I began to understand that laughter and joking were one family’s way of coping with a very stressful situation…. That realization helped me understand that every patient, every person, every family has a different way of coping.
—Julie Vose, MD, MBA, FASCO
The following essay by Julie Vose, MD, MBA, FASCO, is adapted from The Big Casino: America’s Best Cancer Doctors Share Their Most Powerful Stories (May 2014), coedited by Stan Winokur, MD, and Vincent Coppola. The book is available on Amazon.com and thebigcasino.org.
When I met Cindy, she was very ill. Wracked by high fever, fatigue, anemia, and other debilitating symptoms, she’d lost 30 pounds. Her liver and spleen were enlarged. Her diagnosis: a rare, advanced, and very aggressive peripheral T-cell lymphoma (PTCL). In simple terms, PTCL is the uncontrolled growth of a subtype of an immune system cell known as a T lymphocyte.
She was 33 years old and the mother of two young children. At the time, the outlook for PTCL patients treated with available chemotherapy was exceedingly bleak: only about 30% were still alive 5 years later.
Cindy arrived at the University of Nebraska Medical Center surrounded by her husband, parents, and several close relatives, all there to support her in a very difficult time. Cindy was a nurse; her husband a farmer. They lived in a small town about 100 miles from the university.
It fell to me to outline a proposed treatment and, frankly, to convey the gravity of the situation. I gave my presentation exactly as I’d done it all too many times before. My field of expertise is lymphoma—the most common blood cancer—and I was very much a by-the-book doctor. To my shock and surprise, they made light of what I said. I thought they didn’t understand.
Were they taking her symptoms lightly? Not paying the attention they should to the telltale fevers, skin rashes, and fatigue? I sort of quizzed them just to make sure they understood what was going on. They seemed to understand, but they just didn’t react the way I expected.
Using Laughter to Overcome Fear
This was early in my career. I was a curious, driven, scientifically oriented person. My father was a pathologist. My first exposure to disease was in the lab, not in the clinic. What threw me was that they didn’t seem to understand the seriousness of the situation. No matter how hard I tried, they would come back with jokes and laughter.
Cindy underwent months of CHOP, the combination chemotherapy standard for non-Hodgkin lymphomas. CHOP worked at first. Her fevers went away. The extensive rashes she’d suffered went away. Her liver and spleen decreased in size. However, toward the end of the therapy, cycle 5 of 6, her symptoms came back. Her lymphoma had progressed during the treatment.
The prognosis after relapse is much worse: almost 0% of patients are still alive 5 years after diagnosis. Through all those months, her very large, very strong family was by her side. To my astonishment, everyone continued to make jokes, tell stories, and generally act as if everything was okay, fine even, when, in fact, things were going straight to hell.
I was raised in a small town—Mitchell, South Dakota—but I have to say, I began to ask myself, “Was this bunch of farmers missing the point?” As it turned out, I was the one missing the point, a vitally important point. Cindy’s relapse drove our decision to recommend a stem cell transplant. Our medical center is among the pioneering institutions in this field, and Cindy had a sister willing to volunteer as a donor—yet another example of her family’s tight bonds. In the procedure, such a close match makes graft-vs-host disease much less common.
We got Cindy’s lymphoma under control with additional chemotherapy, a regimen called ICE, for two cycles. After her lymphoma was back under control, Cindy was admitted for her transplant.
A stem cell transplant is a very intense treatment. It typically involves patients being hospitalized for months on end, and the very real possibility of life-threatening infections and other complications. Cindy was in the hospital for 3 weeks and endured lots of side effects: low blood counts, infections, weakness—the whole range of potential problems.
She endured three further hospitalizations, and through it all, her family was always there to support and help her. By now, a new term had begun to enter my therapeutic lexicon, laughter therapy.
When Cindy was feeling well, they brought the new baby to see her and showered her with lots of good loving care. But when things were going badly—she was fatigued, weak, suffering nausea—they never were forlorn or despairing. The jokes, as they say, kept on coming. Her husband, parents, siblings, and various aunts and uncles were always positive and hopeful, always reminding her of past good times and the better days ahead. I could see it all begin to help Cindy move forward with her recovery.
Eventually, she got through the complications of the transplant and did well. On restaging—a series of PET scans, bone marrow biopsies, and other diagnostic procedures to reevaluate the lymphoma 100 days after her transplant—all looked good. She was clean.
Time passed. There were no long-term complications of the transplant, no graft-vs-host disease. And then, of course, there were years and years of follow-up. Fifteen years later, she’s still disease-free. It turns out she’s a joker, too. Let me also say that Cindy is one of the lucky ones. Not every patient has such a good post-transplant outcome.
The story doesn’t end here. It’s my story as well. I had lessons to learn. After a while, I began to understand that laughter and joking were one family’s way of coping with a very stressful situation. Of course, they’d always understood the seriousness of the situation.
That realization helped me understand that every patient, every person, every family has a different way of coping. In Cindy’s case, it was: Make sure you bring up the good things in life. Remember the fun times. Bring out the laughter. It can be a powerful tool.
Know Your Patient as a Person
I try to get to know each patient, the patient’s family, and their modus operandi so I can understand what works best in dealing with each unique situation. In short: Know your patient as a person.
A second lesson is that not every patient follows the textbooks. We know what we have seen and what’s in the textbooks, but as we go further along and take care of more and more patients, we observe things happening outside the textbooks. We don’t understand why, but there are exceptions to the rules. We have to be ready for these exceptions and ready to think outside the box for each patient.
Fifteen years have gone by since I first met Cindy. I’ve shared these lessons with new generations of medical students. Ultimately, I had nothing to teach her family that they didn’t already know. To their credit, I learned a lot from them. ■
Dr. Vose is Chief of Hematology-Oncology at the University of Nebraska Medical Center in Omaha, Nebraska, and President-Elect of ASCO. Dr. Vose’s Presidential term begins in June 2015.