Community Champion – Duncan Foley

My most meaningful CCF-related activity is being a member of the Seattle CARE Team. There are now four of us, and together we held two meetings last year, inviting patients, caregivers, clinicians, and researchers. The first meeting was held at Fred Hutch Cancer Center and featured speakers from that organization. Fred Hutch researchers were kind enough to lead us on a tour of their cholangio-related laboratories. It was deeply informative to witness the careful, time-intensive work that forms the foundation of research into our disease. We also had the chance to meet some of the researchers whom CCF has funded. That connection was mutual — the researchers were excited to meet patients and caregivers. These kinds of interactions are rare for them, and for us, it was meaningful to become more than just anonymous data — we became real people with faces, stories, and voices. These connections brought the research to life and reminded all of us why this work matters so deeply.

We often hear that cancer takes things away from us. And it does. But cancer has also brought me unexpected gifts. When I was first diagnosed, I was thrown into a tailspin. But over time, I came to see that this diagnosis gave me the opportunity to reevaluate my priorities — if I was willing to accept the challenge. I’ve worked hard in the years since to embrace that opportunity. I’ve also rejected the metaphor of being “at war” with cancer. In a support group early on, I heard someone — I think it was Melinda — use the phrase “living with cancer,” and that framing worked for me. Because I am still here. I’m still living. My background in geology has also helped me accept uncertainty. Just like predicting earthquakes or where to drill, we rarely have perfect answers in medicine. I’ve learned to live with the unknown. And I’ve learned to advocate for myself, especially when opinions differ. One radiologist gave me a recommendation based on their specialty, but I pushed for a second and third opinion. Only through persistence did I reach a cholangio radiation specialist who gave me much more tailored and helpful advice. I encourage other patients to be just as persistent. And I urge clinicians to welcome those who seek multiple viewpoints — it’s how better care happens. Patients also have a critical role in research. Participating in data and tissue banks, clinical trials, and surveys isn’t just for the future — it helps all of us, right now.

I try to live each day with cancer by practicing persistence, humor, hope, and gratitude. Persistence is essential, especially when navigating insurance hurdles. Humor helps too — even if it’s dark at times. For example, when I began chemo, I ordered “emesis” bags online. The next day, I got an email asking me to rate the product. I didn’t know whether to laugh or cry — fortunately, I couldn’t bring myself to give them a star rating. Hope often comes from science. As someone with a scientific background, I’m encouraged by the dedicated researchers studying our disease. I once heard someone describe our field of research as being on the lower part of an exponential growth curve — in other words, we’re just getting started, and the progress ahead could be dramatic. Finally, there’s gratitude. While I may not always express it (my wife might have something to say about that), I truly feel it. I’ve come close to the edge more than once, and I wouldn’t be here without the incredible dedication of nurses, aides, doctors, lab techs — so many people working behind the scenes. Each day that I wake up after all the medical misadventures is a gift I don’t take for granted.