Ami McKay is the author of three bestselling novels, The Birth House, The Virgin Cure and The Witches of New York. Her most recent book is Daughter of Family G: a Memoir of Cancer Genes, Love and Fate, from which this essay is adapted.
Thanksgiving, 1992. I’d come home from grad school to spend the long weekend with my family and help my mom prepare Thanksgiving dinner. It was mom’s “comeback” holiday, her first big family gathering after surviving a hellish year-and-a-half of surgery and chemo. It hadn’t been easy, but she’d fought her way through colon cancer and come out the other side, sinewy, cheeky, determined, tough.
Her return to the kitchen to engineer the perfect feast was the ultimate victory lap. Mom loved the hustle and finesse required to pull off such occasions – the to and fro of moving from saucepan to turkey baster, the pageantry of setting the table and carving the bird, the laughter that ebbed and flowed by candlelight once the main event had begun. When this particular Thanksgiving dinner had come and gone, I’d watched her survey the aftermath with her hands on her hips, beaming. Motioning to the dirty china stacked on the worn Formica counter in the kitchen, she’d turned to me and said, “I’ll wash, you dry.”
Moving to her side, I’d given her hip a gentle bump with mine. “I’ve missed this.”
“Me too,” she’d replied.
Mom’s kitchen was, by turns, a confessional, a situation room, a therapist’s office adorned with copper jelly moulds and Currier and Ives collector plates. Her kitchen was for nurturing souls as well as bodies. It’s where I’d learned that stories have power – to make sense of the world, to give voice to dreams, to foster hope and banish fear. Much of the wisdom I learned from my mother was imparted to me while her hands were busy – chopping vegetables, washing dishes, stirring soup.
When I’d finished drying the first of the Thanksgiving dishes that day, I’d taken a stack of salad plates and opened the door to the cupboard reserved for mom’s good china. As I’d done so, I’d noticed a letter tacked to the inside of the cupboard door. Bold letters across the top of the page had read: “Permission Form.”
In the weeks and months after her diagnosis, the cabinet had become a repository for insurance forms and medical paperwork. Countless prescriptions and appointment reminders flanked the cups and saucers. Scanning the page on the door, I’d found it slightly different from the rest.
I hereby agree to permit the Department of Preventative Medicine and the Hereditary Cancer Consultation Center to obtain my medical records, pathology slides and tissue blocks from attending physicians and hospitals, in furtherance of the research studies they are conducting.
“What’s this?” I’d asked, pointing to the paper.
Plunging a casserole dish into a sink filled will soapy water she’d replied, “Didn’t I tell you? I’m donating my tissue samples to science.”
“From your cancer?” It’d sounded a bit too Frankenstein for me.
“Yes, from my tumour, and samples of my blood, too.”
“What are they going to do with them?”
“Hopefully crack the code to our family’s cancer.”
She’d come from a family tree that’d seemed remarkably prone to the disease. In particular, cancers of the colon, uterus and stomach had repeatedly targeted her relatives in the prime of life. She could trace their suffering back several generations because her great aunt Pauline Gross, a dress maker from Ann Arbor, Mich., had first documented the family’s suffering in 1895 before handing the family pedigree and their story over to a pathology professor at the University of Michigan. She’d hoped he might be able to assist her kin.
From that moment on, the family had been poked, prodded, observed and studied by numerous researchers. Some had gone so far as to label the family as “inferior stock” and recommended family members “let the line die out.” In 1936, Time magazine ran an article about them with the headline: “Cancer Strikes 6 Generations: Malady Dogs Family Since 1856.” We would eventually become the longest, most detailed cancer pedigree in the world.
My mother’s grandmother, Pauline’s sister Tillie, had been the first in the family to survive a cancer surgery and live. She’d taught my mother to talk about the disease openly and honestly and to refuse to see cancer as a death sentence. Stories of symptoms and early warning signs were passed down during kitchen conversations, from my great grandmother to my grandmother to my mother to me.
Even though doctors and researchers hadn’t yet solved the puzzle of our family’s cancers, we still had the power of story on our side. As Tillie liked to say, “All the flowers of all our tomorrows are in the seeds we plant today.”
When my mother had first felt the initial pangs of colon cancer, she’d told her doctor of her family’s history and asked for a colonoscopy. He’d shrugged his shoulders and said she should wait it out. “It’s probably just a stomach bug.” His misdiagnosis had led her to seek a second opinion and a third, until eventually her symptoms led her to the ER where a doctor had finally listened to her story and believed her.
“What happens when they crack the code?” I’d asked, wondering if it would make any difference.
“We’ll finally have proof. There’ll be no more begging for colonoscopies, no more doctors saying we’re crazy. And maybe it’ll mean that one day there will be no more cancer. I’d said to myself if I got through this damn mess that I wouldn’t waste any more time. This is my chance to do something big. This could help not just our family, but others, too. We have to do our part.”
Seven years after my mother donated her tissues and blood to cancer research, a team at Johns Hopkins University in Baltimore isolated a mutation in her DNA revealing a genetic condition that’s now known as Lynch syndrome. Those who carry the mutation have a greatly increased risk for various cancers (colon, endometrial, ovarian and gastric among them) and they have a 50-per-cent chance of passing it on to their children. With the researchers’ discovery, clinical diagnosis was now possible and more than a century’s worth of our family’s stories had finally been confirmed.
In 2001, I was one of the first cancer-free individuals to be tested for Lynch syndrome. My results were positive. Since that day, I’ve lived in an unsettling state between wellness and cancer. Each year I undergo a series of screenings and procedures to make sure I’m healthy. Several years ago, I chose to have a prophylactic hysterectomy.
Although these changes have been challenging to navigate, I know my diagnosis has afforded me time and health and opportunities to embrace life in ways my ancestors couldn’t. They are part of a greater legacy. They are gifts born from kitchen table stories and my mother’s tenacity.
Today, people around the world are “discovering their heritage” through their DNA. Ancestry kits are among the top-selling birthday and Christmas gifts. We spit into tubes and send them off to be analyzed so we can stare at a pie chart on a computer screen that supposedly breaks down our ancestral makeup into clear-cut percentages.
We want to know where we’ve come from – the places, the people, their cultures – as if it will somehow explain our own identity (or, perhaps, give us a new one). The graphs and statistics that result from these pursuits carry the patina of scientific and academic relevance. The pedigree charts and twitching leaves of accompanying family trees cause us to feel a weighty connection with history. We make note of what our own ancestors had to overcome in order for us to be born and marvel at the connectedness of it all. And yet we rarely talk about illness between generations and the patterns it can leave in our blood.
The latest research estimates that one in every 125 people has Lynch syndrome, yet just 5 per cent know it. It’s more prevalent than the BRCA1 and 2 gene mutations indicating breast and ovarian cancer risk, and yet the general population is largely unaware of the condition.
In hindsight, I now see how essential my mother’s kitchen conversations were, how the lineage of outspokenness about cancer in my family and the insistent keeping track of symptoms and medical histories informed science, and ultimately keep me whole.
Mom passed away 12 years ago this past January. Complications from influenza after a second colon cancer and subsequent treatments were more than her 73-year-old body could take. Although my time with her will never seem long enough, the lessons learned from our kitchen conversations were many and great.
As I write this, a hurricane is barrelling across Nova Scotia. The trees in my yard are bending without relief and torrents of rain are sheeting down my kitchen windows. The power went out hours ago, but there’s a fire crackling in the wood stove and a kettle sputtering in response, ready for tea.
I am in my kitchen trying to make sense of things while chaos rages outside the door. I’m grateful for the memory of my mother’s wisdom that cuts through the din. Don’t shrink away from the tough stuff, no matter what comes knocking. Speak your truth at the kitchen table. Tell your stories now. You never know what cures they’ll bring.
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