Psychologist Dan Shapiro, PhD, was a 20-year-old junior at Vassar College when he learned he had Hodgkin's lymphoma. He spent the next five years in cancer treatment, then lived through two relapses, a bone-marrow transplant, a number of surgeries and radiation treatment. He had his first clear scan in 1992, five months after he married Terry Wikle, an oncology nurse.
Shapiro's experience moved him to pursue a career in clinical psychology, he says, in part because of the gaps he perceived in his own treatment.
"I was thrust into a medical system that I found hostile and in many ways not helpful," says Shapiro, who chairs the humanities department at Penn State College of Medicine. "I wanted to see if I could do something to change that."
In 1995, he joined the faculty at the University of Arizona College of Medicine, where he studied physician-patient communication and how people cope with cancer. Later, his personal experiences and his longtime interest in media work resulted in his producing a number of essays for National Public Radio's "All Things Considered" and writing a book about his own experiences with cancer, "Mom's Marijuana" (2000). Curious about the influence of physicians' training on their communication style, he began working more closely with physicians, and published a second memoir about his therapeutic work with a physician who made a medical error, "Delivering Doctor Amelia" (2003).
In 2005, Shapiro learned about the caregiving side of cancer when Terry was diagnosed with breast cancer. While she recovered, their experiences, along with those of clients and others with cancer, prompted Shapiro to write "And in Health: A Guide for Couples Facing Cancer Together." The book combines psychological science, humor and the wisdom of experience to help ordinary couples navigate "the big C" as effectively as possible.
Shapiro talked with the Monitor about the book and about his gratitude for his life, which includes raising two teenage daughters with Terry.
His bottom line? "Becoming a team means working through common areas of conflict, such as how much optimism is justified, or what to share with friends," Shapiro says. "It's very difficult to be ticked at your spouse and simultaneously maintain enough organization to address a serious illness."
What motivated you to write "And in Health"?
I've been on both sides of the cancer bed. Both are very difficult. For example, I met a woman at a conference who had been relatively newly diagnosed with breast cancer, and she told me she was going to leave her husband. Her sudden reaction seemed to be fueled by her illness and the difficulties she and her husband were having in communicating. She felt he didn't understand what was happening to her and he wasn't being supportive, so she made the seemingly impulsive decision to leave. Having been through cancer myself and counseled a lot of couples where one or both people have cancer, I thought a book on helping couples face cancer might help those in a similar situation.
How common is it for members of a couple to differ in their responses to cancer?
It's extremely common. Couples bring their own issues into oncology treatment with them — different communication styles, different approaches to authority, different beliefs about illness, for example. Addressing those issues at the same time you're facing the unusually high stress of cancer can be a huge challenge.
Add the fact that [the cancer experience] is a tornado at the beginning and that you're entering a system that tends to be different from what you see on television. It's set up for the convenience of health professionals, not for patients. So couples are confronting two major new stressors at once.
What should couples keep in mind when they are undergoing cancer treatment?
First, recognize that the illness is happening to both of you. When I was sick, it felt like I was driving into an intersection too quickly. But I had some semblance of control — I had my hand on the wheel and my foot on the brake. When Terry was sick, however, it felt like I was 300 yards away and watching her drive too quickly into an intersection. Unfortunately I didn't realize until she got sick how it must have affected her when I became ill.
Another piece of advice: Forgive rookie mistakes. In the beginning, even smart, competent people do goofy things. You're stressed out of your mind, you're scared and you're probably trying to do too many things at once. Advocating for yourself and your partner, learning how to navigate the system — these are new skills, and like all new skills, you get better at them over time.
What are some common challenges couples face together while one or both members are undergoing treatment?
One major challenge is interacting with health-care providers — how to do that most effectively, so that you learn and can retrieve important information, advocate for yourself, and get your questions answered. That often requires reconciling different approaches to authority. In general, the person should get to choose which health professionals they want and, ultimately, what happens to their body. That said, the stakes often feel very high when you're interacting with physicians and it is sometimes useful to switch roles, where the patient first asks questions while the spouse takes notes, then the spouse asks his or her questions.
In general, it's worth treating health-care providers like the overworked, well-intentioned and caring people they are. But sometimes a more assertive approach is needed, because in medical environments, squeaky wheels do get oiled.
Another challenge is which information to disclose to your social networks. Members of a couple often have very different ideas of what is acceptable to share with the outside world. For example, a man in one couple I interviewed disclosed to their closest friends that his wife had had a colostomy. She was livid.
Couples need to decide in advance what they will disclose with whom, take turns asking questions, and stay organized.
How do you feel about the popular view that cancer or other illnesses can be defeated by positive thinking?
People with cancer deal with too much of what I call "New Age guilt." This is the notion that if you don't think the right way about cancer, you'll be contributing to your own demise. Everyone has down periods during the cancer experience, but from a research perspective, authenticity appears to be a more beneficial coping strategy than fake optimism.
I advocate survivor optimism — that no matter what comes down the pike, you as a couple will deal with it. Not, "Oh, don't worry, it's not going to be cancer." Or, "Don't worry, I'm sure it'll turn out great." Having blue days or negative thoughts is not going to kill you, and it's a really common part of the experience.
How can psychologists help?
Clinicians are well situated to help couples realize that the illness is happening to both of them. They can help members learn to effectively participate in their own care. They can also help them deal with the emotional issues, talk about new sexual issues that often emerge, and navigate challenges with dependence. Should it be required, psychologists can also be very helpful at the end of life.
What is your life like now that cancer has been a part of it?
When I was ill, I remember writing that to be consumed by trivial worries is a gift — a sign that your life is going really well. Right now, Terry and I are consumed with college choices and SATs, trying to get our 17-year-old daughter launched — the detritus of a normal life. I'm not someone who is glad I had cancer. I would trade all the opportunity that came with it for a chemotherapy-free lifetime. But one benefit of having a history of struggle is a finer appreciation for how to approach a particular stressor. That's what I tried to do with this book.
Tori DeAngelis is a writer in Syracuse, N.Y.
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