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.
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.
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…