top of page
Blackboard with word Prostate cancer and stethoscope, medecine concept.jpg

One advanced prostate cancer survivor's story of living through incurable prostate cancer with one life extending treatment at a time.




How Short Can a Life Extension Be : Short

Not only did they change me from Zytiga to Xtandi but I was changed from Firmagon shots, first to Eligard in April and then Lupron shots after checking my testosterone and finding it was out of range high. Now that doesn't mean I had more testosterone than I know what to do with, it meant I was running above 50. Normal men would be several hundred. PSA would drop from the 3.25 in January to 0.35 in February and 0.31 in March. We're back on track, things are looking good. April would bring an end to that with a PSA of 0.63, almost doubled in a month. Three weeks later 0.78. Another month would be 1.21, definitely trending back up. I was having some pain in my upper spine during this. It was time for a new scan. I didn't qualify for the new PSMA pet scan, instead I had a bone scan and CT scan. The pain was justified the T5 vertebrae had an active tumor.


The End of Two

This extension gave me five more months and I am considered castration resistant. That is when the hormone therapy no longer can control the cancer by itself. This means additional treatments on top of the hormone therapy. I still wasn't seeing these as life extensions just part of the journey. The realization was coming.


#prostatecancer

#prostatecancersupport

#prostatecancerblog

#mohawkmission

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.

#prostatecancer

#prostatecancersupport

#prostatecancerblog

#mohawkmission




One advanced prostate cancer survivor's story of living through incurable prostate cancer with one life extending treatment at a time.




Purpose?

I'm going to backtrack just a bit, in December 2020 I had a feeling God was asking me, "Now that you have this cancer, what are you going to do with it?". Not what are you going to do about it, but with it. That is when I decided my purpose with whatever time I may have left was to work to prevent as many men as possible from ending up being initially diagnosed stage four. To get them checked so that early detection would save their life. Early detection results in a greater than 99% five year survival. Find it how I did and you end with a 30% five year survival. My life changed at this point, I had a purpose in my life bigger than me.


How do You Fulfill Such a Purpose?

I was already pretty comfortable telling my story. I would lay in bed at night and think about talking in front of large groups of people. At first it was men, they need to know. Covid quickly stopped all dreams of being able to do this. I kept thinking that surely this would be over soon and I could get back to trying to find groups to talk to. Around the first of September of 2020 I decided to form the Mohawk Mission, a social media based platform to spread awareness about prostate cancer since I couldn't see groups. I open a Facebook page, Instagram page and started a website. It was a meager at best attempt to get the word out but I had started a path that would grow.


Why Men?

I don't recall when this thought first hit me. How many men would I be able to find that want to listen to a guy talk about their prostate and cancer. Let's just say that I wouldn't have attended! I was the guy that didn't care for doctors, there's nothing wrong with me, I'm okay, I feel fine. Didn't know anything about prostate cancer before diagnosis. Never had a PSA test. I knew I wasn't the only man like that out there, and probably a majority men were the same. After all, we're men! No, this needed a different approach. Women are accustomed to seeing doctors from a young age and are generally the Health CEO's of their families. I needed to reach women, they could help get men to the doctors. So my thoughts changed and I started targeting women more.


500 Women

You never know what direction you may be lead. Spring of this year (2022) I had an appointment at the neurological institute for a problem I was having with vertigo. We talked with the nurse practitioner that saw me at the end of the appointment about my cancer. She told me about a group of women that gather every summer for a day of fun and fundraising. I did some research and found the woman that created this event. I would learn that they raise over $20,000 a year for a prostate cancer nonprofit and have several hundred women attend who do a float trip down a local river. I was asked to talk at this event with over 500 woman attending. This would be the pinnacle of my speaking engagements, getting to joke about the hot flashes and the table with stirrups, but then challenging them to get their men checked for prostate cancer. This will be a day I will never forget.

#prostatecancer

#prostatecancersupport

#prostatecancerblog

#mohawkmission




bottom of page