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]
Category: Cancer
Caveat: a luminous spring morning visit to the purifying land of the condemned and dying
…at the hospital for a check-up… update later.
Update, a few hours later: In fact, I'm not sure that the luminosity is consequent to or despite the patina of yellow dust in the sky. Anyway, the news is not so bad. The doctor lauded my epithelials – high praise from an oral oncologist. Things are finally growing back, I guess, and perhaps we can attribute this to the medication regime. So we renewed the prescription, and will tackle some of the less pressing problems in the dental regime, next visit.
Here is another picture from my walk to the hospital. There were little pink lanterns hung from the trees – decorations for the upcoming Buddhamas.
[daily log: walking, 11km]
Caveat: Happyfun Hospitaltime
I went to the hospital this morning, for one of my check-ups. I saw a new doctor – Dr Min, an oral cancer and post-op oral specialist (sort of a "cancer dentist"). His English is quite good – which sometimes is not such a good thing. You see, doctors have a tendency to digress on "worst-case scenarios." This is not information I really can use, and it creates a lot of anxiety for me.
The news is not entirely bad. I guess there has been some slow closure of the exposed bone at the back of my lower jaw, but he's quite concerned over just how slow. Mostly, it didn't feel positive. "It could open up again," he mused. Hygiene will remain an ongoing problem. There are some other "lesions" too. No reason for biopsy at this point, given the periodic CT scans, but something we should keep an eye on.
Dr Min has given me a prescription of a medication which "might" help accelerate the recovery of healthy flesh in the affected area. This use of the drug, called pentoxifylline (under brand name 페렌탈 in Korea), seems to be "off-label," but the doctor suggested that in my unsual case it could help, since the consequences of the necrosis in my mouth are similar to the "peripheral artery" problems for which the medication is normally indicated – specifically, the scary-sounding gangrene.
With respect to neuropathic pain (i.e. "ghost pain" related to severed nerves in my mouth and tongue), he was less helpful. He said in most cases, unless it is incapacitating, the best approach is to simply "endure" it. Most non-opioid painkillers aren't useful (which I already knew), and opioids, of course, have other issues.
I certainly am not feeling particularly positive. Lately, I have felt like the quality of my teaching is declining, I feel uncreative in my my creative pursuits (writing or art), and of course I continue to reliably make zero net progress on my Korean ability.
Last night, coming back on the subway from my effort to be social and active in Seoul yesterday, I just felt tired and frustrated. I had a weird epiphanic insight, as I sat watching the people around me. One reason I used to enjoy traveling is that I have always enjoyed "people-watching." One reason that I don't seem to enjoy traveling any more is that I find people-watching to be a much less positive experience. Instead, it has become a kind of burden. It's not that I've lost my interest in and curiosity about those around me. Rather, it seems that the problem is that this curiosity and interest is now tempered by a kind of simmering background jealousy. That is not a becoming emotion, I realize. Perhaps it is not wise for me to confess it, here. But it's a real thing, definitely – I have this sort of anger or frustration at the fact that most other people seem to lead these relatively (relatively) carefree existences, without looming health issues or limited horizons of the possible. I feel that I am at risk of becoming a bitter old man. That is not a desirable outcome.
It's easy for me to find optimism about humanity, but harder to find it about myself.
[daily log: walking, 10.5km]
Caveat: 4.2 million bananas’ worth of radiation
Sometimes I look at the online comic xkcd. It's quite nerdy, and sometimes the author crosses over from funny to informative. He posted a radiation dosage chart that I thought was interesting – given my own brush with radiation. It was particularly notable that, in terms of ionizing radiation (i.e. the kind that is associated with cell mutations and necrosis), a banana puts out more of that kind of radiation than a cellphone.
Apparently, a banana puts out about 0.1 µSv of ionizing radiation. If my math is correct, with my 3-monthly CT scans, I'm getting about 80,000 bananas' worth of radiation per year. I'm not sure what the dosage was of my radiation treatment, but at minimum it was the equivalent of about 30 full CT scans, which would amount to 210 mSv, or 4,200,000 bananas. Given I have a (mild) banana allergy, I think the radiation was a better deal.
Notes for Korean (finding meaning)
- 외방 = "upstate" – the parts of Korea outside of Seoul
- 버팀목 = one of those wooden supports attached to trees to hold them up or force them to grow in a certain direction
- 미륵 = Maitreya
- 돌무덤 = a cairn, a grave
- 육군 = land army (as opposed to navy)
- 해군 = navy
- 공군 = air force
- 중위 = army first lieutenant
- 대위 = army captain
- 대령 = army colonel
- -기는 하다 (긴 하다) = a "concessive" verb phrase ending, perhaps "… although …" or "… admittedly …"
[daily log: walking, 6km]
Caveat: Obligatory hospital waiting room blog post
I saw snowy trees and fields while walking past the park. More later.
Update, a few hours later: I gained a clearer understanding why it is they seem to be procrastinating on doing further surgical work. The issue is that to dig down deeper in that area puts my right sublingual nerve at risk. This is a really big issue, because I lost most of the functionality of my left sublingual nerve during the cancer surgery. So my tongue has been operating all this time on the right nerve only. That's one thing the doctors mean when they say my tongue is asymmetric. So the one thing they really don't want to do is mess around with the right one. So anyway. They looked there, they said that some bone was showing (which somehow implies it's necrotic?), but they decided to continue to "wait and see." I'll go back next month.
[daily log: walking, 11.5km]
Caveat: . . . waiting is the hardest part
I awoke very early so I could have time to face my day before heading off to the hospital. I walked into the rising sun feeling my normal mix of apprehension and the weird, uncharacteristic optimism that I only seem capable of experiencing when facing imminent discomfort and adversity.
Now I sit waiting among the near-ghosts and their attendants and hangers-on, on the utterly familiar east wing, 2nd floor of the superfun cancerland theme park.
Sometimes, waiting is the hardest part.
Several hours later – update…
Good news: No more necrotic bone presented.
Bad news: 3 weeks after the surgery, there has been almost no healing. This is due to necrotic soft tissue in the same area. Basically, I have big hole in the back of my mouth where they took out the dead tooth and bone. This is exactly why this procedure couldn't be done by a regular dentist. It requires monitoring and maintenance. Low grade infection is inevitable. Impact: eating will remain problematic, and mouth hygiene is critical and remains tedious. "Come back in 2 weeks, we'll decide what to do next."
[daily log: walking, 11.5km]
Caveat: Bone-Scraping
I went to the hospital this morning, and in typical Korean healthcare fashion, things moved fast.
I had a minor outpatient surgery. I guess "minor" in the sense that it was outpatient, only about 30 minutes long, and not life-threatening in any way. But it was damn painful.
A molar was extracted, and some necrotic bone (bone dead or damaged by the radiation 2 years ago) was scraped away on my lower right jaw. It all seemed to be a very "brute force" affair – inject some local anaesthetic, then rip open the gum and yank and pull and scrape and grind, but the doctor seemed optimistic as it concluded. I have some stitches in my mouth, and a command to rest and avoid talking for the day – so I've been granted a day off from work. I think Helen and others can fill in for me – Thursday isn't too difficult a day, schedule-wise.
Curt was at the hospital with me, which was nice because after I couldn't talk, he helped interpret my needs as we went through scheduling the follow-up. I am indeed grateful for his friendship, despite our sometimes locking horns at work.
After it all, I walked home. I feel it helps to do this after time at the hospital – it helps me feel grounded in the world. The cold (about -8 C, 17 F) felt weirdly good on my numb face – temporarily numb on the right side, in addition to the now thoroughly accustomed left side, permanently numb since my surgery.
The anaesthetic is wearing off and the pain is quite intense. I am watching TV rather mindlessly, and contemplating what and how I'm going to eat… I should eat.
There will be a follow-up next week to remove the stitches and check for infection, and then after that they may need to scrape more bone and after that they will definitely need to install a collagen "plug" – since my bone isn't capable of normal healing. There is also some concern about my jaw bone being fragile in the wake of this. I'm not sure what impact that will have.
More later.
[daily log: walking, 4 km]
Caveat: On necrosis and dentistry
I went to see the dental surgery specialist this morning, per the Cancer Hospital's referral. The outcome of this consultation left me feeling a bit frustrated, but anyway I have a better understanding of the issues.
The current underlying issue is really a simple dental problem. I have a cavity in a lower right molar, which probably had already started when I had my surgery 2 years ago. It was essentially benign until recently, meaning it was causing me no discomfort and I really didn't feel anything amiss. But a cavity, in the wake of radiation treatment, is not a simple cavity – the tooth is dead, because of the radiation. So the cavity gets to flourish unimpeded – it owns the tooth.
Now that the cavity is causing me pain and has grown, the molar needs to be extracted. Without the cancer-related issues, this, too, would be straightforward – contemporary dentistry is quite good at this kind of thing, and does it without complication all the time. However, because of the radiation necrosis – not just in the tooth but in my lower jaw – suddenly a simple dental extraction is a big deal. The reason is that, under normal circumstances, after an extraction the flesh and bone have a high capacity to heal and repair the damage. However, with the necrosis, there is a substantial risk that the damage done by the extraction will simply never heal. I will be left with a permanent gaping wound in my mouth, which either has to be managed or has to be artificially repaired somehow with additional surgeries.
So what the dentists are afraid of are the complications after the extraction. The simple extraction becomes a medical issue that requires ongoing monitoring and management.
Basically, the dental surgeon said to me, politely, that he didn't want to do this extraction, because of these complication risks. Hence my feeling of frustration. He said that it was likely something that should be done, perhaps as inpatient, at the cancer center. The cancer center had referred me to the dental surgeon because they wanted avoid that, but this surgeon's answer is, it can't be avoided.
I will return to the Cancer Center on Monday.
The dental consultation was actually a bit painful, too. To take the various xrays and poke at the various parts, they needed me to do various things with my tongue – think about how often your dentist tells you to "move your tongue up," "move your tongue down," etc. But my tongue is not a normal tongue – I don't have full control over it – it's partly disabled. So the dentist and her assistant, after I'd made some frustrating attempts, was compelled to reach in and pull my tongue here, push my tongue there. It hurt.
This is why I had been dreading to see the dentist, and avoiding it. And now I suffer consequences… the karma of unright action.
This morning, going to see the dentist, I had to take the subway to Hwajeong, a neighborhood in the "other part" of Goyang City, closer to Seoul. Goyang geographically is divided into two halves – a newer, Western half (called Ilsan) and the older, Eastern half. Between, there is still open farmland, preserved, I guess, by zoning laws mandating a kind of greenbelt around Seoul (which is to say, Ilsan is outside the belt, while old Goyang is inside it). The subway goes across the greenbelt above grade rather than underground, so it's quite nice sometimes to flash through the rural district on the short trip from one side of the city to the other.
This morning, looking out the windows of the train, the fields were covered by the light dusting of snow we'd received, unforecast, yesterday, and everything glittered white and clean. A Siberian cold had settled over the landscape, and wisps of steam rose from the rampart of apartment blocks on the horizon. This type of weather, combined with the rural vista, inevitably conjures visceral memories of my year in Korea while in the US Army – I spent a lot of time in bitterly cold rural Korean landscapes while in the Army.
I don't really feel nostalgic. I just end up feeling sad – about lost opportunities, about unrecoverable mistakes, about my own moribundity.
[daily log: walking, 8km]
Caveat: It’s not all good news
On Tuesday, I got good news – I continue to be cancer-free. Given the typical pattern of my type of cancer, this means, statistically, that I seem to have beaten the odds, since metastases after 2 years are uncommon.
Unfortunately, there is also some bad news. I returned to the hospital this morning for a follow-up. To be honest, I didn't exactly understand what the follow-up was about, when they gave me the appointment on Tuesday. Given my linguistic limitations, sometimes I don't understand everything my various healthcare providers are telling me, since although my primary oncologist and primary diagnostician both have excellent English, many of the other staff I need to interact with don't. I just go with the flow, and try to go where they say and do as they ask, trusting that they know what they're doing.
So I went to the follow-up, at Oral Oncology (which seems more like a dental clinic than a cancer clinic). Although I am cancer-free, I do have an issue: radiation necrosis in my lower jaw and teeth. Some of the living tissue in my lower jaw and inside my teeth has been damaged or is in the process of dying due to the radiation treatment I completed 2 years ago. This is part of the faustian bargain that is implicit in contemporary cancer treatment regimens. Because of the location, it also seems to occupy a kind of grey area between dentistry and oral surgery, so now I have to spend some time with a dental specialist, I guess. I have a referral.
This is not at all life-threatening, as I understand it. However, it has the potential to substantially impact quality of life, both due to issues with chronic pain as well as further damaging my abitlity to eat normally. I suppose, in fact, it's more than "potential" – it seems already to be having some impact, otherwise I wouldn't have noticed and complained about it to my doctors.
I feel depressed and frustrated, at the moment – partly because I didn't completely understand the referral process, and so I'm going to have to rely on Korean-speaking friends to help me sort out what my next step is, and I hate relying on other people, especially in a way that hammers home my failure to learn Korean adequately.
More later.
[daily log: walking, 10km]
Caveat: At the place where the machines and their acolytes extend human life
It has become a bit of a tradition for me to post to my blog from the waiting room at the hospital. I guess I do it partly because sitting in the hospital waiting room is boring, but mostly it’s to remind myself of the time when posting to my blog from my phone was the only way I could do it, because I was in the hospital without a normal internet-connected computer.
I am at the hospital for one of my periodic follow-ups, where they do a CAT scan and look around, to make sure I don’t have any metastasis.
Always here I get a strange feeling of stress-mediated calmness. I think the place evokes that paradoxical mix as it is strongly associated with such intense memories, traumatic but ultimately life affirming. The mental state is similar to something I feel in a temple or church or sacred-seeming place of natural beauty. . . a feeling of sublimity tempered by pathos.
I lie down inside the machine and let the acolytes read the signs under my skin.
Update (a few hours later): The signs having been read, the acolytes spoke in short obliquities of long life and long odds overcome. My earth-residency visa has been extended.
[daily log: walking, 10.5km]
Caveat: My mortality always on the tip of my tongue
I struggle with having to bear my mortality so close to the surface. These periodic checkup scans, which serve to remind me of the precariousness of my health, and of the sheer luck of it, don't help. It's more basic than that, though. In fact, my tongue reminds me at every single moment, because I can feel it, and it is still alien – hacked and transformed and handicapped and so clearly not really my tongue.
Think about how we use our tongues constantly to probe the insides of our mouths. It's unconscious, and reflexive, and evolutionarily ancient. Watch a baby, some time, discovering the world through her tongue. Watch a rodent cleaning its fur. Watch a snake tasting the air.
Now imagine that every time you go to touch that familiar spot behind your teeth, or steer some piece of food you're chewing, or go to speak a consonant, you use a tongue which requires focus and conscious effort because it's not the same tongue that you first learned those skills with.
I cannot ever forget that I have been transformed, and that I'm a survivor of a traumatic experience.
I would prefer to forget.
Anyway, my bad feeling last night was not confirmed today. The CT scans have spoken. I continue to have a clean bill of health, from the oncologists' perspective. That's good.
What am I supposed to be doing with this time against fate which I've bought?
[daily log: walking, 9.5 km]
Caveat: Words
Today started OK. I had a conversation on the phone with my mother that was fairly upbeat, and then I went to the hospital for my scheduled scan.
The hospital was "locked down" because of the MERS panic. There were workers scanning people who wanted in, and asking questions and filling out surveys. It was frustrating because I got held back while they found someone who could ask me questions in English, after I failed to understand a question put to me in Korean.
Once in, I tried to check in for my appointment early (which I always do – I always go early because it makes the appointments go faster, in my experience), and they wouldn't let me. So I had to wait.
The scan was OK, though I had two more frustrating moments with my Korean.
What's wrong with me, anyway, that I still can't speak this language? I felt like a failure.
I went to work, and got there just in time to teach my 6 classes straight on my new Monday schedule.
I got to hear about parents having complained that my classes were too difficult last week. I argued with my boss Helen about whether memorizing words with their translations is really a solution to kids not understanding material in one of my classes. My position is that, well, not really. Then again, given my own lack of success in learning Korean, who am I to talk? I felt gloomy about that.
I wasn't well-prepared because I didn't come early to prepare my classes, having been at the hospital instead.
I left work depressed. Very depressed – with a generally bad feeling about where I'm at and what I'm doing (and/or failing to do).
Tomorrow, I go back to find out my diagnosis (if any). Just at the moment, I feel like my luck's given out, but we shall see.
[daily log: walking, 7.5 km]
Caveat: Two Years Cancer Free
… knock on wood.
It feels pre-emptive to announce this, today, because this coming Monday, 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 2-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 15th anniversary of Michelle's suicide. Her ghost still visits me, but not that often.
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 have been no major transformations on that front that are worth reporting or reflecting upon.
Life goes on.
Happy July 4th.
[daily log: walking, 6 km]
Caveat: Morbid Piles of Links
I have a morbid habit, which I sometimes indulge. I read the blogs of people with cancer.
These abound on the internet. More often than not, I come across pointers to such blogs in other places, in other contexts, but I will take a moment to add the pointer to a little pile (file) of links I have of "cancer blogs." Then, sometimes, when the mood strikes or I'm feeling mortal or hypochondriac or unlucky, I will read one.
Many people seem to take the decision to start blog, upon learning they have cancer.
I was different only in that I long ago started my blog as a coping mechanism to deal with different, unrelated issues (stepping away from my hermetic life and trying to document my efforts to jump-start my career).
Perhaps I'm a bit different too, in that, since I was blogging before the cancer, now that I'm basically past it successfully (fingers crossed and knock on wood and all that), I continue blogging reliably – many "cancer" blogs "die" not just when their authors die, but also when their authors fail to die, but instead just get on with life.
Recently a blog I've visited a few times (a linguist and thus someone whose non-cancer writings also had at least some appeal for me) announced the death of its author after a fairly short (6 month) battle.
There, now I'm not feeling unlucky anymore.
What I'm listening to right now.
Andy Williams, "House of Bamboo."
Lyrics.
Number fifty-four,
The house with the bamboo door,
Bamboo roof and bamboo walls,
They've even got a bamboo floor!
You must get to know – Soho Joe,
He runs an Expresso,
Called the House of Bamboo.
It's a made of sticks.
Sticks and bricks,
But you can get your kicks
In the house of bamboo.
In this casino, you can drink a chino,
And it's gotcha swingin' to the cha cha
Dance the bolero in a sombrero.
Shake – like a snake!
You wanna drop in when the cats are hoppin'.
Let your two feet move a to the big beat;
Pick yourself a kitten and listen to a platter
That rocks – the juke-box!
I'm a telling you, when you're blue,
Well there's a lot to do
In the House Of Bamboo.
You must get to know – Soho Joe,
He runs an Expresso,
Called the House of Bamboo.
In this casino, you can drink a chino,
Let your two feet move-a to the big beat;
Pick yourself a kitten and listen to a platter
That rocks
I'm a telling you, when you're blue,
Well there's a lot to do
In the House Of Bamboo.
Number fifty-four,
The house with the bamboo door,
Bamboo roof and bamboo walls,
They've even got a bamboo floor!
In the House Of Bamboo.
[daily log: walking, 6 km]
Caveat: Olive Therapy
As many know, I still have some issues eating "normally." Aside from the fact that I don't have much sense of taste, which means that food just isn't as interesting as it used to be, I also have some issues around the fact that major portions of my tongue lack a sense of touch – it's permanently numb, like it will get after a visit to the dentist when local anaesthetic is used.
This creates eating problems because it's surprising the extent to which we rely on our tongues to manipulate food in our mouths during the process of chewing and moving the food to the back of our mouths in preparation to swallow it. I can't always do this as easily or as successfully as I might hope. That is why my favorite foods now are the sort of soupy or sloppy things, pasta with sauces, soups, porridge, etc., that are "swallowable" without too much tongue movement.
A month or so ago I bought a can of olives, because I like to chop them into my pastas sometimes. But I made a mistake – they were unpitted olives. I nearly threw them out, but in fact, I do like olives, and I can still enjoy the bitter/salty flavor of them somewhat.
So I decided to try eating them.
Things with seeds or pits or bones that end up in my mouth are things I normally dread – if you think about the gymnastics you do with your tongue when you find a watermelon seed or a fish bone, you will understand what I mean.
But sitting at home, I would nibble around my olives and eventually I got brave and, looking at it as a kind of physical therapy, I would try to eat the olive and spit out the pit, in the "normal" way.
It's kind of like forcing myself to do exercise that is unpleasant but hopefully good for me. I have this idea that I can build up my tongue coordination through diligence and practice.
So I sit at my desk in the late mornings, with a bowl of unpitted olives, and exercise my tongue.
It gets sore, on the tip, where there are still some nerve endings (which is what the doctors so miraculously saved, and which is why I am not handicapped in talking, for the most part, despite the loss of nerves in most of my tongue).
[daily log: chewing, 6 olives]
Caveat: Looking More Normal
I did my CT scan, this morning. It's kind of a routine, now, as I've mentioned, but I never enjoy the injection of the contrast medium. It's not painful, per se, but I get this kind of semi-nauseated feeling of imminent-yet-unrealized incontenence, and a kind of burning feeling flowing up and down my body to the rhythm of my heart's beating. It's disturbing and uncomfortable, and it always makes me imagine I'm doing heroin, though I never have done that.
After the CT scan, I saw the radiation guy, Dr. Jo – the german-accented Korean.
He peered at my scans on his computer screens, and poked around my mouth a bit. "It's looking more normal," he assessed. Nothing bad, at all. It's rather comforting, actually, in an understated way.
Then I had a full day of teaching. Now I have a headache, but I guess it's just tiredness and the hangover of the medical stuff this morning.
[daily log: walking, 11 km]
Caveat: Another fine threemonthly visit to room 12
I came to the hospital to get my heavy metals injection and check up.
Caveat: Meditations on tonguelessness, and the end of the world
I've written before about what I call my "meta hypochondria" – that nagging suspicion that I have some grave new illness, but which I then dismiss by turning my worry to the possibility that I'm suffering from some unreasonable, hypochondriac delusion instead. Since my cancer, this has become even more multi-layered and frustrating.
With any new persistent ache or twinge or discomfort, I immediately begin to think: "Is that it? Is that the metastasis I've worried about? Is that some new cancer growing in my mouth or chest or wherever it is I'm feeling discomfort?" Then I think, well, that's unreasonable, to worry about that – I've got my check-ups, every three months, with CT-scans and all that, and they would tell me, if something was going on. Then I waver, and think, "well, but they might miss something. It's not common for a mouth cancer to metastasize into a gut cancer, but I've had that stomachache for the last several hours – maybe this is it?"
Then I think, I'm just a hypochondriac. That's meta-hypochondria, when you think that. Especially if it turns out you're wrong, and you're not a hypochondriac, but in fact have something wrong. That's what happened to me – I put off dealing with the pain in my mouth for so long, thinking I was just being overly sensitive to some minor issue, and telling myself to stop being a hypochondriac.
The fact is, I don't have much time in my life, these days, when my mind is not swirling around some possible new health problem. I experience a lot of discomfort: not quite pain, but "almost pain" in my mouth (where my nerves were cut), in my body (who knows from what – just aches and pains of a body not well-maintained), wherever. It's a bit like having a cold sore in your mouth – you "worry it" all the time, with your tongue.
The metaphor is exceptionally apt, if somewhat inverted, because the sensations aren't exactly the same: I wonder to what extent the fact that it was my tongue that was stricken, broken, and reconstructed as a numb, dead thing… how that impacts my proprioception… I think about how babies, before any other thing, begin to experience their world through their mouths. They put things in their mouths. It's like the mouth is a place of origin, a "center" of the self-perceived body-as-body. And so, I am vulnerable to distortions in proprioception because my tongue is "missing" – from a sensations standpoint.
Tangentially (but not as unrelatedly as normal, perhaps), I ran across this video, just now.
[UPDATE 20180328: Video embed lost due to link-rot; no replacement found. Condé Nast videos website fail! Sad!]
Grim.
[daily log: walking, 4.5 km]
Caveat: placeholder
I guess my problem with infinitely delayed posts from my phone continues: I posted from my phone while I was at the hospital, and it never showed up. Rather than post it again and then have it show up 36 hours later and thus have a duplicate, this post serves as a placeholder to show I am still alive until such time as that post from my phone actually shows up. Oh… and by the way… argh.
Update: I guess that email-based post will never happen. Or, perhaps by posting it here, that guarantees it will show up immediately. I’m deeply annoyed with my blog-hosting company now, but I’m frankly too lazy to bother opening a help ticket, since they’ve never been helpful in the past. I’ll just deal with it.
Meanwhile, here is the gist of my original post from yesterday at the hospital – it wasn’t really that interesting:
Caveat: Been there done that
It becomes almost routine after so many times: a return visit to good ol’ room 12. Later I will have a consult with reassuring Dr Cho and his disconcerting German accent.
The conclusion was: “nothing there to see.” Which is to say, no evidence of any kind of metastasis. So I get to stay alive for some more time.
[daily log: walking, 7.5 km]
Caveat: simplicity is the ultimate sophistication
I went to the cancer center again this morning, to find out the result of my PET scan. The answer: "all clear." Dr Jo said I look remarkably healthy for the most part, although my continued, downward-creeping weight is of some concern. I thought I had been gaining back since my nadir at 69 kg, but my official weigh-in at the doctor's today was 73 kg, which is always a few kilos over because I'm fully dressed and carrying things, so that probably means my home scale would show me at about 71. I guess that's a little bit of a bounce-back.
Anyway, I'm doing OK. I complained about eating, some, and I complained about the "ghost sensations" in the cut nerves in my wrist and neck, but overall I think I'm doing OK – I take no meds, work 50 hours a week, and walk 30~40 km per week.
I was walking back from the cancer center over Jeongbal hill, through the park, and approaching me was a girl of only maybe 4 years of age, walking as if she were a meditating monk or thoughtful ajeossi, hands crossed behind her back and pacing carefully. I was startled, as for a moment she seemed unaccompanied. Then, around the bend in the path, her mom appeared.
The mom was wearing a tshirt. It said, in simple yellow letters on a navy background: "SIMPLICITY IS THE ULTIMATE SOPHISTICATION."
I couldn't help but grin slightly at this clever fragment of wisdom on the tshirt of the mom of the preternaturally composed child.
I continued back home.
[daily log: walking, 9.5 km]
Caveat: On Being Temporarily Radioactive
My diagnostic PET scan at the hospital was delayed due to technical issues with their gadgets. I wasn't really upset by this, but it forced me to send a message to Curt telling him I would be late to work – later than already anticipated. Fortunately, someone was able to take my missed class, and I raced to work after the scan and went straight into my 6:40 class.
"I'm radioactive," I announced. This, of course, required extensive explanation.
I explained about Fluorine-18 radiotracer-tagged glucose (fluorodeoxyglucose – basically radioactive sugar) and how it shows hotspots of metabolic activity on the scan. It probably mostly went over their heads – elementary kids in Korea only know science well if they study it in hagwon, as the public elementary schools don't seem to do a very good job with science education.
I'm not sure the kids really cared that much – they didn't find it to be as interesting as I'd thought they might – sometimes with these kind of technological / medical issues, it's hit-or-miss.
I had a terrible headache this evening, but I suspect this has more to do with the requisite pre-scan fast than because of the radioactivity or injection or any of that.
I go back tomorrow to get the result.
[daily log: walking, 7.5 km]
Caveat: Waiting Rooms in Famous Hospitals
Like old times, I am at the cancer center. I have my first-annual follow-up PET scan, a fairly involved affair, but just as always there is a lot of time to be killed sitting in waiting rooms, and so I decided to post this blog entry from my phone. as I did so often last year.
I am struck by how many nations are represented here. . . although Korea is so homogeneous, this cancer hospital is not. I have heard Chinese, something from India, French and English in the last 20 minutes.
Caveat: One Year Cancer Free
Well, it hasn’t gone perfectly. Being alive, however, means I am lucky.
I grossly underestimated my ability to meet the challenges of the long-term, despite having coped pretty remarkably well on the short term. The great challenge, frankly, has been that the centrality of eating to daily life, not just for sustenance but for socializing, has collided with the fact that eating has been rendered permanently unpleasant. Eating is a chore, now – on par with cleaning the toilet or jogging, with genuine unpleasantness being inevitable during the task, and only a residual and mostly hollow sense of accomplishment afterward.
Last night, we went to a work dinner (회식) for a coworker’s birthday, and Curt said to me – incidental to something else we were discussing – “Life is nothing.” I reminded him that exactly one year ago, on 2013-07-03, he’d said the same aphorism to me, on the eve of my surgery (and reprising previous uses of the same, vaguely Buddhist expression, such as on the date of my biopsy). It’s meant to be reassuring, and sometimes, it is.
I will summarize here the past year, just for completeness sake (and then I can point people to this blog entry for the “short version” of my cancer story).
I was diagnosed with cancer of the tongue on 2013-06-25 and things moved very fast. By the following week I was checking into Korea’s National Cancer Center (국립암센터) – possibly one of the best cancer hospitals in the world but which happens to be in my neighborhood – and I underwent a 9 hour surgery to remove the tumor from the root of my tongue on 2013-07-04. I spent three nightmarish, hallucinatory days in the ICU before finally being released out into the general ward.
My hospital stay was 23 days. I had a pretty good recovery although I had an infection that necessitated an additional “emergency” surgery to remove some badly behaved parts in my neck and tongue again.
My friends Peter and Grace and my coworkers Helen and Curt all provided immense amounts of emotional support and material support. I haven’t in any way adequately repaid any of them their kindness during this time.
My brother arrived a week or so into my hospital stay, and his help was quite useful, too – Korean hospitals expect family members to do a lot of the work done by nurse-assistant types in western hospitals.
By the time I was discharged, I was feeling quite elated, and that lasted until a week or two into my radiation treatment phase, which began in September. As the radiation treatments progressed, my brother left but stepmother visited. I was on a very limited schedule for work, and so I did a lot of daytripping around with them during that long, complicated summer. In early October, I had finished the 30 days of radiation by the time my mother came to visit, but I was also feeling much less elated and much grumpier about my health. Ultimately, it seems that the post-radiation discomforts were mostly permanent – or at the least very long-term.
I have lost a great deal of my sense of taste: especially sweetness – sweet things are kind of just bland. I have a saliva shortage in my mouth, which is the main cause of my difficulty eating – when I chew foods they turn in to dry, unswollowable blobs that my handicapped tongue is unable to push to the appropriate place in my mouth. Sometimes, I will have to shove a finger into my mouth and manually push the bolus of food to the right spot for swallowing. That’s one of the reasons why I don’t really feel comfortable eating in public, anymore. I have to be very careful or can end up with a choking fit. This problem, however, is in ironic conjunction with a horrible phlegm problem in my sinuses and throat such as I never suffered from before the surgery. I am constantly hacking up gobs of nasty gunk, despite having a dry mouth. I experience “ghost” pain sometimes in my my missing nerves in my tongue, neck, and wrist, all places where nerves were severed for the surgery. My tongue gets “sore” after talking a lot, which despite everything, is still a tendency of mine (not to mention my profession, as a language teacher).
I think I have a pretty high tolerance for pain – I almost never take pain medication but suspect that I would be a candidate based on a best guess at comparing my symptoms to those of others. It’s possible that this chronic low-grade, permanent pain (in mouth, tongue, neck, throat) has to do with my affective struggles of, especially, the last few months.
My eating difficulty has had a side effect of being a very effective diet plan. If you want to lose a lot of weight, tongue cancer is a great way to do it! It seems like I have managed to stabilize at about 70 kg. We’ll see if I can stick with that.
I have been going in on a three-monthly basis to the hospital for CT scans to make sure I’m still cancer-free. In two weeks, I’m due for my first annual scan, which will be more thorough and include a PET scan.
There are times when I feel I made a deal with the devil. I worry that my post-cancer quality-of-life wasn’t “worth it.” Mostly, however, I remain grateful to be alive, knowing that it might not have worked out that way under different circumstances.
I’m going to discontinue these “X months cancer free” blog posts and perhaps even try to avoid discussing the post-cancer aspect of my existence much, as I feel it leads me to dwell more on the negative than I should. This entry is meant to be a kind of closing entry, then. Obviously, if something “new” comes along, I’ll share it.
[daily log: walking, 5.5 km]
Caveat: 11 months cancer free
Almost a year, then.
I'm really just making this post only for completeness – I have kind of lost my desire to "celebrate" these monthiversaries. Doing so compels me overmuch to reflect – even more than I would otherwise – on how transformed some aspects of my life are, and to reflect on how in other respects my life is utterly the same. Neither reflection is flattered by the scrutiny. It might be better to just try to live life, with less reflecting upon it.
I will post next month, and then be done with this "feature" on This Here Blog Thingy™.
What I'm listening to right now.
José José, "Almohada."
[daily log: walking, 5 km]
Caveat: Half The Man
I weighed myself this morning and the number was 69 kg. That’s 152 pounds. I have not weighed this little since my early 20’s.
As I’ve commented before, as a person with a history of both anorexia and obesity (at different times), I cannot deny that I probably have somewhat chosen to go ahead and just let this eating problem turn into a permanent weight loss program. Still… I think there is coming a time when I will have to confront this situation more rationally.
I joked with someone last week that eating, nowadays, is a chore on par with cleaning my toilet. To test this, later this morning after eating a breakfast of ramen noodles (with half the spice removed to make it more bland), I knelt down and cleaned my toilet right then, thinking of this comment specifically.
Sure enough, the toilet was less unpleasant.
So there you have it.
The Jains of India have a tradition called santhara. It is a sort of slow-motion suicide-by-self-starvation – sometimes drawn out up to 12 years. The practice is in line with other ascetic practices of the Jains, whose historical predecessors were likely the ascetics referenced by Gautama Siddhartha when it is said he tried asceticism and failed it, before he ennunciated his “middle path” which became Buddhism. This type of asceticism has a sort of fatal appeal to me, and I feel as if my post-cancer-imposed eating regimen is evolving into a kind of unintentional santhara.
In any event, my peak weight of about 265 pounds isn’t quite cut in half literally, but I’m feeling that way. Half the man I used to be…
For reference, here are two interesting pictures from my archive. One picture is from near my peak weight, from February, 2005, with my friend Bob (he’s on the left) in Utrecht, Netherlands.
The second picture is from 1986, when I was 21, near my current weight, I think (or a little less even, maybe 140 pounds). It is a scan of a picture (it was in poor condition, so sorry for the poor scan) that was taken near La Libertad, El Salvador, in September, 1986.
Caveat: Teacher’s Day Ironies
Today is the day Koreans call 스승의날 [seuseunguinal], "Teacher's Day." There was even a googledoodle dedicated to it.
I received some gifts from a few students – all food… which is, arguably, a bittersweet type of gift at best given my difficulties eating.
And… I guess it's all ironic since I've been feeling like I'm decaying into a bad teacher.
The thing that has me most disturbed is that I seem to be experiencing some kind of cognitive dysfunction – I'm forgetting things a LOT, and I'm losing my flair for keeping organized. This is impacting the quality of my teaching substantially – the other day I gave the wrong lesson to a class – and Korean teenagers being Korean teenagers, the kids said nothing for almost 20 minutes – perhaps puzzled what was going on, perhaps finding it mildly entertaining, or I-don't-know-what.
I've always had something of the "absent-minded professor" in me, but this is not sustainable, and it's the primary reason I say (as I said in this blog the other day) that I don't enjoy teaching anymore – because I feel like I'm getting bad at it.
I'm constantly forgetting things, repeating myself, losing my place, worrying that I'm making a fool of myself in front of my students. The hypochondriac in me fears some kind of creeping new disability, either consequent to the radiation, for example (it's possible – cognitive difficulty is a listed possible side effect), or else some other unrelated thing (e.g. proto senility or alzheimers, etc).
[daily log: walking, 5 km]
Caveat: 10 Months Cancer Free
It was a strange day. The weather felt weirdly midwestern. I took a walk in the morning it was quite windy but already warm. Then, lacking motivation, I forgot to eat (as I often do on days off when I do not need energy and can be lazy). It is a bad habit, I know. Food is such a hassle, and when my body does not demand it, I have little interest. Oops. . . I had said no more ranting about food. Well, but. . . it is what I deal with. Actually aside from that (or because of it?), I had a very relaxing day. I have dedicated this weekend to one of my more obscure, bizarre hobbies: world-building. Basically, imagine writing only the appendices to Tolkien or Frank Herbert, without the novels. It has been a sometime hobby of mine since childhood – it is good escapism.
[daily log: walking, 3 km]
Caveat: 취중에 진담 나온다
This is an aphorism from my aphorism book.
취중에 진담 나온다
chwi.jung.e jin.dam na.on.da
drunkenness-OUTOF solemnity(truth) come-PRES
Truth comes out of a drunk man.
“Truth in wine.” This is such an important part of Korean culture, it would be difficult to overstate it, really. Several times a week one or another of my colleagues either expresses a need to get drunk or else suggests to me that doing so would solve some element of my own difficulties. When pressed, they always fall back on the concept expressed in this aphorism – that only by drinking can we express our true selves. This is because of the strength of the cultural repression in the society, I guess, that the only way to be honest with one another is through alcohol. Maybe there’s something to it – I don’t know. I don’t really judge it so negatively – I only know that I am, as I always have been, a melancholic drunk. For me, personally, a night of drinking inevitably ends in tears. Perhaps that is my core “honesty,” I don’t know. As a consequence, however, I don’t really feel that positive about it, though.
Meanwhile, I should report the results of my consult this morning. I saw both Dr Jo (radiation specialist / diagnostician) and Dr Ryu (oncologist). Dr Jo said the scans were clean, no tumors or lumps or bumps or badnesses. He did make the observation that there appeared to be “more damage and scarring” (from the radiation) in my mouth/throat than he expected. That could possibly explain some of the discomfort I continue experiencing. I talked with Dr Ryu about nerve damage and what’s called “neuropathological” pain – that is, the “ghost” pain from the cut nerves. Of course, it’s “normal” but that doesn’t really solve much. I suppose there is no solution, except to buckle down and cope.
Partly, I suppose my feeling, lately, is more of a psychological problem than a physical one. It seems that after having gone through all that, I should somehow be making more of this “new life” or “borrowed time” than I am. I nearly died. I came through it. Now, I just work and waste time… same as before. Shouldn’t I be doing some important or meaningful with this bonus round, having beat the odds, at least so far? The feeling of guilt – of “wasted chances” and blown opportunities – is very strong, these days.
Unlike my Korean friends, I don’t think a repression of self-honesty is my problem. So in alcohol there is only sorrow, not truth.
[daily log: walking, 10km]
Caveat: Remains of Spring
I had been thinking, some days ago, how dry this spring seemed to me. Promptly, it began to rain later that day, and we have been having this sort of on-and-off drizzle ever since. Very Humboldty.
I was at the hospital for a portion of the morning. I didn't get a diagnosis – I have to go back and see the diagnostician tomorrow – they were not as efficient with their scheduling as they normally are, and there was some conflict between scheduling the scans and reviewing the results. So I'll get to see Dr Jo tomorrow morning.
Meanwhile, I get to experience suspense.
Oh, and teach 6 classes today. Really… the most exhausting part of the scans is that I have to fast (not eat) for the half-day beforehand, which leaves me feeling ennervated. The contrast medium injection is uncomfortable and a little bit freaky as you experience it entering your system, but I'm pretty used to it and I can recover quickly from that particular aspect.
I slept extra hours over the weekend so that I would have some reserve of energy to plow into a full-time week of work (first full week back to the full-time schedule with the end of the middle-school 내신 [exam prep]) front-ended by this hospital visit, but I felt really tired anyway. Oh well.
Walking from the hospital to work today, straight from my appointments, I saw a tree that had discarded the vast majority of its blossoms due to the rain, I guess. These are the remains of spring. The picture doesn't really capture it very effectively – it's washed out and blandish.
[daily log: walking, 7 km]
caveat: just like old times
i am off to the hospital this morning, walking in a slow rain the same route that became rote last fall. i will have a ct scan. i feel more nervous about this one than the one in january, because my hypochondria has been in a kind of overdrive lately. i keep wondering if my remission has ended with each twinge of pain or discomfort that i feel. it could just be the nerve damage in my mouth, evolving or adapting or healing, but sometimes the sensations too greatly resemble those i associate with before my diagnosis and surgery.
Caveat: “Cancer Survivor”
I was listening to NPR this morning, as I sometimes do, streaming online.
There was an interview with author Barbara Ehrenreich, who happens to be a "cancer survivor," but it came up that Ehrenreich doesn't approve of this term. Her reasoning is clear and I found myself agreeing: the term "cancer survivor" devalues those who die. I see her point.
I was reminded of a conversation I had with Curt a few days ago. Curt used to talk a lot about Steve Jobs, as someone he admired and tried to emulate in some ways. Steve Jobs is a popular idol for entrepreneurial types, there is no doubt, and Curt was just being stereotypical in this respect.
When I said something about Jobs the other day, however, Curt announced, "I don't respect him anymore."
"Why not?" I asked.
"He died."
I was rather taken aback by this. I pointed out that he had died of cancer. Curt nodded. I asked Curt, then, "Would you no longer respect me if I died of cancer?" – a distinct possibility, given my recent travails.
Curt paused awkwardly. "Maybe," he finally answered, as if making a joke. I wasn't so certain it was entirely in jest, however. There's something to that, and it matches up with Ehrenreich's comment: by making "heroes" of the survivors we're also making a cult of success against something that is beyond our control. It's a bit like making heroes out of lottery winners – which, come to think of it, our culture does too, doesn't it?
So I hereby announce my discomfort with the term "cancer survivor." Nevertheless, I don't plan on changing the wording at left. It has some value as being a shorthand way to convey succinctly my current situation, both physical and mental.
[daily log: walking, 6.5]
Caveat: 9 Months Cancer Free
Today is the three-quarters-of-a-year-iversary of my surgery. I know that I "beat the odds" in that I have a mostly normal life: I can talk, I kept my job, etc. I have to remind myself of that when I feel so miserable and depressed, as I have, lately.
I ran across a quote from Shakespeare's Macbeth in a very unexpected place: on page 921 of my Practical Dictionary of Korean-English Buddhist Terms.
Under the term 인생 (人生 [insaeng] = life), the dictionary says:
무엇이 인생? 사전에는 "목숨을 가진 사람의 존재"라 쓰여 있다. 영국의 문호 셰익스피어의 인생관을 들어보는 것도 나쁘지 않을 것 같다.
인생이란 어설픈 형상 없는 그림자
뽐내고 안달하다 곧 사라지는
한낱 가설무대 위의 광대.
– 셰익스피어, "맥베스", 5막 5장 –
Then, the reference book being a bilingual glossary, a translation into English is provided.
Life: What is life? Let's see what Shakespeare says:
Life's but a walking shadow; a poor player,
That struts and frets his hour upon the stage,
And then heard no more.
– Shakespeare, Macbeth, V, v –
Note that the translation provided does not translate the introductory phrasing word-for-word – the Korean slightly more detailed, saying something to effect that "the dictionary says 'life' is 'existence of people who have breath of life' but England's great writer Shakespeare's summary is not bad."
I have run across other very interesting tidbits of humor and erudition in this book. I'm glad that I bought it. I'm so strange, my favorite books have always been reference books.
[daily log: walking, 5 km]
Caveat: Stinging
So tired.
As some of you know, my tongue is mostly numb since my surgery. Today, it was "stinging" – a hard-to-describe sensation that is halfway between pain and just discomfort. It's a bit like the feeling you get when your limb goes "to sleep" and then you shake it out when you shift positions. I don't know if this is a "ghost" sensation that is a consequence of the cut nerves, or some kind of restorative activity. Regardless, it's a bit … annoying.
More later.
[daily log: walking, 6.5 km]