Dan Shapiro has a website at http://www.danshapiro.org
Here is a great interview with the New York Times from 2001:
May 15, 2001
A CONVERSATION WITH: Dan Shapiro; A Doctor’s Story of Hope, Humor and Deadly Cancer
By JANE E. BRODY
In May 1987, Dan Shapiro, then a 20-year-old junior at Vassar College, discovered he had Hodgkin’s disease. After seven months of treatment with four chemotherapy drugs and radiation, he seemed healthy again.
In 1988, in his first year of graduate school in clinical psychology, he counseled a young girl named Jodi who was not doing well after a bone marrow transplant for the same cancer and who soon died. Six months later, he learned that his own cancer had returned and that his only hope was a bone marrow transplant. His survival chances were 40 percent. Sixteen months after the transplant, in July 1991, he had a second relapse, and few options remained.
He did a lot of homework and ultimately sought treatment from a leading Hodgkin’s disease expert, Dr. Saul Rosenberg at Stanford University Medical Center. ”I don’t think I can cure you,” Dr. Rosenberg told him, ”but I’m going to try.”
It is now nine years after treatment at Stanford. Dr. Shapiro has received a Ph.D. in clinical psychology from the University of Florida; since 1995 he has been an assistant professor in psychiatry, integrative medicine and psychology at the University of Arizona medical school. He is married to Terry Wikle, a nurse he met on the bone marrow transplant unit, and they are parents of Alexandra, 5, and Abigail, 18 months, conceived through artificial insemination with his own sperm, frozen before his first chemotherapy at age 20.
And he wrote ”Mom’s Marijuana: Insights About Living,” a collection of essays not about marijuana but rather a tribute to his otherwise conventional mother who, when her son became ill, grew marijuana in her backyard in Connecticut to help him withstand the nausea and vomiting brought on by chemotherapy.
As a clinical psychologist, Dr. Shapiro applies what he has learned to help other patients get what they need from doctors and to help doctors practice a more humane and integrated form of medicine.
Q. Before your cancer was diagnosed, you investigated your grandfather’s extremely difficult life — barely escaping from the Nazis, being separated from his wife and children, suffering from tuberculosis that killed him at an early age. You doubted whether you were strong enough to withstand what he went through. What helped you muster the needed resilience?
A. It helped me to know about my grandparents’ struggles and to read other people’s histories of struggle and adversity. I think that’s why memoirs are so popular. We’re hungry to know how others coped with challenge and trauma. I didn’t think ”why me, how could I be singled out?” but rather that crisis visits all lives. There are periods of calm and periods of crisis.
Q. While battling your cancer, you made a brief foray into alternative medicine. You asked a Chinese homeopath for something for cancer, and he said, ”See a doctor.” What would you advise cancer patients about alternative medicine?
A. That Chinese doctor summed up the best of alternative medicine. Good practitioners recognize the limits of their ability and where their expertise lies but they don’t claim to cure cancer. In acute situations, you need to go to conventional treaters. But for a lot of chronic illness, it can be very helpful.
Q. How can a lay person distinguish between a responsible alternative medicine practitioner and a quack?
A. Unfortunately we don’t yet have licensure for alternative medicine, so it’s tricky. Often it’s by word of mouth. Hopefully, as the alternative medicine movement continues to swell, conventional physicians will help us separate the quacks from the helpful.
Q. You quizzed your radiation oncologist about treatment side effects. If all patients did this, wouldn’t some refuse treatment?
A. About 85 percent of patients are information-seeking and want to know the limitations as well as the strengths of their treatment. Unfortunately, a lot of physicians overestimate the treatment benefits and underplay the side effects. In the short term more people accept treatment, then become surprised, dismayed and often panicked when predictable side effects occur. If patients know about side effects in advance and are taught how to anticipate and cope with them, they would do a lot better.
Q. A vibrant sense of humor helped you through the repeated recurrences and many rounds of treatments with horrific side effects. How can others adopt a life-affirming perspective in the face of crisis?
A. We all have a choice as to how to respond to stressful situations. Take losing one’s luggage. We can respond with humor: ”Has my luggage gone somewhere interesting? Is it out having a good time?” Or we can take it as a calamity. When you’re stressed, your heart pounds, pupils dilate and catecholamines pour into the bloodstream and suppress immunity. So it’s probably physiologically helpful to have a sense of humor.
Q. You say you were helped by writing all through your therapy. For someone not comfortable with writing, can talking help?
A. Behavioral scientists have shown that expressing emotions may confer immunological benefits. Though I didn’t know that at the time, I filled notebooks randomly, especially when my treatment was particularly challenging. One of our goals is to match a person’s style of emotional disclosure with the mode they use to do it. For some it’s writing; for others it’s talking.
Q. You wrote that being ”high on hope” kept you from giving up, even when near death. Can health professionals foster hope?
A. Health professionals should help patients find things to hope for. But patients also need room to mourn their losses. Our ”put-on-a-happy-face” culture can deny patients an opportunity to grieve lost life expectations. A lot of patients have New Age guilt because people around them say, ”If you’d just be optimistic, you’d survive.” We deny people the opportunity to say: ”You know what? This stinks.”
Q. What if doctors were more willing to tell patients when the end is near instead of hitting them with more treatments?
A. Patients would have an opportunity to talk about their lives and say their goodbyes, which would help achieve some sense of closure, not only for the dying but also for the people who will grieve them. Research has shown that grieving is worse and more prolonged when there are unresolved issues.
Q. How can doctors learn to be more accepting of the end of life?
A. There’s a conspiracy of silence in medicine around death and dying. Physicians have no opportunity to ventilate their feelings and soon become hardened to death in order to survive emotionally. When a patient dies, the physician should be able to sit down and talk about it with other physicians and about what a dignified optimal death entails.
Q. How can patients increase their chances of receiving humane treatment, of being treated as a whole person?
A. Most patients have been brought up on ”Dr. Kildare,” ”Marcus Welby,” ”Chicago Hope” or ”E.R.”, where the physicians are largely very caring, have some degree of self-knowledge and plenty of time for their patients. The reality is quite different. I try to give patients an understanding of what 15-minute medicine is really like. I teach them to be very organized and to insist on being treated with dignity.
I teach them to keep an illness notebook, to write down all the information in one place, go in with all their questions written down, go with more than one person and bring a tape recorder. I have patients practice assertiveness: how to get the physician back into the room when he’s about to walk out and you haven’t had your questions answered. It doesn’t matter if medical schools take in more humane people, they can still beat out all their empathy.
Q. You work with Dr. Andrew Weil, the guru of integrated medicine. How has this affected your thinking about medical care in this country?
A. Clearly, patients are hungry for physicians who will take time with them. I understand the economic pressures today to make medicine less expensive, but I think we’re being penny-wise and pound-foolish. When physicians take the time to give sound advice, they have the opportunity to prevent future ailments because patients often try to make the recommended changes. Also, the national hunger for physicians who understand the best of alternative and conventional medicine far overrides anything we can do. We also need a medical insurance system that reimburses for treatments like nutrition and exercise counseling and we need parity for mental health. About 50 percent of patients come to their physicians with mental health issues that show up as physical illness because it’s easier to talk about physical symptoms.
Q. Your book has a very catchy title: ”Mom’s Marijuana.” What stance should our country take on medical marijuana?
A. I think it’s absurd that physicians have in their arsenal drugs that are much more biologically addictive, like morphine, Valium, Percocet and not have in their arsenal marijuana, which is useful in some circumstances.
Q. It was just luck — your mother meeting someone in a waiting room — that resulted in your banking sperm before your treatment was begun. Is this common practice now?
A. It should be standard practice for oncologists who treat people of reproductive age. Many always do it; some never do. Fertility is the No. 2 concern of patients who survive, the No. 1 concern being relapse.
Q. You seem to find joy in so many little things, like a child jumping in a rain puddle. Were you always like this?
A. It was honed during illness, and it’s the fuel of resilience. When my body and mind slowed, I hungered for more input and studied the things around me with more energy. Now it’s a richer world, a constantly unfolding, fascinating series of what some people would consider pedestrian events — the way water beads up on a window, the way a child takes to a lemon Popsicle — and small human interactions.
Our culture revolves around acquisition of material goods, and that turns out to be a pretty dissatisfying pursuit. It is very important for people to have meaning and purpose in their lives and connection to other humans.