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| Inspiration, Dr. Dan Shapiro, PhD |
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| OA: Please provide us with some background on your Hodgkin's diagnosis and your initial reaction. How did your physician deliver the news? |
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| DS: I was diagnosed in 1987 when I was 20 years old. I'd had dizziness, night sweats, itching, and a strange symptom: pain in my shoulder with the ingestion of alcohol. I'd been to a number of physicians but it wasn't until a "doc-in-the-box" took an X-ray that the grapefruit sized tumor was revealed. The doc was young and inexperienced, he pointed at wisps on the scan and said, "that appears to be pneumonia…and that," pointing at the 14 centimeter wide tumor, "is a large, abnormal growth." He looked as scared as I felt. |
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| OA: Tell us about your treatment regimens (including your special "antiemetic" from mom). |
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| DS: During the five years of treatment I relapsed twice, had a bone marrow transplant, the maximum dosage of mantle radiation any one person should be allowed to enjoy, absorbed 12 different chemotherapeutic agents --, had surgery 9 times. I've had shingles, rashes, mouth sores, warts, headaches, nausea, vomiting, dry heaves, bone pain, gut pain and I got septic. |
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| I've sat in emergency rooms in four states in over a dozen hospitals. My temp has been as high as 106.5, I've had rigors. I've peed blue from dies from scanners, once all the hair on one side of my leg stopped growing while the rest grew. I've been bald twice. I gained 25 pounds once and lost 45 another time. I've been manic and agitated. I've been depressed and somnolent. I've been an insomniac, and at other times unable to stay awake, I've had a voracious appetite and anorexia. I've been unable to think, and at other times felt every sensation so clearly -- so vividly, that I thought someone had turned up the volume on the world. I've been so weak I couldn't walk upstairs or open doors. I've been treated like a prince and like a leper -- a total outcast. I've sat in waiting rooms for hours. I've lingered by the phone for hours. I've abandoned my belief in a just world and clung to it in the middle of the night. I've wept and screamed and dreamed and loved and begged to a god I wasn't sure I believed in.Early in the experience my anti-drug mom grew marijuana in the backyard to help me stave off the nausea and vomiting. The drug was less important to me than what she communicated by growing it - that we will do whatever it takes, even if it means recreating all of our priorities, to succeed. |
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| OA: Your mom took a huge risk for you in the face of adversity. What do you think would have happened if mom had been caught for growing marijuana in the backyard? Did you think about the possible repercussions at the time? |
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| DS: I have imagined visiting her in prison, mom with her orange jumpsuit and new tattoos. |
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| Actually, mom was ready. If she'd had to, she would have gone to prison for this cause. I think the local authorities may have known and understood what we were doing. |
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| OA: What are your thoughts on the use of alternative medicine to treat cancer? |
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| DS: While I haven't been impressed with alternative medicine folks who claim cures, I think in many cases alternatives can assist with management of side effects from treatment. |
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| For example we know that 25% of folks undergoing chemotherapy that induces nausea may also experience anticipatory nausea - they are conditioned to the building or people or even time of day and get nauseous even before having treatment. Meditation, guided imagery, relaxation training, distraction, and acupuncture can all be effective. |
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| OA: What is the best advice anyone gave you during your recovery process? |
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| DS: I worked in a maximum-security prison while I was in college; right around the time I was diagnosed. A lifer named Spank (who was in for kidnapping) taught me how to "do time." That is, you do a little bit at a time. "Don't think about doing all 25 years at once, you get through the next hour, or ten minutes, and you do as much enjoyable activity as you can during that time." I used that wisdom to get through a bone marrow transplant and quite a bit of treatment. |
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| OA: What tools did you use to cope with your diagnosis, treatment and recovery? |
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| DS: This is it in a nutshell: Even if I am confined to bed, I can still have a life. We can mourn the loss of our old life but that is not a sufficient excuse to stop living now. This was my foundation. With this as a core belief I had to structure life on the bone marrow transplant unit, or at home, such that I could still listen to great music, enjoy great movies, and talk with friends and my wife. |
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| OA: How should physicians broach the topic of infertility with a recently diagnosed cancer patient who plans to undergo chemotherapy? |
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| DS: They should educate themselves about fertility preserving treatments. I strongly recommend the FERTILE HOPE web site for anyone working with cancer patients of reproductive age (www.fertilehope.org). The technologies are moving very quickly, particularly for women where we are learning how to use frozen tissues to produce eggs. |
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| OA: As a licensed psychologist and someone who has been a cancer patient himself, what advice would you give medical professionals to best deliver a cancer diagnosis? |
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| DS: Minimize my wait for the bad news. The world slows to a crawl when I'm waiting to hear if my life is going to implode. |
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| When you come in the room spit it out. Get to the bottom line quickly. I don't hear anything you're saying until you get to the bottom line. (Research also confirms that patient don't remember anything you say before the bottom line either). I don't need drawings. I don't care about the biological mechanisms nearly as much as you do. I care about my chances and how tough the treatment will be. |
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| There is no perfect way to give bad news. Tell me you'll stay with me through the process. You'll be there for me. Tell me there's a plan and what we are going to do next. Make me write down anything I absolutely need to remember. |
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| Don't do the good news/bad news thing. As in, "The good news is we have excellent parking for patients who need chemotherapy, the bad news is, you're going to need it." When you are learning you have cancer, there isn't good news. |
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| OA: What made you decide to pursue a career in psychology? |
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| DS: I experienced the bone gnawing vulnerability of being a patient and thought I might be able to assist other folks. |
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| OA: Tell us about your practice and patient base. |
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| DS: One third of my patients are physicians, the remainder are patients facing a variety of medical ailments. |
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| OA: What do you see as the next leap in the psychological treatment of cancer patients and physicians? |
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| DS: I think the entire system is readying for a massive change. Health care costs too much and it has become a drag on the economy as small businesses (and some large ones) stagger to keep their employees covered. When the implosion comes I think we're going to see more specialization units - places where people go just to get their heart disease addressed, or cancer, or diabetes. Keep in mind that alternative medicine is a multi-billion dollar industry - partially because people want holistic care -- Those programs that incorporate the human element are likely to garner greater market share, thus I see psychological treatment built far more into the health care of the future than now. But I don't think it's going to be through therapy. I foresee mental health "coaches" or "tour guides" who help orient newly diagnosed patients to the psychological challenges they face. |
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| On the physician side, there is a movement to help physicians live more balanced lives, starting in medical school. The movement has stalled and failed to break into residencies where some of the worst habits are learned, but it's only a matter of time. |
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| OA: How has your outlook on life changed since you were first diagnosed? |
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| DS: I wrote Mom's Marijuana specifically to talk about that massive perspective shift. Now I enjoy trivial worries - if you can obsess about a flat tire or overdue bill, your life must be pretty good. Humor and relationships are more important to me now. |
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| OA: Are you currently involved with any oncology related organizations/societies? |
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| DS: I give quite a few talks to oncology organizations and am especially assisting a non-for-profit known as Fertile Hope (www.fertilehope.org) |
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| Dan Shapiro, Ph.D. is an assistant professor in the college of medicine at the University of Arizona. He holds joint appointments in psychiatry, psychology, and internal medicine. His research focuses on coping with medical crises and physician-patient communication. His web site is www.danshapiro.org. |
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