Special Issue of the NCI Cancer Bulletin on Survivorship
This is the second article in a series of stories related to cancer survivorship. Look for the next article in our survivorship series in an upcoming issue.
Spokes of Hope: Surviving Cancer and Riding On
A headwind slowed the riders all the way from Indianapolis to Pittsburgh, and then the hills began. For Cindi Hart, a “flatlander” from Indiana and two-time cancer survivor, the gentle hills started to feel more like mountains.
“We were climbing 15 percent grades that seemed to go on forever,” recalled Hart, who organized the ride to raise awareness of cancer and advocate for research. “But this was not a race, and when people dropped back, we would stop and wait for them. Just as in the journey through cancer, no one should have to do it alone.”
The riders were from Cyclists Combating Cancer, an international support group of people touched by cancer who share a passion for cycling. This online community had been Hart’s primary support group during her illness, and last month more than 100 members rode in a series of regional rides around the United States that included visits to several NCI-designated cancer centers. About a dozen riders met in Washington, DC, on September 16, including some who had started in Indiana or joined along the way.
“I’ve never seen so much compassion and support and love and hope as on this ride,” said Christopher States of San Francisco, a two-time cancer survivor who flew in to join the ride from Pittsburgh to DC. At the cancer centers, he and others shared their stories of coming back from multiple cancers and drew inspiration from patients who are still battling the disease.
These patients and their caregivers joined the tour by signing banners that traveled with the cyclists to Capitol Hill, where the group met with Senator Richard Lugar (R-IN) and other lawmakers, including Rep. Steven Rothman (D-NJ), who sponsored their visit. In what the cyclists described as fruitful discussions, they talked about the challenges facing cancer survivors and their caregivers.
Turning Negatives into Positives
The cyclists were frequently overcome with emotion by the stories of the remarkable patients they met. In Pittsburgh, the riders met Michelle, a 22-year-old mother who had undergone a bone marrow transplant for leukemia. Because her immune system had been suppressed, she had not been able to see her 3-year-old son for 3 months. But at the urging of her nurses, she spent about an hour talking with the cyclists.
“We told her our stories and that we’d been in the chemo chair, that we’d been hairless,” Hart said. “We’d been where she was, and now we were on the bike ride trying to make a difference in this cancer fight. We encouraged her to stay active and said that every step she took down that hallway would put her one step closer to her son.”
The cyclists did lots of listening, as well. As they got up to leave, the young mother embraced one of the riders, Jeffrey Rowe of Knoxville, TN. “She just wept and thanked us all for giving her the courage and the hope to go forward in her treatment. Attitude is everything—it’s one of the Lance Armstrong Foundation manifests,” Hart recalled.
Rowe is a professional speaker who survived brain cancer at age 17. When he signed on to the tour last spring, he was excited to mark his upcoming 20th anniversary as a cancer survivor on the ride. But in July doctors found two new tumors. For Rowe, the meaning of the ride changed, and he focused more than ever on turning negatives into positives. He was hopeful that by sharing his own experiences with cancer he could help patients like Michelle avoid some of the struggles he had endured.
Focusing on Survivors
Hart was in the midst of chemotherapy when she came up with the idea for the Spokes of Hope tour. A former nurse who had raced bikes for nearly 3 decades and also coached, she was looking ahead to the day when she’d be back riding. She approached members of Cyclists Combating Cancer at a gathering for cancer survivors and advocates sponsored by the Lance Armstrong Foundation in July 2008.
More than a year later, as a final stop before reaching the Capitol, the cyclists visited the NIH campus in Bethesda, MD, where they toured the Clinical Center and gave a presentation to NCI officials. They also heard about the latest research on the complex health and psychosocial issues facing some 11.4 million cancer survivors in the United States.
“Being cancer-free does not mean being free of cancer,” Dr. Julia Rowland, director of NCI’s Office of Cancer Survivorship, told the cyclists. “It’s not over when it’s over.” Cancer treatments can have long-term and late-occurring side effects, and survivors need to have their health monitored over time. The goal, she added, is not just to live longer but to ensure that a person has a high quality of life after a cancer diagnosis. She praised the cyclists as shining examples of the remarkable resilience of cancer survivors.
Researchers have not quantified the benefits of cycling after a cancer diagnosis, but the riders in the room did not need a study to validate their experiences.
“I have no doubt that I’m alive today because of cycling,” said Dr. Kenneth Youner, a retired gastroenterologist from New Jersey who was diagnosed with kidney cancer in 2003. He was taking sunitinib (Sutent) for a recurrence during the tour. A former marathon runner and longtime cyclist, he said that regular exercise had helped him come back from aggressive treatments that left him unable to get out of bed. He was riding in honor of his wife, Cecile, who died of cancer last year.
Online Tool for Creating Survivorship Care Plans Evaluated
A new survey has found that cancer survivors and health care providers were willing to use an online decision-making tool called OncoLife to create survivorship care plans and were satisfied with the information provided, according to a report in the Journal of Medical Internet Research. The Institute of Medicine recommends survivorship care plans for all cancer survivors.
“You Are My Sunshine”
With bright yellow jerseys and Livestrong wristbands, the cyclists were often stopped on the street. Upon learning about the ride, a woman in Pennsylvania asked the cyclists to visit a friend who had just come home after a bone marrow transplant and was despondent.
When the cyclists arrived at the woman’s house, she came to the door wearing an isolation mask. As she looked out at the people and bikes assembled on her lawn, the friend said, “I have brought you a gift.” With that, the cyclists started to sing, “You Are My Sunshine.” Everyone then held up three fingers and shouted “three,” because that was the friend’s symbol for I Love You.
“The woman smiled and cried, and we could tell by her eyes that she had been touched,” said Hart. After the woman went inside, her friend turned toward the cyclists and went from being almost giddy to breaking down and sobbing. Hart embraced her and realized that the song was also a gift for the friend.
“Friends and family feel so helpless when a loved one is faced with cancer, and they often don’t know what they can do,” Hart said. “Sometimes even the smallest gift—even just to see a loved one smile—is the most precious gift anyone could give.”
A Final Ride
The song and “3” became themes of the trip. When the group reached the Capitol, they carried armloads of signed banners into the building along with several bikes.
After clearing the security checkpoint, Dr. Youner hopped on his bike and rode down the hallway. He may not have been the first citizen to ride a bike in the Capitol, but he certainly was the first to do so in socks with the words “Cancer Stinks” written across the bottom.
Afterward, he said with a smile, “I couldn’t resist.”
—Edward R. Winstead