One advanced prostate cancer survivor's story of living through incurable prostate cancer with one life extending treatment at a time.
The Day I Did Something That Never Would Have Happened Before Cancer
My family and I were involved in fundraising in 2020 and 2021 for a large national prostate cancer nonprofit. We hit the ground running early in 2020 despite Covid. During that time the place I got my haircut was shutdown and my hair was getting longer than usual. I was still working out and one day after a good workout on the treadmill I walked into the bathroom and ran my fingers up through my sweaty hair leaving it all standing up. Perfect time for a stupid post. My post said my hair is protesting this Covid lockdown. One of my loving daughters replied back, "Dad you need a mohawk". Then the two of them decided they would give me a fundraising challenge. If they raised enough money I would get a mohawk. Negotiations ensued and we decided if they raised $500 that each of them would put in $250 for a total of $1000, I agreed. This was posted on a Monday night and immediately a friend of my oldest daughter threw in $500! Hang on a minute, it can't get by that easy. We moved it up to $1500. That came about by Thursday I believe. So having fun with this I told them raise $2000 and my moustache would come off. Now you need to know I have not been clean shaven since I was allowed to regrow my moustache after Navy boot camp in 1982. They'd had never seen me clean shaven. By Sunday they had raised over $2500 and on that day my oldest daughter Bonnie shave my head into a full mohawk and my other daughter Becky shaved my moustache off live on Facebook. What a day! No one including myself thought it would last but I gained so much attention from it I decided to make it my signature. Now it's not a full mohawk and I only do it for events and every appointment I go to, but I still put it on.
The Fall
My very first PSA test was four days after diagnosis and it was 280. My biopsy said it was 294. Under four is considered normal without prostate cancer. The hormone therapy did its job, one month later I dropped to 14.2. The following month 1.35. This trend continued all the way to June 2020 when it reached 0.01. My thoughts were I've got this whipped! Now we just need to stay here. Life was good.
The Rise
The next PSA test was in August, it was 0.02. No big deal, it's finding a place to settle into. I went back to monthly tests, September 0.06, October 0.26. This is starting to worry me. My PA that I am now working with said I met the requirements for Provenge Immunotherapy and we decided to do it. The three treatments for that were in November and December. This would help boost my immune system but not necessarily do anything with the PSA. We also discussed what to do if the PSA continues to rise. One more thing to check, a genetic test to see if I had the BRCA genes. This was important for two reasons. First if I had it, there were other treatments available and second, if I did my daughters would need to be checked since it could cause a higher risk of cancer for them. Well no BRCA genes.
The End of One
The next three months would seal the end of my first life extension, November 0.39, December 0.96 and January 3.25. Now was the time to make the change we discussed a few months before. I would change from Zytiga to Xtandi. Twenty months for extension one. This really didn't hit me as my first life extension was over. That would come much later.
