The Cancer Chronicles Read online

  When you’re healthy and cancer remains an abstraction, enumerating life’s hazards can be reassuring. Neither of us were smokers, in whom cancer risk is measured not in small percentages but in factors of ten to twenty. A twentyfold greater chance of getting lung cancer—nothing sounded subtle about that. From all the public service announcements and scary warning labels, I assumed that a large proportion of smokers must die that way. It was surprising to learn that the figure is more like 1 in 8. With a statistic like that, so many details are washed over. Surely the odds are far worse for a lifetime chain-smoker. In search of an answer I came across the online Memorial Sloan-Kettering cancer prediction tool. I plugged in some numbers. A sixty-year-old man who had smoked a pack a day since he was fifteen and now plans to give up cigarettes will have a 5 percent chance of getting lung cancer in the next ten years—and a 7 percent chance if he doesn’t quit. I thought the odds would be so much worse. If the man is seventy and has smoked three packs a day, the risks are 14 percent and 18 percent. That still leaves heart attacks, strokes, chronic bronchitis, emphysema, and other cancers—a variety of ways to die. Smoking damages health and lowers longevity. But when you hear those stories about the uncle who smoked like a chimney every day of his life and never got lung cancer—that is the norm and not the exception.

  Geography also plays into carcinogenesis, and there were dangers involved with living in Santa Fe, New Mexico, a place we loved for its stark juxtapositions. The semiarid plains giving sudden rise to 12,000-foot peaks. The old Spanish families sharing the same dirt street with artists and college professors. And there was the cool, dry, high-altitude air. It was too dry at times, and some summers we would anxiously watch smoke plumes billowing from distant forests. Ashes would fall from the sky, and the sun would set blood orange like images from Revelation. In the night the mountains glowed and erupted in plumes of fire. One of the fires swept through parts of Los Alamos. A study later concluded that the radiation spread by scorching the laboratory grounds posed one-tenth the risk of the naturally occurring radionuclides released by the burning pines. Good news, I guess—except for knowing that every forest fire may pose a measurable risk from nature’s own fallout.

  Santa Fe is nearly a mile and a half in altitude, so there is that much less atmosphere cushioning skin and eyes from solar rays. Sweeping from red toward blue on the spectrum, the frequency of light increases. The higher the frequency, the higher the energy, and by the time you get much beyond violet there is enough energy to break molecular bonds, to mutate DNA. Many times every summer a double rainbow would arch over Talaya, the conical peak at Santa Fe’s eastern edge. I was almost sure I could see, barely visible at the underside of the arc, a shimmering band of deadly ultraviolet. Beneath that would be colors our eyes don’t know: x-rays and gamma rays. Sunlight is dangerous stuff. Yet there is some evidence, weak and conflicting, that the vitamin D it helps generate in the body lowers the odds for colorectal cancer—while raising the risk for cancer of the pancreas. At least among male Finnish smokers.

  The assaults came from above and from below. As in so many parts of the country, the granitic soils our neighborhood was built on contained tiny amounts of naturally occurring uranium. Uranium-238 decays, shooting out alpha particles to become thorium-234 and eventually radium and then radon, a radioactive gas that cannot be seen or smelled. Radon is considered a risk factor for lung cancer, occupying a distant second place behind cigarette smoking, and is being investigated for a lesser role in other cancers. It accumulates at a geological pace (the half-life of U-238 is more than 4 billion years, meaning that it would take that long for half a portion to decay). The gas itself lingers only a few days, breaking down into radioactive daughter particles and ultimately into minuscule traces of lead. But it is constantly being generated, and when I bought our house the inspector measured 5.4 picocuries per liter of air, a little above the Environmental Protection Agency’s “action level” (4 picocuries per liter) at which a follow-up test was recommended and people were advised to consider radon mitigation with sealers, blowers, and vents. I began caulking floor cracks—Pascal’s wager—which had the more tangible result of reducing the population of spiders and centipedes. I was soon diverted by other things. For someone who never smoked, 4 picocuries per liter poses a lifetime risk of dying from lung cancer of about 7 in 1,000—less than 1 percent—and that assumes constant exposure, as if you spent your life indoors like a shut-in or a kidnap victim.

  We lived near no industrial sites and Los Alamos, the Atomic City, was twenty-five miles away, on the far side of the Rio Grande Valley. In the early 1990s, an artist living there had reported what appeared at first to be a high number of brain tumors in his neighborhood. State health officials investigated. During the previous five years there had been ten cases in the county instead of the six that would be expected from state and national averages. But the numbers were too small to be meaningful, and epidemiologists concluded that there was no way to distinguish the increase from what could have arisen through chance. There was nothing unusual or alarming, they said. If you stepped back and examined the world at large you would find similar bunchings in space and time, but you would have no reason to assume that they pointed to an underlying cause. Epidemiologists talk about the Texas sharpshooter effect. Blast a barn door with a shotgun and then find the holes that are closest together. Draw a target around them and it looks like you hit a bull’s-eye. As soon as it peaked, the brain cancer rate fell and then zigzagged around normal. The Los Alamos investigators had also found a blip in thyroid cancer. But again the numbers were small—a total of 37 cases over twenty years in a population of 18,000—and in the following years they too declined. A public health assessment concluded that residents were receiving no harmful exposures from chemical or radioactive contamination whether from the water, soil, plant life, or air.

  In thinking about exposures, there was also the past to consider. Nancy had grown up in New York, on Long Island, where in the early 1990s the suburbs began to reverberate with fears of a breast cancer epidemic. When a friend or family member is struck out of the blue with a malignancy, the mind becomes magnetized, pulling in specks of data. There is that woman down the street who was also diagnosed with breast cancer. And the sister-in-law in the next town and the wife of the man at the office. The brain, built to seek patterns, insists on connections. The Long Island cancer cluster was born.

  And so you start looking for a reason, a source, the spider crouched at the center of the web. Was it the Brookhaven National Laboratory, with its particle accelerators and research reactors? Or the pesticides and weed killers used in the old days when the island was mostly farmland—and, more recently, to maintain all of those flawless Long Island lawns? Or the DDT that had been sprayed to control mosquitos? Was it the high density of power lines in an area hungry for electricity?

  The worry and fear—so reasonable, so understandable, so very human—lapsed sometimes into hysteria, which lapsed into paranoia. One activist ominously alluded to “a type of population control,” as if Long Islanders were being exterminated, willfully or by neglect, by the wholesale damaging of their genes. The politicians had to listen and Congress mandated a study. A decade later the National Cancer Institute issued its $30 million report. The incidence of breast cancer in Nassau and Suffolk Counties was slightly higher than for the United States as a whole. But the same was true for much of the urban Northeast—a clue that anything the cancers might have in common was very diffuse. The cluster was more like a sprawl.

  No link was found between pollutants and breast cancer. If there were more cancer cases on Long Island, the study concluded, the causes were probably socioeconomic. There may also have been a genetic factor. Many Long Island women were from Ashkenazi Jewish families, which show a propensity for breast cancer. But the likeliest culprit was the relatively affluent suburban lifestyle. Long Islanders were apt to eat richer diets, to be overweight, to bear fewer children, and to live longer—the median ag
e for diagnosis of breast cancer is sixty-one. Long Islanders were better educated than average and therefore more likely to get frequent mammograms, discovering tiny, slow-growing, possibly harmless neoplasms that are treated, just to be sure, and recorded in the statistics. A woman living in a shack in Appalachia might carry these “in situ” carcinomas to the grave, dying beforehand of something else.

  These are not the kinds of reasons people want to hear—that their cancer might have been prevented had they chosen to forgo careers and, like the squirrels and foxes, be pregnant all of the time. That they might have enjoyed too many good meals and gained too much weight. That their lump mastectomy might have been unnecessary. “Blaming the victim,” some activists complained, and one of them dismissed the report altogether: “We certainly believe there is an environmental connection, and we don’t have to have proof to say what it is.”

  Everyone has risk factors for almost every cancer, and they take on significance only in retrospect. One day our neighbor Vivian, happily working at home as a translator of scientific documents, “presented,” as they say on grand rounds, with cancer of the ovaries. She died on an Easter Sunday, and the next thing we knew we were sitting at her memorial service. She was married to a mathematician. There was no mention of God. Around the same time, Susan, a former girlfriend of mine and a colleague from the journalism world, also died of ovarian cancer. Both she and Vivian were childless. But there was also Mrs. Trujillo across the street, a mother well beyond middle age who died of the same thing. All of us acquire our own personal cancer clusters, and a mental file of anecdotal evidence as unreliable as it is impossible not to deep down believe.

  When Nancy’s cancer came we didn’t know if it had started in her ovaries, her breasts, her uterus, her lungs. For the longest time (weeks—the clock was ticking so slowly) we didn’t know where it was growing, only that it was shedding cancerous cells into her body. She had been visiting a girlfriend in San Diego and was doing sit-ups in a local gym when she noticed a lump on the inside of her right groin. The words “swollen lymph node”—like what you might get from a sore throat—leapt to mind.

  Cat scratch fever, we quickly decided, after seeking reassurance from the Web. Weeks earlier, startled by a sudden sound, one of our cats had clawed her leg, and an immune response from an infection could have led to lymphatic swelling. That is what lymph nodes are for, to capture and neutralize immunological invaders. The human mind, ever hopeful, has a talent for absorbing aberrations.

  The bump didn’t go away. Her doctor thought it might be a hernia and recommended a consultation with a surgeon. But that didn’t happen right away. A phone call from out east brought news that Nancy’s father had suffered a hemorrhagic stroke—what a horrible year this was—and lay in intensive care at Stony Brook University Medical Center. The appointment with the surgeon was postponed and a flight to LaGuardia Airport was booked. Nancy called home that evening and told me about sitting at his bedside: his eyes, his smile, the grip of his hand, his obvious comprehension. He filled every cubic inch of her soul, except for a tiny space. The space got larger. In the days since her arrival, the lump had obstinately endured.

  She didn’t have to leave the Stony Brook campus for a medical consultation. The next time she called she was walking back to her car from an appointment at a clinic, past familiar buildings (she had taken a degree in biology there). Her voice was wavering just enough that I knew she was probably crying, or trying not to. The doctor had palpated the lump. It was not soft and round as it would be from an infection. It was not cat scratch fever. It had the hard, irregularly shaped feel of a malignancy. The look on his face told her that she almost surely had cancer. He recommended a needle biopsy—the sucking out of cells to see if they are malignant. She decided to come home for the procedure.

  There are those times we all come to know when you are sitting in a hospital waiting room surrounded by other people—the older ones flipping through magazines, the younger ones staring into the bottom of their cell phones. I had been through that with my mother after her torn rotator cuff and when the second of her knees was replaced. I had been through it with Nancy for a detached retina after a horseback ride. I knew what to expect. Just when you think you cannot endure another minute, the surgeon walks in, her mask hanging around her neck. She is smiling, pleased to be giving you good news. This time that didn’t happen. “We may be looking at a carcinoma,” she said.

  She had sent a sample of the lump downstairs to pathology for a quick look under a microscope. The misshapen cells resembled epithelial cells that form the lining of organs. But they had mutated enough to become less differentiated. They were losing their genetic identity. Reverting to this primitive state, cells bear a resemblance to those in an embryo—rapidly dividing, chameleon-like, and capable of doing almost anything.

  The diagnosis would have to be confirmed in the laboratory. But there was little doubt about what was happening. I walked with the surgeon to the recovery room where Nancy lay in an anesthetized blur. I remember her smiling as the surgeon spoke, and I only realized later that she was barely absorbing the information. For the rest of the week I tried to be optimistic, and maybe I unintentionally misled her. My understanding was that the diagnosis was, say, 90 percent certain, that the lab report was a technicality, a way to be absolutely sure. I thought that was Nancy’s understanding too.

  A few days later I was upstairs in my office when the doctor called her to break the news. “Extensive metastatic adenocarcinoma, moderately differentiated.” Adenocarcinomas are carcinomas of epithelial tissues that contain microscopic glands. They can arise in the colon, lung, prostate, pancreas, almost anywhere. I don’t remember how I knew to walk downstairs. Or did she walk upstairs to me? I had never seen her so upset. She told me that she had hung up the phone and screamed. Somehow cancerous cells had gotten into her lymphatic system and lodged inside that node in her groin. But where in her body had the cells come from? It would be weeks before we knew. “Metastatic cancer with an unknown primary”—it seemed like the worst possible diagnosis. A tumor was single-mindedly growing, shedding more seeds, metastasizing. But no one knew where.

  There were hints from the pathology report describing the character of the cells:

  ESTROGEN RECEPTORS Approximately 90% positive (favorable)

  PROGESTERONE RECEPTORS Negative (unfavorable)

  The first line provided a scrap to hang on to. Since the growth of some cancers is driven by estrogen, it might be controlled by blunting its effect. The abundance of these receptors also helped narrow the diagnosis:

  Comment: The estrogen receptor positivity is consistent with an endometrial or ovarian primary rather than a gastrointestinal primary.

  So it was probably gynecological. The endometrium—the lining of the uterus—is a tissue of epithelial cells, which are vulnerable to carcinomas. I think Nancy had suspected something like that. About a year earlier she had been told by her doctor that she was experiencing unusually early menopause. The sign was irregular menstrual bleeding, and I still wonder why that was not taken as a warning, an occasion for more tests—whether the cancer might have been discovered then and treated before it had been allowed to spread.

  Comment: The tumor has micropapillary architecture suggestive of endometrial, ovarian or

  The rest of the sentence was cut off. Monkeys with typewriters recording your fate. And being sure to include the billing code.

  The surgeon was so supportive, so sympathetic, so sisterly. On a follow-up visit she gave Nancy a hug. I think we both were stunned when her next move was to hand us a pile of paper—yellow, pink, blue—orders for various procedures. We were to take them to local clinics, stand in line, and apply for an appointment. The chain store imaging center across the street would do a mammogram, chest x-ray, and a CT scan of the abdomen and pelvis. The colonoscopy factory was booked solid, the surgeon said. Rather than insisting that a patient with metastatic cancer be accommodated—most people’s colonoscop
ies are routine and could easily be rescheduled—she issued an order for a barium enema, an ancient, quicker, less definitive test. We asked about a referral to an oncologist. That would be premature, the surgeon told us, until we knew what kind of cancer this was. She actually said that.

  What is a crisis for the patient is routine for the doctor, but this still seems to me like pure idiocy. We went from lab to lab, returning to pick up the results. The mammogram and chest x-ray were negative. The abdominal scan showed the liver, kidneys, pancreas, bowel, and lower lungs to be normal. So were the adrenal glands. A 1.3 centimeter nodule in the area of the spleen looked “to be a splenule only”—a benign mass that can sometimes be confused with a tumor. In the pelvic scan a cyst on the left ovary appeared “unlikely to be neoplastic” but the uterus and endometrium were “prominent” and there were benign fibroids. There was a “question of [a] small constrictive lesion of sigmoid colon.” It was scary reading language whose nuances we were not attuned to understand. Especially disturbing were the results of a blood test: CA-125, a protein found in higher concentration with some cancers, was elevated. The test was far from conclusive—many other things can cause a high reading—but it hinted at the possibility of ovarian cancer, the kind that had killed our friend Vivian.

  As we accumulated information we also made phone calls. I talked to a doctor at the Mayo Clinic in Scottsdale where I had splurged for my fiftieth birthday on an executive physical. She suggested the obvious: MD Anderson Cancer Center in Houston or Sloan-Kettering in New York. I contacted those places and—more importantly it turned out—found out who had treated Vivian. Her husband spoke highly of her oncologist, and when I called the doctor’s office in Santa Fe, his secretary squeezed us in for an appointment.