Got a reality check Sunday after I read my wife’s post on Facebook. Took me a few reads and a little time listening to Harry Nilsson to get my head straight again.
After being dropped from the experimental drug trial at MD Anderson a little over a month ago I went into a little bit of shock. While my medical issues had called for my demise around six months ago, I have attempted to keep a positive attitude and consider every additional day a gift. Still do that everyday.
Accepting the fact that the experiment didn’t work, I wasn’t certain what my next step would be. MD Anderson offered another experimental drug trial option; however, it called for a weekly visit to Houston to get a triple shot of chemotherapy. I had about a month for the drug I was taking to clear my system before I could start the next experiment. During that month I did a lot of thinking.
While I had developed a tasty habit of texas bbq brisket I had already made a conscious decision that I would prefer to jump of a cliff rather than be tied to a clinic in Houston for a lifetime of constant experimentation. I also realized something else, that is while MD Anderson is a great place which does offer valid life extension. It is a trial laboratory and that is somewhat different from most care centers. I often joked that I heard monkey’s screaming in the back, eventually they told me that they didn’t use monkey’s. Rather they used rats! (Actually they then use humans since most of the treatments are not FDA approved)
While I mentioned numerous side-effects every week they simply recorded the issues and never offered any solutions. Whatever it was Foot pain, check. Headaches, check. Solutions nothing. As Harry Nilsson did, I said, “doctor ain’t there nothing I can take to relieve this belly ache,” The doctor said, “put the lime in the coconut and drink bot’ up and call me in the morning”
The only solutions I received were from outside doctors I had consulted with myself. is primarily interested in the experiment, period. It seemed that the only quick action happened if the experiement was headed south, they didn’t want anyone to die on their watch because that would screw up the stats on the experiment. I suppose you can’t have too much of that and get FDA approval on the drug itself! That said, I still think MD Anderson is a great solution for anyone who is given no hope prognosis.
With this in mind I decided to speak with a local doctor in Bloomington, Illinois. He had offered me several solutions for problems I had from the other grand experiment. He offered several ideas, the best one was where I only had to get a treatment every 3 weeks! It was a drug called Keytruda which had been used for other cancers; however, it was being used in a trial specifically targeting my type of cancer. Major side effect, initial exhaustion.
After a 40 minute treatment on this past Friday I stayed in bed Friday, Saturday and got up Sunday to go to church. Besides my wife, church is one of the few places I go where I can ask any question, as long as I don’t expect an answer directly as it isn’t a two-way conversation in my experience anyway.
While I was still tired when I got home I decided I would get on a treadmill and get a little exercise. It got my engine started and I was able to stay awake, about an hour later I got a text that my 51 Chevy was done and ready to take for a test ride, that really got my heart pumping! I was getting somewhat concerned that I might not be able to make a 2000 mile drive back to Vegas if I was in a constant state of exhaustion.
Got up this morning, had a meeting with my attorney enjoyed a little breakfast. Still awake and realized, as Harry Nilsson did, that while everybody’s talking at me and I don’t hear a word they are saying, only the echos of my mind. I going where the sun keeps shining through the pouring rain, going where the where the weather suits my clothes.
I do realize that my lovely wife is more than correct forget the quiet, dump the anger and got my energy back! Seems like I forgot Wednesday is my 14th anniversary and after twenty years this woman is more important to me than all of the doctors, experiments put together. Love and faith are my answers, put the lime in the coconut and drink them both up in my old pickup truck. Time for a little happy dance. Have a great day, appreciate your life as it could end tomorrow.