Published on March 15, 2018
I was diagnosed with chronic lymphocytic leukemia (CLL) in 2010. Going from being in my mid-40s with a penchant for napping to a cancer diagnosis was unsettling, to say the least. I sought treatment at Houston’s MD Anderson Cancer Center and got connected with Dr. Michael Keating. A new life began, and I endured watch and wait, symptom acceleration and then a clinical trial. It was a script. And one that, so far, has gone rather well. I achieved complete remission with the coveted minimal residual disease negative response. Dr. Keating noticed that I was anything but shy and that I had a tendency to engage other patients and strike up conversations at the drop of a hat. And a few years into our relationship, he asked me if I would be interested in participating in a Patient Power town meeting.
I had never heard of Patient Power. I had never heard of the organization’s founder, Andrew Schorr. And, outside of the MD Anderson clinical setting, I had really never met more than a few other CLL patients. Dr. Keating connected me with Andrew, and we chatted a few times. I learned about the town meeting premise of bringing patients, care givers and medical professionals together to learn and share. Andrew told me that he wanted to put me on the stage with Dr. Keating and other CLL "rock stars" so that we could get the word out to the CLL community that things are getting better and that living well was a real prospect and goal. And that I could help out 100s in the crowd. I think Andrew was trying to see if I would be intimidated by the prospect of stage fright.
I’ve done a considerable amount of public speaking in my professional life, so engaging a large crowd was no big deal. What was a big deal was not knowing if I had a good story to tell. I’ve always believed that storytelling is a wonderful tool that helps people learn and get out of their own boundaries. Was my story something that people could learn from? Turns out it was (and still is). Andrew guided a few hours of history, current events, research and engaging patient stories. He teased out gems from each of us, and it was inspiring for me. People were relating to the real world of CLL. I told the audience how I had messed up in dealing with my kids, and they related. I was hooked. I realized that I could go beyond being a patient and become a real help to others who were walking down the same path. It was invigorating and empowering.
Shortly after that first event, Andrew asked me if I would be interested in being a host. Well that was quick! I jumped on the opportunity! I had the chance to get hip deep into the CLL community and do something tangible that would deliver real value to others who were going through what I was going through. I started hosting Patient Power town hall meetings. It was exhausting, but it was fun. In complete candor, it’s an addiction. I get to work with amazing people, I get to learn about cutting-edge research. I get to meet other patients and their care givers and I get to spread the word that there absolutely is a good life to live. People come up to me and thank me for hosting and bringing energy to the room. They pat me on the back and compliment me for my moderating skills. What they don’t know is that I am doing it for me. I know that I am supposed to give back to the community and this is how I do it. It just feels good.
At most town hall meetings, I try to take some of the “starch out the shirts” by being human, using a few corny jokes and guiding our professionals and star patients into telling their stories in a relatable way. I always make the point that actively engaged patients tend to have better outcomes. And this comes as a surprise to many. So I help the story telling. Patients connect, caregivers understand, doctors relate and I get to enjoy my own personal high. Becoming a Patient Power host has allowed me to do so much for so many and I am not ready to stop.
Here's to living well!
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