Luck, Travel and the Virus

I am a lucky bastard. In mid-February I had cancer and traveled to the USA to be evaluated for surgery. I qualified and had surgery on March 3, just about a week before Covid-19 shut down most non-emergency procedures. Lucky. A week later, I was out of the hospital and recuperating at a friends house (thanks to the Kirby’s!). Early the following week I could see the coming lockdown in Thailand and bought a new ticket in an attempt to beat the lockout. I made it home with less than 24 hours to spare. Lucky again. I wasn’t even required to quarantine. Without my lucky timing I would likely be homelessly wandering the streets of LA…or worse.

The lockdown in Thailand was pretty soft. Restaurants could only sell take away, but many businesses stayed open, some with curbside service. Streets were empty for a week or two but then traffic picked up. Tourists mostly fled. By the middle of April, my life was back to normal, but the borders were shut tight and all domestic travel was prohibited. Even Thai citizens living abroad were prohibited from coming home. It worked; locally transmitted cases of Covid-19 plummeted. Gradually, restaurants and golf courses opened, followed by bars, although most places that rely on tourists remain shuttered. The number of Covid cases dwindled to none. The government began allowing Thais to return home, but kept them in fortress-like quarantine. Thailand’s (pending) victory over Covid adds to my lucky streak. There’s a big advantage having an authoritarian government and a fairly obedient citizenry. Finally, domestic tourism began to not only open up, but to be strongly encouraged with some very good “Thai Resident” discounts.

Now it has been well over 2 months since the last local transmission of Covid-19. The only new cases are among the returning Thais (I never realized how many Thais were living in places like Sudan, UAE, Egypt, and everywhere else on the planet). A small percent of those returning tested positive in state quarantine. Last month they began letting in a trickle of foreigners, such as those that had family here, or had work permits. A few of them also have tested positive, but so far the virus has not escaped the quarantines. Best of all, my first post-op MRI came back clean, and I am officially NED (no evidence of disease)! How much luck can I have? Now, with virtually no foreign tourists, and many hungry resorts, Jane and I have set out for a domestic adventure.

Booking a trip was a bit difficult, with resorts and airlines unsure or uncommitted to opening. It took two tries to book our airline tickets and two tries to book a resort. Our first stop was Khao Sok National Park.

Traveling by air within Thailand was easy and convenient. Masks required, and no food or drink on board – even the seat pockets were emptied. But all seats were used, and outside of temperature checks and logging in to the Thai Chana (translates as “Thailand Wins”) surveillance app, the travel was uneventful. With no security or check-in queues, air travel was easy and pleasant.

Masks up upon arrival at Surat Thani airport.

Our first stop for 2 nights was Khao Sok National Park. The Park’s main attraction is the large reservoir backed up behind Ratchaprapha Dam. The dam, completed in 1987, flooded towering karst topography and virgin rainforest. This area is the wettest in Thailand, with over 3500 mm (138 in) of annual accumulation. Long-tail boats service several floating hotels anchored to the wilderness shoreline. We stayed at the Panvaree the Greenery, a high-end option about 45 scenic minutes from the Dam.

The weather during our stay was drizzly and dreary, fitting for one of the wettest places in Thailand. On our first night, we had quite an overnight storm that left us a bit queasy, and blew away some cloths we had hung out to dry. The next morning, the resort staff couldn’t find their rescue boat. Finally they realized that it sunk in the storm!

The staff spent several hours refloating their “rescue” boat.

The highlights of our stay included kayaking the local waters, hiking to a jungle cave festooned with glittering stalagmites and stalactites, and enjoying delicious and abundant southern Thai food at our floating home. I highly recommend the Panvaree – very friendly and comfortable for a floating, wilderness resort. But I couldn’t help but feel melancholy about the entire experience.

On the way to the Cave.

The low water level of the reservoir exposed about 10 m of normally submerged shoreline and the exposed, drowned deadwood constantly reminded me of what a beautiful albeit inaccessible place this must have been before the engineers arrived. The building of the Dam necessitated moving several villages and displaced more than 300 households, but also generates 240 megawatts of hydroelectric power and fuels a small tourist industry surrounding and within the park. For anyone willing to swallow these contradictions, I would advise visiting the lake when the reservoir is full; that way at least you can pretend the lake is natural.

Our trip will continue on Koh Phangan.

Covid-19 in Thailand, a Mystery

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Something strange is  going on in Thailand.  By all measures, Thailand should have been devastated by the Covid-19 pandemic by now.  In January and early February over 1 million Chinese landed in Thailand.  As of mid-February, over 100,000 Chinese travelers were still in Thailand.  Just walking around Chiang Mai in early 2020 felt like walking around a Chinatown.  Most certainly, the SARS-CoV-2 virus landed in Thailand in late December, or early January.  In fact, the first confirmed case outside of China was found in Thailand on January 13.  

 

Thailand is a densely settled country.  The overall density is 354 people per mi2 but this actually understates the reality in the urban areas; Bangkok has a population density of 13,700/ mi2.   Thai’s love to hang out in large groups.  The more the merry here. 

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Chiang Mai’s walking street in mid-January 2020.  If I were a virus looking for a pandemic, this would be a good place to start.

Thailand would seem to have been fertile ground for a new virus that was seeded here early and often by traveling Chinese.  But it never really took off.  Why?

Today, there have been 2,579 document cases of Covid-19 in Thailand and 40 deaths.  By comparison, New York State with a population less than 1/3 of Thailand has 189,415 cases, and 9,385 deaths.  The disparity is getting larger by the day.  Yes, I know we are probably comparing apples to oranges.  There is a very large discrepancy in the testing rate.  As measured per capita, New York tests 23 times more people than Thailand.  But New York has 73 times more cases, so when corrected for the testing disparity, New York still has 3 times more cases as compared to Thailand.   I would argue that the testing disparity is not that large; both New York and Thailand (at least at the beginning) had similar criteria for doing the tests – basically you had to be sick enough to be at the hospital.  I think a significant part of this testing-disparity is because there were fewer people in Thailand sick with Covid-19. I would further argue that the number of deaths is not nearly as impacted by the testing disparity.  Both New York and Thailand have likely undercounted deaths by counting only hospital fatalities.  The reality is that if Thailand had a similar per capita death rate, there should be nearly 30,000 deaths here!  But there are only 40 deaths in Thailand as of this writing.  This huge difference cannot be caused by lack of testing or any effort at hiding the death toll in Thailand.  

Thailand did not go into lock down until around March 20, and even now, the lockdown is not nearly as complete as in New York or California.  Prior to mid-March that it was pretty much business as usual here.  There was no early and aggressive intervention by the Thai government that kept Covid-19 at bay.

What is it that makes Thailand such infertile ground for the SARS-CoV-2 virus?  Could it be climate?  Perhaps the universal inoculation of the Thai population with the BCG vaccine gave them a large degree of immunity to Cover-19?  Perhaps, it’s the Thai habit of “waiing” instead of shaking hands?  Could it be some quick of genetics?  Something in the food here?  Why is this not big news, and why isn’t this discrepancy being widely studied?  Sorry, I only have questions.

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.

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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…

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.

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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.

Coming Out of the Closet

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Before I come out, just a quick update on my pending NET removal.  I’ve met with the surgeon, had my MRI, and had my pre-op testing completed.  Forward all engines!  My surgeon, Dr. Kosari at Cedars-Sinai Medical Center in LA was very upbeat.  He said the surgery should be buying me many years.  I may get my gall bladder out as a bonus; this is a preventative measure since the octreotide injections that will likely be a long-term part of my life tend to gum up your gall bladder.  Why do we have a gall bladder anyway since we can apparently survive quite nicely without one?  Maybe they should just remove it at birth along with your appendix. My surgery is scheduled for 7 am February 28.  Stay tuned.

At the risk of TMI, now for the closet.  Not the closet you’re all thinking of (sorry to disappoint).  It is an embarrassing medical closet.  It tuns out I am afflicted with another hard-to-treat disease. If you are at all squeamish about the details of men’s anatomy, now’s the time to close your browser………

I have Peyronie’s disease.  You can read all about it here.  I’ll give you the one sentence definition:  It is a condition whereby scar tissue builds up within your penis causing it to bend at a rather inconveniently acute angle (mine is about 70 degrees) that makes any kind of traditional bedroom fun geometrically impossible (not to mention extremely embarrassing).  The cause is thought to be either an acute injury or (as in my case) accumulated unnoticeable minor injuries during intercourse.  Woman-on-top is a big risk factor.  As my urologist at Cedars-Sinai said, it is perhaps just abnormal wear and tear.  Here’s what blows my mind:  According to my urologist, 9% of older men have this condition (and 3% of younger men)!! How could nearly 10% of men have this condition and I never heard of it until Dr. Google revealed it to me?  More likely than not, one or more readers of this blog also suffers this disease.   It’s time to bring this disease out of the closet. Sure, this is an embarrassing ailment, but really is it more embarrassing than hemorrhoids?  Worse than jock rot?  Worse than ED?  Worse than incontinence? We see all of these on tv ads everyday.  Hopefully more awareness will lead to more research and more treatments.  Hence my coming-out party.

I do understand why this malady is in the closet.  It takes a very heavy psychological toll.  Some men have been known to become suicidal.  To be sure, as ailments go, there are many worse diagnoses.  No one has died from Peyronie’s (not counting suicides).  For me, the realization that I had a condition that was not immediately treatable (at least in Thailand), and that would prevent sexual activity, was devastating.  Being otherwise healthy, but realizing sex was not going to be part of my life, hit hard.  With the help of a very understanding partner, I focused on other aspects of life.  In the end, I have to come to the realization that overall I’ve been pretty damn lucky, and there was still plenty to live for.  But not being able to be intimate with my partner is still quite painful.

It started about 18 month’s ago, so I have known about it for awhile.  Unfortunately, in Thailand, the only treatment they know about is radical surgery that sounded to me like partial castration.  I even travelled to a so called “specialist” at a top end hospital in Bangkok.  Surgical straightening, resulting in drastic shortening, was the only option he offered. Maybe I only imagined the sneer on his face.  

This week I found out the good news that there is minimally invasive treatment for Peyronie’s available in the USA. The treatment involves expensive injections of FDA approved, scar dissolving Xiaflex, and physical therapy (kinda sounds like rehabbing a shoulder injury).  My urologist said I am an ideal candidate – my condition has reached a “chronic” phase with no pain and no progression and my scar tissue is in the best location for this treatment.  So there is hope!  The treatment will necessitate anywhere from 1-4 sets of injections (each set done over a 5 day period) with each set of injections spaced 6 weeks apart.  This would necessitate returning to LA from 1-4 times this year (I can’t have an injection while rehabbing my cancer surgery).  Pending insurance approval, my first injection would be in August.  

The question now will be, is it worth it?  If I was 35 years old there would be no question, but at my age?  The cost of 4 trips to the USA will be substantial.  According to the doctor, the success rate is better than 50%, but I still risk spending money for nothing.  This is a decision that I will need to make over the next few months.  For now, I will concentrate on my upcoming surgery and the aftermath.  I will revisit this once I am fully recovered.  Who knows, by the end of the year I just might be once again an upstanding man (groan).

Thank you for allowing me to share this story.  Just getting it out here is a cathartic.  It will be nice not to have hide in the closet, and I’m ready for the inevitable banana jokes!

Operation California

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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.

Medical Care in Thailand: Observations from a Reluctant Patient.

imagesI am now 7 months into my battle with Nueroenocrine cancer.   I have had way more contact with the medical community here in Chiang Mai than I ever wished for.  I always figured that most people died in a hospital bed, so better to stay away.  However, I now feel somewhat qualified to make some observations about health care in Thailand that might prove useful to anyone thinking about retiring or traveling here for medical care.

An Update

But first, a very brief update of my current status.  I have now been on monthly injections of Sandostatin LAR for 5 months.  These injections are not a cure, but intended to stop or slow the tumor growth, and stop or limit the proliferation of tumors.  They do come with some unpleasant, but mostly bearable, digestive side-effects. Suffice it to say that if I had one of the more common side effects then, I would have been a cult hero in my fifth grade class.  Last month, I traveled to Bangkok for another Gallium 68 PET scan.  The scan showed no growth of my one known tumor, but continued to “light up” my prostate, suggesting something might be there too.  Last week, I had a biopsy done on my prostate where my urologist turned it into a pin cushion by removing 24 small cores.  Fortunately, I was in Lala Land at the time.  Early this week I got the results: nothing at all going on there (except BPH which I have known about for years).  Good news!

I will be meeting with my oncologists next week to discuss our next move (surgery or more Sandostatin injections are the two most likely).  Unfortunately, the one known tumor is in my mesentery, and is very unlikely to be the primary.  Where the hell is my primary?  Most likely it is 1. too small to see, 2. gone already due to immune response, or 3.  hidden away somewhere, most likely in the curlicues of my small intestine.  Neuroendocrine tumors (NETs in the lingo) are sneaky nefarious bastards.  Once they have metastasized they are nearly impossible to 100% expunge from your system via surgery or medicine.  This will make the decision to cut or not to cut a difficult one….So that’s where I stand at the moment.  In the meantime, digestive issues not-with-standing, I feel great and life goes on mostly as normal.

Medicine in Thailand

According to the World Health Organization, Thailand ranks #47 amongst 190 countries in terms of the quality of their healthcare system.  For perspective, the U.S. ranks #37.  Thailand, except for the tiny states of Brunei and Singapore, ranks number one in south-east Asia.  Thailand ranks 65 spots above India that magnet for medical tourism.  So by WHO standards, health care is pretty good here.  My own experience corroborates this conclusion.  But it is only good if you have money (or good insurance).

I receive most of my healthcare at Bangkok Hospital, Chiang Mai (BHCM).  Bangkok hospital is a country-wide system of hospitals that was started by a Thai doctor in 1972 as the first private hospital in Thailand. Prasert Prasarttong-Osoth parlayed his medical degree into a $3.2 billion fortune that includes Bangkok Airways and 3 regional airports.  BHCM is in my view the best hospital in Chiang Mai.  From its welcoming lobby that exudes the ambiance of a 5 star hotel, replete with live music from grand piano, to its immaculately attired english speaking staff,  to its state-of-the art equipment and spotlessly clean ORs and examining rooms, anyone will feel confidence in the care they are about to receive.  But the quality of that care comes with some significant caveats.

Caveats

In the course of my diagnosis and treatment, I have seen more than a dozen doctors.  They all impressed me with their caring attitudes, and general intelligence.  However they collectively are the product of an insular system of in-breading.  Virtually every doctor in Chiang Mai obtained their medical degree from Chiang Mai University Medical School.  Many are listed as faculty members there in addition to their hospital posts.  Thai culture’s pronounced stratification, makes questioning one’s supervisors/seniors/elders difficulty at best.  This just has to stifle innovation and the adaptation of new or alternative treatments.

I normally meet with two oncologists, one is an elderly woman listed as a professor emeritus at Chiang Mai medical school, the other is a youngish male with an MD degree from there.  When I meet with them, she does 95% of the talking, while he mostly stares at his computer.  She will suggest something, and he will do his best imitation of a MLB bobblehead doll.  On the rare occasion when I meet with him alone, he becomes talkative, and full of ideas and intelligence.  I would consider asking to be seen by just him, but I am afraid that it would make an irreparable rent in their cultural universe.

Another caveat is the lack of accountability.  Malpractice lawsuits are nearly unheard of in Thailand outside of a few high-profile nose-jobs-gone-wrong that splash across the headlines.  When a doctor makes even an egregious mistake, about the strongest reaction is “oops”.  Doctor’s are looked up to in Thailand to a much greater extent than are western doctors.  Thai patients seldom question their care, and confidently swallow unmarked pills given to them in completely unlabelled baggies with instructions of when and how many to take.   There is a clear advantage for patients if doctors have a paranoid fear of being sued.  I cannot say how much this accountability issue effects health care, but it will weigh heavily on me if I have to decide on invasive surgery.

The bottom line for now is that my health care has, in my view, been very good.  My doctors’ decisions have been verified to the extent possible by Dr. Google and his myriad colleagues.  I also received a “virtual” second opinion from an oncologist at the Cleveland Clinic, who, after reviewing all my records, scans, and even my original tissue biopsy samples, concluded that the care I have been receiving is spot on.  But my disease is uncommon, complicated, and varies from case to case.  Experience here is lacking so I may have to consider returning at some point in the future for evaluation at one of the handful of “NET Centers” in the USA.

A New Battle

I intend this blog to be a recounting of my adventures in retirement, and random observations about my universe that others might find interesting.  I don’t want it to become a recounting of my medical travails – I get enough of that sitting around beers at O’Malley’s Irish pub with my like-wise retired friends.  But, I do feel it desirable to share with my blog readers my current condition, since it will probably alter my life significantly going forward.  Besides, I am too lazy to recount the story to each and everyone of my friends and acquaintances when the subject inevitably arises – so hopefully most of them will read this.  I will be giving you the Reader’s Digest addition.  I am happy to recount the gritty details to anyone interested, but you might have to show up to O’Malley’s for that.

Upon my return from Nepal, having fully recovered from my bout with altitude sickness in Nepal, I awoke up one morning with moderate to severe stomach pain.  I endured it for the entire day before giving in and driving myself to the hospital.  I spent the late

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Well, I had to have a picture….These are what a typical neuroendocrine tumor looks like on a cellular level.

night and early morning hours undergoing a battery of blood tests and scans.  A CT scan revealed a soft-tissue mass on my mesentery. In case you didn’t know, the mesentery is the connective tissue that keeps your intestines from falling into a tangled pile around your ass hole.  I was given two rounds of morphine, which resolved the pain. A needle biopsy was scheduled, then delayed then scheduled again and finally happened on April 30.  The final results took another 2 weeks, but it was confirmed that the tumor was a neuroendocrine tumor, which on the realm of good news/bad news is closer to the good news end.

In order to determine if the cancer has spread, I went to Bangkok and was injected with radioactive gallium 68 and had a fancy PET/CT scan.  The injection arrived in a huge lead box, and the hypodermic was shielded by a large lead cylinder.  Yikes!  The scan showed a possible small tumor in a lymph node near my neck and my prostate lit up on the scan suggesting either a tumor there or prostatitis.  This means that the tumor had metastasized.

A bit about this kind of rare tumor.  They normally grow very slowly as mine is (good) but metastasize easily (bad). The location of the tumor on my mesentery is almost 100% likely to be a metastatic tumor, not the original tumor.  In many cases (like mine), the original tumor is never found.  For now, the treatment I have been prescribed is designed to control the growth and spread of the cancer (although there is a 10% chance the treatment will shrink the tumor.  If completely removing the cancer by resection is not possible, then there is quite simply no cure, only control.  Fortunately, several lines of treatment are now available to control these tumors, and many patients live a long time.  So I apparently have incurable but NOT terminal cancer.  The goal is to control it so well that something else gets me first.

On July 5, I had my first injection of sandostatin LAR, a synthetic hormone that attaches itself to neuroendocrine tumors and inhibits their tendency to grow and metastasize.  These injections are not chemotherapy (chemo only works on fast growing cancer).  The side effects are not fun, but nowhere near as bad as having chemo.  I will have 2 more injections 28 days apart followed by another radioactive PET scan in Bangkok.  I am also in the process of obtaining an online second opinion through the MyConsult program at the Cleveland Clinic.

So that’s where I stand for now.  Other then the side-effect of digestive problems, I feel pretty good.  As soon as I can wander farther that 50 m from a toilet, I will resume my jogging program – I am even thinking of trying another marathon down the road.  So life goes on, but my perspectives are evolving rapidly.

The Final Chapter

I woke up on Friday April 5 in my tiny twin-cotted room with a large pomelo attached to my knee. When I moved to get out of my sleeping bag, that pomelo screamed “don’t move me!” Apparently that sharp pain I felt during yesterday’s descent was not trivial. It really is a good thing I didn’t have to hike anymore. The day dawned bright blue and green. I was ready to go by 6 am. I spotted my pilot once again talking earnestly on a borrowed cell phone – his had run out of battery.

It amazes me how ill prepared my pilot appear to be given that he was flying in the worlds highest mountain range, with questionable weather that might cause him to land and even spend a night in almost any environment imaginable. Really, there aren’t regulations about this? He literally had only the clothes on his back. I ask him about this and he said he never brings anything. No suitcase, no cell phone charger, no clothing other than his leather flight jacket, no toothbrush , no nothing. Really?! I noticed the other pilots had small backpacks with them, so maybe he is an exception.

I limped out to the helicopter and asked him when we would go. Not so fast, the bad luck was still with us. Now that it was clear in the mountains, Kathmandu was closed by smog/smoke/haze causing low visibility. One by one the other choppers lifted of to fly to Lukla – their original destination. Only the two of us were left to await the weather in the Kathmandu Valley.

I hobbled around the landing pad, really just a small terrace that lay above the valley floor near the confluence of two drainages. It was perfectly suited as a helipad, with sufficient space around it to allow for take offs and landings. It looked pretty full with 4 choppers parked there, but the owner said he could squeeze in 12! His record was just 10 though. He charged landing fees from the airlines and also earned on food and lodging from their pilots and passengers, He prayed for fog I guess.

About 11:30 am, with the clouds starting to build around the peaks, my pilot final said let’s go! Kathmandu was just at the weather minimum and he said we would divert to another lowland airport if we couldn’t make it into Kathmandu. Earlier that morning, the pilot told me that he had house guests staying with him in Kathmandu, so he needed to get back home. Nothing like having a super motivated ill-prepared pilot flying you down to safety! The previous day I googled “Dynasty Air” to look up their safety record. Big Mistake.

We were soon in the air twisting and turning down the valleys to avoid the higher ridges. Once near the Kathmandu Valley we were forced to hug the ground to avoid the smoggy clouds. Visibility appeared to be just at the 1000 m minimum. We landed next to several other choppers at the communal heliport at Kathmandu Airport and I resisted the urge to hop out and kiss the ground.

I was met by an ambulance that whisked me off to Swacon Hospital. As it turns out, anyone who is rescued by helicopter must be evaluated and spend one night in a hospital if they want their insurance to pay. This makes some kind of sense, otherwise any tired trekker could just pant a little and request rescuing, and the insurance would cover the cost of their laziness. However the system is also rigged to pay maximum benefits to the hospital. I was given a physical exam, blood tests, X-Rays (ostensibly to screen for pulmonary edema) and made to stay overnight, my hospital room for the night was really just a cramped hotel room, complete with a set of toiletries in the private bathroom, and room service (food wasn’t bad). The only sign that it was a hospital room was a bare IV rack shoved into the corner.

The rest of my story is anticlimactic. I was released the following afternoon after I spent all the day fulfilling the insurance companies paperwork needs. I was picked up by one of the Nepal Hiking Team’s drivers, and deposited back at the Dom Himalaya Hotel. The next day was spent dealing with flight changes and more insurance hassles. After two nights at the hotel, I endured the uneventful flight back to my home in a Chiang Mai.

The great news is that my erstwhile partner, Tom Prouty, successfully reached Everest Basecamp and safely returned to Lukla using his own two feet. I have to admit a little chagrin that the older, cigarette-puffing, beer swilling dude was able to do what I could not.

Epilogue

Ironically, I am now lying in a hospital bed in Chiang Mai. The morning after I arrived back home, I was stricken with severe stomach pains. I endured the pain until evening, then drove myself to the hospital. It turns out my kidney stones were on the move and the likely cause of the pain, but a CT scan used to verify that also showed a dreaded “soft tissue mass” clinging to a hard-to-reach part of my small intestine. I see biopsies and potential surgery in my future. This incomplete story must await a future blog, but perhaps I am really lucky to have not been stricken while high in the mountains. Hard to feel lucky now, though.

Surke Helipad and Lodge

My Demons Return Part 3

Sitting around in the lodge, opposite the Lukla airport, watching the thick fog roll in, I mentally prepared myself for an overnight stay here.  Lukla is not a bad place to hang out.  It is fairly low, so after the thin air, I could actually breathe pretty well here.   The food is pretty good because many of the ingredients are flown in fresh.  Its pretty clean here too, with a nice “main street” paved with schist and lined with shops and even a few bars.  Not a bad place to get stranded.

As I was sitting reading the news on my phone and enjoying the fast 4g internet here, I noticed my porter, who speaks only a few words of English, in a conversation with the lodge owner (ok that is an assumption, be he seamed like he was the boss).  Suddenly, the boss-man walked over and said “you walk down to Surke.”  Huh? What? Where? “They have helipad there, no fog.”  Oh!  “How far is it?”  I asked.  “Walk one hour” was the reply.  Well, that didn’t sound too bad.  Then I remembered that the Nepali sense of time for walking involved using worm holes and warp drives.  “Now?”  I asked.  “Yes!  Go!” was the reply.

My poor porter, who thought he was already done with me, looked chagrined.  We walked back down to the helipad where my duffle bag was waiting in hopes of the fog clearing. There stood my pilot next to his impotent helicopter looking a bit agitated, talking on his phone and still in his flight jacket and street shoes.  He clicked off the phone, said a few words to my porter, then looked at me and said “Lets go!  I go to Surke with you.”  Off he went down the paved rock stairs that paralleled the steeply-sloping runway.  “Follow me!” he called over his shoulder.  I looked at my porter; he was already rigging the tump line to my duffle bag.

Down we plunged into the mist.  Most of the trail was nicely paved with stone stairs.  Steep stairs.  Some of the stairs involved a 3 ft drop, maybe more.  We plunged down, only leveling off to bypass stone dwellings or to cross the steep ravine on steel bridges.  Down, down, down.  I had to hurry to keep up with this pilot dude walking in street shoes and his flight jacket (no bag of any kind).  To add to the sense of adventure, the pilot stopped at almost every house and asked for directions.  It was quite obvious he had never been down this path, nor had my porter. After walking about 20 minutes, the pilot called over his shoulder “only 30 minutes more!”.  Not.

Somewhere around the 50 minute mark, I stepped down a high stone riser and felt a stabbing pain in my right knee.  That’s the surgically repaired knee that had been sore since our acclimatization hike at Namche several days before.  Suddenly feeling quite unstable, I slowed down, but kept going.  What choice did I have?  My pilot cum guide disappeared down into the mist.  I used my trekking poles like crutches, hopping down the steep path on my good left leg.  After another half hour of hobbling, we found ourself at a dead end in some terraces where the trail petered out.  My guide started calling out to the small dwellings for someone to guide us onto the right path.  Finally we found a local working in his garden who pointed down the hill.  Down we went for another 15 minutes, when we finally rounded a corner to see 4 helicopters parked in the mist in front of the “Surke Helipad Lodge”.  We had descended 550 m vertically in just 1.6 km (nearly 2000 ft in a mile).  Perhaps one of the steepest paths I’ve ever seen.

The swirling fog that shrouded the helicopters made it clear that we had wasted our time, energy, and, in my case, meniscus, on this long plunge down into the gloom.  If anything, the fog was thicker here.  Then it started raining.

We sheltered in the lodge’s small dining room.  Three other American’s were huddled in the room looking exhausted,  along with 3 other pilots. The Americans comprised a young Mormon couple  (the husband was suffering from Nepal-belly) and a talkative middle-aged guy from I-can’t-remember-where (Texas maybe?).  They had evacuated via helicopter from Gorak Shep, the town just below Base Camp.  They were headed to Lukla to connect with a fixed-wing flight, but got diverted to Surke just before the fog dropped down.  We all waited futilely for a couple of hours, then I threw in the towel and got a room.  I asked the lodge’s owner for the penthouse – he gave me the room closest to the toilet ( a squatter that was impossible to use given my throbbing knee).  It was not a penthouse, but it was dry.

Following a sponge (baby wipe) bath, I shuffled back to the adjacent ding room and joined the 4 pilots, 3 Americans, and the lodge own and his family.  He had a daughter of 25, and was raising his 6-year-old niece whose mother had died just 6 months earlier during childbirth, apparently a common occurrence here where medical assistance can be a day or three walk away.  The pilots were already into there 3rd or 4th beer.  I thought about buying them all a round, then I thought – “hmm, I would rather not have a drunk or hung-over pilot in the morning”.  Didn’t slow them down at all though.  After drinking a beer, and while I waited for the chef (owners wife) to prepare meals for all these unexpected guests, I ordered up a Tongba.

Tongba is the classic alcoholic drink of eastern Nepal.  It is made from fermented millet, which is a hardy cereal grain grown in many developing countries because of its high tolerance for adverse weather conditions such as drought.  Ok, look it up on wikipedia, I had to.  The grain is fermented into a mush by adding various nasty molds, bacteria and yeast, then stored for up to 6 months in sealed jars.  When ready, the mash is added to a special wooden vessel, with an integrated straw.  Hot water is poured over the mush, and after a few minutes, the alcoholic, warm “tea” can be slurped up with the straw, which has a built in filter to prevent you from slurping up the mash.  When empty, you add more hot water to the vessel and you slurp up a second round.  In fact I got four rounds out of it (I think, I wasn’t really in any shape to count after the first two).  The taste reminded me of hot sake.  Not bad, but won’t replace a good IPA.

 

Tongba

By the time I finished the fourth round, the weather had cleared, and the stars were out.  The pilots and lodge owner (A guide himself who had climbed to the top of Mount Everest twice) had retreated out to the front yard where several stump-chairs surrounded a wood burning stove.  The lodge owner soon brought out a case of Everest Beer and announced that it was on the house.  Somehow, later that night, I stumbled back to my room and collapsed onto my cot.  Supposedly, I was to be up at 6 am for a crack-of-dawn flight down to Kathmandu.  Hopefully.

Next up: The final Chapter.

 

Drinking with my pilot buddies and hoping that they won’t be as hungover as me.