Cancerland

by David Scadden

  THREE

  CANCERLAND

  When her doctor got the marriage license test report, he sent her to the hematology clinic at Brigham and Women’s Hospital. She arrived with her fiancé, and I brought them into a private office to break the news. The tests showed she had chronic myeloid leukemia (CML), a type of cancer in which the bone marrow produces abnormal granulocytes, which are a type of white blood cell. The best option was chemotherapy and a bone marrow transplant. Without them, she would die of the disease.

  I don’t recall the precise words I used, but the situation was not hopeless, and I would have said as much. What I do recall is that my patient’s eyes filled with tears and her attention began to wander the moment I used the word leukemia. Prior to meeting me, she had felt perfectly fine and was thrilled about getting married. Suddenly I was telling her that she was in the chronic phase of a certainly fatal form of cancer. CML is best treated at this moment, when people do not feel sick and fewer than 10 percent of the blood cells are involved. Untreated, the disease can advance and become less vulnerable to medicines. When this happens, people really do feel marked fatigue and fever increasing as they approach a crisis phase where the abnormal cells multiply in an out-of-control fashion, crowding out the normal blood cells needed to sustain the body.

  The about-to-be-married young woman I met at the Brigham left without making an appointment, and in the weeks that followed, she wouldn’t respond to any of the calls we made or the letters we sent. Did she know all that awaited her if she chose treatment? I doubt it. But most people knew that chemotherapy at that time was inadequate and bone marrow transplantation, which then was the only hope for curing CML, meant high risk and life trauma. In general, transplant procedures were improving, with immune-suppressing drugs that could reduce some of the transplanted cells’ attack on the recipient’s body (GvHD). There was also an increasing public awareness of transplantation. While it is a totally different matter when an organ like a kidney or liver is transplanted, growing success in those areas did shed some reflected positive light on bone marrow transplant. When the press reported on transplantation, the stories were generally positive, highlighting lives that were saved.

  However, the press accounts generally obscured the details of the procedures, which could be harrowing for everyone involved, including the teams of professionals who performed them. The hematology group at the Brigham did bone marrow transplants, and trainees like me also cared for patients who made the pilgrimage to Boston for treatment at the neighboring Dana-Farber Cancer Institute. The Farber was one of a small number of comprehensive cancer centers scattered across the country. At these places, science and treatment lived side by side, with the balance not always favoring the experience of the patients. Indeed, in the 1980s, Dana-Farber was the kind of place where many patients were pushed to their physical limits by doctors who considered themselves part of a warrior tribe. The chief warrior was Emil “Tom” Frei, who had, with colleague Emil Freireich, made extraordinary, lifesaving advances in the treatment of childhood leukemia with just such an all-out approach at the National Cancer Institute in the 1960s.

  With the official title of physician in chief, Frei was understandably very aggressive with therapies, and his attitude set the tone at Dana-Farber. While surgeons generally followed a “cut-it-to-cure-it” philosophy, oncologists in the Frei mold who gave chemotherapy were testing giving patients the biggest dose of chemotherapy they could survive, on the belief that this afforded them the best chance at cure. “More is better” had worked for childhood leukemia, and now with new drugs being developed, maybe finding the right mix of highest-tolerated doses could do the same for the much more common cancers of adults. Great effort was made to push doses while improving the care used to save patients from the life-threatening complications. The all-out ethos of the place could be seen throughout the building, which had both high-tech labs and patients’ rooms. Sometimes, like all research-focused hospitals with the imposing equipment, constantly beeping monitors, and bustle of intensely focused people in medical uniforms, the place seemed one part hospital, one part science fiction battleship.

  The culture and environment at Dana-Farber were particularly reassuring to patients who wanted the most modern treatment and who believed, given the stakes, that they had to struggle and suffer like prizefighters if they were to survive. This perspective of mortal combat had its downsides. First, it could enhance the guilt of those who feared, either consciously or subconsciously, that they were somehow to blame for their diagnosis. Rarely can a single factor, even smoking, be sufficient by itself to cause cancer, so this self-blame was often unscientific as well as unnecessary. However, it was also rooted in the all-too-human need to make sense, even self-punishing sense, out of events that are beyond our control. It also turns disease progression into a personal failure, a lack of sufficient fight. That is just wrong. While attitude can change the perception and particularly the family’s perception of events, it will not change the rate of tumor cell growth. There is evidence that the immune system responds to input from the nervous system and so could be modulated by thoughts, but the response is not sufficiently robust to consider it central to the outcome of malignant disease. Spirited resistance is worthy in itself. Putting the burden of progressive cancer on one’s spirit is just not fair. Unfortunately, biology always wins.

  The tendency to self-blame runs deep, however. It is supported by some religious traditions that teach that one’s physical, emotional, and even social well-being are proof of either virtue or sin. In the eighteenth century, theaters were filled by crowds eager to see the public dissection of executed criminals by so-called anatomists who sought to demonstrate that the criminals’ inner organs showed signs of their moral corruption. Today, only a tiny fraction of society holds such extreme beliefs about the body and the soul, but they haunt many more who just have a feeling—as much a sensation as a thought—that they are responsible for their own suffering. This feeling, layered on top of the natural motivation to do all they could against the cancer, sometimes reduced willingness to speak up when suffering exceeded reasonable bounds. It could unfortunately work against people already dealing with the weight of their diagnoses and the rigors of their treatments.

  But care at a research hospital really does translate into distinctive care. Almost never is a patient treated with just one person’s opinion guiding decisions. Almost never is care delivered without consideration of what new developments might improve his or her chances. Almost never is the patient seen just as an individual; he or she is seen as an individual and as a representative of a disease. The implications of such a culture are of course both positive and negative. Care based on the personal needs of an individual accommodating his or her life priorities is an ongoing aspiration not always realized. The name of many cancer centers does not help. They are often titled “cancer institutes.” That does not convey caring as central to their mission, though in most places it certainly is. It conveys a central paradox in much of modern medicine. Medical care remains largely primitive and will only advance by scientific study, but when we are sick, it is deeply personal, and we all want a comforting hand, a healing touch, not statistical analysis.

  I lived this one unforgettable day during my internship. We were on call every other or every third night. That meant that we were essentially awake and available in the hospital for thirty-six hours followed by either one night sleeping at home before doing it again or getting in a twelve-hour day in the hospital and getting one more night in our home bed. During the every-third-day-on-call months, we had one Sunday free every three weeks. Otherwise, we were in the hospital, so doing laundry, buying groceries, getting to a bank, and socializing presented a challenge. The daily 10:00 p.m. meal was the social life for most of us. It was difficult to even stay connected to family, so it was notable when a phone call startled me from sleep on a night in my apartment. My parents were on the line telling me that Dr. Baldino, my paragon of a good doctor
, had told my mother that she had colon cancer. She had been very reluctant to inform him that she’d noticed blood in the toilet bowl intermittently over a month or so. He examined her and sent her for a colonoscopy and biopsy that revealed the bad news. I couldn’t think clearly, but I knew that I had to bring all the expertise I felt surrounded me in Boston to bear on her health.

  It was a struggle to ask for help, but the colon cancer expert physician whom I trusted, Robert Meyer, and the surgeon whom I knew to be outstanding, Robert Osteen, were extraordinarily gracious and helpful. They immediately made themselves available, and my mother arrived in Boston to see them. When my parents and I were walking to Dana-Farber, a trip I had made dozens of times as an eager physician in training, the steps seemed to go into slow motion. Previously, I had regarded the place as somewhere where I could be useful and where I could learn to be more so by the fabulous physician and scientist teachers within its walls. Now that shiny panache turned gray. When my mother reached the sign by the door—Dana-Farber Cancer Institute—she could not go on. She wept. Her fear, her mortality, were in those letters on the wall. I had seen my mother as always cheerful, always ready to go forward, and now she was a patient walking in to confront a reality that could not be denied or made light of; this was life-and-death for her and for our family. We were all entering Cancerland.

  * * *

  As my mother steadied herself outside the doors of the Dana-Farber Cancer Institute, my heart broke and I understood, for the first time, what every patient who approached that door surely felt. For me, Dana-Farber had been a place of intense work and education, a crucible where I was becoming a better doctor and scientist. For people who came seeking treatment, every visit was accompanied by existential fear. Seeing that fear in my mother’s face made me appreciate every patient’s experience and motivated me to remember, in every encounter with a patient, that I was treating a human being who was scared and searching for a lifeline to hope.

  What patients know, and I could see through my mother’s eyes, was that a cancer diagnosis sends you into an alternate reality, Cancerland, where the usual things in life recede and it’s easy to be overwhelmed by your condition, your treatment, and your prognosis. In Cancerland, you learn a whole new language related to blood tests and imaging technologies, and you scan the horizon for signs of hope or danger. People who spend months or even years in this environment can become so familiar with their own disease that they could pass for medical specialists.

  Cancerland is not always a dismal place. Those of us who work there every day consider it a privilege to spend so much time in an environment free of the artifice that you find in more ordinary realms. Few things can make a person more engaged, authentic, and real than a serious diagnosis. Encounter people in this state of prolonged peril and you discover them without pretense and prejudice. They laugh and cry more freely and are less reluctant to say what they think. With some exceptions, love and empathy flow more readily. It’s a bit ironic, but true, that gratitude and generosity come to the fore when we fear that time is running out.

  Accompanying my mother through her treatment also gave me the chance to learn how people experienced the doctors, nurses, and everything that made up the system of care at Dana-Farber. My mother’s doctors were people I knew as colleagues, teachers, and supervisors. I knew how these physicians thought and could imagine how they might discuss her care in a conference. But they did a good job of sharing the essential facts without overwhelming her when she was already feeling vulnerable. One of the best things they did for her was conclude each consultation with a review of the next steps to take. This information reassured her that though she faced a steep climb, there were toeholds and resting spots for her to anticipate. A clear plan makes any ascent easier.

  As I watched my mother navigate cancer, I also came to understand the limits of transparency. In private, professionals who discuss a case together might consider many options that in the end are inappropriate in a given case. If you let a patient or his loved ones into these conversations, you run the risk of creating confusion—or worse, after-the-fact conflict. People are likely to recall the option not chosen and ask, “Why didn’t you take that path?” Sometimes no amount of talking can reassure someone that it wasn’t incompetence or neglect that determined the choice. The same trouble can arise when you share test results or imaging without interpretation and the filter that experience and judgment provide. Leaving it for patients to interpret them for themselves is both unkind and unwise, sending people adrift who most need a strong anchor.

  My mother’s course was set. She had a hoped-for curative resection that failed. Surgery left her with a humiliating colostomy that tested her dignity and sense of humor. These attributes she never lost in public, but I knew they were sorely tested even among close friends and made her feel outside the circle of the well even before she knew of any disease progression. She relapsed repeatedly over a number of years. These might have been prevented if the studies that came to completion five years after her death were available, but they were not, and I am only grateful that research has now spared other families what we experienced.

  Each of my mother’s relapses was viscerally felt, consuming dread by all in our family. My mother truly was the light we circled around. Each time, I reached out to senior colleagues whom I thought balanced expertise with humanism, and each time, they responded in ways I can only consider heroic. They represented ideals of medical and surgical care to me. But sometimes I wonder if my desire to do everything that could be done may have tipped even their best judgment on whether something should be done. When lung metastases were found, lung resections were done. One of my most awful memories of medicine came during that effort. The chest is richly wired with sensory nerves. Given how critical the contents of the chest are for us as an organism, it is no wonder that that is true. When surgery is done on the chest, particularly when horrifyingly medieval chest spreaders pry open the ribs, raging pain results. Those were and often still are necessary for resecting tumors in the lung. I sat by my mother’s bed in the recovery room as she gradually came awake. Her first moment of glancing over came with a smile that quickly transformed into screams of pain. It was like a blowtorch had been applied to her skin, she later said. Such roaring misery was foreign even to my professional self; as a son, it was sickening. A well-placed nerve block finally put out the fire.

  She healed, but then developed dizziness. Rarely does colon cancer go to the brain, but it did for her. Radiation was followed by more surgery to pluck out the metastases. On its face, that sounds entirely reasonable, and I am grateful to the surgeons who did it. But entering the skull alone can change a person. Entering the skull, cutting away some brain, and having radiation damage it as a whole leaves only a shadow of the former self. It did get my mother back to some function; enough to attend and dance at Kathy’s and my wedding. That was a gift. But she then drifted, and finally it was Dr. Baldino who came to our house and said to me, “It is enough; she can only suffer from here.”

  As I look back, I see my optimism drove much of what happened. Not that my mother’s doctors suspended their own judgment, but there are so few firm guidelines that naturally they shaded decisions in favor of being active in helping. This desire to help is perilous ground for physicians. It is often made the harder by the sense of some nefarious, legally based overseer peering over the shoulder. I don’t regard it as something that affected those who cared for my mother, but I know in many circumstances it does and confess that at times it did when I was deciding what to do. The notion of defensive medicine is very real. For some, it becomes reflexive: do all that can be done so no one can accuse you of not taking action. That is mindless and drives costs, though for some reason health economists don’t find it in the data, perhaps because no doctor would admit acting that way. It can also be more subtle and is the way I know I behave, and I suspect my mother’s physicians did too. The impulse to be helpful is in all of us and is a deeply felt com
pulsion among most physicians. When approaches are available that have even a slim chance of helping, the default is to want to try. This “just do something” impulse (?) is what compels much of oncology care, even when the odds strongly favor that the action is prolonging death, not meaningfully prolonging life. It is made worse by FDA approvals of oncology drugs that induce remissions, but do not alter survival beyond a few months.

  For the patient, the reflex is of course to do what is recommended. That was certainly the case for my mother: if an option was available, she of course said yes. She was an active, can-do person who felt it was her duty to family and friends that she pursue every meaningful option. Part of her role as a cancer patient was not just to fight the disease the way our language encourages people to do, but also to prevent others from suffering for her. She could not bear the notion that what her family experienced was loss. To try and mitigate that, she took every medical option she could. Almost comically, her baking schedule increased. She filled even more cookie tins and put more pies in the freezer, even a second freezer in the basement. Noble suffering meant doing whatever was recommended and then some.

  After four years of struggle my mother died in 1985, at the age of sixty-five, which is the age I am now. She was savoring every moment as a parent and recent grandparent. It seemed unjust. Small-mindedly, I couldn’t help but see injustice when I was “moonlighting” rare weekends taking care of nursing home residents. For many, they had no awareness of family or events around them because of advanced dementia. It seemed that a just universe would allow bartering a few of those seemingly hollow years to give those taken in their vitality. However, she had taught me gratitude as a way of living. I couldn’t let those lessons turn bitter. Rather, I had to make what I saw and what my family experienced become fuel for more urgently working on ways to change what others would go through. I could not let that pain simply echo and fade. It made clear that nothing was more important than bringing new light, new light, new approaches to the dark shadow of cancer. What was available was crude: poisons, surgeries, and radiation. Like shielding from a hurricane with your hands, these were simple and hopelessly overmatched approaches to the complex biology of cancer. More science seemed the only way forward. I was lucky enough to be in a place where science stood tall and I was given a chance to engage it.