Modern cancer treatment is itself a ritual from which the sacred dimension has been removed. It prescribes a rigid schedule of activities that is oddly like a religion and one that operates according to a quasi-sacred logic, but from which something crucial is missing. Cancer treatment puts you on its own cycle of depletion and rebirth: every week it kills you a little in order to give you life; every week it brings you to the edge of despair in order to prepare you for the possibility of good news. And before you know it, you are a devout member of a church you never meant to join. You become an expert in recognizing the vestments of its high priests and the stigmata of its saints. You learn how to move your body through the color-coded stations—from dermatology to radiology to oncology to hematology to the treatment suite and out the glass doors to the parking deck.
Soon you enter a new linguistic world and acquire a specialized vocabulary. Not only do you master the names of unfamiliar drugs and treatments, but you learn new and more careful ways of using the old words. You develop a rich thesaurus of synonyms and circumlocutions for death. You say, “If I’m out of the picture,” or “If I’m not around,” instead of “When I die.” You translate your childhood belief in divine miracles into an equally fervent belief in medical miracles. You retain your ability to hope, but you learn to prune that hope with tasteful realism.
You become habituated to your new church’s practices with such devotion that even the slightest deviation deranges your universe and produces spasms of anxiety. “The saline solution is always administered after the Taxol and carboplatin. Why did she give the two together? My treatment always takes three hours. Today it took only two hours and forty minutes. What can this possibly mean?”
The religion of cancer treatment holds out the carrot of survival. It confuses the prolongation of life with salvation. If you live exactly sixty months plus a day, you will be numbered among the saved.
Many cancer specialists speak of the disease in language once reserved for the devil or mortal sin. In the best-selling How We Die, Yale surgeon Sherwin Nuland raises the curtain on a scene of such depravity that Calvinism appears optimistic by comparison. In his chapter “The Malevolence of Cancer,” he denounces “our old enemy,” which, “far from being a clandestine foe, is in fact berserk with the malicious exuberance of killing.” “Its first cells,” he continues, “are the bastard offspring of unsuspecting parents who ultimately reject them because they are ugly, deformed, and unruly.”
Faced with this stinking bastard of a foe, the victim’s response must be equally aggressive. But there is a catch. The object of our hatred is a part of the patient’s own body. Cancer does not invade from the outside; it is a palace rebellion among the body’s own Praetorian Guard. The fighter’s instinct is a powerful motivational tool, but by giving the disease a persona and pretending it has conscious drives and malevolent purposes, we demonize our very selves.
And when the battle is won, as it is with an increasing number of cancers, what then? The successful treatment of those whose only metaphor has been fight or, in the language of one online survivor, kick butt, leaves the victors with no vocabulary with which to thank God or express astonishment at the grace of being alive.
One of the unintended consequences of the jihad on cancer is that the cancer specialist, with years invested in sophisticated weapons research, attacks the disease but fails to treat the person. The disease has the single surname, cancer, while those who suffer from it are legion with a multitude of needs and stories. The individual’s identity subtly shifts from that of a person to a site for observation, treatment, and further study of the disease. And when the barbarian horde of invaders finally takes over, as it did in Adam’s case, and the battle begins to go badly, the first person to retreat is often the oncologist, who abandons his or her patient to the palliative-care people and disappears from the patient’s life.
Adam began his treatment with a dermatologist in Wilson who quickly referred him to a surgeon in Durham from whom he was sent to an oncologist, and thence to a second dermatologist, a radiologist, a hematologist, another oncologist, and several other specialists in diet and pain relief. Each addressed the appropriate sector of Adam’s body with utmost professionalism. Devotion to their work was never an issue. What was missing from this parade of specialists was an abiding center, a physician, whose very title bears age-old cultural and even religious resonances, whose care for my son would persist through his many treatments and the rapidly descendant stages of his life. I yearned for someone with the vision to see him whole, and the compassion to see him through.
A young oncology fellow named Tim came closest to fulfilling this role during Adam’s illness. He and Adam became friends, and Tim was willing to allow his human feelings for Adam to penetrate the veil that often separates doctor and patient. He was in the room when the oncologist outlined the treatment options for metastatic melanoma. Only a few hours earlier, before the final round of tests had begun, it was Tim who made the rare (for a physician) declaration: “You are cured, Adam. I just know it.” From a scientific standpoint, he could not have been more wrong; from a human one, he spoke the heart’s truth. A few weeks later, his rotation ended, and as Adam entered a new phase of treatment Tim moved on to a new specialization in another city.
Against the “malicious exuberance” of the enemy, medical science pursues its own version of the nuclear option. Whole-brain radiation is administered when the cancerous lesions and cells have diffused throughout the brain. Radiation is no respecter of cells; it incinerates the good with the bad, the healthy along with the malignant. In the brain perfectly good cells are thrown into the fire along with their destructive brothers and sisters.
The side effects of whole-brain radiation rival the symptoms of the disease itself: skin irritation, hair loss, hearing problems, nausea, loss of appetite, growth defects, neurological impairment—and more brain cancer. Longer-term effects include confusion, problems with memory, and personality changes. Half of those who survive for two years are affected by dementia.
If whole-brain radiation is successful in curtailing the growth of the cancer or reducing it to a few defined tumors, stereotactic radiation may send its laser-guided knife into the crosshairs of the tumor itself. A National Cancer Institute study determined that brain radiation alone produces a median overall survival rate of 12.1 months. When radiation is combined with a powerful and expensive drug marketed as Temodar, the median overall survival rate for those with metastases to the brain soars to 14.6 months, a gain of 2.5 months. For those whose melanoma has spread to the liver, bone, and brain, as it had in Adam’s body, the median life expectancy is 4.4 months.
The immediate effect of Adam’s two forms of treatment followed the medical literature point for point. The skin on his face and head was left reddened and burned. He suffered the predicable nausea, exhaustion, and hair loss. He began moving and speaking at a slower pace, but his mental ability was not impaired. By the end of his treatment cycle, he was too weak to drive or walk the dogs.
The dialectic of dying in order to live originated on ancient slaughter stones. Its logic continues as the essence of traditional cancer treatment. It is hard to imagine that future generations will not associate the devastating effects of chemotherapy and radiation with the age of “Heroic Medicine” in the seventeenth and eighteenth centuries. One day these treatments will join bloodletting, intestinal purging, blistering, and prefrontal lobotomies in the museum of dangerous and discredited therapies.
In the meantime, such treatments are keeping people alive who would have otherwise died. I hear the grateful testimony to chemotherapy and radiation from dozens of acquaintances, whose lymphomas, brain tumors, and breast cancers have been successfully treated and whose diseases have migrated from the hopelessly “terminal” side of the ledger to the “treatable” and even the “chronic.” I see them with their hair grown back and spirits restored, their lives extended beyond their wildest dreams. I watch them go hiking on the Appalachian Trail and take their children to Disney World. My closest friend writes of his grandchild’s treatment for brain cancer: “Sighs of relief and thankfulness to God for a miracle called radiation.”
The treatment suite in the Morris Cancer Clinic was a series of low-ceilinged rooms with no windows and no medical equipment to speak of except for two nurses’ stations and a forest of IV poles. The individual rooms were crowded with beige Barcaloungers grouped at odd angles and arranged like displays in a furniture store. Each patient was permitted one companion who was seated in a straight chair beside the recliner.
Scores of patients were jammed into tight quarters; yet the suite’s most memorable characteristic was its eerie silence. Conversation was nonexistent or deeply muffled, as if the walls were constructed of leather and the floors of cork. The room reminded me of a lock ward designed to help its inmates absorb the unabsorbable. A few curtained alcoves held beds for those too weak to sit for their treatment.
Some of the patients showed up in sweats, as if to treat these few hours as grunge time or a trip to the gym. Others dressed for the occasion in order to meet the enemy at their very best. Some read or chatted quietly with a friend or spouse, while others, like Adam, dissociated from the scene around them and slept. Adam slept aggressively as if willing the room into nonexistence.
One day a middle-aged woman dressed in a clown suit with an orange wig, rouge, and bulbous nose walked through the suite. She stopped at each recliner to offer cookies and juice and to make small talk. I felt for her; she was probably a well-intentioned volunteer, but the clown thing just wasn’t working. As she passed Adam’s chair, he opened his eyes long enough to see the source of the moving shadow, then closed them again and turned away from the lady clown and into himself with a hardened absence of expression I had never seen in him.
For all his powers of dissociation, Adam managed to befriend a fellow patient, a man in his midthirties who was being treated for advanced cancer. He was falling apart with fear and worry for his wife and child. When Adam met him he seemed to be having an anxiety attack, repeating again and again, “I can’t do this, man, I can’t do this.” He said he was considering ending his treatment and committing suicide. I heard Adam say, “Give it three days and you’ll feel better. I promise you.” After that, he always looked for the fellow in the treatment suite and continued to encourage him.
During his weeks at Duke I kept my eye peeled for fathers like me with children in treatment. I spied a man my age with a son who might have been a few years younger than Adam. The younger man was wan and white and completely bald. He wore a white V-neck t-shirt every day and bleached-out trousers. He moved around the suite as if he were made of porcelain. I paid close attention to the father’s eyes, how they followed his son with militant sadness. Whenever the boy moved, the father moved with him just to his left and a little behind him. They were like two dancers who have been together a long time. I tried to picture Adam and me at that stage, when I would be the custodian of his pale shadow and we too would move as one. But when I succeeded in imagining it, I frantically blocked the thought of it.
I only saw these people—the scared young man, the pale boy and his father, the clown, the nurses—within the closed universe of the treatment center. Never in the parking deck, the supermarket, or a restaurant. Never above ground in the land of the living. Once I did run into one of Adam’s doctors on a Saturday morning in a local diner. He was sitting at the counter eating breakfast with his little boy. We were so amazed to see each other out of context we hardly knew what to say. How could he be the unquestioned authority on all things, and I the supplicant father of a dying child, when we were sitting across the counter from each other eating oatmeal?
The treatment of cancer is one of the last bastions of segregation. It takes place in a secret Zombie Church with low, leaded rooms, coffin-like scanners, draughts of poison, and skeletal dancers. First, you enter it; then it enters you and possesses you. “I am in the hospital even when I am outside the hospital,” a cancer patient complained, reflecting on the mental tyranny of cancer. Flannery O’Connor once wrote that being sick was like visiting another country. Inevitably, however, the place to visit becomes your place to live. One day Tracy and I were sitting in the hematology lab waiting for Adam when she said without elaborating, “We are really in it, aren’t we?”
The very word “cancer” infects our language and imagination. If you want to say the worst about any crime, blight, or prejudice, you will call it a “cancer” on the body politic. And the one with cancer—genuine cellular cancer in his actual physical body—bears not only the disease but the weight of all its ugly associations. Susan Sontag, a onetime cancer survivor herself, was right: there really is nothing more punitive than to give a disease a meaning. The one with cancer becomes a cancer on the human community, a byword, whose plight is whispered by all who pass by:
Terminal,
thin
sick
so young,
so sad
so sorry,
(did he smoke?)
Shh.
Most cancer patients respond to their disease in one of two ways. Some heroically continue their daily routines as best they can, rearranging their work according to the rhythms of chemotherapy and the necessary downtime for recovery. You see them in their bandanas, baseball caps, wigs, and shawls, carefully selecting the ripest avocado in the store or quietly catching their breath between tasks at the office. They squeeze the simplest pleasures from each livable day. They cut the lawn or play nine holes and take a nap; they defy the devil and go dancing, then take it slow the rest of the week.
Others go into semi-seclusion, perhaps because they have sensed the recoil among healthy people to those who are thin, pale, and hairless. As Kafka said of the reactions to his own terminal illness (tuberculosis), “Everyone drops into a shy, evasive, glassy-eyed manner of speech.” Those who are ill follow their schedule of treatments, but they are rarely seen outside the home and their circle of family and close friends. They endure by nesting with the disease.
There is an alternative to the shame and social isolation that many cancer sufferers experience. The best dying is done in community, if you can find the right community. Long ago when I was a pastor, a young woman came into my study one Sunday and asked somewhat aggressively, “What does this church have to offer me?” I should have paid closer attention to her eyes, but like a fool I reeled off the most attractive features of our program and facilities. She said, “Well, that’s nice, but I’m looking for someone to help me die. Do you think your church is up to that? And what about you?” she asked, calling me out. “Is that something you could do?”
This is something the church is supposed to be good at. Its liturgy welcomes everyone to the feast. “Come unto me, all you who labor and are heavy laden, and I will give you rest,” Jesus says. “Eat and drink with us,” we say. “You are no freak and we are not freaked out by your suffering.” The liturgy of life offers the kiss of peace to everyone, including the pale, the scabrous, and the very skinny. We name and lament our diseases before God and do not conceal our bodies. We are not ashamed.
Cancer Church knows only two categories—dead and alive. Adam was looking for another category and another path. This is the path that ventures beyond survival (which is nothing to be sneezed at) and promises blessedness. When Jesus said, “Blessed are the pure in heart, for they shall see God,” he was speaking of those who have followed the way of suffering and, despite the destructiveness of selected cells in their own bodies, have achieved a better ending than most would have thought possible. If they did clinical trials on blessedness, the researchers at NIH would discover that for some patients health is a two-way street. For just as good health is making its sloppy exit in bursting tumors and failing organs, another claimant to the title is arriving in the form of kindness, courage, and an inexplicable wholeness of the human spirit—what the Bible calls “health.” They would discover two entangled histories: a scientifically charted history of the disease; and an enchanted, uncharted history of the person who bears it with grace.