Allison Rosen, 38, and Michelle Cappel, 41, are Houston residents, colorectal cancer survivors, and volunteers with the Colorectal Cancer Alliance. Together they are developing Houston Allies, a pilot program supported by the Alliance that connects volunteers locally to make an impact in their own community.
We recently asked Allison and Michelle a few questions about their volunteering experiences. Here’s what they said:
Why do you volunteer with the Alliance?
Allison: The colorectal cancer community at large doesn’t know about the amount of resources available to them through the Alliance. I didn’t know this when I started treatment, and it makes me want to ensure that everyone in the Houston area has access to support, resources, and the Alliance’s nation of allies. I want them to know they’re not alone.
Michelle: I was first connected to the Alliance through Blue Hope Nation, a Facebook support group moderated by the Alliance. Being stage IV, I had a lot of questions and I didn’t know anyone like me. Blue Hope Nation is where I got a lot of support and questions answered. I committed to myself that, if I made it through this journey, I would volunteer to help raise awareness, especially about young-onset colorectal cancer. I want to make an impact with the rest of my life.
What’s your favorite volunteer activity?
Allison: I really like the one-on-one talks, but I like them as the result of speaking in a bigger platform. I like to be able to tell my story to a large group and hope that one person, or many people, will come up and talk to me. It’s that connection with perfect strangers, when they’re putting their trust in me, as a result of telling my story that pushes me to do what I’m doing.
Michelle: For me, it’s just sharing my story one-on-one and connecting on a personal level. I feel like I’m really helpful with people who are just starting their journey. I’m really drawn to the Buddy Program. I needed it so much as a patient, and I didn’t have it. Any time I hear someone is early on in their journey, whether it’s through social media or in-person, I want to give them resources I didn’t have and just to talk to them, really, and be a sounding board. I want them to know colorectal cancer is beatable, even at stage IV.
How do you handle the emotional aspect of volunteering?
Allison: It’s hard to not be emotional. The first time I ever told my story I thought I’d be fine, and then I cried my eyes out in front of medical students. The more times I talk about it the more I realize I can be emotional without crying. I can be sympathetic, and that shows the strength that the patients and community need. I can sympathize with my words instead of with visible emotions, and that seems to have a positive impact.
Michelle: For me, it’s been my faith. My faith has kept me strong and positive through this journey. Yes, it’s emotional, and I can get upset, but it’s very seldom that I do. I place all of this in God’s hands, and for however long he’ll keep me here, I’ll continue to tell my story, and I know he gives me strength to do that. He left me here for a reason, and I feel that reason is to share my story, and that gives me strength to be a strong supportive person for someone who may not be handling it in the same manner.
How do build the confidence to speak with authority?
Allison: What I’m talking about is so personal, I don’t want to practice. I don’t want it to come off as scripted. It’s funny, sometimes I give PowerPoints for work, and I get nervous and forget things. But your story is personal, and there is no wrong answer. Also, everyone’s story matters. Some people don’t think they went through a hard enough time or they were a caregiver, so their story doesn’t matter. I have told people countless times that their story matters, and they deserve to be heard.
Michelle: Allison has more experience with this because I’m a teacher and I don’t work in the cancer industry. I do try to read more information. Obviously, I know my story, but like Allison said, every story is so different, and I don’t want to give anyone the wrong information, so I make sure I know where to send them for the right answers and help. For me, I just try to stay ahead of it, know where the resources are, and know that my story is not everyone's story.
What’s the one takeaway about colorectal cancer that you want people to learn?
Allison: Colorectal cancer is preventable through screening.
Michelle: That’s the best one, but also that younger people are getting colorectal cancer more now. My young friends don't realize that, so I try to tell them to do whatever they can to get a colonoscopy or FIT test, or whatever they can do to ensure they’re healthy
Are people surprised by what you tell them?
Michelle: Absolutely. I was over at a friend’s last week, and she’s in her upper 20s. She was totally shocked by just how many young people get this disease. She was also shocked because my doctors didn’t listen to me. I was turned away thinking my symptoms were no big deal. What I learned is you need to make them listen. You can always go to another doctor.
Allison: Definitely. People look at me and have no idea what I’ve gone through. When I share my story, it opens their eyes to the fact that colorectal cancer doesn’t discriminate. Sometimes when I'm talking, I’ll show a picture of me bald and me now, and it helps convince them that if something is wrong with their bodies, they need to be their own health advocate. If I hadn't gotten that screening, then I wouldn’t be alive right now.
What’s the best part about volunteering?
Allison: The best part is the healing it’s provided me. When I was going through treatment, before I found the Alliance, I felt alone. Once I started volunteering and realized I wasn’t alone, I felt stronger, and volunteering helped me heal. Volunteering and advocacy give me a sense of a new normal.
Michelle: It gives me a sense of purpose for this disease because I can’t make sense of why I got so sick at an early age. I have to think about it a different way. I have to advocate for the people before me, the people who have now became allies with me in this mission, and those who have yet to get a diagnosis. Hopefully through my voice and other voices, we will bring enough awareness and get the number of those affected down.
What advice do you have for someone who is nervous about volunteering?
Allison: For me, when I talk to people, I tell them their voice matters, and they’re not alone. The idea behind creating Houston Allies is building a sense of community, and within that is support and guidance. We won’t throw you to the wolves.
Michelle: We’re trying to grow our numbers, and as we do that, people who may be are afraid it’s too much of a commitment will get to pick and choose how and where they want to volunteer. It’s not all or nothing.
Can you tell us about Houston Allies?
Allison: Houston Allies is a way for us to engage the entire Houston community to educate, spread awareness, and do what we can to make sure everyone in our community knows what colorectal cancer is, how it’s preventable, and how it’s treated. The awareness part is one aspect of what we’re trying to do in Houston. We want to use people’s stories as much as we can to make people realize this disease is preventable and what they can do to ensure it doesn't affect them, family, friends or the Houston community. I’m adamant that the more people we can engage, the more lives we can save.
Michelle: In early diagnosis, there just isn’t enough support. Allison and I were both treated at MD Anderson Cancer Center, which is one of the top hospitals for cancer, and even they don’t have a support system for people like us. So we needed to fill that gap. Eventually, we hope to get more support groups going, and as we grow in numbers, we can divide houston area up a bit so we can have groups in each area.