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Participation Trophy

[This chapter is dedicated to Keith Hepp, a friend and former colleague who died tragically and unexpectedly at the age of 55 from Legionnaire’s Disease.  As with another former Cincinnati Bell colleague of mine, Will Kays, Keith and I saw each other for the first time in years at a Leukemia & Lymphoma Society fundraiser one night where my friend Amy Kappen was being honored.  We updated our mutual contact information, vowed to have lunch “sometime soon,” and never did because of his untimely passing.  I have lost friends way too early, and it is a large part of the reason why I give thanks for each day I am allowed to enjoy on this planet.  It is also why I have a renewed focus on not “putting off” getting together with people that I care about.]

I was originally going to go with the all-too-easy, somewhat uninventive chapter title of “Three Strikes and You’re Out” to describe – SPOILER ALERT – my unceremonious dismissal from the clinical trial at MD Anderson Cancer Center in Houston on June 3, 2024, following a third injection at the full “target” dose level.  

What is slightly ironic is that I was kicked out of the trial not because those injections were intolerable, but because it was determined that my disease was “progressing” despite the treatment.  I am left to conclude that this decision was based largely – if not exclusively – on a rise in my PSA to 38 following an initial dip in that all-important number to slightly less than 20.

Although I say “all important” above with respect to PSA as a diagnostic, this number alone is not a panacea, although it is a fairly good reliable indicator of disease burden.  Said another way, some men express a lot of PSA and don’t necessarily have a problematic cancer (or cancer at all) and others may express little PSA and have a formidable cancer case to wrangle with (uh, that would be me.)  My understanding was that one would not get kicked out of the trial solely based on PSA results but given that I had not had a CT scan or MRI of any soft tissue to that point, it must have been based solely on PSA progression.   This has only been confirmed in writing in the form of a not-100%-definitive response to a text message I sent to the Principal Investigator for the trial.

So… after six weeks of feeling pretty much like roadkill at times, I think I basically got a “participation trophy” for being in the trial.  Thanks Mr. Abbott, you’ve been a lovely contestant.  It was a temporary jolt.  I had poured so much into this.  So much running back and forth and somewhere north of $10,000 in expense incurred only to feel bad and have no known path forward.  

A slightly unexpected outcome was how isolated I felt for almost two months, despite having Diana by my side for a good deal of it.  Despite the somewhat comparatively generous size of my hospital room, there really was no room to work once you subtract out the hospital bed, nursing stations, furniture, bathroom, etc.  Although I had my laptop with me, there was not a good way to use it and I began falling behind on my work and unable to help my colleagues at times.  I hated that feeling.  


As if I didn’t already know, I love my work.  I love where I work, and I love who I work with.  I am very lucky in that regard.  Something caused me to think back to something that my former Cincinnati Bell colleague Keith Hepp said to me years ago that incensed me at the time, but lit a fire under me.  At a time when we both worked in a sleepy accounting department at Cincinnati Bell, he said “you work to live; I live to work.”  

I thought this was a mouthful coming from a guy who admitted to having carpal tunnel syndrome at the time from playing video games at his desk and listening to talk radio all day (I am pretty sure that Keith actually believed for a while that Bill & Hillary Clinton had Vince Foster killed thanks to Rush Limbaugh’s lunatic ramblings).   Ironically, Keith also ended up in healthcare, becoming a well-respected executive in the health information exchange industry, helping to improve the way that patient information is shared between health systems, with a beneficial effect on patients.  


Keith’s comment made me mad at the time, but the truth is, it was the first time when I had to self-acknowledge that I was spending the majority of my time working in a job I was not passionate about (as I have noted before, cancer would later teach me the importance of not wasting that time anymore).  Even though I went on to a series of positions doing work that I did not love, his comment caused me to double down on the work ethic taught to me by my parents.  I wanted to be the hardest working guy in the room, even if I did not love what I did.  And it’s what made that isolation in Houston feel even worse because I could not move things forward at work like I wanted to.    


Anyway, back to the clinical trial…

The good news about being booted out of the trial is that I was out of the trial.  I was exhausted and needed a break from the constant litany of blood draws, vital signs, scans, and other procedures.  Even though my cancer was still on the march, I had a short bit of time where I wasn’t being subjected to it.  Life was, and is good on my back patio.

Physically, this trial exposed cracks in my foundation that I did not even know existed and were not readily apparent to me even weeks or months before I began the trial.  I even spent some time in the MD Anderson cardiac unit when I presented with “A Fib” for the first time and began to become an unpredictable fall risk, who would pass out unexpectedly due to a new condition called “orthostatic hypotension,” where my systolic blood pressure would drop up to 50 points when standing up.   It is now a month later and I am still trying to recover from a few of these new maladies.

So, what next?

One of the blessings of being back home was that I would finally be able to get a long overdue kyphoplasty, a procedure that would hopefully mitigate the excruciating pain I had been experiencing in my lumbar spine for nearly six months.  That process ultimately led to the discovery that I also had three new tumors found in my thoracic spine which are causing compression on my spinal cord.  This complicates things in a somewhat serious way as to what to do next to try to slow my cancer’s growth, as all evidence indicates that it is moving very quickly.  But… the excruciating back pain I was experiencing is better thanks to the surgery.  

Thankfully, as of a month later, due to very careful management of the spinal cord compression through use of steroids, I have been able to avoid an invasive back surgery (called a “laminectomy”) and I am able to get around thanks to a motorized scooter we lovingly call the “Green Machine” that I have on loan thanks to my good friend Brian Griffin.  

The risk of paralysis (or even death) due to a worsening of the spinal cord issue does have to be carefully weighed in any next treatment decision.  While we sort through that, at least I have my MD Anderson participation trophy and hopes of entering a new clinical trial that might prove more effective.  More on that coming up.


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