Tom’s Story

Site created on August 8, 2020

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Journal entry by Tom Wells

I've slept in my own bed four nights in a row.  I've fed the finches and listened to the birds from pre-dawn until after dark. I've cuddled and "scritched" Clarence, Nutmeg, and Milton.  I've been surprised that the thing I enjoy the most is having control of my own schedule .

Thursday we travel back down to UCLA for what we hope is only two out of the three usual appointments.  Appointment 1) Get "Labs" (the blood type not the cute dogs) 2) An hour or two later meet with the nurse practitioner (every other trip it is the doctor) and go over the numbers.  3) Cross the fingers to find out whether I need fluids, red blood cells, platelets, and/or a Neupogen shot to help my body produce these on its own.

I've never met a meat grinder like this experience.  There are vague memories of getting the class schedule needed in college and high school - where there are conflicts, or the one you want is full, or it doesn't fit with work, or it's not taught by who you hoped for....etc.   But I'm not sure those match up.

Parking - unreal - can easily take 20 minutes to find a spot.  The pandemic's affect on the operation of the Bowyer Oncology Clinic is palpable - spend more than 30 minutes in a waiting room chair listening to all of the suffering and transactional frustration and whatever calmness you brought in is gone (note to self - earplugs).  Go to the window to find out if you'd been overlooked to find out "we called you..." and the frequent care givers blank stare and question "why are you hear?"  At least at this place - at this point - it is such an institution, there is little or no personal compassion.  (not universally true of other procedures at UCLA)

I recognize that I'm having the equivalent of "post marathon syndrome" (PMS) - the emotional letdown that often follows 22 or more weeks of focused preparation and the excitement of the race and all that was experienced.   Worry, fear, and anxiety behind.

The usual "fix" is to a) acknowledge it b) set the next goal and c) rest.  I have that; The Avenue of the Giants 1/2 or Full in May 2021.  Of course I'm not ready to really be doing much exercising yet and certainly not at a level where I feel the endorphin kick.

It seems strange, but I am struggling with my good fortune.  So to speak - survivors guilt.

I didn't have hallucinations. I didn't have seizures.  I didn't contract C-diff.  I didn't come down with a lung infection or a fever that required an extensive workup.  I never left "the floor" for imaging of a vital organ struggling.

I'm not sure why I'm exactly struggling with "dumb luck" and good fortune - so I'll talk it over with my therapist and a few trusted friends.  Very likely there'll be some good insights to come.

I've asked the same question of everyone I've ever coached and myself after finishing an endurance race "would you do it again?"  And at least for me I've always answered "Heck Ya!" (an endearing phrase of one of my sons).  

I'd like to come to grips with this beast.  I know this process hasn't really been the same as training for and running a marathon, but "Heck Ya" doesn't spill from my lips.  And I catch myself and wrestle with the internal understanding "yes, if that's what saves my life and lets Lisa and I have many more years together."

I'll be patient with this PMSCT (post marathon stem cell transplant).  I'll take my medications.  I'll eat (even though I'm not interested).  I'll rest when indicated.  And I'll be physically active getting the yard back in shape and walking Clarence.  And I'll continue my prayers of gratitude - for all of the spiritual and physical support so lovingly given- (I'm overwhelmed here too - I have so many thanks to speak and demonstrate)

Maybe, like at the finish line of the marathon they should hand out a medal or at least a space blanket.  Usually I say I'm not really been into "race bling" - but I was so happy to have my Boston Marathon Jacket with me at the hospital (thanks Karen).   Then again, this event isn't quite over.  I still have a compromised "young" immune system.  I need to stay vigilant and accept that this is different.  This will all be behind us soon enough.

 

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