President

So with one of the most insane schedules of anyone you'll ever meet, how do you get Lance Armstrong to sit still in a room all day? As I sat in the Presidents Cancer Panel meeting, the thought crossed my mind that I wasn't exactly keen on sitting in a meeting all day myself. But then I didn't jump up and volunteer to be diagnosed with cancer either. Through the past three years since my diagnosis, and our desire to be involved has grown, this was just one more of those opportunities that we couldn't pass up. Birmingham used to be a blue-collar steel city. Today it's healthcare. The University of Alabama in Birmingham is the largest employer in the city and the UAB Comprehensive Cancer Center attracts patients from across the U.S. Unfortunately, that has been a need for my family.

The PCP is comprised of - Lasalle D. Leffall, MD; Margaret L. Kripke, PHD; Maureen O. Wilson, PHD; and Lance. Without going deep into the panel members bios, let me just say, they're way impressive and experienced in regard to cancer. The panel meets four times a year. The subject today was Living Beyond Cancer: Meeting the Challenges of Adult Survivors. The next meeting in this series is set for Philadelphia, PA on Jan 5, 2004.

The day started with a list of cancer survivors, each telling their story and the different issues that they have continued to face since diagnosis. Many people don't realize the ongoing struggles facing some of the nearly ten million cancer survivors in the U.S. today. People think, they either die, or they're cured and go on about their lives. Not always the case. With the economy not so great and companies cutting back on benefits these days to reduce costs or maybe you get laid off; have you ever thought about trying to get health insurance as a cancer survivor? Good Luck. It will either be so expensive that you can't afford it, or more likely, you'd just be turned down. What if you were retired, living on Social Security and the drugs you need to control pain are not covered under Medicare; or you live in a rural community and you have no transportation to get to your treatment, one hundred miles away. These were just some of the stories adult survivors face, that were discussed. There were not only survivor struggles, but also doctors expressing concerns and problems they have. It was interesting to hear from their side. Sometimes people may feel the doctors are just getting rich because healthcare is so expensive. Also, not necessarily the case.

   When the subject of clinical trials came up, my Birmingham buddy and recent Tour of Hope rider, Ron Williams got up and told about the ToH and some of the people they met along the way, while riding across the United States. Ron said they would pull into a little café in the middle of nowhere and get some funny looks at their Lycra kits and get ask, "Now, you're ridin' you're bike across the US for what?" No doubt the ToH team touched a wide spectrum of America.

   Later in the evening there was a Town Hall format with an open mic for whoever wanted to speak. Again it was more stories of struggles; breast cancer; prostate cancer; testicular cancer; relapses; congestive heart failure due to the chemo you took years before to save you life; how to assimilate information; where do you find all the options for treatments when you're diagnosed? Was all this info depressing? Well, it did get emotional from time to time, but the important thing was, at the end of the day you look back and say, "These people cared enough to be here and they're trying to help solve the problems. They know the concerns and struggles, because they are living them now. The PCP takes all this info, sifts through it and presents a report to the President. That's going to be quite a task in itself.

   Every time we're a part of an event concerning cancer, I always wonder if we made a difference that day. As Angie and I were leaving we stopped to speak to a guy and he confessed that he had come today to see Lance. But After hearing all those cancer survivors get up and speak, he kinda forgot about that and started thinking, "maybe I could get involved and help somehow". It made sitting in a meeting all day worth it. As Lance said, " The best part of all these meetings is listening to the people tell their stories"

   So, would I sit in a meeting all day again to hear these stories? Sure, I can ride my bike tomorrow.

Jerry Kelly

tc survivor