Long-term survivor of acute lymphoblastic leukemia (ALL), Bill has been gardening since he was 12 (“I’ve built three greenhouses in my life. I found some Japanese trailing petunias that are out of this world. I order the seeds and baby the tiny plants from seed. We went out on a limb this year and added two blueberry plants. I just finished canning 5 quarts of blueberry jam”). He paints (“I’d inherited some talent and some skill from my artist father – and I had a knowledge of colors from my photography training. I sucked for a long time and I just kept trying and throwing away and trying again. Pretty soon, they got a little better, and a little better.”). He poured a concrete vanity as part of his whole-home remodeling project (“You can learn to do pretty much anything on the internet. You just have to be mildly skilled at using big tools.”) and is a part-time fairway mower at his local golf course (“I like being forced to get up at 4am. Plus the free golf, free range balls and carts are nice.”)
And oh, yeah, he also volunteers with three organizations to help others who are facing their own ALL experience.
Ten years after cancer entered his world, the days following his diagnosis remain vivid. “I clearly remember lying in bed at Oregon Health and Science University Hospital (OHSU) in Portland in the fall of 2009. I had been diagnosed with acute lymphoblastic leukemia weeks earlier.”
“The doctor just pronounced to my wife and I, ‘Well, we’ve got you in total remission, now we’ll work on your transplant. It’s a full non-related bone marrow transplant, using stem cells.’ He left the room and I looked at my wife and said, ‘What the heck does that mean?’”
“It was a gut punch,” he continues. “I was an athlete, in unbelievable good shape for my age of 59. I thought I was going to live until 100. No one in my big family had ever gotten cancer.” But the cancer had arrived.
Today, after a successful transplant, countless blood draws and lumbar punctures, so many prescriptions that he created a spreadsheet, an ongoing battle with Graft Vs Host Disease (GVHD), and more bone marrow biopsies than he’d like to recall (“They go through the big plate in the back of your pelvis to take a piece of bone marrow out of your pelvis. Some techs are so good at it that it doesn’t hurt. A lot of hospitals don’t offer a shot of morphine when you’re prepping for a bone marrow biopsy. There are no significant side effects, it just relaxes you. Take. The. Morphine.”), Bill is back at home and hard at work helping others.
He serves as a Support Volunteer for Cancer Hope Network as part of our partnership with St. Charles Medical Center, works with the Leukemia and Lymphoma Society, shares his experience via the National Bone Marrow Transplant Link and is active online in Facebook groups dedicated to helping the ALL community.
“I’m pretty tough,” he laughs, recalling the years raising his kids. “If there was any kind of medical situation, because I’m the son of a nurse, everyone came to me. I was the one who stayed calm and made the plan or took them to the emergency room.” That calm has carried into his life after diagnosis, helping him provide comfort for patients and caregivers facing their own life-altering diagnoses.
“Leukemia is what it is,” he says. “It just matters how I’m going to deal with it. You get to decide how you’re going to deal with it. I recognize the place my matches are in their journey. I try to get them thinking positive.”
He lives his life by the golden rule, sharing his hard-won experience and the first-hand information he longed to receive. “When I was in treatment, I was wishing I could talk to somebody. Cancer Hope’s mantra of ‘Talk with someone who’s been there’ is so valuable. Doctors give you a rosy picture – someone who’s been there can tell you the unvarnished truth. They can also help you take everything in stride.”
His advice is elegantly simple: “Be grateful. Be grateful. Be grateful. The mental aspect is the toughest. We all have to have bone marrow biopsies and we all complain about it. I remind people that they’re upright, they’re breathing. Once you start talking about how long you’re going to live or if you’re going to live, you’re grateful for what happens.”
“Fortunately, they’ve got this down. Which is what I tell my patients. At least we have a disease, a cancer, that they know how to fix.”
He encourages his matches to respect their medical team, but not to be afraid of them. “I don’t go into a meeting or an exam with the idea that whatever the doctor say goes. I judge them by how they treat me. I work with them to find what works for me. I’ve been fortunate to have some amazing doctors. The doctor who was in charge of my transplant team was brilliant and a world-renowned expert. He was also a super-nice guy. I’m not bashful about telling patients to talk to their doctors.”
Bill remains grateful for the support he received – from friends around the world, from family and most of all, from his wife of 50 years, Sandy. “My wife was an unbelievable trooper. She dwarfed everybody. We had to stay at OHSU when I had my transplant. When we first went down, they had no support bedroom, just a breakroom with a bench. She slept there for several days. After my transplant, we rented an apartment to be near the hospital. I lost 62 pounds. I lost my hair, my eyebrows, my eyelashes, fingernails and toenails. I looked like a walking salamander.”
“We complicated that by adding an 89-year old grandfather with dementia. We got a call in the middle of the night one evening – he’d left the apartment and the police called so we could come pick him up. I could barely walk, but we had to barricade the door to the apartment each night. Through it all, she was there. She was incredible.”
The former high school football player and longtime soccer coach reverts to sports when asked about the lessons cancer has taught him. “It’s a marathon, not a sprint. I’m 10 years out and I have neuropathy in my fingers and my toes. My fingers tingle, and my toes are numb. That’s not going away. You’re not going to get your transplant and go back to where you were like you had a cold. You’ll never be the same. But you will find happiness and a full life.”
He concludes simply, “Live the rest of your life being grateful for beating cancer and grateful for everything in life that you still have.”