Dr. Shapiro’s Real-Life Tribute to Oncology Nurses

SAN DIEGO—In his keynote address—"A Funny Thing Happened on the Way to Chemotherapy"—Daniel Shapiro, PhD, used his gift for stand-up comedy to relay an important message: Everyday, in ways they don’t even realize, oncology nurses make a huge difference in patients’ lives.

Drawing on his own experiences as a cancer patient, Dr. Shapiro emphasized nurses’ critical role in providing a human touch in the often-dehumanizing world of cancer treatment.

The Rest of the Story
At the ONS congress, Dr. Shapiro presented 8 of the 66 essaysfrom his book Mom’s Marijuana: Life, Love and Beating the Odds(Vintage, 2001).

Speaking at the Oncology Nursing Society’s 26th Annual Congress, Dr. Shapiro regaled conference attendees with a series of anecdotes from his 5-year bout with Hodgkin’s disease. 

Diagnosed in 1987, Dr. Shapiro weathered his initial treatment and two relapses (including a bone marrow transplant) while earning his PhD from the University of Florida and then attending Harvard Medical School.

At Harvard, he completed an internship at McLean Hospital and had an endowed fellowship in medical crisis counseling at Boston Children’s Hospital, the Dana-Farber Cancer Institute, and Brigham and Women’s Hospital.

Dr. Shapiro, now assistant professor of integrative medicine and psychiatry at the University of Arizona College of Medicine, Tucson, peppered his real-life stories with humorous explorations of "taboo" subjects such as medical marijuana and sperm banking.

In one vignette, his mother, who was initially horrified at his request for medical marijuana, has an overnight change of heart and treks downtown to the local head shop—the "Stairway to Heaven"—to buy the necessary paraphernalia. His parents then convert the family’s beloved vegetable garden, zealously cultivating a bumper crop of marijuana plants for their son.

Another anecdote recalled the daunting task of collecting a sperm specimen with his mother just outside the door and his father poised "like Mario Andretti" ready to race across town with the precious cargo.

Yet, just beneath the surface of these entertaining tales, ran a serious theme—the cancer patient’s need to be acknowledged as more than a set of symptoms on a chart. Dr. Shapiro read from the coldly impersonal notes on his chart and then recounted his attempts to remain a "real person" with some control over his own life.

. . . The patient underwent nodal biopsy. Pathology confirmed recurrent nodular sclerosing Hodgkin’s disease. Further CT scan evaluation revealed a possible increase in his residual mediastinal mass. No other disease detected at the time of this relapse. The patient will now receive an autologous bone marrow transplant. The probability of surviving transplant is 75%. The 5-year survival rate, given his current relapse, is at least 40%. . . .

Against this impersonal background, Dr. Shapiro demanded to be recognized as a person, not a case. His subversion began with his attempt to make his room in the transplant unit his own.

"I thought really carefully about the things I wanted to bring with me to the transplant unit. By then I had begun seeing patients, and I knew that there was a wide variation in how patients lived in their rooms," he recalled. "I put up landscapes, erotic prints, a poster of a snow leopard. I brought a VCR, movies, and some goofy things like a battery-operated water gun and a Groucho Marx nose and glasses."

But, he said, the most important thing he brought in with him was a battery-operated, remote-controlled red light. "I put it on the outside of the door because I had seen nurses walk in on patients while they were using the commode, and I was going to have to use one in the middle of the room. It was embarrassing for everyone," he said.

Together, he said, these changes altered the social landscape of the room. "With the remote-controlled red light, I had some privacy, some control over who came in and when," he said. "I agreed not to leave it on forever, and the staff agreed to respect the light. It gave me some semblance of a normal room. It became my room, a real person’s room. Instead of belonging to the professionals on the unit, it belonged to me."

The Water Gun Incident

Dr. Shapiro spoke of two physicians who entered his room unannounced, without speaking to him, and who began discussing the details of his case.

". . . This is a 22-year-old white male who presents with stage IIB relapsed Hodgkin’s disease . . ." Each time he tried to speak, the older of the doctors scowled and cut him off, putting his hand up in a gesture of "Stop!"

"Stop! the hand said, and then the younger one continued ‘. . . Well, his CBC obviously isn’t back yet, but . . .’ and I felt something like when I was 12 years old and that bully took my bike and said it was his now. I felt my room slipping from me.

"But I needed it. I needed it more than the doctor did. It was my room. I fought hard for it. I said ‘Excuse me’ one more time, and this time the hand flew out from his shoulder: "STOP!" Then the younger one continued ‘. . . In summary, this is a 22-year-old white male. . . .’ Then I reached for my trusted friend."

In a final attempt to be acknowledged, Dr. Shapiro blasted the three with his "super-soaker" water gun.

"To be fair," Dr. Shapiro continued, "there’s a lot about what happened next that I don’t remember. I do remember some sputtered utterances of surprise, hands raised in defense, and a wad of gray hair over a wet forehead. The next thing I definitely do remember is sitting there thinking, ‘Man, those guys can really move!’

"I anticipated having some guilty pangs—you know, crossing when the crossing guard says ‘Stop!’—but none materialized. Instead, I felt oddly energized."

Dr. Shapiro had high praise for oncology nurses—for their humanity and their small gestures of kindness, which can mean so much to a cancer patient. In a final story, he relayed how helpless and dehumanized he felt in the transplant unit one day. Three weeks into his treatment, he finally felt clear-headed enough to try to write—his way of making sense of the world.

As he began to write, he dropped his pencil and then spilled urine all over himself as he tried to retrieve it. Struggling and helpless, in a heartbeat he went from being a person to feeling dehumanized. Suddenly a nurse appeared from nowhere.

In the Blink of an Eye

"In the blink of an eye, I was clean, I had a fresh pencil and a pad, and I was warm—and then she was gone. I didn’t have the words at the moment to thank her. I wasn’t articulate enough to label my experience as it was happening," he said. "But when I went back 3 weeks later to thank her, she had no memory of the event at all. She had no idea of her immense power."

"So I am going to tell you. For the work that you do every day. For the movements you make thousands of times a day. For those little re-humanizing moments. From those of us who are wordless and vulnerable, to all of you, I say thank you—and please keep it up."