me and showed me to the living room.
“How is she?” I asked silently as I unzipped my coat. She gave me a double thumbs-up, touched her palms, and looked up at the sky.
“Thank God,” she said softly.
“So?” I asked Stephanie as I settled pregnantly onto the couch, careful not to disturb the intricate network of tubes that were coming out of her at every angle. All my questions rolled into one: SO??
“I’m fine! The painkillers are working and my back hurts a lot, but mostly I feel relieved. I’m telling you, Gi, it’s like a weight has been lifted off me. Don’t worry anymore. I’m free!” She beamed, all dimples and sparkling eyes.
She showed me her post-operative sites, like a guide preparing a tourist for a hike over rocky terrain. Her chest was wrapped in white gauze several times, and clear plastic blisters the size of lemons hung from tubes on either side of her rib cage. They were one-third full of a viscous, rust-colored fluid.
“These are surgical drains,” she explains, flicking each one with her finger. “They collect excess blood and other fluids to keep them from building up in my body. I have to empty them several times a day and monitor the amount coming out to make sure there’s less each time.”
She showed me a small notebook with a list of dates and measurements in descending quantities. “It’s a little gross, but they only stay there for a few days, until they stop filling up with gunk.”
“More like a plot “That’s disgusting,” I said, backing away slightly, making Stephanie laugh. My kids had peed on me and I’d caught their vomit with my bare hands without batting an eyelid, but the medical blood made my insides churn.
Among the various reconstruction options, she chose silicone implants with an overlay of muscle taken from her upper back to give her “foobs” (fake breasts) a more natural look.
“All I have to do is sit on my couch propped up on these pillows, do some physical therapy to get my arms back in range of motion, and I’ll be good as new,” she reassured me. “Better, even.”
I asked for the BRCA test and my doctor agreed
At my next prenatal checkup, I asked my doctor to order a BRCA test. The OB/GYN office had started seeing an increase in requests for this type of blood test. She agreed that for me, it was a no-brainer.
“I’ll make sure to have the test kit here for your next exam,” she said. “But are you sure you want to do this while you’re pregnant?” She worried about the psychological toll of finding out I was a carrier at a time when I was already quite hormonal.
My doctor was cautious but never alarmist. It was hard to tell how old she was. Her straight gray hair was always tied back in a messy ponytail, and she favored socks with Birkenstocks and rimless glasses, which probably added years to her real age. What mattered to me was that she had been in the world of expectant mothers for a long time.
“Absolutely,” I answered without reservation. Regardless of the test results, I was already planning my next preventative measures.
“Have you decided what to do if you find out you’re BRCA positive?” she asked, rolling her little stool over to her desk to jot down some notes in my chart.
“Anyway, I’m going to get rid of it,” I announced, grabbing a swollen breast in each hand. “No doubt about it. I don’t want that threat hanging over me anymore.”
Extract of Almost Gone: Adventures in Loss, Cancer, and Other Discomforts by Gila Pfeffer. Copyright 2024, Gila Pfeffer. Published by The Experiment.