A Cancer Survivor Uses Diagnosis to Guide His Fellow Travelers

Meet Daily Point of Light Award honoree Jim Hoofnagle. Read his story, and nominate an outstanding volunteer or family as a Daily Point of Light. 

When Jim Hoofnagle’s daughter told him his skin was yellow, he knew something was wrong. 

After undergoing a series of tests with his physician, Jim was diagnosed with cholangiocarcinoma, a rare but aggressive bile duct cancer. Luckily, a quick diagnosis proved to be the key to Jim’s survival. After intensive chemotherapy and a successful liver resection, Jim was able to count himself among the small percentage that is cured of the aggressive form of cancer. However, his journey was far from over.  

While Jim has a clean bill of health these days, he holds his experience with cholangiocarcinoma close. For the past three years, Jim has volunteered his time with the Cholangiocarcinoma Foundation, an organization with the mission to find a cure and improve the quality of life for cholangiocarcinoma patients. As a mentor to others dealing with the disease, Jim answers questions, offers emotional support and shares his personal experience. No matter their location, Jim takes a seat at his desk, picks up his phone and allows those with cholangiocarcinoma to have an outlet. For those handling the ups and downs of a complex diagnosis, Jim’s willingness to offer up his time and energy is a tremendous demonstration of the power of volunteering.  

In contrast to referring to people dealing with cholangiocarcinoma as “patients” or “mentees,” Jim prefers to call these kindred spirits “travelers.” It’s an appropriate term, particularly considering that each person with cholangiocarcinoma is navigating a cancer journey that often comes with many questions and concerns. From finding suitable treatment to dealing with the emotional weight of their diagnosis, Jim’s strength and positivity is a true gift to his fellow travelers. 

Tell us about your volunteer role with the Cholangiocarcinoma Foundation. 

I serve as a mentor for cholangiocarcinoma patients. But I call them travelers, not patients and not mentees. Mentee sounds too clinical to me. I think travelers is more appropriate because we’re all on a journey. I stay in touch with all my travelers, whether they’re undergoing treatment or past treatment. Folks will email if they have a question. But really, it’s just like talking to a friend that you’ve had since high school, and you get all kinds of answers. They want to know about the different medications that they’ve been prescribed. Of course, we’ve got to be careful that we don’t start giving medical advice, but we do have a list of doctors who have seen a lot of cholangiocarcinoma patients in hospitals around the country and the world.  

What inspired you to get started with this initiative?  

I’d started to become aware of the Cholangiocarcinoma Foundation, and they sent out an urgent need for mentors. The hardest thing to find is mentors who are alive, so I started mentoring. 

What are your long-term plans or goals for the organization? 

My wife and I own a couple of small companies so I’m still working. But as we start to wind down some of those, the organization has research advocates. Some mentees call with questions I don’t have the answer to, so I go to some of our research advocates who have time to track down new clinical trials. For instance, there are clinical trials that come up all the time. There are new drugs that come up all the time. So the next step for me would be to become a research advocate. I would still mentor through the process because I really enjoy doing that. 

What’s been the most rewarding part of your work? 

The connection with so many different people coming from so many different perspectives. About six weeks ago, my doctor called me and said ‘Jim, I remember your mentoring, and I’ve got a lady here about to undergo the same surgery. Can she call you?’ Just the idea of somebody who has had cancer wanting to talk to somebody who’s surviving it is rewarding.  

What have you learned through your experiences as a volunteer? 

The different ways people accept or understand a diagnosis. Some are very strong and determined to do anything possible to beat this, and others take a very passive role and are just going to do what their doctor says. I’ve had to learn that whatever their perspective is is right. It’s theirs, and that also helps me understand how I can still help them. You can help when they ask for help, and you can make suggestions, but you’re not going to change who somebody is.   

Why is it important for others to get involved with causes they care about? 

There are so many people with a lot to give in this country and I don’t think they recognize how much they have to give. I didn’t do anything heroic. I just got lucky. If you look around, so many people give their time and their money. Whatever time you have to give, there are plenty of people out there who are just waiting for somebody to reach out to them, whether it’s a veteran or a sick person. Everybody can volunteer to do something. 

Any advice for people who want to start volunteering? 

The first thing is to decide what you’re interested in, whether it’s animals or music or the library. Figure out what you’re interested in, and then find an organization and ask four words: ‘How can I help?’ Somebody will answer. Somebody will find something for you to do.  

What do you want people to learn from your story? 

Volunteers get as much or more back in the process than the people that they’re mentoring or helping. It is not just giving your time and giving you answers to questions. It’s a relationship. It becomes a relationship where a volunteer gets so much satisfaction with just a simple idea that you’ve helped somebody just a little bit. A mentor or volunteer gets so much in return.  

Do you want to make a difference in your community like Jim? Find local volunteer opportunities.