Living With Cancer in America b>
By: Jonathan Alter
April 9, 2007 issue
I took the call on my cell phone at the Starbucks in New York's Penn Station. It was from a doctor I barely knew telling me that a CT scan-ordered after three weeks of worsening stomach pain-showed a large mass in my abdomen, with what she said was “considerable lymph node involvement.” I rubbed my eyes and sensed the truth instantly: cancer, and not one that had been detected early. I was 46 years old and had not spent a night in the hospital since I was born. Nonsmoker. No junk food beyond the occasional barbecue potato chips. Jogged a couple of times a week. I was not remotely ready for this.
It was Super Tuesday, March 2, 2004, the day voters would select most of the delegates to the Democratic National Convention. Although the complete diagnosis was still several days off, the intense abdominal pain meant that my wife, Emily, and I had no time to stop, absorb and adjust to our twisted new world. We immediately began negotiating the endless round of doctors' appointments and insurance hassles that mark a cancer patient's life. With my head on fire, I quietly endured a festive lunch with political reporters and anchors, then went back to work. My job that day was to analyze the end of John Edwards's presidential campaign.
Three years later, I'm in remission and, strangely enough, thinking once more about the future of Edwards and his family. Like the 10.5 million other cancer survivors in the United States, I experienced a bit of extra stress last week. When Elizabeth Edwards's breast cancer recurred in her bones and Tony Snow's colon cancer recurred in his liver, the cold fear that many of us live with every day crept a little closer. The good news is that the candor of Edwards and Snow (who is recuperating from surgery but has been open about his situation from his perch as White House press secretary) has helped stimulate a useful national conversation about how people handle a cancer diagnosis. It has also exposed the foolishness of a few busybodies who don't have cancer, but feel free to judge the complex choices made by those who do.
My own story isn't typical, because none is. Every patient reacts a little differently, both biologically and psychologically. The only constant in cancer is inconstancy; the only certainty is a future of uncertainty, a truism for all of modern life but one made vivid by life-threatening illness. According to the latest projections, a third of all Americans will be diagnosed with cancer at some point during their lifetimes, most likely when they're old. Many will never achieve remission at all, while the lucky ones like me get to live with a sword of Damocles hanging over our heads. A friend compares his semiannual scans to visiting a parole officer. When the scans are clean, it's worth another six months of freedom, though with no guarantee of extra time for good behavior.
In my case, the news went from bad to worse. To calm my nerves before the laparoscopic surgery (they cut my colon into a semicolon and removed my appendix while they were at it), I heard some happy talk about how the bowel obstruction might be benign. As I recovered and watched the slow gait of my internist down the hospital corridor I knew otherwise. “Time is an illusion,” he told me cryptically, explaining that after a certain age, a few years could seem like many, and many could seem like few. I was informed that I had non-Hodgkin's lymphoma, a blood cancer that would likely shorten my life without ending it any time soon.
But we didn't yet know the all-important cell type. The day after being discharged, I grew impatient with the slowness of the pathology report and had the hospital lab fax it to me directly. Big mistake. After Googling “mantle cell lymphoma,” I learned it was a rare and nasty form of the disease with a terrifying prognosis.
By this time I was in mental free fall. Friends later said I handled it courageously, but they were wrong. American culture rewards cheerful stoicism, a quality that cancer patients usually display in public but find difficult to sustain in private, especially at the beginning. I collapsed in tears only briefly, but retreated into a fog of unshakable misery. My detachment alarmed Emily, who wisely resisted many well-intentioned efforts by family and friends to coddle me. She understood that their instinct to be protective was making me into a weaker person than I needed to be. So she lovingly but firmly pushed me back into some semblance of normal life. “Get off the Internet and get back to your real work!” she insisted on more than one occasion.
I slept only with the help of sleeping pills. After taking too many, I botched the disclosure of my condition to our three kids, then ages 14, 12 and 10, stumbling so badly over my words that Emily finally sent me to bed. Our family freely discusses everything but in this case we only told them the extent of the problem when we had a plan in place to try to fix it. They didn't want to know the details, and their self-protective lack of curiosity on this subject (and this subject alone) was a relief to me. We rarely talked about it with them thereafter, an unfashionable approach I would recommend. Physically, I felt OK; emotionally, I was in hell. A woman I knew who was dying of breast cancer told me that none of the pain she was suffering at the end of her life compared with that first month and the daze of diagnosis.
I fell back on what I knew-reporting and analysis-and undertook a furious round of investigative phone calls. Everyone agreed that it was critical to be examined at a major cancer center, where doctors would have seen my disease much more often than at other hospitals. (I was even told of studies showing the farther one travels for treatment, the better the chance of survival.) With the help of friends, I finally got an appointment at New York's Memorial Sloan-Kettering Cancer Center. It happened on my wife's birthday, the only present she wanted.
After receiving a second opinion on the lab results, the brilliant doctor who became my oncologist administered an excruciating bone-marrow biopsy, which felt as if I were on a medieval rack. The results confirmed that I was Stage Four, the most advanced, though the systemic nature of lymphoma may have made that less dire than in other cancers. He told me that my two-year odds of survival were essentially a coin toss, and that my best chance to improve them lay in four months of accelerated chemotherapy, followed by a bone-marrow transplant, an aggressive regimen previously used mostly for relapsed patients.
Many patients place full trust in their physician and never second-guess them. I was constitutionally incapable of that, so I hit him with a barrage of questions. Why this chemo protocol and not another used by a different hospital? Why not enroll me in a clinical trial? Why couldn't he tell me more? Even though I admired him, I continued reporting. With no standard of care for this disease, each expert I managed to get on the phone had a slightly different take on how it should be treated, which I later discovered is common with cancer.
I vacuumed up everything I could. (Cancer is unbelievably complex: lymphoma alone is made up of more than 30 different types.) I even became capable of decoding some of the doctors' medical jargon, which is like picking up a foreign language. The more I knew, the more frustrated I grew at the Catch-22 of oncology, which is that the most cutting-edge therapies are used only for the sickest patients, when it's often too late. Newly diagnosed patients get the old stuff, unless they get much sicker, when it's often too late for them, too.
But a little knowledge can be a dangerous and depressing thing. The Internet is a fantastic resource for patients, who increasingly use it to ask pertinent questions of their doctors. It can also baffle and disorient. Some of what I read about mantle cell lymphoma was out of date or even wrong, and logging on began to make me feel anxious. I thought Emily was in denial and she thought I was an easy mark for every cancer “cure.” We quarreled about it. When I tasted the rank “noni juice” I'd ordered on the Internet, I knew she was right.
One Web resource, however, was indispensable. My sister set up an account with a nonprofit site called caringbridge.org that brought order and even pleasure to my communication with the outside world. Instead of having to repeat my story endlessly on the phone or in individual e-mails, I could offer periodic updates, then watch in amazement and gratitude as the good wishes, parodies and embarrassing stories about me from fourth grade rolled in. The site kept practically everyone in my universe informed while easing their sense of helplessness-and mine. The postings of my children and my mother-in-law became particular crowd-pleasers and before long the idea spread through parts of the media world. Even B.D. from “Doonesbury,” home from Iraq and hospitalized at Walter Reed, got a caringbridge site.
I decided early not to keep my cancer a secret. I felt enough stress already without trying to figure out who knew and who didn't. One morning on the radio, Don Imus, sensing something in my voice, asked in his inimitable way why I sounded awful. I blurted out to a few million listeners that I was headed for chemo that day. But I kept the prognosis under wraps for fear that people would pity me or write me off. By then I knew that for all the new openness about cancer, sick people still get sidelined.
The idea of joining a support group held no appeal for me, in part because my disease is so rare and I had little interest in hearing about other kinds of cancer. (“My sister-in-law's cousin had prostate cancer and he's doing fine,” I was once told, unhelpfully.) But we mantle cell survivors found each other by phone and e-mail. Unfortunately, many hospitals still do little or nothing to connect newly diagnosed patients with those who have survived the same disease for several years, though this is what we crave.
Most people I know-and many I don't-were unbelievably supportive, offering prayers and comfort when I needed it most. I can't even conceive how people without close family (my brother even shaved his head in solidarity), friends and co-workers can survive the ordeal. Millions of Americans live alone and fight the disease mostly alone. They are the heroic ones.
The experience changes your relationship with friends, as some who were once mere acquaintances step up magnificently and others who were closer fade away. The long faces and doleful “How are you, really?” false intimacies were less welcome than the cheerful ribbing and sense I was being viewed normally. Emily and I got a laugh out of those people so interested in my initial symptoms that we concluded the inquiries into my health were more about them and whether the indigestion they were experiencing might be cancer. Others just wanted to know whether I had “beaten” it so they could check me off as one less person to worry about. Even now, it's just inaccurate to say that I have.
As my chemotherapy continued through the spring, my spirits lifted a bit. One of the worst parts of cancer is the loss of control, the sense that you have no recourse when your body betrays you. That's why nutrition and hygiene became so important to me in that period. For the first time, I actually understood how someone could develop an obsessive-compulsive disorder involving repeated handwashing. My own insistence on it was beginning to drive my family nuts. But I was determined to stay free of infection when my immunity was down during treatment. Chemo brought out the warrior in me, and the obedient servant. If the doctor suggested drinking a gallon of fluids on the first day after treatment, I didn't drink three and three-quarters quarts. I drank the full gallon, for maximum control, or the illusion of it.
My luck began to turn when I found I was avoiding the worst side effects, with the help of a dozen pills a day. I suffered fatigue, bone pain, anemia, total hair loss (my family said I looked like an egg), hemorrhoids, numbness and foot cramps, but thanks to anti-nausea drugs, which I popped prophylactically at $70 a pill, no vomiting. I missed my 25th college reunion but made the 2004 Democratic convention, with syringes in my bag and a catheter in my chest that my wife nervously learned to clean and dress. Cancer tests any marriage, trying to work tiny cracks into fissures. But as I slowly checked out of my fog, ours prospered.
By this time I had fashioned my own daily recovery plan, which I dubbed Herman. The H stood for humor, a few minutes each day with “Curb Your Enthusiasm” or Will Ferrell or an Ian Frazier story or a friend who would make me laugh. E was-and is-for exercise, which may not fight cancer but clears my head. R represented religion. At the depths, I tried to read something about Judaism or talk to God a little every day, though like a soldier escaped from the foxhole, I've backslid since. (Religion often morphed into superstition, as I avoided the sweater I had worn on the day of a bad test result and refused, long after remission, to refer to my cancer in the past tense for fear of tempting a recurrence.) M was for meditation, which with the help of my friend Barbara helped calm me for a time. A was for attitude. Studies show no connection between a good attitude and reducing tumor size and I can't stand the way our therapeutic society makes people feel that cancer is their own fault because they weren't more chipper. But mind-set is important. By chance, I was already at work on a book about Franklin D. Roosevelt, and the writing offered a useful distraction from cancer. His upbeat attitude after being stricken with polio was inspirational for me, and made me wonder, What Would Franklin Do? N stood for niceness to my family. They bore the brunt of my irritability, which I tried to reduce, not always successfully.
As I learned about myself, I also learned a lot about medicine. Most cancer doctors are awe-inspiring in their humanity and dedication. They make, say, hedge-fund billionaires (not to mention journalists) look puny and insignificant. But I also found oncology full of the same mammoth egos and petty jealousies that plague any high-powered field. Doctors from competing institutions are often so competitive that they talk to each other only a couple of times a year at conferences. They do lab work on parallel tracks instead of collaborating. And under pressure from hospital lawyers, they frequently even refuse to share cell lines with other qualified researchers, which retards progress toward cures and is clearly unethical. Thanks to a wealthy mantle cell lymphoma survivor, ours is one of the first subsets of cancer to establish a consortium to get top experts in the field to exchange ideas regularly. Every cancer should have a consortium.
And every cancer doctor would do well to recalibrate on occasion the balance he or she strikes between science and hope. While the survival odds they offer might be technically accurate (X percentage with Y cancer will survive five years), they are often misleading and sometimes unnecessarily cruel. Patients and families obsess over these survival-rate statistics, but they reduce the countless variables of a person's genetic makeup and environmental exposure to a number, which is cold and often phony. Depending on the individual (whose age is usually not even factored into the statistics), a 50 percent chance of survival could easily be 80 percent—or 20 percent. Moreover, few patients understand the meaning of the term “median survival.” That simply means half live less time and half live more-perhaps much more.
Dr. Jerome Groopman, the Harvard Medical School oncologist who became my informal patient advocate (which every patient needs and few get) and later my indispensable friend, told me that he wished he had a nickel for every patient he knew who was told he had an “incurable” disease and is still doing just fine. Groopman's new best seller, “How Doctors Think,” explains the self-protective psychology behind the pessimism of so many doctors, who don't like to view the death of a patient as a comment on their abilities. So they resort to saying it's a “bad disease” or “incurable.” What doctors should say—and often do—is that a particularly challenging cancer might be incurable now, but if we can keep you alive a while longer, a cure might come, as it did for Lance Armstrong's testicular cancer. Patients need to do their part by enrolling more readily in clinical trials, which most avoid. And they should stop pressing their doctors for an exactitude that doesn't exist.
The climax of my treatment was a bone-marrow transplant in August of 2004. There are two kinds: an allogenic transplant-the only true cure-involves a donor. But I had no sibling match, and using an unrelated donor carries a one-third morbidity rate. Because the earlier rounds of chemo had achieved remission, I was eligible for a less dangerous autologous transplant. I was hooked up to a machine that extracted (or “harvested”) millions of my stem cells, which were then frozen. Once admitted to Sloan-Kettering for a 23-day stay, I was hit with high-dose chemotherapy, the most toxic in the chemo family. The point was to knock my white blood cell count down to zero, a process that confined me to my room for two weeks. Had I, with no immune system, wandered into the hall and caught something, I would have died. After my stem cells were defrosted and transplanted back into me, along with several other blood transfusions, my blood counts slowly increased.
For me, the experience was not as bad as advertised. Before I felt the brunt of it, I even managed to bang out a NEWSWEEK column from the hospital. I avoided the horrible mouth sores and most of the other common side effects. Family and friends visited every day, as long as they washed their hands carefully and stayed on the other side of the room. Even when I was too weak to move or say much, I enjoyed their chatter. When I got home I could walk only a few steps. But within a few weeks I was walking a mile and by Election Night 2004 I was back on TV after eight months, balder if not wiser.
During my annus horribilis, NEWSWEEK let me work at home and helped me navigate the insanity of the American health-care system. The claims forms are impenetrable and accompanied by pseudo-sympathetic bill collectors. How do other patients with life-threatening illnesses even begin to handle it? Cancer is seriously expensive, and no insurance company covers all of it. I met a lymphoma survivor whose wife left him after he sold the house to pay for his transplant. Now he's clinically depressed, too. But at least he's not uninsured or bankrupt. The majority of personal bankruptcies in the United States come from medical expenses, not sloth. In its hideous 2005 bankruptcy “reform,” Congress sided with credit-card companies and kicked cancer survivors when they were down.
Six weeks after my transplant-and again at six months-I received additional infusions of Rituxan, one of the new, less toxic and more targeted cancer therapies. In the two years since, my checkups have consisted of colonoscopies (I've had eight altogether) and CT scans. Recently I graduated from three-month scans to six-month scans. I grow anxious before each one, of course, terrified that I will be exiled once more to the penal colony of the sick.
In between, every little ache or pain sends a jolt of dread. But I run three miles a day to stay in shape and I try to channel some of what my father has taught me about being a combat aviator in World War II, where he learned to balance fear and fatalism. At home, my children seem unaffected, insulated by the glorious narcissism of adolescence. I can even envision a time when a day finally passes without my thinking of cancer.
Serious illness has a way of crystallizing life, which is why so many people change jobs or spouses or views of the world when they fall ill. On some level, they weren't at peace with their old life and suddenly found the motivation to change it. I was happy with my old life, and all I wanted was to get it back, without having to become a professional cancer survivor or expert on coping.
In a taxi en route to lunch on that awful Super Tuesday, I experienced a powerful premonition: I have cancer, it's going to be bad, but I'll live until I'm 90. Probably not, but I turn 50 this year and, full of hope, recall that great line from “The Shawshank Redemption”: “You can get busy living, or get busy dying.” For me, it's no contest.
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