I got a new drug...

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Hello family and friends.
 
As I think you all, dear readers, know or have intuited, my blogging generally operates in the “No news is good news” concept.  Thank you each and all for your inquiries, check-ins, good thoughts and other wonderful things that pertain to my health journey (and anything else!) 
 
So now we have some news, so it’s time for some verbiage.  And a couple of pix!  Some of the news is “good”; some of it, although not “terrible” is ….uh…. “somewhat less good.” 
 
As always, feel free to ask questions or have some comms with me or us—one of the best things is hearing from people periodically. And still and always—no social media on this topic, please.
 
Executive Summary:  Spine is fused as intended and I'm now working on strengthening muscle and soft tissue around the ‘fix.’ Cancer has some new minor-ish developments that trigger an additional hormone (oral) drug with side effects, both medical and financial. 
 
The Back: 
In April, I had my one-year checkup on spine surgery (the Tiger Woods Lumbar Fusion!)  Everything checked out well in the doc’s eyes and he gave me two take-away comments:  1) “you’re officially ‘fused’”, and 2) (still/again) “if it hurts stop doing it…otherwise you’re good to go.” In explaining #1 about fusion, he said that the shadowy arching bits and some of the surrounds were newly grown bone.  I’ve marked them on the xray photo.  So, hooray!  This is not to say that I’m totally pain/discomfort free—the muscle and soft tissue back there gets stiff with activity, sitting certain ways is uncomfortable, and more(!) but it’s all way better than it was a year ago. Also, I’m old.  I’m happy to report that I am playing a little golf now. Even with a shorter and slower swing (and, it follows, shorter and more errant shots) it’s great to get out and do it. 
 
The Cancer:
A confluence of circumstances has been cause for a change/addition in my med protocol for hormone (testosterone) suppression.  And then some follow-on confluences have taught me even more about the current Med, Big Pharma, Big Insurance systems in this country…Things that have been mostly on a continuum between “Huh?” and “F U”…aaaannnnnd now the early phases of Medicare will (possibly? hopefully? maybe?) resolve some of the complication.  We’ll see.
 
Over the last 3 or 4 quarterly visits to my oncologist, my PSA score has started to spike a little.  Post-chemo (2020 summer) it has always trended upward, but in the last 9ish months it has risen from 0.35 to 0.55 to 0.67. As a reminder, for a “normal” person PSA up to 4.0-ish is OK—5.0 and above needs a look. The other component cause is what was found in a PET-scan that I had a few months ago. It was my first—and it’s supposed to be a more granular look than the ‘regular’ bone scans and etc. that I’ve had many times before.  While the PET showed no new or concerning growth in my original metastatic sites (rib, spine, hip), it did reveal two new small spots that 1) could not be absolutely confirmed as cancer or mets, but 2) looked “suspicious” to the various interpreters of these tests.  One spot is on the prostate gland itself and the other is in a different spot on my hip. Because she (the oncologist) uses an “abundance of caution” approach with me and my kind, and, importantly, because the recommended protocol has changed some since my journey started in 2020, she has added a daily oral medication to my every-six-months injections (“Lupron”) for additional T-suppression. Were I starting now where I started in 2020, I would immediately start receiving both of these along with the start of chemo. 
 
The drug is “Xtandi” (corporate PR name, obviously.)  HOORAY!! I’m finally taking something that is advertised on TV all the time.  Bwahahahahaha!  I take some pills every day which are intended, and Dr H hopes they will, knock the PSA score back down into the 0.0x range and deter any potential expansion of the “suspicious” bits.  
 
With Xtandi, there are several of what you’d call “side effects”…broadly defined.
1-the potential internal medical ones are much the same as what I’m already taking: reduced stamina, muscle weakness, fatigue, hot-flashes, cognitive fog, weight gain, and so on.  These symptoms sometimes feel about the same as before, sometimes more pronounced. I’ve been on the stuff for 3 weeks so it may get less erratic over time.
2-there are also potential ‘external-ish’ medical SFX, in that this stuff can diminish the effectiveness of other medicines.  Turns out that all the meds I take for mental health and reflux are—tada--in the “might-happen” list. Damn it.  Since the ups and downs of mental health issues can be hard to assess under ‘normal’ circumstances, we are told now to watch closely for…something….
3-As seems to be happening evermore these days, the other SFX are financial ones (which can then, of course, ramp up the stuff in #2 above.)  The current insurance that I buy through Ann’s work at Simpson, United, does not cover this TV-star-pill.  Coincidentally and ironically, we just got switched over to United a few months ago after many years of Blue Cross/Wellmark (which probably doesn’t cover it either.)  Thus, some very interesting and complicated back and forth (sometimes seeming like shady shenanigans) has ensued between provider doc’s office, insurance, and Rx company (in the Pfizer umbrella.)  And lots of forms and phone calls for me.  It’s easy to get into the weeds fast on this shite, so I’ll just say that comms about “grants,” “corporate offerings for free,” “debit cards,” “explain that to me again please,” “commercial insurance” and more have thus far yielded my first 1 month of drugs and/but definitely continue.  Since someone may ask, the cost of the drug, absent insurance or other financing?  The number is fluid, of course, but in general, one month equates to a year’s worth of car payments. I KNOW!  (OF COURSE THEY HAVE TO PAY FOR THOSE TV ADS!!) Fortunately, the oncologist’s money-n-forms people deal with this all the time and do their best to say/not-exactly-say “calm-down, it’ll work out.”  It’s a work in progress, methinks, like most of life.
4-Coincidentally…..On August 1, I arrive at the two year mark of receiving Social Security Disability. You may or may not know that this situation means that SocSec automatically puts me on Medicare. Once we get it all sorted out, Medicare will be better and cheaper than “United” (commercial) insurance, but the comms about grants, debit cards, corporate grace, will continue. Out of the gate, Medicare Advantage or Part D programs don’t cover Xtandi either. 
 
My current take-aways?
1-No one can convince me that our med/pharma/insurance complex doesn’t suck….in the large conglomerate late capitalism way. Happily, the people who work in it at my level are largely top-drawer. Which makes it even worse in the end. But that’s another conversation.
2-United Healthcare? Not recommend. Also, doc providers outside of big med systems disdain it.
3-I have high hopes that the drug will work and, therefore, that the med money people will figure out how to pay for it and my Medicare journey will make things better and cheaper all around.
4-One step at a time. One day at a time. An ongoing project study.
5-I’m still here. Doing some things. Seeing some people. Creating some things. Chuckling and worrying about the politics. Watching the sportsballs and !Olympics! Trying to remain focused on the most important things:  time and people.
 
Thanks for hanging with me in my corner.  Much love to you from my spot in it.
 
TW

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