After rapidly moving through traditional therapies and the typical pattern of the available SOC playbook, I got a ‘Hail Mary’ with Keytruda. Without that, I’m sure I would of died by now, my family thought so too (but never said that to me). The 2019 Thanksgiving was a larger than normal gathering of family (who thought it might be my last), as I was bald and weak from my second run at Chemo which wasn’t working and it was not looking good.
So here I am two years later (at age 51) Feeling pretty much normal. Prostate cancer doesn’t plague my mind as much as it did in the past. Instead I’m thinking about stuff I need to do, planning vacations, working around the house, working full time and stepping back up towards the level of performance I once expected of myself at work. I’m wondering what is happening to my children as they transform into human-like but most certainly alien-possessed teenagers. In other words life has been pretty normal (with the exception of the pandemic, US domestic political drama, etc..).
I saw my MO a couple weeks ago and thanked her for helping me live long enough to see my kids become teenagers and expressed my need to live long enough to watch them become human again.
I was getting my affairs in order and preparing my family for my passing, … and then I got better. Getting better after being so close to dying was actually a tough mental challenge for me. (I know this is the wrong audience to complain about this too). As Cleodman shared, he reached a point where he was not fighting the current but instead floating with the river. Some may call that giving up, I don’t see it that way anymore. I see it as a transitional step of the journey that we all inevitably take. I had finally taken that step mentally. And pivoting back to fighting the current was/is hard. This resistance to pivot back to the fighting of the current, made me feel like I’m “giving up while getting better”. That transition; from fight to float and from float to fight takes work, just as it would to turn a canoe on a river and head back upstream. I mention this because I’m guessing I’m not alone in this experience. After taking so many arrows in this fight, always watching the PSA drop and then eventually rise again, getting hopeful, then full of fear and worry again; it just seems easier to let go of all that worry and follow the current of the River. So have I lost ‘hope’? have I lost my fight? I don’t know. It seems more like a paradigm shift in my thinking, I’m not worrying about surviving and I don’t want to fight that current. Instead I want to enjoy the journey, however long that might last.
After my PSA hit a high of 122 and then started rising while on Taxotere and having gone through most SOC including 2 runs at chemo, a clinical trial and other SOC. I got on Keytruda which crushed my PSA to undetectable (<0.01) after three cycles, where it stayed for about a year.
In my second year of Keytruda my PSA has slowly crept from undetectable (<0.01) to 0.01, 0.04, 0.07, 0.10, 0.15, 0.19, 0.15, 0.26...). I don’t like the trajectory but there are so few of us on Keytruda it is hard to really understand it.
Im now 51 finishing my 6th year post-diagnosis. I hope to get a PSMA pet scan soon to see if I can find the source of PSA, perhaps get a sample for analysis and then blast it with external beam radiation (palliative for my pain of course).
After resigning myself to death two years ago, and then surviving I’m no longer feeling panicked by PSA swings, labs or scans. Hard telling what the future holds but I’m doing good today and that’s what counts.