Surgery

Out of the Tunnel

baldbrady4 Comments

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.

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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.

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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…

Operation California

baldbrady16 Comments
robotic surgery equipment
Meet my surgeon.

I am currently sitting at Black Canyon Coffee at the Chiang Mai airport waiting for my flight back to California.  In a few days, I hope to be getting surgery to remove an alien growing on my mesentery.  This is a good thing.

It took me 4 scans, 2 biopsies, 8 shots in the ass, and more trips to Bangkok Hospital than I can remember, to get to this point.  Finally after ruling out prostate cancer, and getting a diagnostic confirmation from the Cleveland Clinic, it all comes down to this one 2.5×1.5 cm tumor.  The consensus is get it out if at all possible.

I talked with two surgeons affiliated with Bangkok Hospital.  One was willing to do the traditional slice and dice procedure, and the other one was an expert in laparoscopic (minimally invasive aka. key-hole) surgery.  Neither had any experience excising neuroendocrine tumors.  I had to wonder if they would even know what one looked like. So I went on the internet.  It turns out there are only a handful of facilities in the USA that have a specialization in Neuroendocrine Tumors (NETs).  It boiled down to choosing between Dana-Farber Cancer Institute in Boston, The James Cancer Center in Columbus Ohio, City of Hope in Duarte, California, and Cedars-Sinai Medical Center in Los Angeles.  One didn’t take my insurance, and one didn’t follow-up after 3-4 emails.  In the end, I chose the Carcinoid and Neuroendocrine Tumor Program at Cedars-Sinai.  In about 48 hours, I have an appointment with a surgeon who specializes in NET tumors.  Not to disparage my doctors in Chiang Mai, all of whom gave me excellent care, but this feels like moving up to the big leagues.

My prospective surgeon, Dr. Kosari, has reviewed my scans and believes the tumor is resectable (Doc speak for “yea, we can cut it out”) and likely can be done minimally invasively using a robotic assist.  As the above picture shows, the robot looks a little scary.  Sean Connery would agree.

I want to emphasize that my disease has not worsened or progressed.  Surgery, if possible, is a good thing (my new mantra).  My disease will still be there, will still be incurable (BUT NOT TERMINAL).  If successful this will be a step towards my ultimate goal – high life-quality while waiting for something else to kill me.  Stay tuned.