17 April 2019

Re:  Follow-up to all my extended family and friends regarding my health status…

     To everyone who has expressed their loving words, caring thoughts, and prayers for my health and wellbeing as I battle cancer, Thank you!  Your interest and involvement in my life has made a profound difference for the better in my physical, mental, emotional, and spiritual health.  Family and friends have been inquiring as to my health status post-surgery.  I didn’t want to offer up a status report until things were more firmly established in one direction or another.  In short, my surgical and post-surgical trials have been many, challenging, significant, and damaging to my sense of self (to say the least).  To those of you who wish to be spared the gory medical details, finish this paragraph and consider yourself updated as to my status; for those of you who are interested in such medical matters, read on to paragraph two and beyond.  For purposes of characterizing my health status, I survived the surgery (which was not a certainty), am slowly but surely recovering, and it appears they got all the known cancer during surgery.  My overall prognosis is good.  Your ongoing thoughts and prayers for my full recovery would be deeply appreciated!

       Now, for the “rest of the story…”  My surgery, while major, was expected to result in a one-to-two day max in-patient stay, with some discomfort but wholly manageable.  Well, I ended up as an in-patient for nine days at UCSF Comprehensive Cancer Center, had two “near-death” experiences, and had (and continue to have) substantial pain.  Complications were not the exception but rather the rule for my entire post-surgical experience. 

     Things started to go wrong for me as my tumors were removed.  Three of the four adenocarcinomas were confirmed to be Stage 2, but one of the four was more advanced than initially though, Stage 3.  Because of this more advanced cancer, 29 lymph nodes were also surgically removed during the procedure.  I was “on the table” for some four hours.  In surgical recovery, it was anticipated that I’d be held there for an hour or so, then up to my room in the acute care ward.  In fact, my pain levels were so high, unmanageable with all manner of drugs administered through my IV, that I was still writhing in pain in the recovery room some five hours post procedure.  Concurrently, the staff was deeply concerned that my abdominal drain was so “productive” (i.e., releasing copious amounts of blood, 100’s of cc’s per hour).  I finally made it up to my room, but frankly I do not have any real recall of this whole post procedure adventure, it’s what I was told by those who were there.

     Once situated in my acute care room, I became aware of tubes running in and out of me from all manner of places.  There was a lot of blood in my urine, and my abdominal drain was still pushing out massive amounts of blood and other fluid constituents.  My pain was constant and significant.  I was receiving 20 mg of oral Oxycontin every two hours, 24 hours a day, and that only served to cut the pain in half (from a 9+ to a 5, on the 1-to-10 pain scale, with 10 being the worst pain you’ve ever experienced). 

     By day two as an in-patient they had me “doing laps” around the 6th Floor Acute Care Ward, carrying all my tubing and collection bags in a shopping bag.  I thought I was doing better, but I got paler and paler, more and more fatigued, and by day’s end I felt like I’d been run over by a truck every time I exerted myself whatsoever.  Even just going from my bed to my rocking chair was too much for me, leaving me dizzy and spent physically.  I was still losing over two liters of blood and other fluids from my abdominal drain per day.  When a set of labs were run to check my status, it was determined that my hematocrit levels were very, very, low; “incompatible with life”.  Blood transfusions started shortly thereafter.  I ended up receiving five units of concentrated / packed red cells over a day or two, which is significant in that the average adult male has some six-to-seven liters of circulating blood.  In short, I was really low on oil!  Slowly but surely my lab results started to improve, and I was pronounced “stable” some six or seven days after my initial admission. 

     My abdominal drain continued to be far too productive to be removed, so I was going to be one of the very few patients who went home with their Foley catheter (urinary cath) removed, but the JP (abdominal) catheter still in place.  After spending days teaching me how to care for the Foley catheter at home it became irrelevant, in that I stayed in the hospital so long that it could/should be removed before discharge.  However, I then had to learn all about caring for a JP drain, which would most definitely be going home in me.  By day eight it was looking like I’d be discharged in the afternoon, then…  out of nowhere both my lungs filled with fluid.  Within two to three minutes I was drowning in my own fluids.  For the second time since my admission the Rapid Response (crash) Team was summoned to my room (the first time was blood loss related).  Many doctors and nurses crowded into by room, furniture was moved out to make room for all the clamor.  My IVs had all been removed in preparation for my discharge, and now I had doctors and nurses at both my arms trying to start new IV lines.  This proved challenging, in that my usually highway-like veins had all but collapsed into tiny ropes and threads, hard to establish lines.  Eventually, lines were placed in both arms, and all sorts of fluids and drugs were introduced through these lines.  Concurrently, respiratory therapy entered and started me on high flow O2, with a cloud of nebulizer gas engulfing my head as they attempted to get my lungs to open up and drain out.  Soon thereafter mobile x-ray showed up, and took pics of my chest (lung fields).  The concern, which I knew had triggered all this attention, was the thought that I had developed a “PE” – Pulmonary Embolism.  Yet another life-threatening situation.  My discharge was cancelled, and answers started to emerge.  A PE it was not; but, what actually brought on this rapid decline in my status was never actually determined.  It resolved a few hours later, either spontaneously or due to all the interventions they introduced via O2 mask and IV lines.  We’ll never know.  Another night of being woken up every two hours to have my abdominal line emptied, blood draws taken, and drugs given, ensued.  By day nine I was finally discharged, and during rush-hour traffic in San Francisco I began my journey by car back up to my High Sierra home. 

     At home, I returned to find that snow loading on my roof had released onto my back deck and steps, splitting a massive 4” x 6” structural component in half, lengthwise, just like when I split one of my wood bats in baseball!  Impressive snow and ice buildup.  Seeing all that snow made me sad that my ski season had been cut so short by this whole cancer surgery mess.  Oh well, I lived.

     At home I slowly improved, though my pain levels remained way too high.  I couldn’t really sleep well at night, because I had to get up every couple of hours to empty my abdominal drain blub, which held about 120 cc’s of fluid.  The first few days home I continued to lose a lot of fluid from my abdomen, over 1,600 cc’s per day.  I was told that this JP drain couldn’t be removed until I stabilized at 250 cc’s or less of fluid discharge over a few consecutive 24-hour periods.  U.C. Davis Med Center sets the level much lower, at 40 cc’s or less to consider removal I’m told.  Well, it took over two weeks for the drain to finally begin to slow its production.  With my pain remaining so intractably high a CT scan was ordered to determine what’s going on in my abdomen and pelvis.  Turns out, I have a number of fluid-filled sites and one big hematoma in my abdomen, along with two new hernias in weird places on my pelvic floor and groin.  A local general surgeon was willing to remove the abdominal drain, in consultation with my UCSF team, saving me an eight-hour round-trip down to SF to have this long tube removed.  Having the JP drain removed was “interesting”; I have it recorded if anyone’s interested.  Took a couple of pics post-removal with the doc holding the JP drain like a trophy fish; it was almost as long as she is tall!       

     My pathology reports came back from surgery, all four of my cancer sites had “clear” (i.e., clean – no cancer) borders, and all 29 lymph nodes came back cancer free.  The first really good news I’d received in some time.  It was/is looking good that all the cancer was caught and removed.  The next decision-point came when it was time for my first post-surgery PSA (Prostate Specific Antigen) blood draw, Wednesday the 10th of April.  I was told the a PSA of zero was best, showing no cancer cells still inside producing PSA; a score less than one was still good, but would be watched for awhile, with the test repeated every few months to ensure that the PSA number does not rise (if it rises, this too indicates that cancer cells remained in-place and are growing over time); and a PSA of one or higher would lead them to believe that cancer cells had been left behind, were active and growing, thus requiring nine weeks of daily radiation treatments in an effort to kill off these rouge cells.  My PSA of 10 Apr. came back at .006!  Almost absolute zero!  The second piece of good news I’ve received lately. 

     Of course, my recovery had to throw me a few more curveballs.  I’ve been referred to a hematologist by my cancer surgeon, due to the unprecedented blood loss I suffered post-procedure.  The thinking is that I have a very rare form of clotting disorder.  Went into the hospital for a blood draw to determine which rare form of clotting disorder I might have, and after 19 big vials of blood were taken, now await these finding.  It will be a few more weeks before I hear anything definitive.  Until answers are found, I’m told not to have any more surgery, unless it’s necessary to save my life (because, as my recent surgery had proven, it can take my life too!). 

    People keep telling me how great I look, perhaps because of my weight loss. I quip back, “yes, I’ve gone from a fit 205 lbs. to an anemic 167 lbs.; it’s the cancer diet, and I don’t recommend it!”  I have been feeling a bit beaten down by all this medical misadventure, and it turns out that there is physical evidence to support my feeling; I once stood 6’ 1” tall, but while being weighed and measured at the Gene Upshaw Cancer Center in Truckee I came in at 5’ 11”!  Oh well, I’m alive.

     My family, friends, and those I work with have all been great as I face this great medical challenge.  It’s been heart-warming to know that all the positive energy I’ve put out there has returned to ten-fold in my time of need.  I couldn’t ask for more.  Thank you all.  The journey continues…

     John