The following essay by Bruce D. Cheson, MD, is adapted from The Big Casino: America’s Best Cancer Doctors Share Their Most Powerful Stories, which was coedited by Stan Winokur, MD, and Vincent Coppola and published in May 2014. The book is available on Amazon.com and thebigcasino.org.
The ride epitomizes the role that a doctor can play that extends far beyond making a diagnosis and prescribing a treatment.
Albert Einstein famously compared life to a bicycle ride: “To keep your balance, you must keep moving,” he said. In 2006, my wife, Christine, and I decided to explore ways to give back to our community.
I am a lymphoma doctor, so a focus on that disease seemed appropriate. I was impressed at how many of my patients were avid bicyclists; my wife and I enjoyed riding as well. Thus, here was the perfect pairing: we’d organize a charity bicycle ride.
Given my long-term involvement with the Lymphoma Research Foundation (LRF), I approached the organization hoping to interest it in being the sponsor—and the recipient of the money we’d raise. The LRF readily agreed. We organized an exploratory committee consisting of a few cycling patients and their spouses, a couple of dedicated pharmaceutical representatives (also cyclists), my nurse practitioner, and a representative of the LRF. We needed someone who actually knew what he or she was doing, and, at a knitting convention (go figure), my wife spoke to a woman who knew someone who planned outdoor activities like hiking, climbing, and cycling events. We invited Robin aboard, and she enthusiastically agreed.
Planning the Ride
We held monthly dinner meetings at our house. The patients were at various stages of their clinical course: Alex, several years out from a stem cell transplant for rapidly relapsing Hodgkin lymphoma; Lisa, whose follicular lymphoma was progressing and would soon require treatment; and David, who had recently completed treatment for follicular lymphoma on a clinical trial. David had delayed initiation of his therapy for several months so that he could participate in a century (100-mile) charity ride in Lake Tahoe. He returned to be treated and recovered in enough time to participate in the same ride the following year.
We named our project the Lymphoma Research Ride (LRR) and commissioned a marketing student to produce a logo for posters, brochures, bicycle jerseys, and caps. A route was created, permits secured, jerseys designed, supplies purchased, breakfast and lunch planned, a DJ hired, and a photographer identified.
Celebrating the Day
Our first ride took place on a beautiful Sunday. More than 100 riders donned their LRR jerseys, checked tire pressures, and posed for pictures. We had tents for registration, breakfast, and lunch. The first-aid tent was manned by Georgetown University Hospital nurses and my fellows.
Several bike stores volunteered support staff to perform last-minute repairs, including fixing two flat tires on a patient’s borrowed bike. Other volunteers were out on the roads holding signs to guide the way and shouting encouragement; others camped out at rest stops and distributed water and other supplies. To ensure safety, there were police officers at busy intersections and volunteers at every turn. Many were patients and family members directing riders and cheering them on.
As I peddled out, I thought that there was something wrong with my bike. I was literally shimmying down the road. It took a while for me to realize that it wasn’t the bike, but my nervousness after 11 months of nonstop planning and worrying. It was a great day. About a quarter of the riders were lymphoma patients, ranging in age from a 12-year-old boy riding with his dad, himself a lymphoma survivor, to a 76-year-old rider who completed all 50 miles.
Providing Hope
We are now at 7 years and counting. Each year, I make some introductory remarks, quite different from giving a “rubber chicken” dinner talk to my peers on new lymphoma drugs or the appropriate use of PET scans. This audience hangs on to my every word. They are patients, survivors, and family members waiting for encouragement and hope—optimistic that all our efforts will lead to a cure.
I name those whom we lost during the past year, young and old, some of whom had been active in the ride. Their families are here, raising money, cheering, and deriving solace from the fact that their loved ones are not forgotten. I name our new patients who are embraced as family members.
The ride epitomizes the role a doctor can play that extends far beyond making a diagnosis and prescribing a treatment. It also gives a doctor a unique perspective on the world of the patient—its sorrows, hopes, and joys. It is also a step away from being a patient and a big step toward normalcy.
Patients ride their hearts out. One year, bandanas cover heads rendered bald by chemotherapy; the next, they show up with full heads of hair. I challenged one inactive, overweight patient to drop some pounds. He took up cycling and lost 40 pounds in preparation for the ride, making him feel healthier than he had in years. He is now a competitive cyclist.
Another lymphoma patient had presented with palpable skull involvement. She wore a hat to each clinic visit. I always asked her to remove it, so I could examine her scalp. Post chemo, she had a negative scan, and I didn’t feel the need to have her remove her hat. This time she was insistent, and when I did, I saw a smiley face painted on her scalp to honor her remission! Five years later, this same woman was at the 43-mile point of the ride with her daughter yelling, “It’s all downhill from here!” It wasn’t, but the patient was deliriously happy: she’d survived to attend that daughter’s wedding.
Another patient just out of chemotherapy managed to finish the 25-mile ride. The next year, he and his wife passed me pedaling along the 50-mile route. She was pregnant with their first child. Another man with a history of highly aggressive lymphoma missed the race the year after his diagnosis (he was just completing chemotherapy). Cured, he rode the next 2 years, but missed the next race, which fell on his wedding day. Last year, his wife was pregnant. This year, he rode again, now the proud father of a 9-month-old girl. What more could any doctor hope for?
A woman currently on a clinical trial had to rent a bike and needed instructions on how to shift gears. She finished 25 miles with pride, a group of her coworkers encouraging her up the steepest hill of the route. Another year, 18 family members and friends surprised a young patient by showing up en masse from as far away as Chicago with rented bikes and jerseys they’d designed that bore the logo: “Kick Cancer’s Butt!”
Children ride for their parents and parents for their children.
This year, an Orthodox Jewish woman rode with a long dress and a head covering. She’d seen our ride poster hanging on a bulletin board and joined us because her sister had died of lymphoma. She has promised to ride again next year.
Turning Tragedy Into Triumph
Survivors say they see the ride as an opportunity to turn something awful into something positive and how much they appreciate doctors and nurses taking time out of their lives to support them. One woman said it was a way of regaining some control over an awful situation that had taken control of her life, an opportunity to turn this disease around and fight back.
Over the years, the number of riders and volunteers has grown enormously; we have raised millions of dollars for lymphoma research. Nonetheless, every year just before ride day, my wife and I decide we have done enough; it’s time to turn it over to someone else. But with ride day comes another realization: how much the event means to all involved; the hope, the ever-growing family, the love, and enthusiasm. And so we start the wheels turning for the next year.
Gaining Insight Into the Patient’s World
In 2013, I accepted a Congressional Commendation for the work we and the LRF have done to combat lymphoma. My wife and I received the LRF’s Distinguished Achievement Award this year as well. We accept these awards on behalf of those who really deserve them: our ride committee, the riders, and the volunteers, many of whom are patients. They inspire us with their courage and remind us why we do what we do.
Too many doctors have no idea of their impact on the patient’s world beyond the clinic room. The ride gives me greater insight into this world, and it is a humbling feeling. So as I struggle to pedal up a steep hill or through the rough terrain of life, I think about the patients and how much harder it is for them to live every day with lymphoma. And off I go! ■
Dr. Cheson is Professor of Medicine, Deputy Chief of Hematology-Oncology, and Head of Hematology at Georgetown University Hospital and the Lombardi Comprehensive Cancer Center in Washington, DC.
