No amount of fear

Back from our road trip, I realized, retrospectively, that in nearly every visit with friends and family during those weeks, I talked about Lynch syndrome. No one had heard of it, so understandably the responses to my talk of it were muted, seemingly uncomprehending of my worries and thus not wholly satisfactory on an emotional level. But, like Coleridge’s ancient mariner, I kept at it, speaking of it again at the next stop on our itinerary.

Reflecting on this compulsive sharing, I have to conclude that this Lynch syndrome business has affected me more than I thought. Lynch syndrome is an inherited genetic predisposition to certain kinds of cancer, often manifesting relatively early in life, and no, I don’t have it. But my husband does.

The confirmation that he does was not a huge surprise, in light of his history of four kinds of cancer so far, though we’d never heard the name either until a cousin of his phoned to say their entire family had been tested and there it was, in nearly half their siblings and in those siblings’ families. Suddenly we saw H’s  family tree, beginning with his grandmother and then his mother’s line as well as one of her sister’s and one of her brother’s and their children and the high predominance of cancers, in a new way. What we’d occasionally remarked on anecdotally was a family tree with blinking lights all over it, the latest our 56-year-old niece who died this year of a brain tumour, she the daughter of H’s sister who passed away of cancer some years ago. We took what we knew of the family tree to his oncologist and a test was readily arranged, and then we had the results, the marker. Which means that if they wish, our three children can be tested as well. (It doesn’t skip a generation, but children of a carrier have a 50-50 chance of being carriers as well.)

But all this is a long introduction to a book I wish to recommend. I heard about it “by chance” when I turned on the car radio while doing errands. Ami McKay, well-known author of The Birth House and The Virgin Cure, has a new book out: Daughter of Family G: A memoir of cancer genes, love and fate. As soon as I got home  I placed a hold on it at the library, and it was waiting there for me during our road trip, so perhaps that too is why I was bringing it up at every stop.

I’ve read the book now and it’s interesting and well written. McKay is part of the original family that a pathology professor, Dr. Warthin, tracked when her great-great aunt, Pauline Gross, a seamstress, confided that she expected to die young, like many others in her family. Dubbed Family G, this became the longest and most detailed cancer genealogy studied in the world. Dr. Warthin posited that there was a familial connection, though not all his colleagues were convinced; they felt the causes of cancer were external. Unfortunately the study was used in service of a toxic eugenics environment in the 1930s that proposed such “lesser” folk shouldn’t have children. Eventually a Dr. Lynch and others discovered the genetic particularities that make it a syndrome. And fortunately, alongside, early detection and treatments for cancer have also advanced.

Ami McKay juxtaposes the historical narrative of the syndrome with the stories of various family members as well as her own story. She tells us early on that she tested positive as a carrier, though at the time of writing she’s still cancer free. There’s a thread of suspense as well, as we don’t know until late in the book whether her eldest son, now old enough to be tested, is positive or negative.

The book was interesting, yes, but tough to read as well. But satisfying too, in the resonance I felt with both McKay’s fears and her approach to life in spite of. Sentence by sentence she plucked at what I was feeling as a mother, or perhaps anticipating. “Even though I’d told myself a hundred times over it would probably turn out this way, I’m completely devastated….” she writes about hearing the results of her test. “I now live in an unsettling state between wellness and cancer.”

She decided to take science’s offer to “glimpse” her future, she says. But science didn’t show her “how to live with” what she saw. For that she drew on the inspiration of various similarly affected people in her family line.

Information is power, science says. It saves lives.

Yes, absolutely it does.

And our stories keep us whole.

She remembers her grandmother Tillie’s favourite saying: “all the flowers of all our tomorrows are in the seeds we plant today.” “If you can believe that one seed you’ve sown, one deed you’ve done will flourish after you’ve gone, then you’ve beaten the curse.”

I didn’t choose to be born with a genetic mutation any more than I chose to have curly hair or hazel eyes, or the likelihood of having lots of freckles, or the predilection for salty over sweet. But I sure as hell can decide which character traits from my ancestors I wish to embrace. Courage, fearlessness, persistence, kindness, a dedication to telling the truth–these are the things I choose.

But my very favourite line is this one:

No amount of fear can ever make us safe.