Community Champion: Duncan Foley
Q: Can you tell us a little about yourself and your diagnosis?
I am a member of the Seattle CARE Team (seattlecareteam@cholangiocarcinoma.org) and a CCF volunteer at the Annual Conference. I was first diagnosed at stage 4 in the summer of 2021 when cholangiocarcinoma was discovered as I was having my gall bladder out. My wife calls it the “blessed gall bladder” for, without the removal surgery, my cancer would not have been diagnosed so soon. I did six rounds of Gemcis, which ended in January of 2022. I likely return to chemo this summer (2025), but details of treatment are still being determined.
I am a geologist, photographer, educator, author and guide. My geology specialties were geologic hazards and geothermal energy. I am especially a fan of Yellowstone Park and its geysers. My photographic career includes published photos, teaching workshops in the Puget Sound region and Yellowstone and being a long-time judge at local, regional and international photo contests. I retired about ten years ago as a geology professor at a university in Tacoma, Washington. I have authored or coauthored books about geysers in Yellowstone and geologic hazards. Currently I am affiliated with a travel company in the San Francisco Bay area, doing geologic interpretations on selected cruises.
Q: What has been the most meaningful part of your involvement with CCF?
(Duncan pictured with fellow volunteers Kathy Virgallito and Kathy Harger)
The most meaningful part of my participation with CCF is knowing that I am not alone on this journey, and helping others come to this realization, too. This realization is also a common refrain from patients and caregivers at both our regional care team and CCF Annual Conference meetings. By being involved, I hope that in some way I am helping others. I know that being active in the community, learning from others and sharing information and resources that I can is helping me cope with having cancer.
Q: What drew you to the Cholangiocarcinoma Foundation, and how have you been involved?
My most meaningful CCF-related activity is being a member of the Seattle CARE Team. There are now four of us. We held two meetings last year, inviting patients, caregivers, clinicians, and researchers. The first was at Fred Hutch Cancer Center, and featured speakers from that organization. Fred Hutch researchers were kind enough to lead a tour of their cholangio-related laboratories. It was very informative to see the kinds of careful and time-consuming efforts that form the background of research into our disease. We met some of the researchers whom the CCF has funded. The researchers were also excited to meet patients and caregivers. They do not often have direct interactions with people with the disease. We became real patients, not just cells on a slide.
Our second Seattle meeting was held at a local restaurant. More than 30 people came, and we had great conversations about coping with cholangio.
As a CARE Team, we have also participated in one (so far) health fair. We handed out brochures and swag and met one patient, several caregivers, and relatives who did not know about the foundation.
I strongly encourage patients, caregivers, and medical professionals to seek a regional CARE Team or, if there is not one in your area, to talk with others about starting one. The Foundation provides excellent support to our Seattle team by helping with the logistics of organizing and running meetings and giving out swag.
Q: What message would you like to share with others in the CCF community?
My first message is simple: don’t do what I did and get Covid the day after chemo! It isn’t pretty.
We often hear from patients and caregivers about how cancer takes from our lives. It certainly does. But I have also been surprised that cancer has given me some gifts. When first diagnosed, I was sent into a tailspin, like most folks. But as I walked out my frustrations, I realized that cancer was giving me the gift of the opportunity to reprioritize my life, if only I would accept it. I have worked hard these past few years to do so. I also have found that the metaphor of being at war with cancer does not work for me. I asked for options for framing in one of the first patient support groups I attended, and as I recall it was Melinda who said “living with cancer” as a description. And yup, I’m still alive, living with cancer. I’m happy not yet to be a statistic.
My geological training also helps me live with cancer. In geology, we typically have uncertainty in our decisions. When will an earthquake occur? Is this really the right site to drill? In cholangio, as patients we often encounter uncertainty on the part of medical professionals. I once heard someone say “the body is a pretty weird place.” As patients and caregivers, we must recognize that there are many unknowns, and difficult as it may be, we should try to be comfortable with medical uncertainty.
Multiple doctors looking at patient data remind me of the fable of blind people touching an elephant. Each blind person described something entirely different, depending on what they felt. So too, each doctor looking at a case sees what they know best, which is to be expected. But, as demonstrated by a case study panel at the 2024 Annual Conference, integrating observations from multiple disciplines may lead to better treatment decisions. Unfortunately, my insurance plan does not support such a team-based review. This means that as a patient, I need to be proactive and make sure that multiple perspectives are incorporated in my treatment plans.
In my own journey, this story recently played out. I was considering radiation treatment, but what kind? The first radiologist suggested what they specialized in. A second opinion, obtained only after some persistence with the insurance company, offered something different. However, neither of these insurance-approved docs were specialists in cholangio. I was even more persistent and got authorized for a third opinion from a cholangio radiation specialist. This third doc gave me very helpful comments about why radiation may not be beneficial for me now and explained why one of the other doc’s suggestion was possibly going to do more harm than good. So please, as patients and caregivers, be persistent. And please, as clinicians, welcome your patients as they pursue multiple opinions and options.
I also would like to encourage patients to contribute wherever and however they can to research efforts. Patient participation in data banks, tissue banks and drug trials not only helps us, but it also helps researchers who are looking for ways to better cope with our cancers.
Q: How do you stay motivated and hopeful during your cancer journey?
I try to live each day with cancer by practicing persistence, humor, hope and gratitude. Persistence, as described above, is especially needed when dealing with insurance companies. I find that there is humor, sometimes a bit dark but humor nonetheless, in many of my episodes of dealing with medical professionals. When I started chemo, I ordered some “emesis” (aka barf) bags. And what did I get the next day? An e-mail asking me to give the bags a star rating. Fortunately, I could not rate them.
Hope comes in many forms. As a scientist, I especially get hope from all the researchers who are studying our disease and the new discoveries they are making. I heard one describe the current status of cholangio research as being on the lower part of an exponential growth curve.
Gratitude and thankfulness come a bit more easily to me. My wife might disagree at times, but . . . I have been close to the edge at least twice, and I would not be here without the dedication of numerous nurses, CNAs, MDs, lab techs, etc. etc. Each day, after my medical misadventures, is truly a gift.
Q: Is there anything else you’d like to share with the CCF community?
My sister-in-law grew up in a family of accountants, who had the family statement that “if you want accounts receivable, ask for accounts receivable.” I encourage patients and caregivers to be persistent, ask your questions, make sure you understand the answers, and use reliable resources like CCF if your medical support team is not able to explain something fully or well. We are all, patients, caregivers, clinicians and researchers, part of the team working to understand and treat cholangio. None of us need approach this disease alone.
Thank you CCF for letting me share my story.