PROLOGUE

In My Blood

One 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 2017
I’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 “Landslide,” our voices courting coyote song as daylight fades. The lyrics catch me off guard, threaten to make me cry. Shit. I think. Forty-nine. The child in my heart doesn’t know if she can handle it.

My eldest brother was fifty.

My other brother was thirty-nine.

One of my cousins was thirty-seven.

Another, fifty-one.

Our generation hasn’t escaped cancer’s reach.

My husband takes my hand, gives it a gentle squeeze, leads meinto the house. “Time for cake.” He is my heart, my haven, my bestfriend. Later, when the house is silent and dark, he’ll still be at myside. I hope he can’t see the tears in my eyes.

A crowd of smiling faces gathers around me, laughing, singing,the kitchen awash with flickering candlelight. My big brother, the survivor, sings louder than the rest. Happy birthday, dear Ami . . . Myson sneaks a fingerful of frosting from the edge of the cake and givesme a sly wink. I scowl in fake disapproval, then do the same, on behalf of his little brother who’s away at summer camp. Family traditions mean everything.

Happy birthday to you . . .
Closing my eyes I blow out the candles, make a wish. It’s the same wish I’ve made every birthday for the past sixteen years, two simple words I hold in my heart: not yet.

To pretend cancer won’t ever come for me is a dangerous game.Yet somehow this annual ritual of asking it to wait seems reasonable and fair. Anticipating cancer is one thing, negotiating life as I wait for its arrival, another. Fear has become both enemy and friend. It can eat me alive. It can save my life.

I pray my bargain with fate will last another year.