Caveat: 6 Years Cancer Free

On July 4th, 2013, I had surgery to remove a stage 3 golf-ball sized tumor from the root of my tongue, at the 국민암센터 (National Cancer Center) hospital in Goyang, Korea. The surgery also removed some lymphs from my neck. I subsequently spent 23 days in the hospital, and continued daily visits through October, undergoing radiation therapy.

Up until last year (2018), I continued living in Korea. Then, last summer, I moved back to the US, to Southeast Alaska. I feel that my life has undergone huge changes this past year – almost as huge as those wrought by the cancer itself.

Regardless, much to my surprise, I remain alive. And I keep adding things to this here blog thingy.

Here is a picture of me from July 4, 2013 (I am in the ICU after my surgery).

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Just for contrast, here is a picture of me that I took yesterday, at Craig Seaplane Base, looking out toward Wadleigh Island.

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Bear in mind July 4 is not a holiday in Korea, just a regular day – that’s how my cancerversary falls on a US holiday. Frankly, this makes the holiday much more significant to me personally than it ever was before.

Caveat: stuck inside a machine once again

As I sat, packed into a middle seat on my 5th airplane in 3 days for another seemingly interminable journey, the mp3-player on my phone played a musical track that I’d first downloaded and listened to when I was undergoing radiation treatment for cancer, in the Fall of 2013.

So of course I had some flashbacks to that point in time, as can happen with evocative music associated with specific experiences – and the actual character of the music has little to do with it… otherwise, why do I always think of Ayn Rand when I hear Arlo Guthrie’s “City of of New Orleans”? He’s a commie, and she was a hard-right libertarian type. But that song was on heavy rotation in my “life’s soundtrack” at the point in time when I was reading her book Atlas Shrugged. Thus it goes. Okay, enough of  that digression.

I posted this picture of myself, back during my cancer treatment, which recalls my experience with the radiation treatment concretely. Note the immobilizing rigid (yes, rigid) plastic mesh pinning down my head and upper body).

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Anyway, the thought that struck me so profoundly, as I sat crammed in that airplane seat, was that the radiation machine (a high-powered CT scanner, basically – the radiation therapy was technically called “X-ray computed tomography intensity modulated radiation therapy“) was more comfortable than a typical economy-class airplane seat. Given a free option to spend X number of hours in one or the other, I would definitely choose the radiation gadget.

That’s how I feel about traveling in airplanes.

Of course, there’s no denying that the real negative on the radiation treatment wasn’t the time spent in the machine, but rather the side effects: weight loss, hair loss, nausea, etc. I guess airplane seats don’t have such a long-term impact.

What I’m listening to right now.

Epsilon Minus, “Lost.” I wrote about this particular track once before, on this here blog, noting that the track appeared to be one of the few that doesn’t exist online. Obviously someone has since remedied that problem.

Caveat: 5 years and 13 days cancer free

I had a final checkup at the Cancer Center this morning. I got a CT scan with contrast medium, for upper body, head, and neck. 

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Before the scan, because of the contrast medium, I'm supposed to fast for 12 hours – so I was starving. After the scan was complete I went into the hospital's cafe and had an egg salad sandwich.

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I went to meet Dr Cho, the diagnostic oncologist, and he said everything is clear. I told him that I was leaving Korea, and he was very surprised. I think in previous visits I'd always implied that I felt like I would stay in Korea forever. We agreed that sometimes life takes us in unexpected directions. He wished me good luck, as did the staff at the radiology clinic, several of whom I know quite well.

I spent some extra time with the hospital bureaucracy so I could get a full medical record printout and DVD burned with all my info and scans. This will be helpful in the event of getting any necessary care related to my various permanent issues in the US or elsewhere. Here is my 5 year history – a half a ream of printed paper and a DVD.

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After leaving the hospital I took an hour and met a former coworker, Colin. Colin worked at Karma for a period of months a few years ago. We've sort of sporadically stayed in touch and he happens to live near the Cancer Center, so he saw I was there on facebook and suggested we meet up. We had coffee.

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Now later tonight, after academy close, we have our farewell dinner of everyone from work.

[daily log: walking, 11km]

Caveat: Still Not Dead

Maybe I'm still alive.

Today is a kind of milestone – five years ago today, I had surgery to remove my tumor.

My final check-up at the cancer hospital is coming up in about 2 weeks' time – it was originally scheduled for today, in fact, but they had to move it for some reason. After my check up, this time, the hospital releases me from "monitoring" (ie. the scheduled semi-annual CAT scans, mostly) under the assumption that any metastasis is unlikely at this point.

Thus, any cancer I get, from here forward, is presumed to be "new" in some sense, I guess. Not that it really works that way. The current understanding is that we all have cancer, all the time. But mostly, our immune systems in all their guises keep it in check. So getting sick with cancer is mostly a failure of some aspect of the immune system.

[daily log: walking, 8km; carrying heavy box to post office, 0.5km]

Caveat: undiagrammable sentiments

Yesterday I went to an actual, non-cancer-hospital dentist. That's the first time I've gone to a non-cancer-hospital dentist since I had cancer. It thus marks a milestone.

Observation: I prefer cancer hospitals to dentists.

What I'm listening to right now.

They Might Be Giants, "I Love You for Psychological Reasons."

Lyrics.

lately I've taken to vacantly making repetitive movements mistakenly seen as improvements
nearing perfection but wisely electing to shun my reflection preferring instead shoe inspection
cheese and chalk do not talk but their eyes synchronize with a secret rhythm
which is a way one could say that I love you for psychological reasons

mumbling failure in jail my extremities flail and I wail though my arms and my legs to the chair are nailed
under the table unwilling unable the torture's medieval the dream is a fable with feeble wings
why does the mouse share the house with the louse they won't say but they feel their feelings
doesn't subtract from the fact that I love you for psychological reasons
reasons I can't really go into now
reasons we should probably not get into right now

I'm ashamed to admit I'm afraid of assuming the blame for my lame abnegation of braveness and fame
brain in a jar in a car in reverse I'm rehearsing the way I'll replay how to say how to be where you are
flammable undiagrammable sentiments pass between animal beings
hard to explain but it's plain that I love you for psychological reasons

why does the mouse share the house with the louse they won't say but they feel their feelings
doesn't subtract from the fact that I love you for psychological reasons
reasons I can't really go into now
reasons we should probably not get into right now

[daily log: walking, 6.5km]

Caveat: Go. Don’t Go. Miracles.

I was at the cancer center this morning again. This was for follow-up on the radiation necrosis in my jaw and gums – a separate issue from the cancer survey and check-up.  The news here is about what I expected. I have dental problems – I know this. I don't necessarily need to follow up on them. They are annoying but not life-threatening, whereas a standard-style dental intervention (root canals, extractions) are likely to be unnecessarily deleterious and even dangerous, because of the necrosis, which inhibits natural healing in my gums and jaw bone. 

So the advice is: you should see a dentist; but don't see a dentist. 

I'm not even joking.

Anyway, life goes on. Which is pretty damn miraculous.

More later.

[daily log: walking, 11km]

Caveat: Catscan

Time for the semiannual you-know-what.

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Update to follow…

… [UPDATE 12:30 pm, KST] 

All clear – no cancer to be found. That's a good thing, right?

That contrast medium gave me a god-awful headache, this time, though. Burns all through body, and the world smells like lava.

Now… just have to deal with work.

[daily log: walking, 11km]

Caveat: 4 Years Cancer Free

Today is the fourth anniversary of my cancer surgery and second (third? fourth?) lease on life.

Coincidentally, my CT-scan and inspection checkup was scheduled for this morning, so that was appropriate. The diagnosis came back clear – Dr Cho found nothing on the fancy 3D Xrays they make. I hate the way the contrast medium makes me feel – it's like a kind of burning up from the inside, like everything is about to fly apart. But I lie still and bear with it, while they run the machine. It doesn't help that I have to fast the night before. 

So here I am.

Happy Amdependence Day ("am" [암] is Korean for cancer, and today is July 4th – US Independence Day).

[daily log: walking, 11.5km]

Caveat: oh, the nerves I’ve lost

These days, I can sometimes go for several days almost forgetting my massive cancer trauma. Yesterday was not such a day, however. I had two reminders of the changes that that experience wrought on my body.

At work, with my youngest cohort (1st – 3rd grade elementary), we were crafting robot heads with cardboard and colored paper, and thus I was wrangling cardboard with scissors. As some of you might know, I have some missing sensory nerves in my right hand – when they took out the pieces of my wrist and forearm to use for my tongue reconstruction, that included the loss of some nerves. I have full motor functionality – the motor nerves weren't touched – but I have numb spots running down my right arm to the tip of the outside of my thumb: zero sensation.

I managed to stab myself with the scissors on one of those numb areas on the back of my thumb, and simply didn't notice. One of the students noticed, when I dripped blood on her project. It was quite alarming, at least for the kids, for a moment, until I got some tissues and a band-aid.

It wasn't really a terrible gash, but it was a bit disconcerting. There was no sensation of pain at all – it's like the area is under permanent local anaesthetic. This is one of the fairly minor risks or side effects of the nerve loss, and I think, except for some small nicks while shaving (from the similar numb area on the left side of my face), it's the first time I've had that issue. Then I had it again.

Last night when I came home, I was eating and I managed to bite the inside of my mouth (also entirely numb in some parts on the left side), and drew blood, but only noticed when I tasted the salt. I suppose it's good that of all the tastes I've lost from my tongue, salt is the one I retained.

So it was a day when I deeply missed the nerves I've lost.

Which isn't to say I lost my nerve.

[daily log: walking, 6.5km]

Caveat: as if you would live forever

I wrote this exactly one year ago, as a possible blog entry. I never published it in my blog. I'm not sure why – it feels kind of important. I guess I didn't feel it was "finished" and subsequently forgot about it. Now that I'm scraping the bottom of my barrel-o'-blog-ideas, I'll go ahead and throw it down here.

Walking home last night [i.e. January 12, 2016], I was thinking about pain and my old, neglected aphorism, "Live each day as if you would live forever." That aphorism worked for me at a time when the only limit to my youthful immortality was my own undying death wish. Essentially, it served as a way to subvert that death wish. But now that there are more threats to my survival coming from outside my mind (i.e. mostly coming from my own treacherous, aging body), I find it hard to maintain the suspension of disbelief necessary to live by that aphorism. Thinking about pain, my thought has always been: if I knew, confidently, that I was immortal, I should think I would find any pain bearable, over the long run. The reason pain is unbearable is because it is a kind of ur-premonition of our mortality. This idea is related to why I always found descriptions of the traditional Christian hell unpersuasive – I always thought, well, if you're there, suffering for an eternity, wouldn't you gradually get used to it? Eventually, after the first few thousand years at the worst, you might even grow to need it – it'd be part of the routine. At worst, you'd develop a kind of asceticism toward it, a kind of zen-like "let it pass through me." To be honest, I would find the idea of actual, permanent death for sinners and eternal life for the saved much more compelling. This is known as the doctrine of conditional mortality – currently held by Seventh Day Adventists, Jehovah's Witnesses and other such peripheral Christian groups.

I was experiencing a great deal of pain last January, related to the necrosis and tooth problem which reached a kind of resolution yesterday, as the doctor pronounced my "tooth extraction point" more-or-less healed, despite the necrosis in the jaw. So this seems a very appropriate point to revisit that pain, at its nadir.

[daily log: walking, 7km]

Caveat: Well that’s surprising

I went back to the hospital this morning, this time to see the Oral Oncologist – the glorified dentist Dr Min who has been monitoring my main post-cancer side-effect, the radiation necrosis in my lower jaw. 

He inspected my mouth, and sat back, looking puzzled. I felt a bit nervous.

"Well that's surprising," he said.

I asked what. 

"It's healed quite a bit. That really normally doesn't happen with necrosis like you have."

That was encouraging.

To what can we attribute this healing? It could be the medicine he's had me on – the off-label use of the blood thinner. It could be my punctilious adherence to my oral hygiene, refusing all between-meals food and brushing diligently, which only broke down during my trip in November. Maybe it's the way I worry the hole with my toothbrush, aggressively, when I brush. Or maybe it's just luck.

Anyway, it's good news.

The day is chilly, but it didn't snow last night, despite the forecast. So far is hasn't snowed at all, this winter. That's kind of boring.

[daily log: walking, 12km]

Caveat: A world famous, full service resort

Located in historic yet modern Goyang City, my lifetime membership card brings me so many benefits:

– Lots of challenging paperwork

– Countless gratifying interactions with a multilingual, efficient staff

– Mysterious injections

– Laconic lifestyle consultations

– Photons, photons, photons!

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Update: I got my follow-up right away, as I finished the CT fast (checking in early is generally a great idea). Dr Cho says I seem pretty healthy. Given I just survived a really horrible 2-month long flu thing, that's nice feedback. Nothing disturbing in the scans.

[daily log: walking, 12km]

Caveat: I’m sorry, it turns out you were given the placebo

I consider myself an advocate of evidence-based medicine. Generally, I have little patience for people who advocate for unproven medical approaches (or worse, "alternative medicines" that have been specifically proven in repeated studies to be useless). I am a regular reader of science-based medicine blogs such as the excellent (if often monotonous and occasionally strident) sciencebasedmedicine.org.

In my role as cancer survivor, I would say I have been subjected to a greater number of these kinds of advocacies than the average person, too.

Nevertheless, any kind of advocacy – even the advocacy for evidence-based medicine – can be taken too far.  The excessive push for the "gold-standard" – randomized controlled trials - in every type of health-focused intervention can certainly be carried too far. I ran across this excellent, short satire that appears, "played straight," at the British Medical Journal website. Here is a sampling.

Abstract

Objectives: To determine whether parachutes are effective in preventing major trauma related to gravitational challenge.

Design: Systematic review of randomised controlled trials.

Data sources: Medline, Web of Science, Embase, and the Cochrane Library databases; appropriate internet sites and citation lists.

Study selection: Studies showing the effects of using a parachute during free fall.

Main outcome measure: Death or major trauma, defined as an injury severity score > 15.

Results: We were unable to identify any randomised controlled trials of parachute intervention.

Conclusions: As with many interventions intended to prevent ill health, the effectiveness of parachutes has not been subjected to rigorous evaluation by using randomised controlled trials. Advocates of evidence based medicine have criticised the adoption of interventions evaluated by using only observational data. We think that everyone might benefit if the most radical protagonists of evidence based medicine organised and participated in a double blind, randomised, placebo controlled, crossover trial of the parachute.

I like the bit about "trauma related to gravitational challenge."

Addendum: Actually, before someone complains, I think I should clarify that I acknowledge at least a limited understanding that there is an important technical difference between the concepts of "science-based medicine" and "evidence-based medicine," and that, in fact, this satire is essentially a criticism of the latter from the perspective of the former. 

[daily log: walking, 7km]

Caveat: to “normal” dentistry

Yesterday was a very long day. 

I got up earlyish and had to go to the hospital. In some ways, it was a gratifying visit – it was, finally, the "normal" dental care appointment I've been having to put off for nearly a year due to the radiation necrosis issues in my mouth. I went to the oral oncology clinic at my beloved cancer center, but attached to that clinic is a little basic dental clinic. Somewhat to my surprise, the friendly and utterly Englishless receptionist, with whom I have a pretty good relationship now and who speaks to me in a very patient Korean, donned a mask and gloves and transmogrified into a competent dental hygienist. I had no idea.

I got a simple scaling and cleaning done, and even an annoying lecture about needing to floss more, which was somehow more bearable since it was in Korean. It was all standard dentist stuff. It was weirdly reassuring, this flight into something more normal. Mostly, it was relatively painless, too.

After that, I had to go to the store. My window fan broke, so I needed a replacement. It's hot, sticky summer – some kind of fan is a necessity for when I can't stand running the air conditioning. 

Then after that I had a long day at work. Many classes, many essays to correct. I was quite exhausted last night – more than 12 hours fully "on" is more than what I can usually handle. At least today my morning is lazy.

[daily log: walking, 6.5km]

Caveat: 소아청소년암센터 앞에

I am back at the hospital for my follow-up on the diplostome aspect (ie. the necrotic hole in my jaw). The oral oncology clinic where I see Dr Min is directly across the corridor from pediatric oncology (소아청소년암센터). So each time I visit, I get to watch children with cancer. This can be emotionally intense: a wailing child in a fathers arms; two happy children with no hair playing; an emaciated child sleeping on a bench; a precociously grim-faced child in a wheelchair with one of those yellow IV bags that announces "chemo."

Lots of waiting, this morning. More later.

Update: The lower jaw area finally seems to be healing OK. So, that means… more dental work. How exciting. I have a new appointment for next week.

[daily log: walking, 11km]

Caveat: monsoony monday

I walked in the pouring rain to cancerland to celebrate my 3rd year as a ghost in the world. I have been perforated and await the contrast medium and high energy photon bath. More later.

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Update:

First of all, I titled this post "monsoony monday," as if unaware that it was in fact Tuesday. I'm accustomed to having my hospital appointments on Mondays or Thursdays, so I guess I had this idea as I trudged through the streams and rivulets that it was a Monday morning. That was incorrect. When I got to work, it turned out to be Tuesday, which, if I had stopped to remember yesterday, I might have figured out sooner.

Second of all, I don't have any cancer, as far as they can tell. I do have other features of advancing middle age, including some incipient proto-arthritis in my shoulder and foot.

Thirdly, Dr Cho told me that my Korean seemed to have improved. Perhaps it was just flattery. He spoke to me in Korean, which is more pleasant than his incongruous German-accented English (because of his long years in Germany): "Vee haf lookt at dee skahns, und dey look okey." I understood a few things he said.

Life goes on.

[daily log: walking, 11km]

Caveat: Three Years Cancer Free

In fact, almost eerily, I can quote nearly exactly from last year's two-year anniversary. I will repeat it almost word-for-word, then, with details updated to match the curent situation.

3rd year anniversary… knock on wood.

It feels pre-emptive to announce this, today, because tomorrow, I have my scheduled checkup at the hospital, when they will do a scan and hopefully give me the "all clear."

But today is the the official 3-year anniversary of my surgery, which was July 4th, 2013, and thus I feel like commemorating it today. I can always do a retraction if I get bad news next week – but I think I'd be feeling lousier in terms of health if I was going to get bad news. Who knows?

Last week was also the 16th anniversary of Michelle's suicide. Her ghost still visits me, but less often lately.

I don't really feel like meditating overmuch on "where I'm at," right now. I'm just plugging along. Not great, not terrible, but hanging in there.

I have moments of great enjoyment in my job. And moments of frustration, too. I have greater frustration with my unfulfilled avocations – chiefly studying Korean, my writing, my art. But that's nothing new, and there continue to be no major transformations on that front that are worth reporting or reflecting upon.

The one thing worth noting, in variance from last year: this last 6 months have been a bit more difficult than last year, because the Faustian bargain that was my radiation therapy "came back to collect," so to speak. I have been struggling with some radiation necrosis in my jaw area, creating complications for what would have been routine dental work otherwise.

Life goes on.

Happy July 4th.

[daily log: walking, 6.5km]