Out of the Tunnel

It has already been two weeks since the operation to remove a NET from my mesentery.  My ordeal began on Monday, March 2 at 5 pm when I checked into Cedars-Sinai Medical Center for an unusual early-evening combined colonoscopy and endoscopy.  I remember nothing of these procedures other than waking up about 30 minutes later with a blurry doctor telling me he found of nothing. My innards were perfectly clean as far as he could see, which is pretty amazing considering the abuse I have subjected them to over the years.   Since my surgery was scheduled for the next morning at 7 am, they kept me right there in the hospital.

Five tiny incisions, and one slightly larger one.  I’m pretty sure I no longer have a belly button.

The next several hours were a blur.  I think they must have slipped me something.  The last thing I remember was looking at the red digital clock across the room and seeing 7:00 a.m.  I awoke amid a misty commotion all around me of doctors and nurses.  I squinted through the chaos and saw another red LED clock that read 10:00 PM……Holy shit!  10 PM???  I remember doing the math and thinking I was out 13 hours!!!! Later I figured out it was really 15 hours!  I was expecting 2-3 hours.  Early the next morning I was told the operation actually took 9 hours, but it took me another 6 hours to come out of the anesthesia.

According to my surgeon, who stopped by the morning after , the surgery took much longer than anticipated due to the positioning of my mesenteric tumor amidst a jungle of critical blood vessels.  If he were to nip one of them, I could lose half my bowels.  He made the decision to go 100% robotic knowing that this would triple or quadruple the time for the operation, but allow for very precise cuts.  As a bonus, they found the primary (e.g. “original”) tumor in my small intestine, which they resected. I have been assured that I won’t miss the 9 cm of removed bowel.  The primary tumor was not visible on any of the previous scans, and that they found it is of great significance.  There was no longer any mystery about the source of my mesenteric tumor, and by removing the primary tumor, my chances of a quick recurrence should be reduced.

Day 3 in the hospital.  I look way better than I feel.

My doctor asked how I was feeling, and I told him I felt like someone punched 6 small to big holes in my belly, rummaged through my entire digestive tract, then yanked out a sizable section out through my belly button.  And then Mike Tyson used my belly for a punching bag for 5 minutes.  Actually, except for Mike, that is pretty much just what happened.

The next 6 days were a roller coaster of progress and setbacks, including an infection of unknown origin that left me feverish for 2 nights, getting dropped by a rushing X-ray tech (set me back at least 1 day), spasming at my first attempt to drink a clear liquid, and pained shuffles up and down the corridors.  But progress finally won out over the setbacks, and they released me almost exactly 1 week after I was admitted.

I made my final visit today to Cedars-Sinai for a last follow up with my surgeon.  He gave me the good news that I am officially NED (no evidence of disease)!  But Neuroendocrine tumors, even when you’ve had them removed, have a propensity to recur.  So I will be on a surveillance program, with scans every 3 months for at least the first year.  They are recommending that I can stop the monthly injections that I have been getting to slow down the cancers growth (a big relief to my digestive system).  This is all the best news I could have hoped for!

The care I received at Cedars-Sinai was amazing, from the orderlies, nurses, technicians (well, except for that one harried X-ray tech) and the dozen or more doctors that were involved in my care.  My main team consisted of my surgeon, a NET oncologist, gastroenterologist, and urologist.  All of them have been caring, funny, and exuding professional competence.  In spite of this being the most difficult medical journey of my life, I feel like I made the best choice!

I’ve now been staying with close friends just waiting to heal up sufficiently to fly back home to Thailand.  In the meantime, the world has imploded with the Covid-19 pandemic and it’s now a race against time through a dark tunnel to get back home before Thailand closes its gates.  If I can’t get back in time, I will be officially homeless…

Life Lesson #1: Believe the Labels

A quick update (as usual) regarding my upcoming tumor extraction.  My surgery has been delayed until Tuesday early morning March 3) due to a slow insurance approval.  I’ve been assured that everything is now is now a go.  The fun starts Monday with a double scope (endoscopy/colonoscopy, hopefully not at the same time) at 5 pm to be followed by an overnight in the hospital and surgery bright and early (7 am) on Tuesday.  Light is now slightly visible at the end of the long tunnel.  Now for the life lesson.

Who reads this?

When my son, Chanon was around 8 years old, I wanted to expose him to winter sports.  I skied from a very young age, and I wanted the same for Chanon.  He decided that snowboarding was more fashionable.  OK, I said, then I will snowboard too.  How hard can it be?  I am an expert skier, and sliding on snow with one board or two can’t be that much different, can it?  So we travelled up to Mammoth Mountain, California for a weekend of snowboarding.  Saturday morning I marched into the rental center and rented a snowboard and boots, while Chanon had a snowboard lesson.  I waited while his lesson finished, then we both headed for the lift.  I confidently strapped on the board like I’d been doing it my whole life, and managed to get on the lift without incident, but I kept reaching for my non-existent ski poles.  Getting off the lift at the top (of the bunny slope) was another issue.  I immediately face planted and had to be quickly dragged out of the way by the lift attendants.  I then proceded to wipe out at least 10 times in the 30 m between the top of the lift and the start of the downhill.  By the time I was 100 m down the slope, I had fallen so hard on my ass that I was pretty certain I had broken by coccyx.  Chanon enjoyed this very much.

That “run” ended after 100 m, when I unceremoniously unstrapped my snowboard and post-holed my way to the bottom of the run and marched straight into the snowboard school.  One lesson and I was good to go, although I still fell a few times smack on that broken tail bone.  Unlike skis, it seems with snowboarding, you either fall on your ass, or you face plant, no other choices. However, snowboarding is actually easy once you get the non-intuitive hang of it.  But the damage to my bum was done.  From that day on, for the next several years, I lived with a sore ass.  It felt ok most of the time, until I sat for more than 10 minutes.   X-rays showed  that it was deeply bruised, but intact.  Apparently your coccyx has a limited blood supply and heals slowly.  For me, that was about 5 years.

I could deal with the pain by sitting on the edge of my seat, or getting up out of my chair every few minutes.  The hardest thing though was enduring the 20 hour flight back and forth from the USA  to Thailand, which in those days was a 2-3 times per year ordeal for me.   I bought one of those neck pillows, and sat on it with my coccyx in the hole, but that only slightly delayed the agony.  Vicodin to the rescue!  I was given a prescription of this opioid following a root canal, and dutifully filled it, but never needed it.   I quickly found out that a dose of Vicodin about an hour into the flight would easy my pain and allow me to sleep for several hours.  Mostly, I avoided any alcohol prior to taking the Vicodin….until one fateful trip.

I justified the pre-dinner scotch and soda by telling myself that I would wait a couple of hours before swallowing the Vicodin.  Yea, I know the label on Vicodin says “no alcohol”  but who reads those?  Everything felt fine, and I sat reading a novel waiting for the medication to kick in.  Suddenly, I felt something I’d never felt before, and it is very hard to describe.  It felt like my blood was quickly heating up and turning to steam.  The word began to swirl.  I thought to myself – is this what it feels like to have a stroke?  Or was this a heart attack?  Or was I about to explode because of an alien fired energy beam?  Somewhere in the inner, reptilian part of my brain, I decided that I was dying, and that since I was dying it would be a whole lot better to die in the toilet rather than in my seat.  I was seriously afraid that no one would notice for several hours if I died in my seat.  I’d probably stink by then. So I undid my seat belt, rose, and took 3 steps down the narrow aisle toward the aft of the plane. Boom!  Out cold in the aisle, at 40,000 feet, somewhere over the north Pacific Ocean.

I awoke a few seconds/minutes/hours later.  I was on my back looking up at three lovely Thai Airways flight attendants, their gorgeous faces swathed in ethereal auras, staring down on me.  I was certain that I was dead and this was heaven.  That notion was soon dispelled in a wave a nausea and dizziness.  The young women managed to haul me up to my feet and back into my seat, but I told them that I was about to pass-out again, or throw up, or both at once.  They quickly moved me up to one of the lay-flat business class seats, and I was comatose within seconds. Some unknown time later one of the male flight attendants rudely shook me awake and ordered back to my economy class seat. I guess my allotted time to be ill was finished.

I slept quite good the rest of the flight, and my ass didn’t hurt.  I survived, albeit a bit shaken.  Life lesson:  Vicodin or alcohol.  Not both.  Read and believe the labels.  Since that time, I have chosen alcohol, and left the Vicodin at home.  And several years later, my coccyx finally healed.