Tests I’m a Previvor
The test would tell me if I’d develop the cancer my dad died from.
Extending Life is the name of the only magazine in the waiting room of the genetics clinic, and I see it and think: That’s sad. I think it’s sad because I imagine that the people writing and editing Extending Life once had big dreams of being journalists on a beat other than end-stage cancer.
In my mid-twenties, when I thought I would live forever, I was a freelance journalist, and I supplanted my income from op-eds and book reviews writing for a business-to-business magazine that covered conference travel. That is to say, a magazine for people who organized conferences, telling them about places where the conferences could be held. My job was to fly to exotic locations—Singapore, Mauritius, Las Vegas—to tour conference facilities.
It was a good gig, in some respects. It paid well, it earned me frequent flyer miles, and it put me up in five-star hotels populated by businessmen who sometimes mistook me for a call girl when I met them in elevators. I learned to order off a pillow menu and developed informed opinions about the relative quality of hotel spas. But I resented giving up space in my brain for facts and figures about seating charts and audiovisual systems. I hated wasting my talent, or what I believed was my talent, on descriptions of podiums and trust-building team exercises. I see Extending Life and I imagine that I know how the journalists who work there must feel every time they slam out another paragraph about nutritional supplement milkshakes, or describe how to set up a hospital bed to turn a living room into a dying one. I imagine that they think: I could have been Woodward, or at least Bernstein .
This is all only imagined because I’m not cracking open an issue of Extending Life . I’m not ready for it. I’d be more than happy with the George Clooney wedding issue of People , or even a year-old copy of Cat Fancy . This is a clinic that caters to the very ill, but I am not sick. Not yet.
You should get tested, my father said, the last time we ran an errand together. This had always been our way, since I was a girl: On weekends, picking up hardware or office supplies, bagels for lunch, or stopping by the library, the bookstore, he’d take me along for the ride and we’d talk. I didn’t know the last time was the last time, not for sure, but it felt like it could be. He’d been sick for a while, but since my visit a few weeks before he’d started to look like a cancer patient. Everything about him was gray-beige and receding, except for his pants. They swamped him. Dad should buy new pants, I thought, but I never said it. Dad was smart with money. Instead of new pants, he bought suspenders.
The last time Dad and I ran an errand together, we were going to Staples, so that he could get a copy of his PhD thesis in nuclear physics spiral-bound. I didn’t ask why. He was dying. We were mostly silent in the car. I said some words about the weather. In the parking lot, my father unbuckled his seatbelt. He moved like a cancer patient, too: slow, pained. He didn’t open the door.
You know, Dad said, looking ahead through the windshield at the parking lot, which was also gray-beige. You should get tested.
I will, Dad, I said. I’m working on it.
“I’m working on it” was Dad’s phrase. He applied it to any situation: choosing the best new household mop; enfranchising citizens with an activist group promoting verified voting; reading Middlemarch ; nuclear physics. “I’m working on it” meant Dad was thinking about something, considering it. Dad never failed. Everything could always be worked on: deliberated, evolved, improved.
When I said I was “working on it” I meant that I was thinking about it too. I was thinking about it a lot. Four years earlier, Dad told me he had it, this syndrome, and that his sister, my aunt, had it, and that their mother, dead at forty-three, most likely had it. Get tested, he had said then too, and my brother got tested and my sister got tested and my cousin, my aunt’s only child, got tested. None of them had it. I didn’t get tested because I was certain that I did. Certain because of my other inheritances from Dad: childhood asthma, chronic anemia. We had the same room-filling laugh, and every morning from the time I turned thirty I would look in the mirror first thing and see his features growing in to my sleepy face and rub anti-aging cream into his lines on my forehead. Sure, until I had the test, I had no reason to be certain. I believe only in science, because that’s how Dad raised me. But I just had a hunch. And a 50% chance.
When I said I was “working on it” I also meant that I had made a decision that I was not going to get tested while Dad was alive. I couldn’t imagine telling him that I had the thing that was killing him. I had thought about telling him that I’d had the test and that it was negative, to help him rest easy. But then I’d thought about having to tell my mother afterwards that this was a lie.
Ten weeks later, Dad was dead.
Six months after that, I was ready to know.
I start with a gastroenterologist. The seats in the office are upholstered with chintzy fabric, and the fabric is covered in thick, clear plastic. I guess this is because gastroenterology patients have a tendency to leak. I slide around on one of the chairs for a few minutes until a nurse takes me back into an exam room to take my vital statistics.
Any medication? she says.
No, I say.
I see here it says that you were treated for depression, she says, gesturing to the form I filled out in the waiting room with all the details of my medical history since birth.
Yes, I say. When I was a teenager.
Oh, she said. Did you take medication for that?
Yes, I said. But I stopped it some years ago.
How did it make you feel? the nurse says.
What? I say.
It’s a personal question, she says. You see, I’ve been thinking about taking anti-depressants. I’ve been feeling down.
Uh, I say. Oh. Um, I guess they made me feel better?
Oh, OK, says the nurse. You see, I’m a mom and I don’t want my little girl to see me so sad all the time.
Yes, I say, I see, of course. You should . . . I mean, I think you should do what’s best for you and your daughter.
Thanks, says the nurse.
I feel worried about the nurse.
The nurse shows me into another examination room and leaves me, for twenty minutes, to wait. I sit on the examination couch, which seems like the right place to wait, as a patient, even though I am just here to ask the gastroenterologist for a blood test. Later I’m meeting a friend for drinks at a glamorous Manhattan restaurant, so this morning I put on a nice dress, peep-toe heels, a long necklace. An outfit which now feels kind of dumb to be wearing while sitting on an examination couch.
The room looks like it hasn’t been updated since before I was alive. The sole piece of decoration is a large Proctor & Gamble-branded plastic poster of a human digestive system, rendered in relief. The poster depicts every possible digestive ailment known to man, or at least every possible digestive ailment known to man in the 1970s. There’s appendicitis and colitis and bowel cancer; stomach cancer and acid reflux. Every organ is sporting a tumor. The medical illustrator has even included a couple of insects, fluttering towards the edge of the poster as if they’re trying to escape: parasites.
How are you? says the gastroenterologist when he arrives. He appears to be only two or three years older than I am.
I’m fine, I say. Even though I’ve been looking at this horrible poster for twenty minutes.
You’d be surprised, says the gastroenterologist, how many people don’t know what a colon is.
I laugh. He laughs.
How are you feeling? the gastroenterologist says.
Great, I say. I feel great! Except that I need to get tested to see if I have this syndrome .
Right, he says.
My father was diagnosed with it in 2010, I say. He died.
I’m sorry, says the gastroenterologist.
So, I say, I guess I should get tested for it.
Yeah, says the gastroenterologist. OK. I mean, usually I test people for this by taking a biopsy when they have a colonoscopy.
OK, I say.
But you can have a blood test, says the gastroenterologist. And then if you don’t have it you don’t have to have a colonoscopy. Do you want a blood test?
Sure, I say.
The gastroenterologist starts looking in a large book. He turns a lot of pages.
I guess it’s in here somewhere, he says.
Should I google it for you? I ask. I have no idea what he’s looking for.
No, no, he says. It won’t be on the internet! I’m sure it’s in this book.
OK, I say.
I swing my legs a little, like I used to do thirty years ago, waiting in my pediatrician’s office for a physical. I look at my fancy shoes.
So, says the gastroenterologist, still flipping, your siblings have been tested?
Yes, I say. They’re negative. And my cousin on that side of the family, negative too.
That’s great, says the gastroenterologist in a bright voice, So that means . . .
That I still have a 50% chance of having it, I say.
Yeah, says the gastroenterologist, losing his sparkle. Yeah.
It takes four weeks to get the results of the test. I don’t think about it. I go to work at my uninspiring and well-paid job in an office on 5th Avenue that provides me with health insurance. I drink cocktails with my friends. I go on some dates with men who I meet on my phone. The gastroenterologist leaves me a voicemail message while I’m on vacation in Mexico with my friend Joanne: He says I should call him. My phone doesn’t work in Tulum, so I only hear the message a few days after he leaves it, just after the plane touches down at JFK.
Great! I say to Joanne. The gastroenterologist wouldn’t just call me on the phone with this terrible life-changing news. I must be negative!
He wouldn’t! she says, You must!
We feel happy. It’s a nice end to our vacation.
I call the gastroenterologist back the next day.
He would. He would just call me on the phone.
I’m going to refer you to a geneticist, the gastroenterologist says.
OK, I say.
I end the call. I lie down on my bed. I scream.
Eventually, I call my brother.
I have it, I tell my brother.
Fuck, he says.
There’s a name for this thing that I have, this genetic disease that makes me 80% more likely to develop cancer. When I google the name of the syndrome—Lynch, like the murder, but also like the doctor who discovered it—I discover that there’s a foundation set up for people like me. On the foundation’s ugly, rudimentary website, I learn that we are divided into two groups: “survivors” and “previvors,” as if cancer is not a possibility or a risk, but a certainty. I guess that’s what I am now: I’m a previvor. In my head, I sing it to the Destiny’s Child tune.
Previvors of Lynch syndrome are often from specific ethnic groups. Folks who tend to stick to their own kind. People from Finland. People from Iceland. French-Canadians. The Amish. Ashkenazi Jews.
How Jewish I am is a question I have been answering since I was eighteen years old, when I arrived for my first year of college and well-meaning sophomores knocked on my dorm room door and invited me to Shabbat dinners.
Why did they think I am Jewish? I asked one of my new college friends. I mean, I kind of am, but also not.
Your last name is on the door, he said.
So, I said.
You have the most Jewish last name of all time, he said.
Oh, I said. I had never noticed this before.
Now, I think about the college boyfriend whose mother disliked me because I was not Jewish. Sometimes she lies and says that you are because of your name, he told me, but your mom isn’t Jewish, so.
I’ll convert? I said.
That might be good enough, he replied.
I think about the uncle of the next boyfriend, an Irish Catholic, who looked me coolly in the eye across a long table at a big family reunion and said: Hitler would have considered you Jewish.
I stuffed a piece of garlic bread in my mouth. I didn’t speak much for the rest of the weekend.
My doctors agree with the uncle. Now they write it at the top of every one of my medical records. Ethnic group: Ashkenazi Jew.
The geneticist looks at least twenty years older than I am. He is one of the world’s experts on Lynch syndrome. He shakes my hand and introduces me to a genetic counselor, a woman who looks my age, maybe a couple of years younger. Her hair is splendid: long and shiny and flippy. It’s the kind of hair I’ve always dreamed of, but don’t have, because my brown curls are another thing that I inherited from my father’s people. They usher me past the magazine stand holding the copies of Extending Life and past the reception desk into a small room that’s crowded with chairs. I end up in the one in the back corner, the spot that’s hardest to escape from.
So, says the geneticist, you tested positive for Lynch syndrome? How did you know to get tested?
My father had it, I say. First he had skin cancer that was related to the syndrome and then he got lung cancer, and they could tell from the biopsy that it was caused by the same gene.
OK, says the geneticist. But your father hasn’t had colon cancer?
No, I say, he did. He’s dead. He died in February.
I’m sorry, the geneticist says. My father died in February too.
This really isn’t about you , I think.
But what I say is: I’m sorry.
The geneticist looks at me, and I look at him, and for some reason I laugh, as if to say: Dads! What are they like? Dying in February!
The geneticist moves on to explaining what kinds of cancer I’m at high risk of developing. It’s a lot of kinds of cancer. Colon, esophagus, stomach, pancreas. And because I am a woman, endometrial cancer. Ovarian cancer.
For women, says the geneticist, the recommendation is a prophylactic hysterectomy.
I know this. I’ve googled this. I look at the geneticist.
I haven’t had children yet, I say. I mean, I want to have children, but I don’t have a partner.
The geneticist and the genetic counselor look at me. I look at the door, which is between me, and them, and all of the chairs.
This , I think, is the saddest silence of my entire life .
I’m not going to do that right now, I say.
OK, says the doctor. You know, if you want to have kids, this is New York, so you can have IVF! That way you can ensure that they don’t have Lynch syndrome.
Good thing my mother didn’t have that option , I think.
I see, I say.
Well, says the genetic counselor, i f we’re not going to take your ovaries, then there are some gynecological exams you can have. But they’re not very effective.
The genetic counselor’s tone makes me think that no one has ever tried to take her ovaries. I start to hate her.
OK, I say, Yes. I’ll do those.
You’ll also have a colonoscopy and an endoscopy, says the doctor. Mammograms, breast ultrasound. And every year, an abdominal MRI. We’ll have to lie to your health insurer about that one. What else?
Brain cancer! says the genetic counselor, like a pleased schoolgirl. You could test her for brain cancer!
Oh, OK, says the doctor. Shall I test you for brain cancer?
Sure, I say. Why not.
We go into an examination room. I sit on the table. He shines a light in my eyes, asks me to count backwards in 7s. He pounds my knees with a hammer. He tells me to get off the table and walk across the room in a straight line.
Like you’re a runway model! he chuckles.
I stare at the wall. I regret my figure-hugging dress.
You don’t have brain cancer! says the doctor.
Cool, I say. What are my chances of getting brain cancer?
2 to 3%, the doctor says.
That doesn’t sound so bad.
What are the chances in the normal population? I say.
Oh, says the doctor, much better. Like 1 in 10,000.
Oh, I say.
I’ll come back in a year. I’ll schedule an MRI, a colonoscopy, an appointment with a special gynecologist who will prod my uterus with a steel rod.
I need some fresh air, afterwards, so instead of getting on the subway to go to work, I walk for a while. I head south, along York Avenue. It’s a medical neighborhood, full of hospitals and the businesses that support hospitals. Home healthcare supply shops. Uniform stores. Diners that serve bland food. A couple of blocks further and there’s the Sloan Kettering Institute, huge gray cubes on either side of the street. They loom, waiting to swallow me up. I turn away from them, west. I pass a wig shop offering a wide variety of styles. In the front of the window is an old-fashioned updo, a thick swirl of gray strands caught up in a luscious bun. It’s displayed on a mannequin head that has the face of a fantasy Latvian supermodel. The head is on a turntable.
I stand for a while and watch the wig spin.
Sebastian is back in New York, returned from his life as a journalist in Iraq. We have dinner with his mother at her apartment on the Upper West Side, and then she goes to bed early, because she has just had a serious surgery. In a few days she’ll learn that she needs chemo, radiation, too. Sebastian and I have been friends for eight years, save the few times we slept together when we first met, before he told me that he was emotionally unavailable and I told him to fuck off, but that we could be best friends. Now, sprawling out on his neatly made bed with glasses of wine, speaking in hushed tones to avoid waking the patient, I tell him about Lynch syndrome, about the hysterectomy.
I’ll have a baby with you! Sebastian says. He is in the process of breaking up with his girlfriend; only recently did he decide that he wants to be a father, and now he is convinced that he never will be.
Ew, I say, no way will I have a baby with you. We need to diversify, not have kids with other cancer-y Jews.
I feel like I am in a Woody Allen movie, he says.
I think the surgical facility where I’m having my colonoscopy and endoscopy—or as they call it in the gastroenterological world, a “double”—is going to be fancy, because it’s on Park Avenue. But when I step out of the elevator I see that it is actually like a bus station, with long rows of seats upholstered in more hardwearing waterproof fabric. The seats all face in the same direction, towards a large television, which is playing a silent morning talk show starring Kelly Ripa. The expression on Kelly Ripa’s face is either joyful or enraged. The expressions on the faces of the people on the seats are either depressed or resigned. Like me, most of the people on these long rows have spent the previous evening drinking a gallon of laxative until they were shitting clear liquid.
This is a good time to live alone , I thought last night, each time I chugged back another glass of the laxative and each time I flushed, but really I wished that there was someone there to hold my hand and decant the gallon into a glass. To be obligated to pick me up from the clinic after the double. I am longing for someone to hear my colonoscopy joke. Friends who know I have the appointment text me in the morning to wish me luck, so I use the joke then.
How are you feeling? my friends write.
This is the first time in my life that I haven’t been literally full of shit, I write back.
I let the receptionist know that I have arrived and she says, Did you drink a laxative? and I say, Yes, and then she says, We’ll need a urine sample and I say, That will be a bit difficult because I haven’t consumed anything since midnight, in accordance with your instructions.
I am cranky, and dehydrated.
The receptionist just looks at me and hands me the kind of soft ridged plastic cup that you might use to get a drink of water from an office water cooler.
The bathroom is over there, says the receptionist. We don’t need much.
So I walk to the bathroom and pee in the drinking cup and then carry the cup, hot and sloshing, but with not much, back through the bus station. I’m done, I say to the receptionist.
Oh, says the receptionist, oh, and I think that probably she shouldn’t touch it without gloves, but then instead of taking it she gets her colleague and the colleague escorts me back through the bus station, and through a sort of bus station anteroom, to another room where there’s a big plastic bin. I set my cup in it, alone. It all seems unsanitary and unscientific, so I google it on my phone when I get back to my seat in the bus station: It’s a pregnancy test. Mine is the only drinking cup of pee because most of the people in the bus station are well into their fifties, or men, or both.
It’s my turn, eventually: A nurse ushers me into a windowless room with an accordion door made out of a material that is just a step up from cardboard. She hands me a gown, a voluminous no-color thing.
Change into this, she says, You can leave your T-shirt on, and your socks.
I put my arms through the gown like a pre-school art smock, and then fashion the remaining billowing fabric into a sort of wrap dress in the style of Diane von Furstenburg. I sit, and I wait, and then the accordion door starts pulling back and I think, Aha! It’s my turn! but the person pulling the accordion is an elderly man who is also waiting for his colonoscopy, and who seems quite confused. I look at him and he looks at me, we’re both wearing these wrap dresses, and then he staggers back into his own cardboard-doored area.
In time the anesthesiologist shows up. He sticks an IV port in my arm.
Wrap this blanket around your waist, he says, handing me one, and I do so, obedient, even though there is no chance that I am going to flash my bum at any of the other colonoscopy patients in the voluminous gown. Even though if I did expose myself to any of the other colonoscopy patients, I’m sure they would observe it with nothing more than a frisson of empathy. We’re all in this together, having cameras shoved up our asses.
In the procedure room I lie down on the bed and assume the required position, which is on my side and involves straps and which feels like the precursor to something sexually humiliating. My old pal the gastroenterologist comes in and for some reason he strokes my hair, as if I am a child, as if he is not still no more than two or three years older than I am. I’m not sure that it’s appropriate for the gastroenterologist to stroke my hair.
The doctor puts on a gown, and a face mask. He checks his phone. I wonder who texts a gastroenterologist.
Do you have any questions? the gastroenterologist says, when he’s done with his phone.
Yes, I say. How long will this take? Which is not really a question that I have but I feel like I should ask something, like at the end of an interview for a job that I know I don’t want.
Twenty to twenty-five minutes, he says, and then he says something about a colon being “carpeted with polyps,” and then I am waking up in the recovery area.
Someone says, It’s over, and someone else hands me a stack of paper. I drop it on my lap.
The gastroenterologist comes to see me.
You’re fine, he says, I didn’t find anything.
OK, I say. The anesthetic has not yet worn off enough to return feeling to my face. I try not to drool.
Yes, he says, you’re all clear. Some people who have Lynch syndrome, their colons are already carpeted with polyps. You can come back again in two years.
You love saying “carpeted with polyps!” I think, but of course I just say: Great, thank you.
So, says the gastroenterologist, how was your visit to the geneticist?
Not great, I say. He told me I have to have a hysterectomy. But I’m not going to do that right now.
Yeah, says the gastroenterologist. You know, I was thinking about you. And what I would do, if I were you, is I wouldn’t have a hysterectomy.
This strikes me as so incredible and kind, this man telling me that he wouldn’t have his uterus removed. I wait until the gastroenterologist wanders off to shove a camera up someone else’s ass, and then I lie back and stare at the ceiling tiles and I do some silent crying.
My friend Zoe is coming to pick me up. This is the rule of colonoscopies: You’re not allowed to leave unescorted. Waiting for her to arrive, I flick through the stack of paper. My discharge notes. No evidence of polyps, they say. Beware of post-operative bleeding.
I flip a page, and there in front of me is a selection of color photos of the interior of my colon, pink and clean and uncarpeted. A lovely colon. The colon of a previvor.
I squint at the photographs. I feel as if I have won something.