After graduating from high school, Alyssa Plouff wasn’t sure on which area of study she wanted to pursue in college. She decided to stay home and commute to Rhode Island College. As fate would have it, her mother became ill during this time, so Alyssa was able to study full time while being a caregiver to help her mother battle cholangiocarcinoma (CCA), a rare bile duct cancer. Alyssa’s mother died after battling the disease for nearly four years.
Although it’s a rare disease today, new diagnostic techniques and knowledge mean that this disease is on track toward becoming more well known and less misdiagnosed. It is projected to become the second leading cause of cancer deaths by 2040.
Alyssa knows firsthand how challenging it can be to step into the role of caregiver to a loved one battling the disease. Her experience with her mother’s diagnosis and subsequent health battle led her to become an engaged volunteer with CholangioConnect Mentor, giving care to caregivers.
What inspires you to volunteer?
I grew up being service-oriented. I volunteered with the community youth commission, working on projects such as obtaining heating assistance for local families, among other service projects. I volunteer because I find joy in helping others. My mom did the same and never expected anything in return. It was contagious.
Tell us about your volunteer role with CholangioConnect and the C.A.R.E. Team.
I have been very active in volunteering since my mom’s passing. Since 2017, I have volunteered for CholangioConnect Mentor. Here, I mentor other caregivers. Having had the experience of being my mom’s caregiver, along with my family, I understand firsthand how important it is to support caregivers. I give them an opportunity to vent to someone who has shared their experiences. I help them be advocates for their loved ones because navigating the healthcare system is hard enough without the emotions associated with watching a loved one suffer. I teach them the questions to ask, I counsel them on the importance of getting second opinions, I provide advice on reducing or avoiding burnout and most importantly, I help them feel they’re not alone.
In 2019, I began volunteering for the C.A.R.E Team (Cholangiocarcinoma Awareness Research Education). This took a pause during COVID, but I have since resumed volunteering. Here, I work on advocacy projects for the Cholangiocarcinoma Foundation. These projects involve local hospitals, patients and other caregivers. The original C.A.R.E. Team was based in Chicago. The goal is to share CCF resources with local patients, caregivers and medical professionals. I had attended several conferences and found them extremely helpful. Through the conference, I was able to meet fellow volunteers in the New England area who share the same goals. Recently, Dave Fleischer has spearheaded the revival of the New England C.A.R.E. Team. He recruited a team of former caregivers like myself as well as an oncologist who specializes in cholangiocarcinoma at Massachusetts General Hospital.
I received my doctorate in Occupational Therapy in 2022. My capstone, or my thesis project, was based on how an [occupational therapist] intervention could fill the gap in the research or healthcare system related to caregiving. I focused on creating a caregiver program specifically for cholangiocarcinoma caregivers. Research has always been something I love so, after graduation I joined the Research Advocates which is a part of CCA foundation. Our monthly meetings include presentations by experts in the field. This helps me stay on top of new innovations and research on the disease. It broadens my knowledge and helps me be a better mentor to other caregivers. Since 2018, I’ve volunteered at the annual CCF conference.
I was recognized with the Mark R. Clements award for Excellence in Volunteerism at the 2023 conference, which was a huge honor. I take pride in my volunteer work with the foundation and have donated a minimum of 100 service hours every year since becoming involved.
What inspired you to get started with this initiative?
In 2016, my parents attended the CCF conference in Salt Lake City. My mom, who was a nurse, was always very active in her own treatment. This was the first time that my mom was able to meet other CCA patients. My parents, sister and I attended as a family again in 2017. My mom was already on hospice care at the time, but we were still hopeful for a miracle. I loved everything the foundation stood for and decided to stay involved.
What are your long-term plans or goals for the organization?
I plan on staying with CCF long-term because it makes me feel I’m being proactive. I would love to build off my capstone project and create a resource for caregivers, educating them on burnout, tips and tricks, and helpful other information. While being a caregiver is an honor and a role of a lifetime, people don’t realize how challenging it is. It’s extremely hard work physically, mentally and emotionally. I’ve found that patient information is often abundant, but not much attention is given to providing resources for caregivers.
What’s been the most rewarding part of your work?
The most rewarding part is definitely the connections I’ve made with other caregivers, patients and volunteers. I’ve met and bonded with people I would otherwise never have met. We understand each other and are able to share knowledge, resources and emotional support. Specifically, as a caregiver mentor, I find value in the relationships I have been able to build. They’re not necessarily looking for the perfect solution or even for answers. They just need to feel heard and that someone cares.
What have you learned through your experiences as a volunteer?
I learned that no task is too big or too small. Whatever you can handle in the moment is great. People’s capacity varies and that’s okay. Remind yourself why you’re volunteering. For example, being a mentor is hard aside from navigating the practical aspects of caregiving. You also are addressing grief. It has helped me work through my own grief and find my purpose.
Tell us about future partnerships, programs or events that you are excited about.
World CCA Day is coming up in February. Rhode Island has signed a proclamation for World Cholangiocarcinoma Day as an official day in our state for the last two years and many other states (now a majority of states) have likewise declared World CCA Day as a day of awareness. We are hoping that Gillette Stadium will “light it green” again in 2024 as part of our CCA awareness campaign.
Today, CCA is still rare but research is vital. We need doctors, clinicians and researchers to get interested in this. We need to support people who have been diagnosed.
I am also looking forward to the annual CCF conference and its inspiration and connections. I help out with conference logistics. I also attend the presentations, but my main role is to help in any way that’s needed.
Why is it important for others to get involved with causes they care about?
We are capable of making change. If you care about something, doing something about it is the next step. No step is too big or too small. Choose a cause you’re passionate about and use your passion to fuel your activities. Whatever you choose to do will be worth it.
Any advice for people who want to start volunteering?
Find something you’re passionate about. You may not be able to give a lot of time or money, but other ways to help are important too. When I was working full time on my doctorate program but still wanted to volunteer, I realized that I had to be gentle with myself and find other ways to help. If you’re anxious about not having time, your commitment doesn’t have to be elaborate. It could be as simple as taking one single task off someone’s plate. Even talking to other people about a cause is volunteering.
You can also create your own opportunities. My sister and I started a nursing scholarship in my mom’s name. She was an incredible nurse and we wanted to honor her legacy. Now that scholarship is endowed and we’re able to help by bringing more people into healthcare.
What do you want people to learn from your story?
Bad things happen to people. Some people allow adversity to define them. Some choose to let it go. And some choose to do something about it, turning their pain into something that will help others. Doing something, even a little, can help you overcome grief. You can be sad but at the same time learn from it and even improve the lives of other people. Life isn’t easy but you can take advantage of shared experiences. Volunteer in any capacity. As long as you’re passionate about it, you have power to make change, whether you feel it’s significant or not. It is. Even small actions can be extremely meaningful.
Do you want to make a difference in your community like Alyssa? Find local volunteer opportunities.