Dr. Michael Keating and CLL Patient Shari Brenner who brings him a homemade cake at every visit
Dr. Michael Keating and CLL Patient Shari Brenner who brings him a homemade cake at every visit
For so many years, if you were told you had cancer, you equated that with death. And the path to that death was usually paved with treatments that caused pain, trauma, and cast a pall on your daily emotional and physical life. Cancer meant sadness – for you and the people who cared about you. But for an increasing number of people today, the story is different. Medical science is starting to “get it right.” While still many cancers cannot yet be cured, people can live longer and live well. And yes, they can enjoy good times and laugh. To be sure, there are cancer diagnoses that remain daunting, treatments that are disfiguring and people beaten down and lost to cancer much too soon. But clearly, more and more cancers are becoming “chronic” and life goes on and with that the chance to – yes — laugh about it. This is brought home to me as I host each successive Patient Power forum. Many people are used to such events where doctors get up at a podium, show complicated scientific slides, and give formal presentations designed to give you hope. You sit there and take a lot of notes and work hard to understand. Sometimes you don’t. But that’s not the in-person events produced by the Patient Power team!
I describe our patient forums (or what I like to call “town meetings” but my staff hates that fearing the term has been polluted by politicians) as much like interactive television “talk shows” with me as a male, white, bald-headed Oprah (I hope she will forgive me for the description). And like Oprah we try hard to lead compelling discussions with the entire audience as a community. Yes, there are frank stories of fear, there are tears, but we also sing songs (recently “You are my sunshine” led by a myeloma patient and “Happy Birthday” for a leukemia patient), and we laugh – a lot. In the safe space of a room of 300 people with a blood cancer we can joke about the “joy” of bone marrow biopsies or the fun of bringing homemade cakes to celebrate positive checkups with the clinic staff. The Patient Power philosophy as we gather is upbeat and, sometimes even “fun.” It’s the fun of meeting people who know what it’s like, of celebrating successes over a disease that once took the wind out of our sails, but now less so. It’s the fun of spending an afternoon with experts who are caring, human, and rather than in a rush, are there to connect with you and help you and your partner or family members understand and feel more confident and positive. People leave our events with a smile and a plan for how they will manage their condition better and live life more fully. It’s very gratifying.
In 2014 we plan to produce many more events like these around the US. We are gathering funding to do this in CLL, myeloproliferative neoplasms (MPNs), and myeloma as a start. My hope is we can expand to other conditions very soon. And our mission each time is to break the traditional mold of seminars and fairly boring processions of “expert” presentations and deliver instead a few hours of community, conversation, understanding, and inspiration and punctuate it with laughter. I am not talking about humor as therapy, although years ago writer Norman Cousins showed it could be that. I am talking about laughter that comes with people with same health concern coming together, knowing we are more than our illness, and, happily celebrating that there are signs we are doing better.
I hope you can attend one of our patient forums if you haven’t already. We’re headed to Tampa, Florida next on April 12th to discuss, and laugh about, our shared experience with CLL. We are also looking into events in Southern California, Chicago and Boston. So stay tuned and if you have a funny story about your cancer journey, bring it along. Sure, cancer is a real downer. But our spirit says it doesn’t have to be that way hour after hour, and when we get together it definitely isn’t. Come see for yourself! And, of course, if you miss it, everything we do is captured on video and shared on patientpower.info.
