Violation (27 page)

Woven through all this is what we call fatigue. Cancer causes fatigue, and so do radiation and hospitalization and surgery, and so does chemotherapy. It is not a matter of being tired or depressed but something much more mysterious. Fatigue means a loss of vital energy, what some might call life energy, animation, reserve, or power. If you are tired, you can still run up a flight of stairs in an emergency. If you are fatigued, you may not be able to do that. Wanting has nothing to do with it. Just when you need a little extra, there is that much less.

I wonder sometimes whether this is one way the spiritual distress of cancer manifests in the body. We talk about contributing
factors like anemia and malnutrition; we counsel light exercise and careful planning. But what about the loss of one's identity? What makes the self a self? With cancer and its treatments, the aspects of identity erode like sand in a tide, inexorably, constantly. You are a person who does things (work, family, hobby, art, sports), a person who fills roles (plumber, father, singer, tennis player), a person with an interior life unlike any other, and it all disappears. Who are you without these things? Who is the person who can't read a book or tie her shoes, can't make love, cook supper, or follow a conversation—who may never do such things the same way again?

OF ALL THE
effects of chemotherapy, that pesky therapeutic index is what keeps the nurses vigilant. When people die “of cancer,” it is often not the tumor that kills them. Cytotoxic drugs can cause severe allergic reactions. They can damage every organ, including the eyes and ears and brain. They can decrease the contractility of heart muscle, make the lung tissue fibrous, erode the bladder wall so that it hemorrhages. They can, they have to, take people out along an edge no one really wants to walk.

Most cytotoxic drugs damage the immune system to some degree by damaging the bone marrow. This is called myelosuppression; it follows the active weakening of the immune system done by many cancers and can be lethal. A myelosuppressed person has too few specialized cells to fight infections, too few red blood cells to carry oxygen, and not enough platelets for clotting. Many people need blood and platelet transfusions. Sometimes, at a certain point in the collapse of the marrow, the chemotherapy simply has to stop until the person recovers.

Infection is the most worrisome problem. The nadir for blood cells can begin a few days after treatment or weeks after treatment, and last a long time. People in severe myelosuppression can die from the normal bacteria on their own skin and in their gut, from a fungal spore on their pillow, a bit of mold from a vase of flowers, from a kiss. Suddenly outside the pale of ordinary
life, they die of themselves, and the world. To protect themselves, people bathe every day, wash their hands constantly, wear surgical masks, avoid fresh produce and flowers and pets and children and crowds. To avoid bleeding, they don't use razors, dental floss, or tampons, or walk barefoot or have sex.

In a neat reversal, this dangerous state is induced deliberately for stem-cell transplants. Stem cells are both parent and child, able to become many kinds of cells, depending on the body's needs. Healthy marrow is always making stem cells. Autologous transplant is used mostly to treat cancers of the blood, like lymphoma, some leukemias, and multiple myeloma. It means harvesting the patient's own stem cells, deeply suppressing the marrow and cancer together, and then reinfusing the cells to kick-start the immune system.

When I first began working on 5-K, I made the common mistake of assuming that the transplant was the treatment, but in fact it's the antidote. The real treatment is the very high-dose chemotherapy given first, the most intense chemotherapy a person can tolerate, a dose that is intended to destroy the bone marrow. Without an infusion of stem cells, the person will most likely die from overwhelming infection or hemorrhage. We call the infusion a “rescue.”

A person's cells are harvested by a special machine that filters stem cells out while circulating the blood, and the cells are then frozen. A few days or perhaps weeks later, the person moves into one of the big, specially filtered rooms and starts the chemotherapy, which is tenderly called ablation.
Ablate
means
to remove, to melt, to vaporize,
and with that, the countdown begins: Day –3, Day –2, and so on. Day Zero is when the cells are infused.

On Day Zero, the stem cells are thawed in a saline bath and injected into the patient's bloodstream with big syringes. There is a little tension in the air during the infusion—a kind of excitement, almost of celebration. Day Zero is a long-anticipated, hoped-for, feared day. One woman—the hiker who could no longer walk without an elaborate brace, her bones turned to cottage cheese from
multiple myeloma—had her husband videotape the procedure. I tried to imagine watching it at home, over popcorn.

Transplant is a struggle; patients are usually in the hospital for several weeks. It is only after the infusion that the side effects of the chemotherapy really kick in. Day +4, Day +7, and on and on. The patient feels wretched and can do nothing but wait for the cells to settle in the marrow. The transplant rooms are large because people need to stay in there; they have no immune system, so they need to avoid as much of the world as they can. They have big dry-erase boards with calendars on them, and many keep track of their daily blood counts there. They read a little and watch television and sleep, and wait. And wait, watching the numbers.

Chemotherapy can be horrible and it can be a breeze, and it is usually something in between. The side effects I've listed here are horrible; I find them hard to read. Is the life that follows the reward for all this suffering? Or is the difficulty itself a gift? I know that people suffer here. They also survive. Their hair falls out and then it grows back. They throw up, they lose weight, they feel weak, they feel embarrassed, and then they get better. People get better. People get well. People go home.

AFTER HER DIAGNOSIS
of colorectal cancer, Lee started weekly chemotherapy and fell into a rhythm of anticipation and recovery. On Wednesdays and Thursdays she'd have treatments and then rest for a few days. “On Sundays, I felt okay,” she told me. “Mondays, I felt okay. On Tuesdays, I'd start crying.”

All of Lee's boundaries blurred together. She was a patient on 5-K after surgery; the nurses she supervised were bathing her. Her friends were giving her orders. “This is a journey, a path, and you do it with courage and dignity,” she says now. “But let me tell you, my courage was dwindling—and my dignity! Now the peers who usually sit across the table from me are looking at my butt! I found it very humbling.”

We were sitting in her cluttered office in the center of 5-K when she told me this. Now and then the telephone rang, or a
nurse poked her head in to ask a question. Lee had changed with treatment. Her blonde-highlighted hair was sparse and gray under a wig. She'd lost both eyelashes and eyebrows. Her tattooed eyeliner had sloughed off with a lot of other skin, and her face was coarse and spotted with brown pigment and tiny pimples.

“I said to Walter, ‘Look, I have to have cancer. Do I have to be ugly, too?'” She smiled grimly. “I woke up one day and thought,
Oh, my God—I look like a cancer patient.
And that's one thing I didn't want to look like. I'd look in the mirror and think,
This person could die
.”

“Was there ever a point when you thought, ‘It's not worth it?'” I asked. “No,” she said, without hesitation. Then she looked into the distance for a moment. “Maybe.”

There is a side effect little discussed by physicians and nurses, though it is a topic of much conversation among patients. “For me it started with words,” Lee says. “I couldn't find the word, and I'd have to describe something. I couldn't work out if I was confused. I had to write notes a lot more. I'd forget things.”

Patients call it “chemo brain.” It was dismissed for a long time by doctors as a symptom of stress, but oncologists now accept that cognitive dysfunction after chemotherapy is rather common and surprisingly durable. So little is clear in Chemo World. In unusual, complicated, and not well understood ways, chemotherapy affects the brain. It causes not only changes in function—electrical activity, chemistry—but sometimes in structure, reducing the amount of white and gray matter. The effects are usually subtle; people complain of difficulty finding words, remembering what they've read. Many find it hard to do more than one thing at a time and frequently complain that they have a harder time doing arithmetic. Studies only now being done make it clear that the effects can last at least ten years after treatment and perhaps for good.

At what point are you no longer yourself? What is worth dying for? “Chemo brain is scary,” says Lee now. “You think to yourself,
What if it doesn't go away? What if I'm going to stay this way?
We've had patients who we've taken so far out, and it seems
like they didn't come all the way back. It scared the hell out of me. I'm still a little scared.”

CHEMOTHERAPY IS USUALLY
, but not always, given intravenously. It may be given over a few minutes, in an infusion lasting a few hours, or continuously for days. It may be given once, or on a schedule over months, but it is a ritual act. Because the drugs are teratogenic and carcinogenic, they are considered hazardous waste. Nurses and pharmacists who handle the drugs regularly are at risk of absorbing toxic amounts through the skin or by tiny, aerosolized droplets. On 5-K the actual drugs are only opened under a ventilation hood, and once the bags are mixed, they are specially packaged and carried with chemoprotective gloves. The nurses hanging the bags wear chemo-protective gowns and goggles as well.

I learned to give chemotherapy over time, first by study, then by observing, then by being observed. 5-K follows the standard method set by the Oncology Nursing Society. Patients are weighed and measured twice before beginning a cycle, and each day it continues. Their most recent laboratory results are double-checked before each dose, which is usually based on body-surface area. Many cancer drugs can irritate veins, and a few can destroy muscle and skin, so the patient has to have a new or central intravenous line, if possible. (If the drug infiltrates the tissue, we treat it as an emergency.) The original medical orders, doses, and calculations are checked by two RNs and a specially trained pharmacist. The drug vials are double-checked. Everything is cosigned in several places. Finally, the patient is usually given pre-medications, to prevent nausea and other side effects.

When I prepare patients for their dose, I always warn them that I will be all dressed up when I bring the drug. I am sometimes rather formal and serious. I try not to use buzzwords, technical terms, or codes. I try not to say “chemo.” “When I bring in your medicine,” I say, “you'll see me in special clothing. This is
because the drugs are very strong. This is a good thing.” This is a good thing, I tell myself.

I come in, gowned from neck to knee, carrying the drug—the hope, the fear—in a special bag, carefully check the IV and the patient's name and birth date, and lay out my equipment. Then I hook it up to the pump. Chemotherapy is given in precisely calibrated amounts, literally drop by drop, and so we use pumps that control the flow. I label and tape the connections carefully while the patient watches, waiting. Sometimes we chat, but neither of us is fooled. Later, when the drug is done, I take it down with the same care and dispose of all the equipment in a special container in a locked room.

The ritual changed with a patient with mental illness. She believed that she was allergic to many substances, including normal saline. Over the course of several difficult shifts, I had to find a way to give her a drug that could only be diluted in saline, when she insisted on dextrose. I didn't want to lie to her. I set up an elaborate (mostly dead-end) system of tubing and bags and asked a pharmacist given to incomprehensibly complex explanations to come in his white lab coat and explain it to her. She was impressed and bedeviled and let me give her the drug, and I was pleased and a little ashamed.

Before I was allowed to give chemotherapy, I had to prove my skill. I also had to come to terms with what I was doing, knowing what would follow, knowing people would suffer, knowing many people would die anyway, knowing I was hanging up poison. One of the open questions about chemotherapy is when to stop. Brendan Curti, one of the oncologists who sends his patients to 5-K, says, “Some patients view the chemo as a prolongation of pain. Some patients view the chemo as part of their quality of life. And there are people here”—he rolls his eyes toward the rest of the office complex—“who think that doing everything we can means chemo until the last day of life. I don't.”

I had seen my mother die from breast cancer after a double mastectomy, radiation, and chemotherapy. The last year of her life
was misery, and she kept hoping for a miracle, doing whatever the doctors said. Part of my job here is honesty, but a lot of it is having the strength not to impose myself. My integrity includes giving other people theirs—the right to make choices unlike the choices I might make in their place. Some patients are in denial, others are not entirely competent. In an important way, whether or not one of my patients wants more chemotherapy when it's probably hopeless is really none of my business.

JEFFREY MENASHE SPENT
a summer vacation in Kenya training oncology staff in a teaching hospital, where he saw people die for want of blood transfusions that we do routinely. Menashe specializes in treating hematological cancers and abnormalities of the blood, and many of his patients have leukemia. With leukemia, he says, the first issue is whether to treat at all; by the time of diagnosis, the blood may be more cancer than not, so sludgy with white cells that it can't move through the capillaries. Without chemotherapy, leukemic people can die within a month of diagnosis, but the treatment is hard to take and hard to survive. With most leukemic patients, the line between the devastation of the disease and the ruin of the drugs can be quite fine.