As mentioned the other day: I’m not dead yet, as far as I can tell.
The Fourth of July was always a kind of uninteresting holiday to me, I confess, until it became my cancerversary.
These days, I feel like my health is fine, but I’m not in the best place, psychologically. I’m struggling with a lot of inertia – as if Arthur’s glacial pace of thought and decision-making has infected me and slowed me down.
Well, I’ll just wait that out.
I wrote about it on this blog at that time. I wrote:
The doctor said: “You have cancer.” Well. No ambiguity, there.
It was stage 3 cancer of the tongue, with possible metastasis in lymphs of the neck. The metastasis on the left side of my neck was confirmed after surgery, though pre-surgery, diagnosis had been more optimistic. Anyway, lymphs were removed, along with the tumor at the base of my tongue. My tongue was reconstructed with spare parts from other parts of my body – I have a weird bioengineered transhumanist tongue.
The statistics at the time of diagnosis was about a 65% survival rate. That later dropped to around 40% survival rate, due to the additional complications during and after my procedure in the hospital. I beat those odds. I had a 9 hour surgery. I was in the hospital for almost a month. I underwent 6 weeks of radiation a few months later, which I discovered is an amazing weight-loss program. Would recommend.
I’m still alive. Presumably, cancer-free. Either that, or I’m a ghost with a very convincing schtick.
This tree was there beside a road utterly covered in slippery ice.
Driving to town and back was stressful. I had to drive very, very slowly, and even still, I spun out once. I had a dentist appointment. The dentist did some extra x-rays, in line with helping provide me some peace of mind with respect to any possible recurrence of cancer. I’ve been experiencing more pain lately – I always experience some pain in my mouth and jaw (cut nerves from cancer surgery) – but lately I’ve been feeling more. So I wanted to make sure, as I’ve been worrying about possible recurrence – call it a touch of justified hypochondria. The dentist assured me that nothing looks out of place or abnormal, and I don’t have any cavities either, which is good because of my bone-necrosis (that complicates dental work).
[daily log: walking, 3.5km; retailing, 5hr; dentist-visiting, 1hr; ice-road-driving, 2hr]
July 4th, 2013 was the day I underwent a 9-hour surgery to remove the tumor at the root of my tongue and the lymphs on the left side of my neck. It seems an odd day for a cancer surgery to Americans, but bear in mind I lived in South Korea. It was not a holiday – just a regular day. A Thursday.
I remained in the hospital for the rest of July. And in late August and through September, I underwent radiation (x-ray tomography) to further ensure I was cancer-free, but I like to celebrate July 4th as my cancerversary.
Last night I slept in my treehouse. That was the very first time I’ve done that. I mostly have waited because I have wanted to try for some modicum of bug-freeness. With my two custom-made (somewhat slapdash) screen doors installed, and my third door opening simply blocked off with plywood, I felt that I could hope that at least some portion of the bug inhabited spaces outside would leave me alone. I think some bugs still got in, but not any worse than sleeping in the attic, I don’t think.
I slept fine. The birds seem louder out there. Notably, the traffic on the road has a different “sound” than sitting in the attic with the window open, so the first few times a vehicle went by, I was disoriented as to where they were driving – it sounded like they were coming down the driveway. My position relative to the various nearby steep slopes is somewhat different, and so I guess echos and such things are arranged differently.
I could hear the sea sloshing, and around midnight, there was some wind that was rang my wind-chimes and woke me briefly.
Cancer humor:
I read weird things online, almost every day.
Today, I read an article published in 1922, predicting the future! It told me all about what life would like in 2022. So now I know! The article is here.
Like all efforts at futurism, it had its hits and misses. I like the use of the term “kinephone” – by which the author means something like television. No inkling of the universal information and communication device in each of our pockets, now. On the other hand, this sentence is quite perceptive and interesting (bearing mind the context – in 1922, the women’s vote was 3 years old, and very fresh in people’s minds):
…[I]t is unlikely that women will have achieved equality with men. Cautious feminists such as myself realize that things go slowly and that a brief hundred years will not wipe out the effects on women of 30,000 years of slavery.
In other news, I went to see the doctor today. For the first time since moving back to the United States in the summer of 2018, I had a doctor’s appointment of my own (as opposed to being a drag-along for Arthur’s doctors’ appointments). It was a general health checkup, not related to any specific ailment or concern. I had been told by my diagnostic oncologist, Dr Cho, in 2018, that “maybe after about 3 years” I should see a doctor as a follow-up to the cancer surgery. It’s been 3 1/2 years, but I just decided I should at least be “on record” at the local healthcare provider, and see what the doctor had to say after a short prodding / checking, along with review of relevant medical history (such as I could report – obviously he doesn’t have access to the Korean National Cancer Centers records).
The doctor took a look in my mouth, prodded my neck, asked some questions, and together we opted against a CAT scan (which I was hoping to opt against, given the hassle and cost). He seemed to agree with Dr Cho’s reported assessment from 2018: any cancer at this point will be a “new” one, as opposed to a follow-on to (metastasis of) the previous one.
So we’ll continue to assert, as I have been, that I am cancer-free, with the caveat (really, a caveat?) that biologically, none of us are truly cancer-free.
[daily log: walking, 3km; dogwalking, 3.5km]
I read weird things online, almost every day.
Today, I read an article about how cancer cells grow nanotubes and use them to suck mitochondria out of immune cells, like little teeny-tiny vampires. The article can be found here.
The “aliens within” are our body’s own cells. Sometimes they go rogue, and become cancer cells, which are definitely alien.
[daily log: walking, 1.5km]
This morning, there was a lot of ice on the windshield of the car, which needed to be scraped off before I could proceed down the Port Saint Nicholas Expressway to work.
I reached for my oft-used but utterly improvisational ice-scraper, which sits in the center console of the car. My ice-scraper: my Korean National Cancer Center ID card.
Unfortunately, it snapped.
You might think it’s weird that I have used this as my ice-scraper for 3 years. But I have. It’s because shortly after arriving here, when I was first confronted with some ice on the windshield, I’d gone to use the one that Arthur had in the car, only to find it didn’t work well at all.
So I thought: oh, well, a credit card type object works well. I’d reached in my wallet, pulled that ID card out, and continued, to myself: Well, I’m not going to be needing this, anymore, right?
So it became my windshield ice-scraper. And lasted for 3 years of heavy use, stored in the center console of the Chevy Tahoe.
Anyway, that ID card served me well for 5 years in helping me clear bureaucratic hurdles at the cancer center, during my many visits from my first check-in in June, 2013 until my last CT and MRI scan prior to departure in July, 2018. Counting the radiation period and the “bone necrosis / dental disaster” period, probably it served for 50+ visits, total. And then it served me for 3 more years as a sturdy and reliable ice scraper. And now it shall retire.
In a year largely defined by hypochondria, I remained cancer-free. My surgery to remove my tumor and lymph for my stage-3 cancer was on July 4th, 2013. I remain independent.
My mother has been tentatively diagnosed with lung cancer. It’s tentative because she is stubbornly refusing any more tests, at this point – as is her right and as is in line with her long-declared philosophy about this type of thing. She’s also had a coronary occlusion, which is a kind of proto heart attack, as I understand it. My speculation is that the occlusion was brought on by the severity of her coughing fits. Information is scarce and third-hand, so I say none of this with any confidence. [UPDATE: This paragraph’s last sentence is proving appropriate. The current, revised diagnosis has taken lung cancer off the table. The conditions are still serious – the heart occlusion, lung problem (emphysema, now). But the “end-of-life” tone of what follows is now seeming a bit premature. None of that negates the emotional turmoil discussed below. And the frustrating interactions I’ve had with others are if anything made more frustrating by having been, to some degree, a “false alarm.” I’m feeling now not just humbled but vaguely ridiculous, and even more inclined to just go into hiding for a good, long while. I am tempted to simply delete this whole blog post as over-the-top and embarrassing, but I believe in transparency, and admitting error and letting mistakes stand is a part of that. So all that follows is to be taken with the understanding that it was an early reaction to a situation still in flux.]
There’s nothing in my mother’s medical history, nor in the last several years of described symptoms of various kinds, that makes the idea of lung cancer at all surprising. She’s been struggling for years with a steadily declining weight, with a persistent cough, with phlegm and chest pains – not to mention she was a smoker for 45 years. So there’s nothing shocking at all in this. Given our family’s characteristic stoicism, she’s probably allowed it to get pretty far along – just as I did, in 2012-2013, with my mouth cancer.
My mother and I have actually gotten along really well, this last decade or so. I speak to her on the phone weekly, and we have exchanged emails two or three times a week for many years. She is this blog’s most “loyal” reader – and she provides me with meaningful reactions, thoughts, and much-needed copyediting. She is possibly one of only two people about whom I can say, with confidence, that she has read every single thing I’ve published on this blog over the last 17 years – 8455 articles and counting!
My mother is an Australian citizen, and I actually have a lot of faith in the Australian healthcare system (socialized medicine!) to do the right thing – both with respect to her needs but also respecting her oft-expressed wishes regarding such things as healthcare directives, living wills, and the like. She was, if anything, quite over-thorough and obsessive about end-of-life planning. I sometimes found it morbid and frustrating, in talking to her, with how often it came up. In this moment, however, I’m deeply grateful for it. Because of it, I have a high degree of clarity about her expectations, her desires, and I feel I could easily answer the question, “What would she want?” in almost any possible circumstance.
There are lots of people in her life, there in Australia, who are equally well-informed: friends, neighbors, etc. Because of this, I personally have utter confidence that, left to their own devices, the Australians would solve things and would do so entirely respecting Ann’s wishes, within the bounds of what the law and local healthcare practice demands.
What has left me frustrated, confused, even bewildered, is that I failed to mentally prepare myself for interacting with all the other people in her life. Different people have different perspectives, and they see different priorities, and I’m left confused and feeling helpless because, despite being psychologically prepared for what is happening to my mother, I am unprepared for how other people will handle it and react – to me, to my thoughts, to my desire to step in and “manage” things in some moments, or to my reluctance to do the same, in some other moments. I can manage my feelings, I can predict my mother’s feelings, but all these other people are muddling the picture.
So I’m not handling this as well as I could be. If these other people weren’t in the picture, I could feel utterly at ease with my mother’s situation and with the choices she’s made and where that puts us, now. But… with these other people, suddenly I feel very anxious, unable to cope with balancing different points of view, more than once on the verge of a frustrated retreat into non-communication.
I know this sounds terrible, but I’m actually grateful that, due to Covid, no one in North America will be going over there. Australia remains completely locked down – an island continent is easy to do that for. I feel like if one or more of us family members showed up, it would leave the Australians worried about offending someone, and they’d retreat and wait for one of her family to act, and then things might get messed up, because the North Americans would be unfamiliar with the legal environment and Australian healthcare system.
I am at peace with the interactions I’ve had with my mother. Hopefully, if things go according to her plan, she’ll be allowed to go back home to “die in peace”, with minimal palliative and/or support care of some kind. Her home is in an isolated location, but there do exist agencies in Australia that will take on that role, if asked. Her friends and neighbors, there, are well-informed as to her wishes and competent to make these things happen. And hopefully I’ll get to interact with her some more, once she’s out of the hospital, via phone or skype or email. We’ll see.
Arthur has some incipient deafness, but he’s somewhat in denial about it. It makes it hard to tell him things – it feels as if everything ends up being repeated. But it doesn’t help that he constantly has his audiobooks running (I suppose he likes those because he can plug in the ear buds and turn up the volume, which allows him to feel like he hears things just fine?). So there are attentional issues. But above and beyond even that, even when he does pay attention and he does understand what I’ve said, I struggle with the frustrating fact that he doesn’t seem care what I have to say. He will regularly interrupt me in the middle of an explanation with a non sequitur, and he will outright argue with or reject any advice that runs counter to his preconceived way that something must be done. Several times a day, I mutter to myself “I should just shut up.”
I have lately found myself intensely fantasizing that my cancer surgery had left me unable to talk – this had had a very high chance of being literally true, and I miraculously beat the odds in the fact that I regained my full, unimpaired ability to talk. It feels like it would be easier, and I wouldn’t have the temptation to communicate when it is so utterly pointless and frustrating to try.
I mostly talk to the world around me – the plants, birds, trees, rocks. They listen.
[daily log: walking, 2km]
To the extent than anyone is cancer free, I remain so, seven years after my 2013 surgery. Given an immunological understanding of the nature of cancer, I think most people have cancer most of the time, but the normal functioning of the immune system keeps it at bay. Perhaps all these years, I’d have been more correct to say that I was “tumor free.”
Yay immune system.
The doctors said that I might regain some nerve-endings over time. They do grow back, sometimes.
Many of you know that I lost 90% or so of my taste buds, with my cancer surgery and tongue reconstruction. For these past years, the main taste I can experience has been “salt.” The others are almost non-existent. It doesn’t quite impair my ability to enjoy “taste” in the broader sense – at least half of what we think of as taste is not related to the taste buds at all but rather to things like smell and what is called “mouthfeel” – texture, I guess.
A few years ago I suddenly regained feeling on the back of my hand where it had been lost when they extracted nerve and muscle tissue for my surgery. Those nerves grew back.
Recently, over the past few months, everything I eat has begun tasting bitter. I don’t think I’ve suddenly become a bad cook for myself. I think what’s more likely is that some of the “bitter” taste buds in my tongue have somehow reactivated. And so things are tasting bitter.
I see karmic irony in this, given I’ve been in an emotionally bitter state since the disappointing news about my residency status with respect to the University of Alaska’s teacher certification program. Which bitterness drives the other?
Perhaps I’ll mull the question over a nice bitter cup of coffee.
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).
Just for contrast, here is a picture of me that I took yesterday, at Craig Seaplane Base, looking out toward Wadleigh Island.
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.
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).
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.
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.
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.
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.
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.
Now later tonight, after academy close, we have our farewell dinner of everyone from work.
[daily log: walking, 11km]
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]
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]
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]
ㅁ The doctor's office was still the same. "I don't see anything," he said, looking at the CT scan, and pushing on the mouse. I felt the tension rush out of me. I could breathe. He smiled. Good.
– a nonnet.
Time for the semiannual you-know-what.
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]
(Poem #345 on new numbering scheme)
When anger surges into that small spot below my chin, I stop to think that that's the locus, coincidentally where a cancer grew in my throat, so I ask, "Is that what happens when I swallow it?"
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]
Here I go. Exciting as usual.
Injected inspected detected and hopefully rejected, with debt owed to Arlo Guthrie.
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]
(Poem #210 on new numbering scheme)
My friend, he said, "It's no big deal," to me, with wise élan. I went into my surgery. "Well, life is nothing, man."
– a quatrain in ballad meter, about another time.
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]
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]
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!
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]
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.
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]
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]
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]
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.
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]
