[This blog entry is dedicated to Cheryl & Tara Nikituk, who lost their husband/father Paul to prostate cancer at the age of 54, only 14 months after his initial diagnosis. They have been tireless advocates for men battling prostate cancer for 15 years now, and their lobbying efforts have helped fund the very research discoveries that have kept me alive for the last five years.]
This past Monday, we shot episode #20 of our Cincinnati Cancer Advisors “Medical Minute” podcast. This podcast covered my most recent bit of testing news related to my prostate cancer, which is progressing a bit faster now. In chronicling what has happened since we shot episode #16 entitled “Biopsy Results,” I was stunned by all of the tests I have had run, the doctors’ visits made, and the phone calls involved in trying to figure out what to do next.
It dawned on me that the head-spinning number of things that one must do, and decide, when going through something like this is not unique to my journey at all. I may just be better able to assimilate it at this point due to dealing with it for 8+ years and being surrounded by oncologists that can help me make sense of it all. I am very fortunate in that regard.
Yesterday, I spent the whole day on the Washington “beltway,” virtually speaking. I started the day on a phone call with the Principal Investigator that is running the “Quest” clinical trial at the National Institutes of Health (“NIH”) in Bethesda, Maryland. This is one of the two clinical trials I am currently considering as a next step in my treatment journey (the other is at the University of Michigan).
For those that don’t already know, the NIH is the nation’s leading medical research facility. I was extraordinarily impressed by the kindness - the “bedside manner” if you will - of Dr. Gulley. He almost made me forget that I might soon be signing up to become a human pin cushion while trying out new combinations of unapproved drugs that have been tested on hardly anyone to date. And yet, I felt blessed to even be having the conversation. Because the NIH is taxpayer-funded, all treatment is free and even my travel expenses back and forth would be covered. Amazing.
Shortly thereafter, I began five hours of consecutive phone calls to the staff offices of federal legislators from Virginia and Kentucky. These calls were made to the offices of politicians whose names you know… Mark Warner, Tim Kaine, Mitch McConnell, Rand Paul, etc. I and my fellow volunteer “lobbyists” had four asks of these politicians, all related to improving outcomes for prostate cancer patients and increasing the amount of money spent on life-saving research. It was frustrating listening to the excuses for not wanting to allocate an additional $10 million to a nationwide program that has literally saved tens of thousands of lives through its research discoveries.
As frustrating as that was, I quickly came around to being thankful that I can access advanced medicine in the U.S. and may be able to do it at no charge thanks to the NIH. I was also inspired and gratified to meet others who are carrying on the legacies of men lost way too young to prostate cancer.
Until next time,
Steve