“The most important things are the hardest to say, because words diminish them.”
— Stephen King
Many have heard me thank you and tell you what SUPERHEROES I think you are and how I wouldn’t be here if it weren’t for people like you (countless of times). And I often feel that it sometimes diminishes theTRUE, DEEP feelings of gratitude I have for what you all do (just as the quote says) because to many of you, it may be just words. So I want to share with you a few things that you might already know. Now, I’m a bit STUPID-stitious about talking about my health condition, I think it’s bad luck to do so…much like coach Paul is superstitious about wearing his tri event shirt BEFORE the actual triathlon…lol. Anyway, it’s time for me to get rid of this STUPID-stition that I have so I’m changing it now.
In June 2005, I was diagnosed with a rare form of Leukemia that has no medical cure except for that of a perfect bone marrow match transplant. (What this means is that the only cure is a perfect match bone marrow transplant) And unfortunately, searches in the worldwide database have resulted in no usable match for me. (not even my 3 sisters who seemed sure to be a match) So, NO CURE FOR ME! My bone marrow continues to produce the DNA that produces cancer.
However, breakthroughs in medical research and technology have come up with a miracle drug named Gleevec that makes my disease “manageable” as opposed to fatal. And in fact, I reached the “manageable” state of the disease after only a year of treatment. So, I went ahead and told the world how happy I was that I was FINALLY in the “manageable” state and I was sure that I would follow in Virginia Garner’s footsteps and remain in the “manageable” state for as long as her (more than 10 years now). But soon after I sent the message out (like one month soon…) I became resistant to Gleevec, that very same drug that was saving my life. (which is what actually started the whole STUPID-stition of mine) So I was in a precarious position because I had no bone marrow match and the new drug I was taking wasn’t working. What is even worse is the Research Doctors couldn’t find a reason why I became resistant to Gleevec in the first place. And that could mean that there’s something about me that has the propensity to become resistant to the drugs that are saving my life.
But after many ups and downs, I am now taking a drug called Sprycel that seems to be working. But the fear of becoming resistant to this drug will always be present in the back of my mind. Despite this predicament, my family and friends continue to assist me in my fight for life as I strive to maintain my health and be there for my wife and 2 daughters. By looking at me, it’s difficult to see the struggles I go through. But the struggles are there and fear demands its presence in my daily life as I evaluate every pain, cough, and breath I take…but I continue to press on.
So all of the verbose rhetoric I write is an attempt to expound on the simple words you hear me so often say…THANK YOU, SUPERHEROES, WHAT YOU DO IS SAVING MY LIFE!!! I hope you never get sick of my thanks to you as this message is merely the tip of the overwhelming gratitude I feel for what you are doing.