Paths of Hope and Ways of Healing
On Never Giving Up Hope: Three Stories
Wrestling with the Angel
This chapter is about the uses of hope in cancer. A wise man once said to a group of cancer patients in the Commonweal Cancer Help Program: “Above all, never give up hope.” The truth in those simple words has stayed with me through the years. It is hard to live without hope. Hope is truly therapeutic. There is always something worth hoping for in the face of a difficult illness.
I will tell you three stories about hope in cancer. The first is about my father. In 1980 my father, Max Lerner, was diagnosed with cancer. His physician told him he might have 6 months to live. He was 77. Six months earlier he had suffered a deep disappointment about a book project he had been working on. “I felt like my gut was just torn out of me,” he told me as we talked about the diagnosis in his cluttered book-lined study. Six months later, a non-Hodgkin’s lymphoma was diagnosed in his abdomen. Later, his physician found prostate cancer that had metastasized to his lung. Intuitively, my father felt certain that there was a connection between the deep sense of loss he had felt and the appearance of the cancer in his gut.
If anyone I have ever known loved life, my father did. Born in a Russian-Jewish community near Minsk, he came to the United States with his parents when he was age 3. He fought his way up from the slums of New York and New Haven into a life as a public intellectual that suited him perfectly. He lived almost entirely absorbed in a world of ideas, delighting in what life brought him every day. So the depression caused by his disappointment was uncharacteristic of him, and, in the light of a life-threatening cancer, that loss now seemed trivial to him. He wanted, above all, to live and live and live. He wanted to live for all the unwritten books he felt he still had in him. He wanted to live for the sheer joy he felt in life.
As we talked that day, it became clear that his fundamental question was whether or not he should undergo chemotherapy, which held no clear promise of recovery. My mother was for it. I was inclined against it. If chemotherapy offered any real certainty of recovery, I would have favored it. But with a poor prognosis, even with chemotherapy, I wondered if he should visit that additional suffering on himself.
My father underwent the chemotherapy. He suffered greatly. His hair fell out, he lost weight, and he was terribly fatigued. He had been a very youthful 77-year-old before the chemotherapy. He seemed to age 5 years in the passage of a few months. We thought he might die. As for myself, I found it incredibly difficult to watch this wonderful, rambunctious, Rabelaisian lover of life so reduced by the ravages of cancer and chemotherapy.
But my father did not die. He fought with tenacity for life. He survived the chemotherapy and very slowly began to heal. He found a remarkable doctor, James Holland, who shared his literary frame of reference and supported his strong desire to keep his male equipment intact in the face of recommendations from other physicians that his testicles be removed. “Don’t let them do an Abelard on you, Max,” Holland said. The allusion was to the medieval theologian and philosopher Abelard, who was castrated for secretly marrying his pupil, Héloise after she bore him a child. Holland proved to be the physician for my father–a physician absolutely meticulous in his physical examinations (which reassured my father greatly) who shared his love of ideas. Holland recommended a hormonal therapy that was then in use in Canada but which had not yet been released for general use in the United States–a hormonal therapy less feminizing in its side effects than the standard hormonal treatment for prostate cancer.
On this regimen, my father continued to recover. Then one summer day he suffered a heart attack and again we thought we might lose him. So heart medication was added to the cancer medications. And he fought on.
Notre Dame University offered him a university professorship. I am convinced that this public mark of esteem and the opportunity to continue his teaching, which at 77 he still loved, was a fundamental force in his recovery. He accepted the offer. He had to be well in order to go to Notre Dame, and this further reinforced his determination to live.
And so, bit by bit, year by year, he recovered. Until he was 89, he continued to write a newspaper column about world events twice a week. Until he was 87, he flew regularly from New York to California to teach a course at one of the few universities that does not discriminate against vibrantly alive 87-year-old men. His 1990 book about his experience with cancer and heart disease, Wrestling with the Angel, was greeted by the New York Times as “the best of the illness memoirs.” Dozens of cancer patients have told me how important the book was to them in their lives.
No one can know for certain why my father recovered from two such serious cancers. He unquestionably made some wise choices about medical treatment. He improved his diet and health habits moderately. He quickly surrendered all concern with the professional disappointment he had suffered and recovered his tremendous appetite for life.
Significantly, however, he never chose to undertake any of the alternative or adjunctive cancer therapies that I had begun to investigate at the time of his diagnosis to see if I could find anything of value for him. Medically, he used only conventional and conventional-experimental therapies. Psychologically, he came to recognize the survival potential of his enormous will to live and to recognize his wisdom about how to navigate the frail yet still seaworthy physical vessel of his life, but he had no interest in undertaking psychotherapy or joining a cancer support group. To me, his recovery was a joyful confirmation of my belief that every human being must find his own unique path in the effort to recover from cancer.
Above all, my father instinctively made one of the wisest choices a person with cancer can make. He never gave up hope. Even in the face of what sometimes seemed insurmountable odds and terrible suffering, he struggled on, nursing and protecting the hope that somehow he would survive.
There is an epilogue. At the age of 89, my father finally died of a stroke and a third cancer, a cancer of the pancreas. Was he reconciled to his dying? Not at all. He fought death every last inch of the way. There was for him no consoling belief in a life after death. He fought because he believed that every wonderful thing about life was contained in the life we know: the life between birth and death. He died surrounded by his family, a man who had lived fully and who had understood the uses of hope.
The Uses of Hope
If I could say only one thing to cancer patients who want to live (not everyone does), I would repeat the words of the wise man who spoke to the cancer patients in the Commonweal Cancer Help Program. Never give up hope. You can fight for your life, even in the face of tremendous odds. Give yourself permission to hope, even in the face of all the statistics that physicians may present to you. Statistics are only statistics. They are not you. There is no such thing as false hope. I saw the truth of this in my father’s experience, and in the experience of many other people with cancer who have far outlived their prognosis.
William Buchholz, M.D., is an oncologist in Palo Alto, California, who has thought and written about the “therapeutic uses of hope” in cancer treatment. He consciously uses hope as a treatment tool. In ancient times, when medical technologies were more limited, the physician’s appreciation of the therapeutic uses of hope was much more refined than it is today. I have seen people days away from death who continued to hope for recovery, and this hope for recovery was an essential element in how some of those people chose to cope with this ultimate life experience. I know many other cancer patients who were years away from death, who had no fear of death, and some who even looked forward to death with curiosity, interest, relief, or the hope of being reunited with people they loved. But although they had no difficulty accepting the prospect of death, they also had hopes: hope of a death without too much suffering; hope of a death with dignity, a death that did not impose too much on family members; hope of a death that did not impoverish the family; or a death that reunited them with a husband or wife who had died before.
I rarely if ever intervene to change the object of the hope of a cancer patient. I am much more likely to encourage family members to understand exactly what the true hopes and beliefs of the person with cancer are, and to support the patient in the ways he seeks to realize or hold these hopes, rather than pressing upon him the hopes or beliefs that family and friends wish he had. I try to support people with cancer in whatever it is that they are hoping for, knowing that their hopes will shift toward other goals in alignment with their own inner clock.
Physicians, as I have said, are trained both as scientists and as clinicians. As scientists, they are part of a culture that thrives through the inculcation of doubt. As clinicians they are part of a much more ancient culture of healing that thrives through the inculcation of hope. Often they are not aware of this dual role. They do not know the damage they do when they thoughtlessly dash the hopes of a patient facing a difficult cancer. Fortunately, there are physician-scientists who have begun to work consciously with the therapeutic uses of hope. They are practitioners of the high art of combining honesty about what they know as scientists with humility and hopefulness about what they do not know as clinicians. In the now well-known words of Bernie Siegel, M.D., “in the absence of certainty, there is nothing wrong with hope.” If a patient with a serious cancer hopes to be the one person in a hundred or in a thousand to overcome the cancer, it is not correct for the physician to propose that this is a false hope. It may be a slender hope, but that slender hope may still provide light as the cancer patient goes through the inner work of learning to live under new and difficult circumstances. The difficult issue of how to balance scientific doubt with clinical hope was one that I wrestled with throughout this book.
What Do I Have to Lose?
Kim and Sarah Brown also discovered the uses of hope. They were both 37 when they enrolled in one of the week-long workshops we offer at Commonweal for people with cancer. They looked and acted like a storybook couple. Kim had been an artist ever since he was 8, when his grandmother gave him a supersize box of 136 crayons and he said “Thank you, Grandma, I’m going to be an artist,” and drew until the crayons were worn down to tiny stubs. He was an “Air Force brat,” growing up at Air Force bases all over the world, switching schools every few years, feeling like a character out of Star Trek being beamed up and down as his father’s orders moved the family from base to base.
In Southern California, during a period of stability, he met Sarah Brown, who just coincidentally had the same last name. Sarah had been born in New York but moved to California with her mother when she was 3 after her parents divorced. “I realized by the time I was 6 that my father was dead for me–he just wasn’t there for me at all. And then my mother married another man who was terrifically negative about everything I tried to do. So the way I survived was by thinking: `Oh yeah? You think I can’t do that? I’ll show you.’ It was a great survival tool, but it was probably a double-edged sword–I could push myself too hard proving that I could do things.”
Kim and Sarah dated through high school and college, then married, and soon Sarah had established a promising career in government administration, while Kim’s work as an artist thrived. When Sarah was offered a job in Connecticut, they moved from California to New York. But Sarah’s new job proved an excruciating experience: “I was the first woman hired for a top management position and the company was run by an `old boys’ club. I tried too hard for years to make it right. Finally, I had to give up.” Sarah was then offered a top management position with a New York bank. She was working as a vice president at the bank doing some of the most creative and interesting work of her life when she was diagnosed with a life-threatening refractory anemia and leukemia. Her body was refusing to make the blood cells that she needed to survive.
Sarah was given 2 months to live. She sat at home waiting to die. One physician recommended ara-C, or cytosine arabinoside, a chemotherapeutic agent used for leukemia. Because her bones were fibrotic, she would not have benefited from a bone marrow transplant and, in any case, a suitable bone marrow donor could not be found. Her physician recommended monthly blood transfusions to keep her alive, but warned that there was no cure and that she would probably soon die of an infection. Sarah asked if anyone had survived her condition. The answer was no. Gradually, Sarah decided that she wanted to try to be the first person to recover from this obscure refractory anemia. Still receiving her monthly blood transfusion, she decided to go on a macrobiotic diet. “I was very skeptical, but I figured, `What do I have to lose?'”
A macrobiotic diet is a strict regimen that requires considerable dedication. Kim and Sarah read Recalled by Life, by Anthony J. Sattilaro, M.D., a book about a physician who recovered for many years from a life-threatening testicular cancer while on the macrobiotic diet.1 She decided she wanted to try the same thing. “The diet was a godsend for me,” said Kim. “I had tried all our life together to protect Sarah, but now that she had the cancer, all I was doing was taking her to places where physicians hurt her. With the macrobiotic diet, there was something I could do. I became the cook. .ê.ê. Sarah called me the `enforcer.'”
Sarah and Kim found, to their surprise, that the diet made them both feel much better. Sarah’s recurrent chronic headaches and menstrual cramps disappeared. Kim lost 30 lbs and returned to his college weight. They both felt light and energetic. Sarah also started getting shiatsu massage, a form of Oriental pressure point treatment, and began to practice meditation, imagery, and yoga. She read about the healing power of crystals and started wearing a crystal around her neck. Much to her physician’s surprise, Sarah did not develop the infections that he thought would soon end her life. In fact, she felt extraordinarily healthy except when she went to the physician’s office and received reconfirmation that her body was still not producing the cells she needed to live. So she continued getting the blood transfusions and started an experimental procedure to rid her body of the iron buildup that was caused by the death of the red blood cells she received every month.
Long after her doctors expected her to die, Sarah finally did die. But the spirit and hope with which she and Kim fought for her life transformed their lives. They lived with wonder at the beauty of life and the preciousness of their lives together. The experience of the cancer deeply changed their values, reconnecting them–they both said–with an idealism about life that they last felt in their early twenties. From their own experience they learned the difference between “healing” and “curing.” A cure is a medical procedure that reliably helps you recover from an illness. Healing is an inner process through which the human organism seeks its own recovery–physically, mentally, emotionally, and spiritually. I talk more about this in the next chapter.
Sarah reached that exceptional stage that some people with cancer discover where the question of whether she actually succeeded in her quest to become the first survivor of this cancer–while tremendously important–was not the most important thing for her. What became most important to her were the transcendental insights into life and meaning that she found through the fight for physical recovery. Kim subsequently became deeply convinced that Sarah’s spirit survived her death. But that is a story I will save for a later chapter.
The experience of Sarah and Kim is important because it is a vivid example of the redeeming value of hope in the face of the most difficult cancer prognosis. Not everyone would choose to fight for life in these circumstances or to make such drastic lifestyle changes. I have known others–often older people–who also want to fight for recovery but who feel at the same time that they have already had long and full lives.
Hope and Dignity
Sandra Simmons, age 65, from Taos, New Mexico, attended the same Commonweal Cancer Help Program retreat as Kim and Sarah. She also wanted to live, in the face of a difficult prognosis, but her greatest hope was that, when the time came for her life to end, she would not be an invalid in a hospital room connected to dozens of tubes. Sandra’s husband had died of cancer of the liver after going through chemotherapy and prolonged hospitalization, which she believed only added to his suffering. She had a friend, a retired military doctor, who supported her desire not to undergo chemotherapy. “Let nature take its course,” he counseled her. So even though chemotherapy might have extended her life, she decided for the time being (her decision was not irrevocable) against it. She developed a personal recovery program of nutritional supplements, herbal remedies, and Reiki healing–a kind of spiritual healing practice–which she and several friends practiced with one another on a weekly basis. But note that Sandra, too, did not give up hope. She continued to hope that she might somehow overcome this cancer and live as her parents did, into her eighties or nineties. If this was not to be, she hoped to die a death of dignity without too much suffering.
With all four of these very different people–my father, Kim and Sarah, and Sandra–hope against the odds was fundamental to the quality of their lives. My belief is that hope is fundamental to achieving the best possible quality of life with cancer. I also happen to believe, although I cannot prove this to be true, that hope helps some people who are fighting for life to achieve life extension and, occasionally, the remission of the cancer.