by Mark A. Hicks
Odd how a quote can catch your attention, and you are not quite sure why. However, you soon forget about it until it vividly comes back to mind one day when it profoundly applies to your life.
The headline for this blog is a quote by writer, educator and activist Terry Tempest Williams. The first time I saw the quote, it briefly gave me pause. It was probably because I had known so many families that were affected by cancer, including my late wife’s. But I didn’t give it much more thought.
Williams had lost numerous members of her family to cancer, but I wasn’t reading her books or essays about that. I happened to come across the quote as I was looking up information about her books on nature. I read her stories and other nature writers’ narratives because of my love of the wilderness. I was focused on nature and future plans.
At the time, life was going well and my retirement was not far off. My wife Donna and I had plans to visit and hike every US national park and see as many national monuments as we could. And maybe volunteer at a couple of them. Our plans also included regular visits to the national park where our daughter worked. I was already creating illustrations for the National Park Service as a volunteer, and I was hoping to continue doing so. With Donna being an exceptionally talented educator and fellow nature enthusiast, the opportunities seemed plentiful.
The nightmare begins
Our plans changed forever in November 2017 when Donna was diagnosed with advanced-stage triple-negative breast cancer and a BRCA2 mutation. Terry Tempest Williams’ quote was suddenly very relevant as I became Donna’s caregiver and our daughter found that she inherited the same BRCA2 mutation.
Ironically, Donna first started feeling symptoms on a nature hike. After returning home from that hike, I started searching for answers ahead of an urgent appointment at the breast imaging center she had been going to for years. I’m not sure; maybe it was Williams' quote subconsciously speaking to me, but I felt that I needed to research Donna’s family cancer history ASAP.
I knew both of Donna’s parents had died of cancer but neither one of breast cancer. Her father died of metastatic melanoma but also had non-Hodgkin’s lymphoma, and Donna’s mother died of adenocarcinoma of unknown origin. To make a long and complicated story short, I also knew that a second-degree relative on her father’s side, who was the self-designated family genealogist, had survived a rare breast cancer. So I sent a message asking for details about the family’s cancer history.
It should have never happened
I was shocked and angered to receive a gene sequencing report a short time later from this relative that spelled out a specific deleterious BRCA2 mutation. It also stated, “Each first-degree relative of this individual has a one-in-two chance of having this mutation.” I instantly knew what that might mean and how important that statement was. Donna’s late father was a first-degree relative of this individual. This information had been available since 2010—why was it just being shared now?
I had always assumed that this type of potentially life-saving information would be openly shared within the family. And that the individual’s doctors would alert other family members as well. Naively, I had believed the “duty to warn” applied to genetic cancer risks. But under HIPAA laws still stuck in the last century, nobody has to say a word.
Donna’s cancer was a hellish nightmare. It metastasized rapidly to her spine and brain. And on June 26, 2021, Donna died while I embraced her. A few weeks later my daughter had a bilateral prophylactic mastectomy. Looking into my child’s eyes as they took her back for surgery was indescribably heartbreaking. We both knew her beloved mother should have been there that day too.
Because of what happened to Donna, and since our daughter is a previvor, I have become a determined advocate for hereditary cancer awareness and prevention and a volunteer at FORCE. My focus is on family communication and cascade genetic testing when there’s a history of cancer.
By speaking up, I hope to prevent other families from getting cancer.