Register Tuesday | July 25 | 2017
Other Words for Cancer

Other Words for Cancer

Discussions of illness rely too much on metaphor. Why can’t we just say what we mean?

Kimberley Fu in a Vancouver park. Photograph by Seth Fluker.

In an advertisement on the side of a Seattle bus, a middle-aged man—the sort of tan, muscular middle-aged man often featured in health-related advertisements—gives his young daughter a piggyback ride. Her face is ecstatic, full of life. The text reads, “Someday, he’ll tell her about the time he had cancer. Past tense.”

The ad is from the Seattle Cancer Care Alliance. Imagine that little girl—not someday, but today—telling someone, “My father had cancer.” The past tense renders the sentence ambiguous: either her father’s cancer is in complete remission, or her father is dead.

My father has cancer.

Susan Sontag famously told us to stop thinking of illness in metaphor. Thinking of tuberculosis as the disease that eats through the souls of higher mortals leads to treating it with mountain air and a second breakfast instead of streptomycin and isoniazid. Thinking of cancer as hard nodules of repressed emotion demands that patients heal their own psychology rather than show up for chemotherapy treatments.

My mind is not strong enough to hear the word “cancer” and think only of uncontrolled cell growth—the damaged DNA that resists apoptosis, ignoring the call to martyr itself and save the larger organism. Language is not as rational and one-to-one as that. Like many words, “cancer” is clouded by images, the naked desire to make sense of the senseless.

I tell you that my father has cancer, and I have no idea what you hear. Do you coo with sympathy because it’s a random tragedy, like getting struck by lightning? Is it hereditary doom, a ticking time bomb that has finally reached zero? Or do you hear a punishment for poor lifestyle choices, toxic exposure to modern excess?

Perhaps there is no such thing as a truly random tragedy. When someone is struck by lightning, we want to ask them where they were standing in the field, what metal object they held in their hands.

These are the time markers of the last year: my father’s “flu”; his diagnosis; his brain surgery and radiation treatment; targeted treatment, which failed; first-line chemotherapy; maintenance chemo when we thought first-line had succeeded; second-line therapy when we realized it hadn’t.

Just after my father’s diagnosis, I took up running. I started out covering five kilometres per run. With the help of a friend, it didn’t take long to build up to twenty-five kilometres on a long run, fifty kilometres in a week. My friend runs out of pleasure and vanity; she covets speed and a runner’s body. I run out of vanity and something else, something like vanity but nearer to fear.

My favourite thing about fitness is the numbers—the endless inadequacy. Every week, you add more kilometres, more weight, more reps. You start out unable to do a chin-up, then you can do one, then three, then ten. Your abdomen divides like uncontrolled cells, into two, then four, then six—then, skipping eight, into a spread of tiny, indivisible muscles. Your solar plexus widens and deepens into a shallow pool. A line stretches from your armpit to the crook of your elbow like a new seam. Your back collapses into an inverted pyramid; your shoulders broaden and jut from your arms. It is the pursuit of the divine. If I run twenty-one kilometres, I am good. If I run forty-two, I am a saint.

I love the words for visible muscle: cut, ripped, jacked. My running partner called me “bulletproof” and I love that best of all. Superman’s broad chest, shotgun scattershot bouncing off like hail. Someone told me she’s afraid of my routine because she’s afraid of looking unfeminine. That word delights me too. Invulnerable. Above disease.

Dear Susan Sontag, please tell me the secret to not thinking in metaphor. I have started thinking of my body as a candle—a single rope of muscle encased in wax. The ideal body has melted all its fuel and is reduced to immolating itself.

Two days after my father’s first chemotherapy session, he roasted a whole turkey. Without my knowledge, he used a roasting pan he’d found in my apartment. I only got the chance to explain that it came from the dollar store after the sides had collapsed under the turkey’s weight. The kitchen floor greased all our socks black, and the oven smoked like a volcano. As a family, we dragged the turkey out, butchered it roughly so it would fit in a series of casserole dishes, cleaned the oven and finished cooking it.

We brought the turkey to a Christmas dinner with our extended family. The disaster could have been a funny story, but none of us chose to talk about it. As we were eating, one of my uncles slapped my father on the shoulder and said, “At least you still have your appetite!”

Why was this so horrifying? He didn’t even use the word “cancer.”

Sontag reminds us of a time when doctors believed telling patients they had cancer was what killed them, that the word itself was a curse. They would tell the patient’s family, not the patient. Doctors’ bills arrived in discreet, unlabelled envelopes. In eulogy and obituary, people died of “long illness.”

In an episode of the show Science Diction on National Public Radio, Ira Flatlow interviews Dr. Howard Markel about the etymology of the C-word. They call it that: “the C-word,” on par with the N-word and the F-bomb.

Cancer: from the Greek karkinos, or crab. The creature’s association with the disease began with Hippocrates and predates the constellation. Different sources give different explanations for the connection between malignant tumours and crabs. Perhaps it’s the hardness of lumps under the skin; perhaps the tenacity of a crab’s pinchers compares to the difficulty of extraction.

The most vivid and disturbing explanation is the story of first-century doctor Aelius Galenus. While dissecting a breast tumour, he noticed that the veins and blood vessels of the tumour extended out into the body, spreading their evil. He thought they looked like crab legs.

When I was twenty, I took part in a psychology experiment on pain. The researcher strapped a heat thermode to my calf and sat down across from me at her computer. She pressed a button, making the thermode hotter and hotter, as a camera filmed my facial expressions at close range. “Tell me when it hurts,” she said.

I stopped her when my leg felt unpleasantly hot.

“No, no,” she said. “That’s way too low. Pain is distinctly different. I’ll show you.” She looked at the screen and away from me as she jacked it all the way up.

I gasped. It was stunning, nauseating. It reminded me of the moment when an opera singer hits a high note and sustains it. The orchestra stops. The audience holds its breath. The longer it goes on, the purer the note becomes, until it’s just a high-frequency sound divorced from the music that preceded it and the music that will come afterward. That’s pain.

I didn’t know what pain was.

In the final part of the experiment, they rolled me into an MRI machine with the same thermode attached to my leg. In spite of my best efforts to stay still, I jerked away from the thermode with each shock, as though I could escape something strapped to me.

And years later, when my father couldn’t come up with a way to describe the relentless sound of the inside of an MRI machine, I could say, “Like a dot matrix printer.”

It’s easy to say, “Everything causes cancer.”

Overexposure to sun causes skin cancer. Smoking causes lung, mouth and stomach cancers. There are isolated genes implicated in breast cancer and colon cancer. HPV and cervical cancer. Hepatitis B and C and liver cancer. Epstein-Barr and lymphoma. Asbestos and mesothelioma. Pesticides, radiation, arsenic.

These answers are unsatisfying. The real questions—What can we do? What could we have done?—go unanswered. How delicious are the news stories that tell us blueberries prevent cancer, that water bottles cause cancer. They grant us so much power; we are invincible until we’re not. If I burn through what fat is left on my triceps, if I become an ultra-runner in the Nevada flats, will I outrun death?

My father’s hair grew back slightly patchy and uneven, like a trendy, age-inappropriate haircut. He has done some contracting jobs. He drives, sometimes. He has been diagnosed for just over a year. In all the tests, there have been few clear signs of recovery or degradation. He gets better and worse. There are good days and bad days.

In the encyclopedia of my mind, cancer is filed with diabetes and HIV—something to be managed every day, precarious but not immediately lethal. It is not shelved with, say, chicken pox—something acute that can be cured once and forever. Nor does it belong with Alzheimer’s and its slow, inevitable decline. There is no difference, to me, between a drug that might “extend” my father’s life, and one that has the vague promise of remission.

You survive a late spouse. You survive a natural disaster. You survive a plane crash. You survive a mass killing. You survive a war. We call people survivors to call attention to the fact that they’re alive, and that others are not—to express our surprise. You’re only a survivor when the danger has passed, when the flood has receded, the gunman has fired his last round through his own brain. We say “cancer survivors.”

A ninety-year-old woman at my mother’s church has cancer in her bones, said to be the most painful location, and she runs on a treadmill a few times a week. Lance Armstrong won the Tour de France seven times, even after being diagnosed with testicular cancer. The median survival time of pancreatic cancer is only three to six months.

Sometimes I forget for an entire day.

Cancer staging isn’t progressive, the way it is on TV medical dramas. My father was a Stage IV case from the beginning: widely metastasized in multiple organs. Stage IV was once referred to as “end-stage” cancer, the point of no return. Today, it’s not uncommon for a patient to jump backward between stages. If there is only secondary cancer in one location, and it’s successfully removed, then we’re back to Stage II or III. If the whole system is treated successfully at once, a patient can go from Stage IV to Stage I. Someone who still goes to work full-time and someone whose skin has started to dissolve can both be Stage IV.

There are location-specific grading systems and tumour markers that are more meaningful, but there’s still no shorthand for talking about cancer. When people ask me how my father is, I can’t answer with his carcinoembryonic antigen number. I can say: He went to a party. He’s been sleeping since Wednesday. He roasted a turkey. He’s still alive.

Film critic team Gene Siskel and Roger Ebert both experienced cancer in the public eye. In 1999, Siskel went out tight-lipped with a velvet curtain drawn over his dignity. He didn’t tell anyone outside his immediate family about the nature of his disease. Until a week before his death, he continued to attend screenings and film episodes of their television show. Not even Ebert spoke to Siskel about his deterioration directly, in spite of his obvious pain and their fierce, decades-long friendship. In Siskel’s on-air memorial, Ebert said flatly, “He died of an illness he’d been fighting since last May.”

Then, in 2007, Ebert wrote a column for the Chicago Sun-Times before his upcoming appearance at his eponymous film festival, Ebertfest. “So let’s talk turkey,” he wrote. He spelled out his most recent surgery: cancer of the salivary gland had spread to his jaw and required part of it to be removed. Much was made of the full-page photo of Ebert published in Esquire magazine last year, with his sagging, empty chin, but Ebert has defiantly posted pictures of himself from day one: bandages around his neck, a false smile forced by gravity and swelling. In that same 2007 column, he wrote, “We spend too much time hiding illness.”

As surgery after surgery to restore his speech succeeded only in damaging the other parts of his body harvested for bone, Ebert was in the unusual position of a celebrity expected to talk about cancer while being physically unable to speak. He wrote copiously and intimately on his blog. He posted a full-body scan of himself that was done just before his diagnosis, when he was overweight, to remark on the irony. He invited Esquire writer Chris Jones into his home and his life. Jones’ elegiac portrait included graphic detail of Ebert’s treatment history, and Ebert wrote a glowing response. While Siskel had clung valiantly to his responsibilities and life as usual, Ebert wrote of accepting his disabilities and establishing a new existence. After a heartbreaking anecdote about asking his caretaker to eat his ritual breakfast at Cannes for him, he noted, “But you can see there is something perverse about such persistence. Better to make a clean break with the past, and clear your mind of the things you can no longer do.”

We could attribute this to the internet age. In the brief years between Siskel’s death and Ebert’s blog, our notions of privacy have changed dramatically. Ebert himself admits to initially thinking that Twitter “represented the end of civilization,” and, as of this moment, he has tweeted over twenty-two thousand times. Technology played a role, but as a beloved, public figure, Ebert also made a choice. We demand to know how he’s doing, and he tells us. “I have books, movies, newspapers, magazines, television,” he blogged. “I write more than ever. The social media are more social for me than for most people. My troubles haven’t prevented me from participating in our new TV show. I would like to have a dog, but I can’t walk one.” He’s still alive.

The Canadian Cancer Society reported that 62 percent of cancer patients lived at least five years after their diagnosis, up eight percent between 1994 and 2006. The Centers for Disease Control and Prevention reported that the number of cancer survivors in the United States had increased from three million in 1971 to 11.7 million in 2007, the last year for which data is available.

I asked a friend what he would do if he had five years left to live. My friend is smart, successful, ruthlessly ambitious; he’s not above leaking things a girlfriend said to him in confidence to the New York Times. I expected him to talk about legacy.

“Move back home,” he said. “See my old friends. Live with my family.”

But it isn’t five years. It’s an unknown, finite amount of time—for all of us, cancer patients or not. What is cancer, then, but a heightened version of the human condition?

That sounds nice, doesn’t it? “A heightened version of the human condition.” Sontag would have my head on a platter. Oh, noble cancer! Blessing in disguise! An opportunity for growth! That must be why it happens—to remind us all of our frailty, of our mortality, and to seize every day! The universe has logic and God is good!

In the Journal of Clinical Oncology, Gary M. Reisfield and George R. Wilson encourage their fellow oncologists to be mindful of the metaphors they use in speech, and of the effects those metaphors have on patients. They’re especially critical of the “martial metaphor”—talking about cancer in terms of war and violence—that is present in nearly all discourse, from support groups to pharmaceutical ads. We’re used to pink breast-cancer boxing gloves. The modern obit tells of a “battle” with cancer. We come back to blame. The war metaphor implies that all we had to do was fight hard enough, and choosing to die amounts to desertion.

Reisfield and Wilson prefer more upbeat metaphors: a dance, a journey, a marathon. Physicians are no more than guides on a road with many turns and forks, the ones who hand out paper cups of water at the way stations and cheer at the finish line.

I won’t let you get away that easily, doctor. Have you ever run a marathon? It is a lonely test, the climax of months of self-inflicted pain. That’s what’s fascinating about runners, especially the ones who show up at the finish line half-dead with shit down their legs: they did it to themselves.

You can train with others, but you always race alone.

I lied earlier. I was glib. I did not do one pull-up, then three, then ten. I plateaued at seven, and again at ten. I kept an Iron Gym mounted in my bathroom doorway so I couldn’t go in or out without doing chin-ups. I ate obscene amounts of protein. I mourned the conversion of my breasts into pectoral muscles. The first time I ran twenty-five kilometres, I wept openly on a forest trail. But I am healthy. I choose this metaphor.

Terry Fox ran a marathon every day for 143 days. And in spite of the cameras, the camper van and the teary-eyed Canadians lining the roads and greeting him in every city, it’s not the pain but the loneliness I find unimaginable. Everyone watched. They opened their hearts and wallets and he left a changed world behind him, more beautiful, more aware. But beauty is not a cure for shin splints, for cysts or inflammation. For cancer. Beauty exists in grand ideas, in sky, in metaphor. Down on the ground, there lie the culpable dead, the blameless dead. Down on the ground, there are still reverberations of diseased bone hitting asphalt. There is still one step and then another.