By Jim Pantelas
My wife was six-and-a-half months pregnant on the day I was diagnosed with stage 3B, non-small-cell lung cancer. That was eleven years ago and I’ve been dancing with NED (no evidence of disease) for the past ten years. But dancing doesn’t necessarily mean having fun.
Has my life been impacted by lung cancer? I can’t even begin to list how much everything has changed! Like many, my ability to continue in my career was seriously damaged. It’s not that I couldn’t still do what I used to do. Rather, it was that I couldn’t predict the days that I wouldn’t be able to do anything – and, for a while, those days happened with great frequency.
So what does a workaholic do with his life when he can no longer work? He volunteers! I began volunteering ten years ago – first at the children’s hospital that took care of my daughter, and then, more and more in support of lung cancer funding, legislation and research. And that involvement is now a major part of my life.
To be clear here, I have no formal medical or research training. My background is in building and running IT consulting organizations. When I was technical – a seeming million years ago – I was a computer systems management specialist. I worked with brilliant people, and I had a knack for building strong teams, but I was nowhere close to understanding medical issues, medical research or cancer. But I became a quick learner.
So what does the life of a research and patient advocate look like? Let me show you by giving you an idea of what the month of March looked like for me.
It started with assignments to review multiple research proposals as a peer reviewer for PCORI (Patient Centered Outcomes Research Institute). I represented the non-scientist and patient perspective on an oncology IRB (Institutional Review Board) at the university I volunteer at. I also sat on an IRB for my local Veterans Administration Hospital, and I participated in two IRB meetings for the NCI (National Cancer Institute) where I’m also a regular board member. I followed up on two research efforts that I helped to develop and worked on a draft for a research project I want to pursue. I sat on a Pediatric Ethics Committee (and have for the past 10 years), chaired a Patient Experience Board, was a member of a Cancer Council and participated in a Quality Panel for the hospital where I receive my care. On March 26th, I drove to Washington DC to attend the PCORI review panel meeting and I ended the month reviewing three additional proposals for MICH-R (Michigan Research Institute) which I’ll present and defend in the coming weeks.
This didn’t all happen at once. Ten years ago I started by volunteering to be a patient representative on a Pediatric Ethics Committee. Over the last ten years I’ve just gotten more and more involved.
Why do I do this? Mostly, I’d say it’s because it all matters. Maybe it’s because I’m still alive and this is my way of paying the universe back for allowing me to continue breathing. But in reality, it’s because I love what I’m doing. The work I do has value to my lung cancer community and it has value to my family.
Today I have three daughters, Stella who is now 11, Grace who is so close to turning 9, and my baby Leda, who is 7. My life is full. My family means the world to me, my work has meaning and my days are filled with laughter as I struggle to get smarter just to keep up with the truly bright people I work with.
And on those days when I don’t feel grateful to be alive or days when the exhaustion is particularly difficult; I’m comforted by knowing that I can still contribute and that my involvement is welcomed by a community that appreciates my perspective.
Click here to find out how you can make a difference in research!