My daughter is a cancer “previvor” because she inherited a cancer gene from her mother, so this Father’s Day, I’m celebrating her, too.
This coming Father’s Day will mark the first year that I consider myself an official “Father of a Previvor.”For those unfamiliar with the word, “previvor” combines the words predisposition and survivor.Basically, it means someone who has not been diagnosed with cancer but has an increased risk due to genetic mutations and/or a family history of cancer.
In my daughter’s case, an inherited BRCA2 mutation and a family history of cancer gave her the label of previvor.
However, to me previvor means a lot more. It means that the “little bundle of joy” who I watched come into this world, the child I cared for as a stay-at-home-while-moonlighting-as-a-freelance-illustrator dad, who grew into a kind, creative and confident scientist, has a chance to enjoy a full life. A reasonable chance at a full life cancer free. Something her sweet mother did not get.
Previvor was coined by a FORCE community member in 2000 from a challenge on its message board, so the word has been around a while. But prior to my wife’s cancer diagnosis and her and our daughter’s confirmation of the germline BRCA2 mutation, I had never heard of the term. Why should I have? On my side of the family, being diagnosed with and dying of cancer was a very rare occurrence over three generations.
However, my wife’s family is an entirely different story.With three out of four grandparents and both her parents dying of cancer and other blood relatives living with cancer, to say her family’s history of cancer was devastating is an understatement.
Why was the family’s history of cancer ignored by my wife’s family? With numerous blood relatives at risk, why wasn’t life-saving gene sequencing data shared by relatives in possession of it as soon as the mutation was known? And why wasn’t any of it openly shared until I started digging for answers after my wife’s cancer was discovered? I don’t have a good answer for any of these questions, and that will haunt my daughter and me for the rest of our lives.
Writing this story brought countless tears of both unbearable sadness, but also some hopeful optimism, as I thought about last Father’s Day and this one.
Last Father’s Day, after the hospice care facility staff bluntly told me to go home because I needed a break, I went home and watched a favorite movie, “Contact,” with my daughter. Later that night, I went outside and stared up at the stars.
As I stood there with tears flooding my eyes, exhausted and heartbroken, I thought of my wife and daughter and all the wonderful, carefree times we had spent stargazing as a family in places like Sedona, Monument Valley and the Grand Canyon, and how this relentlessly cruel disease had mercilessly ripped the joy, magic, wonder and dreams from our lives. It was difficult to know that just a few minutes of acuity, love and courage years earlier could have prevented this unbearable heartache.
In the darkness, I sobbed to the stars above something that I’m sure countless other cancer patients and caregivers have said: “I hate cancer! Hate it! Hate it! No one should suffer so terribly. No family should be put through so much. The universe did not get this right.”
Less than a week later, my beloved wife took her last breath as I embraced her, a couple weeks before our daughter’s 28th birthday and about a month shy of our 40th wedding anniversary.
Not long after, our courageous daughter had prophylactic surgery to significantly reduce her cancer risk. Although our daughter is only in her 20s, her doctors felt that because of the aggressive cancer her mother had, having preventative surgery as soon as possible was essential. Seeing the sadness in my daughter’s eyes as they took her back for her surgery was soul-crushing though. We both knew her mom should have been a previvor and with us that day.
Caring for my daughter while she recovered from major surgery so soon after her mom’s passing nearly drained what little physical and emotional stamina I had left. But, through it all, knowing that my daughter was being proactive and would be regularly monitored for the other cancers associated with the BRCA2 mutation for the rest of her life gave me optimism for her future.
Previvor Day is Sept. 28 of this year, but I’m celebrating it on Father’s Day too.
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