Editorial notebook: Living with the risk of cancer in a family besieged by the disease
Growing up in my family, cancer and talk of it was everywhere.
My cherished Grandma Edra, one of 14 children raised on a tobacco farm in North Carolina, saw a brother die of leukemia in childhood. A sister died of breast cancer, then another. Another brother would die from prostate cancer. A cancer diagnosis for yet another brother led to suicide. A third sister survived breast cancer, only to have lung cancer come for her.
And my grandmother, a small-town beauty queen who told ghost stories in the cemetery behind the 18th century farmhouse she restored herself, took her last breath when she was 59 and I was 17. Lung cancer ravaged her body, spread to her brain and stole her from us.
My parents and aunts and uncles always speculated that my grandmother and the other Weaver kids were condemned to their fates from family genes mutated by playing in the fields and ingesting the chemicals used to treat the tobacco crop. These unscientific theories and cancer conversations were as much a part of my grandmother’s legacy as the recipe she passed down for chicken pot pie and the lesson that material wealth was an unnecessary luxury when you have ingenuity.
I knew in my bones that cancer was coming for more of us. I used to wake up with swollen eyes and a tear-soaked pillow from a recurring dream in which my dad, one of Grandma Edra’s four children, dies from the disease. But it took my dad’s sister Cora instead. She was 38 when she was diagnosed with breast cancer and 43 when it came back and killed her in 2005, leaving me the title of oldest remaining female in dad’s line. I was barely out of college.
Aunt Cora never let anyone in our family enter a room without throwing her arms into the air and declaring that she loved them. I inherited her red hair, toothy smile and a laugh that comes at least 30 seconds after everyone else has already gotten the joke.
I was terrified I had inherited more. So, when I turned 38 last year, I talked to my doctor. Immediately, I was swept up in a whirlwind of testing: mammograms, ultrasounds, MRIs and painful biopsies of my breasts. I was in anguish waiting for each result, thinking of all of the things cancer could take from me. I’m a new mom with a toddler daughter. What if I didn’t live to see her go to kindergarten?
I tested negative for all known cancer genomes — including those on the BRCA1and 2 genes, which increase the risk for breast and ovarian cancers in younger women. But so had my dad’s cousin who died of breast cancer in 2016, when she was 45.
I talked to my surgeon about a preventative double mastectomy. And I cried at the thought that the fullest part of my body could one day be my belly. I struggle with my weight, and being voluptuous has always made me feel more confident about my body. Reconstructive surgery would be an option, of course, but when my aunt’s cancer came back, it was hiding behind the implant from her mastectomy. Her doctor thought she was sick from walking pneumonia. She was dead in a month.
My doctor said we should continue screenings and appointments and revisit more drastic measures if it becomes necessary later on.
I was prescribed Tamoxifen after one of my biopsies came back “atypical.” The drug blocks estrogen receptors in the breast, as the hormone is a fuel for some cancers. The drug also mimics menopause symptoms. For me, that brought on hot flashes and a change in sexuality my husband and I have been struggling to cope with.
Then, suddenly, along with all the worry and side effects, I had thousands of dollars in medical bills. My insurance company had decided my tests were no longer considered preventative but diagnostic.
So here I am. I have access to scientific and technological advancements many in my family never benefited from. I live in a city with world-class medical care, and I know how to advocate for my own health care, thanks to my mother, a registered nurse.
But I’m still afraid, and like the rest of my family, I don’t have any guarantees.
I also don’t have cancer — today.
I’ll keep fighting in the hopes I never do. And all the while, I’ll practice what my Grandma Edra and Aunt Cora taught me: laugh and love and lean into life.