Daughter Of Family G: A Memoir Of Cancer Genes, Love And Fate by Ami Mckay

Daughter Of Family G: A Memoir Of Cancer Genes, Love And Fate

byAmi Mckay

Hardcover | September 24, 2019

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Weaving together family history, genetic discovery, and scenes from her life, Ami McKay tells the compelling, true-science story of her own family''s unsettling legacy of hereditary cancer while exploring the challenges that come from carrying the mutation that not only killed many people you loved, but might also kill you.

The story of Ami McKay''s connection to a genetic disorder called Lynch syndrome begins over seventy years before she was born and long before scientists discovered DNA. In 1895 her great-great aunt, Pauline Gross, a seamstress in Ann Arbor, Michigan, confided to a pathology professor at the local university that she expected to die young, like so many others in her family. Rather than dismiss her fears, the pathologist chose to enlist Pauline in the careful tracking of those in her family tree who had died of cancer. Pauline''s premonition proved true--she died at 46--but because of her efforts, her family (who the pathologist dubbed ''Family G'') would become the longest and most detailed cancer genealogy ever studied in the world. A century after Pauline''s confession, researchers would identify the genetic mutation responsible for the family''s woes. Now known as Lynch syndrome, the genetic condition predisposes its carriers to several types of cancer, including colorectal, endometrial, ovarian and pancreatic.
     In 2001, as a young mother with two sons and a keen interest in survival, Ami McKay was among the first to be tested for Lynch syndrome. She had a feeling she''d test positive: her mother''s side of the family was riddled with early deaths and her own mother was being treated for the disease. When the test proved her fears true, she began living in "an unsettling state between wellness and cancer," and she''s been there ever since. Intimate, candid, and probing, her genetic memoir tells a fascinating story, teasing out the many ways to live with the hand you are dealt.
AMI McKAY is the author of three internationally bestselling novels--The Birth House, The Virgin Cure and The Witches of New York and the recent yuletide novella, Half Spent Was the Night. She began her writing career as a freelance radio journalist, and in 2001 wrote and produced a radio documentary, also called Daughter of Family G, ...
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Title:Daughter Of Family G: A Memoir Of Cancer Genes, Love And FateFormat:HardcoverProduct dimensions:320 pages, 9.27 X 6.34 X 1.05 inShipping dimensions:320 pages, 9.27 X 6.34 X 1.05 inPublished:September 24, 2019Publisher:Knopf CanadaLanguage:English

The following ISBNs are associated with this title:

ISBN - 10:0345809467

ISBN - 13:9780345809469

Appropriate for ages: All ages

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Read from the Book

PROLOGUEIn My BloodOne week after 9/11, I walk into a hospital in rural Indiana and ask a nurse to draw six vials of blood from my arm. I need to know what the future holds, at least my meagre part of it. I’m a healthy, thirty-three-year-old mother of two who can’t stop thinking about what tomorrow might bring.A small TV perched on a filing cabinet in the nurse’s office is tuned to the morning news. A commentator with perfect hair and straight teeth stares at me from the screen. The crawl beneath her smiling face reads: IS THIS THE NEW NORMAL?The nurse, prepping her kit, asks, “Will this make you squeamish?”“No. I’ll just look away.”I don’t. I watch every step of the procedure from start to finish—the elastic band pulling tight around my arm, the nurse’s fingers prodding for a vein, the slip of the needle into my skin, the steady flow of dark red blood into each tube as the nurse deftly swaps them, one after another—one, two, three, four, five, six. I’m looking to see if I can spot the ghosts in my blood.Within the hour, the samples are shipped to a lab at a university in Nebraska. Researchers there will search for a genetic mutation in my DNA that predisposes me to developing several types of cancer. It’s a terrifying list. Colon. Endometrial. Ovarian. Stomach. Bile duct. Liver. Kidney. Pancreas. Upper urinary tract. Brain. Small intestine. Breast. Skin. The literature from the lab says: A far greater than average risk, at an earlier than average age. My uncle was diagnosed with his first cancer at twenty-six, my grandmother at fifty, her brother at forty-nine, her sister at forty-three, my mother at fifty-eight. Mom joked and said it was the first time in her life that she’d been a late bloomer. Cancer occurs so frequently in my family, it’s become a cruel rite of passage. The list of known initiates dates back to 1856.The method the lab will use to test my blood is the latest in medical technology, but pathologists and geneticists have been studying my family for well over a century, working to make sense of a disease that’s haunted us for generations. We are the longest and most detailed cancer genealogy ever studied in the world. Science needs us as much as we need it.Several months later, I have a phone conversation with Dr. Henry T. Lynch to get my results. He’s the chair of the Department of Preventive Medicine at Creighton University, head of the lab where my blood was tested, and the man for whom the cancer syndrome my family suffers from was named. He’s also someone my discerning, no-nonsense mother considers to be an honorary member of our family. In her estimation, “Henry’s a saint.”After we exchange greetings, Dr. Lynch says, “I want to thank you and the members of your family for helping us all these years.”His voice is cheerful and grandfatherly, which makes for lovely chitchat,but it also makes his explanation about the implications of having Lynch syndrome strangely unnerving. “The lifetime risk forcertain cancers increases at an extraordinary rate compared to the general population, so having the mutation puts one in the category of what we call ‘accelerated carcinogenesis,’ that is, rapid evolution of cancer.” He tells me if I have the genetic marker, there’s an 85 percent chance I’ll get colon cancer in my lifetime and there’s nothing I can do to prevent it. No amount of meditation or healthy foods or exercise can stop it.My stomach tightens. Even though I’ve known all those thingsfor quite some time, hearing it straight from Henry makes it seem new and alarming. Rapid evolution of cancer. And he hasn’t even gotten to my results.We converse at length about my mom and my uncle and my grandmother,folding their cancer milestones into our small talk. It feels likecatching up with an old friend.I mention other relatives, not by name but by their relationship tome, and their age at the onset of cancer—people who died long beforeI was born, people whose medical records Henry knows intimately.I need him to know that I, too, have a vast knowledge of their suffering.I’ve always been an A student. I want him to see how hard I’ve studied for a test that I can’t ace.When he finally gets around to delivering the news, his voice cracks and falters. “Well, I really feel badly telling you this, but you did inherit the gene. You do have the mutation.”There’s sympathy there, and heartbreak—his and mine.“And now, by God,” he adds, “I want you to have a colonoscopy as soon as possible. I truly hope everything will turn out okay.”“Thanks, Dr. Lynch. I’ll get on it right away.” Even though I’d told myself a hundred times over it would probably turn out this way, I’m completely devastated. I do my best not to cry as I listen to the rest of what he’s got to say.“Just as the risk of developing colorectal cancer in your lifetime is extremely high, the same goes for endometrial cancer. I urge you to contact a doctor immediately if you experience any unusual pain or symptoms.” One by one he lists the annual screenings, tests, scopes and procedures I’ll require, along with prophylactic surgeries I should consider having, soon.From this moment on, I’ll never “not know” again. I now live in an unsettling state between wellness and cancer. I am an unaffected carrier, a “previvor.” This is my new normal.When science offered me the chance to glimpse my future, I took it.What it didn’t show me was how to live with what I saw. By the time I received my results, I’d witnessed the wreckage of cancer in my family several times over. I’d lost people I loved, admired and adored. How was I to cope with knowing that same fate lurks in my blood?As a child, I listened to the women in my family tell stories of the past—grandmothers, aunts and cousins sitting around the kitchen table with my mother, sometimes laughing until they cried, sometimes sobbing through words of grief. They spoke of relatives who lived before I was born—people who came from nothing, who faced great hardship, who died too young. The women in those tales stared downdeath, looked after the sick, and conversed with fate. They spread thetruth through story, even when others didn’t wish to hear it.This is how I learned that stories have power—to make sense ofthe world, to give voice to dreams, to nurture hope and banish fear.What I didn’t know then was that those stories would provide me with what I need to navigate life with Lynch syndrome. Sometimes the best advice on how to live comes from listening to the dead.I am now fifty.My sons are young men.My mother and the women who sat around her table are gone.This book is my attempt to keep their stories alive as I come toterms with what lies ahead.Looking to the same place science has gone for answers—to my ancestors, my family, my blood—I wrote my way between their past and my present, chasing after lost voices in hopes of finding mine.It was a journey that revealed truths shared across generations,and secrets hidden in stacks of worn journals and yellowed papers.Each discovery led to another, creating a twisted path of revelations that wound between old homesteads and graveyards; research laboratories and hospital archives; groundbreaking scientists and long-lost family. Every encounter brought new connections and stories, and with them came a new narrative of understanding.The world is now a place where facts and information are at ourfingertips. Genomes are regularly sequenced to “find your heritage”or “understand your DNA.” Current research shows that one out ofevery 279 people has Lynch syndrome. Yet only 5 percent have been diagnosed. A simple spit test can determine a myriad of health concerns a person will likely need to address in their lifetime. A newera in medicine has arrived.Information is power, science says. It saves lives.Yes, absolutely it does.And our stories keep us whole.1. Not Yet.Scots Bay, Nova Scotia, July 2017I’m standing on the back porch of a seaside farmhouse, surrounded by friends. The evening breeze off the Bay of Fundy is cool and damp, but not unkind. It feels more like September than late July. Melancholy. Bittersweet. It’s my birthday—forty-nine.A few of us lean against the lichen-checked railing while the rest of the guests mingle around a bonfire in the yard. The window above the kitchen sink is open, and I hear water running, someone washing dishes, clanking pots and pans. It’s my eldest son. “Don’t worry about that right now,” I tell him through the screen. “It can wait.” He gives me a goofy grin, pretends he can’t hear me. Later, the kitchen will be spotless, as if the party never happened. Happy birthday to me.I stretch my arm out from under the roof of the porch and catch wet in the palm of my hand. It’s starting to rain but no one seems to mind. The bonfire hisses and cracks. My two old barn cats are curled on a faded lawn chair, tucked in a knot of mutual comfort. One, pale ginger, the other, tortoiseshell calico. Yin and Yang. Yin stretches, his claws grasping at nothing, then opens his mouth in a wide toothy yawn. Not a care in the world. Someone brings out a guitar and we porch dwellers start to sing Fleetwood Mac’s &ldq

Editorial Reviews

“A lovingly chronicled family tale about fatal genetic predisposition. . . . In the best of creative non-fiction writing, this genetic memoir weaves together her family history and scenes from her past. . . . Beautifully written.” —Annapolis County Spectator“Ami McKay, how do you do it? How do you turn a tale of cancer genetics gone mad into a surreal and beautiful story of love and resilience and genealogy and history? Daughter of Family G is more than a memoir—it manages to unfold and examine all of our pasts. How do we define ourselves? What is destiny? Is fate as simple as it sounds, or can it be rewritten? This book became a bible of sorts for me, providing me with the most brilliant tools to imagine my own future. Every single time I turned a page, I felt more invested in the lives of Ami and Ami’s family. Her ability to be vulnerable and open was beautiful. How she faced her personal demons and gave them heart was everything. I was sad when it was over. I wanted to follow Ami to her house and sit at her kitchen table and ask her a hundred questions. This book read so much like a novel. It was suspenseful and heartfelt and scary and wonderful. Who knew cancer could be so interesting.” —Jann Arden“Ami McKay’s memoir is a deep and relevant meditation on navigating the terrain between the genes we inherit and the life we choose. For McKay, despite a life-threatening mutation, it is life-affirming family love that triumphs.” —Pauline Dakin, author of Run, Hide, Repeat“Ami McKay’s book mourns all that is lost, but is no tragedy. Instead, she celebrates the ancestors who contributed so much to our understanding that cancer is in part hereditary. More importantly, she teaches us through moving stories and memories how to live and live on beyond the grasp of destiny.” —JJ Lee, author of The Measure of a Man“This beautifully told, genre-bending story is part mystery and part love story that reads like historical fiction. I couldn’t put it down. It’s the rare book that makes you laugh, cry and learn so much.” —Tina Cassidy, author of Mr. President, How Long Must We Wait“Infused with hard-won wisdom, this brilliant memoir of a family haunted by cancer is an invitation, in the face of fear, to be “wildly, passionately, outrageously devoted to life.” Bees, crinoline, hospital labs, kindness, grief, despair, and especially love—the large and small signatures are all here, recognizable, heartbreaking, and confirming. Moved to tears, I held this profound and courageous book to my heart, reminded of life’s frail wonder.” —Beth Powning, author of The Sea Captain''s WifePRAISE FOR THE WITCHES OF NEW YORK:“[An] enchanting novel, the characterization is particularly adept. . . . Woven together with depth and intensity into a vibrant tapestry. . . . Highly recommended.” —Booklist (starred review)“This might only be Ami McKay’s third novel, but she has already become one of the country’s most beloved storytellers.” —The Globe and Mail“[A] magical little book . . . Witches may be McKay’s best effort yet in the way it combines humour, the occult and history into a fascinating and fun novel of women supporting each other.” —The Vancouver Sun