Patricia Maxin has shown great strength and compassion throughout her life. A decade ago, when her husband became sick, she retired from 30 years in the public school system teaching kids unable to attend school due to medical or emotional issues. It was a job fraught with challenges but an experience she cherishes and a role that would help prepare her for the work that would follow.
In 2015, Patricia discovered the Cholangiocarcinoma Foundation after her husband’s death from the disease. She has given her time as a board member, a research advocate, a mentor and an annual conference and fundraiser volunteer. CholangioConnect, a program she founded in 2017, has matched more than 1,100 patients and caregivers with experienced mentors—often in less than 48 hours—and has been an overwhelming success.
Patricia volunteered to manage the program for six years, putting in 120 hours of work each month until June 2023 when a permanent staff member was hired for the role. She remains a dedicated mentor and research advocate for patients around the world, work she is not only uniquely qualified to do but that she loves.
What inspired you to volunteer for this initiative?
The foundation wasn’t even on my radar when my husband, Mike, was diagnosed. Things were more primitive back then. My husband wasn’t able to get a tumor sample, so we weren’t looking at trials.
My husband’s physician was instrumental in introducing me. He suggested that I go to the conference after Mike died. He thought I would enjoy the event and the people. When I decided to be a mentor, the idea for CholangioConnect had been hatched, but no one had run with it. I was asked to be the program manager until they hired someone.
Tell us about your volunteer role with the Cholangiocarcinoma Foundation.
I still work as a research advocate and a mentor, but I stopped managing the program this year. I’ve lived in Houston for the last 40+ years. Patients often travel here for trials and second opinions, and I have the honor of hosting and caring for them while they’re here, often in my home. I’ll walk them through situations and scenarios. I’ll give them resources. Two nights ago, an individual who lives in India called to ask about the normalcy of a situation, and I will research for her and find out. I’ll sit with someone at an appointment and provide transportation. I listen, I advocate, I research. We do dinners.
Not all mentees come to Houston; they are all around the world. I’m just there for them. I don’t have family here, so it frees up a lot of space. They can call anytime, and it’s one of the most flattering things when someone is comfortable enough to take me up on that.
I don’t do much volunteer training now, but for the last six years I did all of it. I served as a quarterback for people who were going to be mentors. For some, you actually would do it with them for a while. Others were ready from the get-go. A lot of people are worried they won’t have all the answers. No one has all the answers, including the doctors. That’s why the program is wonderful.
What’s been the most rewarding part of your work?
The friendships that have developed, even with those who have died, are forever. Tomorrow, I’m going to visit a family in Mexico that stayed with me and has become family. Their patient has passed away.
Thirty-five years ago, I was volunteering at MD Anderson. A chaplain told me that when someone lets you in their life in those final days, it really is a privilege. And it is. It’s a very private place. I think that’s why the friendships are so deep; it’s emotionally and spiritually rewarding to be with other people through their journey.
What have you learned through your experiences as a volunteer?
If there’s anything that is frustrating for me, it’s seeing what these people are going through. I lost my mom when I was little, so for me, the ones that really hurt are the ones where there are children. That’s probably my greatest gift, being able to relate to the children.
You just learn that life is short. You want to make today a better day for someone through a smile or a kind word. You realize what’s important and what’s not. What blows me away are the patients who are so giving that they’re willing to volunteer to help another patient. Even when they’re weeks or months away from dying. You see beauty in people.
What is the best way a friend or neighbor can support someone going through a medical journey like this?
Don’t say, “I know how you feel.” You don’t. And don’t ask what you can do to help. Just do it. Go to the grocery store, and call the person and say, “I’m standing in the juice aisle. Do you want the grape or orange?” If you ask what you can get them, they’re going to say, “Nothing.” But if you say, “I’m here. Which one do you want?” They are much more inclined to give you an answer.
Ninety-five percent of the people are not going to “call if they need anything,” because they feel like they’re imposing. Take action. Pick up their garbage can at the end of the day when you know they’re in treatment. Do things without them asking, because for many people, it’s hard to ask.
Why is it important for others to get involved with causes they care about?
It’s nice to believe that humans are here to help each other, whatever the cause. When you have had the opportunity to be on the receiving end of kindness by a perfect stranger, you realize that’s what we should all strive for.
What do you want people to learn from your story?
It’s an honor to be able to do things for people. My father used to always say you find time for what’s important. And I think doing things for others is very important.
Do you want to make a difference in your community like Patricia? Find local volunteer opportunities.