Over the next couple of weeks I will be traveling thousands of miles on long-distance flights to connect with other patients, in person. It can be exhausting but it’s energizing too. Like any of us with a compromised immune system (I keep getting chest or sinus infections!) there can be a price to pay for hours in a transatlantic or transcontinental jet, but I continue to think it’s worth it. My personal mission is to help give voice to patients and facilitate the dialogue between patients and medical experts.
“Experts” come in many types and their personal stories can be compelling. I wanted to mention a few that I will be with in April. First stop in my aerial “road trip” is Tampa, Florida where I will be the host of another of Patient Power’s “town meetings.” This one is at the respected Moffitt Cancer Center and more than 200 chronic lymphocytic leukemia (CLL) patients are expected on Saturday. April 12th. I can’t wait to meet a CLL patient there, Linda Weisser, who has been writing me for over a year as she has gone through treatment. Linda will be one of our inspiring panelists. Through thick and thin , through ups and downs, Linda has persevered. She has been one of the biggest fans of my book, The Web-Savvy Patient, and as he even sent me a photo of her reading it while receiving chemo. I was touched and I am delighted she is now doing well.
From Tampa, the Patient Power team travels to Los Angeles and a second town meeting at another top medical center, City of Hope. This event will be on myeloproliferative neoplasms (MPNs). As you may know I have had two cancer diagnoses, CLL and then myelofibrosis (one of the MPNs) so you see how personally committed I am and eager to hear ”the latest.” One of the medical experts at this second event is Dr. Bart Scott from Seattle Cancer Care Alliance. Bart has lived the cancer experience himself and he described that to me in a video interview a couple of years ago. During medical school he was diagnosed with Hodgkin lymphoma. He received aggressive treatment and was cured. Because of his own experience and the fact that his mother had breast cancer, he decided to become an oncologist. He’ll speak about his view of cancer from the perspective of a patient and family member as well as from a clinician’s perspective at our event.
In between the two town meetings I have a side trip to Mexico City to interview a patient, Irene, with another one of those MPNs, polycythemia vera (PV). Irene will tell her story of having to change jobs and forego having more than one child because of her diagnosis. She’ll also speak on camera about changing course in her life and how she is now feeling fulfilled, despite a worrisome chronic illness.
I am eager for the journey to be with other patients and to help bring out their stories in person and here online. If you can make one of our town meetings, I urge you to register. Otherwise, look on patientpower.info for more of the story with Linda, Bart and Irene in the days to come. I know they will inspire you.
Wishing you and your family the best of health!