As David approached 50, he was on the path to a healthier life: he quit smoking, had quit drinking alcohol, and was more physically active . However, in the summer of 1999, he noticed that he still was becoming increasingly fatigued. One day, he and his wife, Allison, were riding bikes in Acadia National Park when he became exhausted from peddling up the hill. A 5-year-old on a tricycle effortlessly raced past him, and David knew that something was wrong.
Diagnosis and Treatment
Soon after, David went to see his doctor, who ordered a battery of tests. The bloodwork revealed a high white blood cell count. Following an appointment with a hematologist, David was diagnosed with chronic myeloid leukemia (CML) in October 1999.
Leukemia was a wake-up call for David. “You think you’re going to live forever, and then you’re 50, and maybe you’re not going to live forever.”
At that time, CML was usually fatal. His doctor told him, “The bad news is you’ve got leukemia, but the good news is that it won’t kill you for a couple of years. Go do whatever.” The doctor also told David that his best chance of survival included a bone marrow transplant. David has five brothers, and his youngest brother was a perfect match.
In addition to the bone marrow transplant, David’s treatment plan included chemotherapy and radiation. His treatments, unfortunately, led to thyroid cancer, and his thyroid was removed. He also developed skin spots because of the intense radiation sessions.
The radiation included 6 radiation treatments, each 17-minutes long. During each session, the medical team would place him on a slab in the middle of the treatment room and beam radiation all over his body to kill the cancerous cells. David was permitted to select music CDs that the medical team would play on the massive room sound system, to help him pass those difficult times. Music from a favorite English guitar jazz group was blasted during many of those sessions.
Throughout his treatment, David used the power of positivity and music to keep moving forward. “One of the slogans I used in the hospital was ‘Day by day, I’m getting better.’” David was later able to meet the English jazz group whose music he had enjoyed during his treatments when Allison arranged for the two of them to go backstage during one of the group’s concerts. The musicians signed the CD that David had listened to during his radiation sessions. He still has the CD today.
Although David gradually became stronger after his treatments, his doctors found traces of leukemia in his blood a year after the transplant. As part of a clinical trial, David received a new drug to treat CML, a targeted treatment later known as imatinib (Gleevec). He stayed on imatinib for 10 years before his medical team weaned him off the medication.
David has now been a cancer survivor for more than 20 years. His experiences with his treatment were not always easy, but he is grateful that he had a wonderful medical team whom he trusted. It was dealing with the insurance companies that frustrated him the most. David found it difficult to get some of his treatments approved, especially imatinib, because they were new or in clinical trials at the time.
Finding—and Providing—Support
When David was diagnosed with CML in 1999, it was difficult to find information. The tools we use today to navigate the internet did not exist then, and the booklets in David’s doctor’s office did not include information on leukemia. David then discovered a group focused on leukemia who offered to send him information. The organization, now known as the Leukemia & Lymphoma Society, also offered to put him in contact with a leukemia cancer survivor and shared information on how to join a support group. After speaking with the cancer survivor, David felt more empowered. The “cancer didn’t stop, you know, but having support groups helped.” David was so grateful for the information and support he received that he reached out to volunteer with the organization even before his bone marrow transplant.
Throughout his treatment, Allison was his main source of support, also serving as his caregiver and motivator. She took time off work to care for him. Once he was well enough for her to return to her job, she and David would go on walks in their neighborhood after she got home from work, for fresh air and to get David’s strength back up. “I’d have no energy. So I’m holding on to her as we’re getting out there, and she’d say, ‘Okay, see that stone there in the road? Yeah, let’s walk to that.’ And just as we would get up to it, she would kick it ahead and say, ‘Okay, well, let’s walk up to there.’ I’d go, ‘Okay,’ until I needed to go back. So that was our getting better every day, where the stone kept moving farther down the street, and then some kid came and picked up the stone.”
After recovering from his treatments, David felt strongly that he was meant to help people, and he became involved in multiple volunteer opportunities. He took joy in being able to provide comfort and knowledge to other cancer survivors, just as he had received. While attending a retreat with other cancer survivors, David spoke with the leadership board and shared some suggestions for their program; they then offered him a position on the board of trustees. He wanted to make the program less clinical: “This is for survivors. This should have a heart and soul. It shouldn’t feel like you’re going to a cancer center to hear a doctor talk ….” He went on to implement a program called Heart and Soul, in which survivors, patients, and other members of the cancer community could come together on an emotional level rather than a clinical one.
David also became involved with the expansion of the Stowe Weekend of Hope. Initially, the program was geared toward breast cancer survivors, but David helped expand the program to include people diagnosed with leukemia and other blood-related cancers. As a result of his work with the Stowe Weekend of Hope, David was selected to help write the state cancer plan for the Vermont Department of Health and to manage the state cancer coalition.
David established a goal to bring positive change. “You know, you can change the world for the better, but you can do it one person at a time.” His goal was to help one person dealing with cancer a day. Some days, he helped 1; other days—like during the Stowe Weekend of Hope—he helped 800.
David also volunteers for Be The Match , a part of the National Marrow Donor Program. The program matches people who need a transplant with people who are willing to donate. The program is federally funded, and every five years David goes to Washington, D.C., to help ensure that federal funding for the program continues. When in Washington, David also speaks with people awaiting transplants as well as with hospital staff.
Words of Advice
David wants others to know that although dealing with cancer is hard, positive thinking can help. He also emphasizes the importance of caregivers. “It’s not just the patient, but the whole family is impacted. So, I think you need to recognize your caregivers. If you’re the cancer patient, make sure you give them a hug every day and thank them.”
Image: David
It’s not just the patient, but the whole family is impacted. So, I think you need to recognize your caregivers. If you’re the cancer patient, make sure you give them a hug every day and thank them.”