i was doing a couple of circuits of the ward with mr cho upon waking up. i caught the sunrise. the monsoon is clearing. . . its beautiful but i know its sticky hot and humid outside.
Month: July 2013
caveat: silent verbosity
several people have wondered at my implemention of the vow of silence. i carry a pad and pen and write notes. i had to do that in the icu, too. it is my intention to publish some of those handwritten “icu diaries” if i ever go home from this hospital. meanwhile, here is a somewhat representative sample from earlier today.
caveat: photo from orbit 12
this nurse is the best nurse of all – shes a clown (in this picture shes climbing on the counter) and shes a goofball and she talks to me in the most adorable korean baby talk that i find incredibly easy to understand and she tolerates my strange korean with smiles and effort at understanding. shes a natural-born language teacher.
caveat: photo from orbit 11
this nurse has the absolute best english of anyone on the staff . . . when shes on shift i know i will never have a communication crisis, so she always calms my heart and brightens my day.
caveat: photo from orbit 10
what better way to show my okayitude than some mugging for the camera with some favorite nurses?
this nurse is the “serious one” and it was hard to get her to pose. shes good for quick, efficient results.
caveat: second surgery both more and less intense than first
it was shorter – just one hour instead of nine. no icu afterward – just some tongue and mouth rearranging.
the process. . . the feeling of starting and ending the procedure – were radically different. going into my first surgery i didnt have much awareness of pre op stuff – they put me under early. this time, i was awake and alert during most of the pre op, including long minutes in the OR. discussing and placing tubes, medicines. monitors – awake for all of it. and i knew almost half the staff – the surgical interns faces familiar behind their masks, giving dr seok a nod as he squeezed my hand, making a wan grin at dr jang. letting the anesthesiologist patter on about minnesota.
coming out was less like icu too – it was just a post op wake up room and people bustled around but rather than the intense attention received after the first surgery, this time i was mostly ignored. finally they wheeled me out and andrew was there and i returned to 10th floor ward.
dr ryu came and gave me a summary, but i missed details, still feeling fuzzy. ill have to find out later. but he seemed happy with the outcome.
so more later. . . im home in my ward and already ambulatory.
caveat: photos from orbit 9
mr park was an awesome and inspiring neighbor. he was not talkative but very strong willed. he was always pushing himself despite evident pain and discomfort. once he was lying in bed and suddenly he bounded up like a martial artist on meth and killed a fly in mid flight with a pillowcase, snap!
he checked out today. i will miss watching his facial expressions in response to the preachy familys discourses.
caveat: vow of silence
so i had consult with dr ryu this morning. it was a good news bad news moment.
the good news is that the neck infection whose leakage and pus ruined my night last night appears to be gradually clearing up. . . ie the leakage was a good sign. there is no fistula in my mouth.
the bad news is that my excessive enthusiasm for talking was a bit premature. even dr ryu had been impressed but hes noticed some slippage in the sutures as a consequence. he finally got more than a bit gruff with me and said "just. stop. talking."
i nodded. point received. andrew, attentive as usual, handed me a note pad. on it, i wrote, "1 week. vow of silence." dr ryu said good.
but. . . because of this slippage the good doctor wants to do a brief "touch up" surgery which he suggested will require general anesthesia just because of the pain potential. so later today or tomorrow (dependent on scheduling) i go into surgery again – but less than one hour.
i talk too much. this is my lesson.
caveat: luke 6:41~42
my cousin sylvia, a christian, wrote the following in reply to an earlier post of mine. since im up at 5 am anyway due to some unexpected disgusting discharge from my neck wound, i found myself taking the time to think about what she said. she wrote. . .
> I have to challenge you on this one. Calling these people evil or even calling their evangelistic efforts evil is rather "over the top." Think about what they believe (since I'm guessing it has similarities to my own beliefs). They care a lot about you in order to brave the cultural and language barriers to even talk to you. They are much more concerned about you than they are about gaining a possible proselyte. This is hardly 'solipsistic' and neither it is selfish. If this world is not all there is, they are not even 'devoid of human empathy.' Rather they are obeying the command +to 'Love your neighbor as yourself.' And how can you be sure they are wrong in what they believe?
i am unconvinced.
if it increases my discomfort and unease, if it causes those around me to flinch, then it it is devoid of empathy. you could argue that they believe that what they are doing is true and that therefore the imposition of discomfort is necessary (like a surgeons knife creating necessary discomfort in order to heal). but that opens the door to the practitioners of all religions having a right to impose their spiritual concerns. voodooists could run in and sacrfice chickens, witch doctors may wish to dance or sing. do these wellwishers of my spiritual health have a right to enter my personal space on my behalf?
no spiritual practice on my behalf has the same right of imposition as the surgeons knife for a very simple reason: i invited the knife. if i were one of those religions where my belief prohibited me from modern treatment, and i refused the knife, would you respect my wishes? likewise, can you respect my wish not to be histrionically prayed for in public, in my personal space? if you cannot, you are placing something in your worldview in a position of moral primacy over mine – invading my moral sphere with yours because you have a strong confidence that you are right and i am wrong. that is not only solipsism, but is unkindness – you give expression only to your intention, your heart, your action, and you deny me mine. allow me my autonomy and follow instead the precepcts of kindness and "do unto others."
imagine you are sick with cancer in a hospital. i care about you and im deeply concerned about not just your health but the wrongness of your beliefs. so i decide to loudly explain to you that a belief in god is wrong and you need to see the truth that there is no god so that you can have the same solace from that that i feel. would you not ask, "really? here? now? are there not more appropriate times for this conversation?"
luke 6:41~42.
caveat: view of tanhyeon towers out a window at sunset
(Poem #12 on new numbering scheme)
tanhyeon, west beyond the beds: gold gestures swept by the sun and the clouds, the window enclosed all the silhouettes of dark trees, buildings beetling against the sky.
caveat: gratefuller and gratefuller
ive said it before but need to repeat: i am so profoundly grateful to all my friends who have taken the time to support me with anything from posts in facebookland to visits to my room. two unexpected visitors came by today – helen, who is the karma subdirector, and kelly, a former karma teacher and on and off korean tutor for me.
they gossipped about work things while i ate my lunch very slowly and enjoyed hearing the familiar patter of work-related korean, which naturally is the topic where i have the highest level of comprehension.
earlier, id talked for a few minutes with bestfriend bob in wisconsin, too. im feeling very loved, and so for that, my gratefulness expands without bound.
caveat: 다먹었다
i ate everything on my tray. . first time. andrew helped with half a sandwich though.
caveat: 미국스타일 브렉패스트
i dont know what made the hospital decide to shake things up but this mornings breakfast was quite unkorean, if not strictly an american style breakfast either. and andrew shared some of his coffee from the cafe downstairs.
caveat: like evil in a newly made world
andrew and i have had many wide ranging conversations about diverse topics. earlier today on the banal topic of if itchiness was unmitigated unpleasantness or instead might have some redeeming aspect, he used the following metaphor: "it is like evil in a newly made world."
we laughed. we both agreed that as a metaphor for itchiness it was a bit of overkill, but the phrase has echoed in my mind since then as utterly brilliant. evil in a newly made world is surely a particularly egregious variety of evil.
after i ate dinner andrew went out to exercise. the woman sitting with the sick man from the next bed over came over and started making conversation with me – in korean. she gave the standard 3rd degree about family, etc, and said my brother was very handsome. but then she asked me about my church and religion.
im ok making small talk in korean but debating religion is far beyond my ability. she was persistent, so i became more assertive that i was buddhist (which provides fewer angles for attack than claiming atheism), but this was one case where she could not let up. she dissolved into an almost tearful pleading with me in which really i could only make out the korean words for prayer and jesus and god.
i felt uncomfortable. i tried to broaden my smile and said only, in my poor korean, i have my strength. i pressed by hands together in the gesture shared by buddhists and christians.
these neighbors are hardcore pentecostals of some kind – they spend most of their time in bible study and prayer vigils – and who am i to begrudge them their solace? but this is not the first time one member or another of that family group have decided to direct their evangelical zeal outward. i had thought i was immune, being the foreigner in the room, but clearly i was mistaken.
it strikes me as an expression of deep, almost solipsistic selfishness that could impel this kind of behavior in a cancer ward. perhaps it is to this class of evangelism-devoid-of-human-empathy to which i might decide to apply andrews metaphor: like evil in a newly made world.
caveat: the view from my mirror
a somewhat subjective mirror-flipped self-portrait.
caveat: photo from orbit 8
excellent view of bukhansan looking straight east from the 10th floor lobby.
caveat: caregiving
an observation in an email from my friend bob made me realize there is probably a lot about undergoing medical treatment here in korea that is quite different from what similar treatment in the US would involve, that i have either failed to explain or have elided over.
bob was mentioning when i undergo speech therapy (for the tongue) or occupational therapy (for the right arm). i think it unlikely i will experience anything like these US concepts. the doctor tells me things to do – move your tongue like so or move your fingers like so and asks if ive been doing them later, and thats the extent of it.
patients are expected to be much more autonomous and self-providing, because the patient includes the family caregivers. patients without caregivers end up hiring them – a bit like hiring a home hospice worker to come help you in the hospital. every bed has a cot next it, and those cots are almost always occupied by caregivers – family, friends or paid workers NOT on the hospital staff. the cot by my bed is occupied by andrew, now – and was occupied by peter my first night out of icu.
an example of “caregiving”: the hospital doesnt provide for patient hygiene. caregivers handle bedpans, spongebaths, emptying and maintaining various external subtance receptacles, etc. if the hospital has to step in its begrudgingly and at extra charge.
because of these caregivers, my hospital room has 5 beds but arguably 10 or 11 inhabitants. its crowded and like a campout.
patients are quite autonomous. for example, i am only escorted to “clinics” in the event their location is new to me. otherwise a nurse will say “go see dr ryu” and im expected to go to the elevator, get to the second floor, and find my way across the building to where his work area is.
andrew attached the flowerpot gifted to me by my friend seungbae to the top of my iv stand. i was a bit sceptical – i imagine a nurse oh dont do that. but the head nurses reaction was only 예쁘구나 [oh pretty – not sure i spelled the korean right].
Caveat: and just like magic youre all in one piece again
what im listening to right now.
caveat-i-am-a-brief-flash-the-abstract
Doomtree, “Beacon.”
im breaking my rule that i only post any given piece of music once. this song seems so strongly, almost prophetically relevant right now. listen to it. . . its how i feel. or if you really cant bear hiphop, read the lyrics at the link above – they are poetry.
caveat: steps forward steps back
i was ecstatic earlier this morning. first the doctor drained a bunch more goo from my neck, which feels better and less worrisome. then, preliminary to removing my c-line (a sort of iv stuck into a vein in my upper chest near the collar bone that is used in major surgeries as opposed to the more familiar iv stuck into ones arm or hand or foot), they had removed the drip line entirely and so for a brief hour i was free of external tubing entirely. with no iv cart to have to trundle around, i was practically dancing the corridors of my familiar orbit and chatting animatedly with several men about our respective cancers and possible discharge dates. the removal of the c-line presaged a good prospect, as that indicates that the doctors dont anticipate any possible need to readmit me to surgery.
but then reality took some countermeasures. a conventional iv was sunk in my left hand, much less comfortable than by my collarbone, harder to work around. with only that one functional hand, it felt exceptionally onerous. then the actual c-line removal was more difficult than i anticipated – though not painful, i was required to lie still, on my back, for more than an hour. andrew kept me company.
finally, during lunch, due to tongue failure i choked on some food item so badly that i began to vomit slightly. most people know thats umpleasant. i lost my appetite quickly. so now i just feel exhausted.
while lying still for so long for the c-line removal, i composed a new bucket list.
jareds bucket list (post cancer first draft, short version):
1. learn korean.
caveat: pre breakfast
the charm of the hardcore, strictly korean menus of the hospital food has worn off. partly, since im still avoiding spicy food, that means the food thats left to me ends up pretty bland. but the big problem is that it turns out that the “tiny grains of rice” model of food is singularly maladapted to the demands of retraining my tongue. i do better with creamy substances or with things in discrete bite sized chunks. the grains of rice drift around my mouth uncontrolled and sometimes end up in my airways.
so yesterday we brainstormed some things that might be easier to eat, and andrew tromped off to homeplus and shopped last night.
this morning on waking i had a mini pre breakfast of a sliced plum and some yogurt. it was much less stressful than rice.
caveat: aint it like nebraska to kick you when youre down
what im listening to right now.
[update 2013-07-26: i added this linked version of this song when i was no longer blogging from my phone.]
Logan Vath, "Ain't It Like Nebraska."
caveat: photo from orbit 7
andrew, mary and jared. im eating naengmyeon – or trying. its not glamorous – later i choked on a noodle.
caveat: medical horror genre (graphic image may prove disturbing)
for the sake of completeness i include the following. im NOT playing around – this is not for the squeamish.
in reverse order, i underwent two procedures today that indicated supposed progress or at the least a battle against retrogression.
second, they drained around 200cc of pus from the somewhat infected wound on my neck. it was painless, since severed nerves in that region leave everything numb.
before that, first, i had the splint removed and wound redressed on the donor site on my right forearm. it looks pretty gross but theres zero infection and its healing well. now instead of a cast i have just a loose bandage – just when id gotten used to using my forearm as a table.
here is a picture of my forearm. the round scoop of skin and muscle were used to build my new tongue. modern medicine is amazing.
caveat: photo from orbit 6
andrew, jared and peter laughing about something.
caveat: running out of words
i awoke from a dream at about five am. in and of itself, that is a great sign, as with rare exceptions i dont sleep well enough at night these days to even be able to dream in my normal way.
but the dream was completely disorienting. they wanted to prepare me for a new surgery. the doctors were using these little tags to identify potential problems and to get a feel for my psychological state . . this last was important because the surgery was to be a kind of brain surgery.
but they were imposing a maddening rule – every word i used on the little tags could only be used once. over and over i would be confronted with a situation like this: i would write a word on the tag in answer to a question and be told, you already used that word. someone would point to the tag where the word was used in the vast proliferation of tags.
i kept trying to find multilingual synonyms. . i would write one time "pee" and be told nope you used that. "urine" id venture. . nope. hmm, "소변"? no look its written down here. why cant you do this?. . you need to help us to take care of you but how can we when you cant do this simple thing? finally, "orina" and a dismissive smile but quickly dissolving into a new unanswerable question.
the dream went on and on like that. . . a linguists nightmare hospital stay. do you realize how dangerous this will be if you dont have the right labels?
crying tears of impotence.
caveat: stone leaf leaf stone?
there are days like today when i feel a little stalled. small improvements, but also small degredations. i had the staples removed from my neck, so im a mite less frankensteiny now. but i struggled to eat my meals . . . each swallowed bite is a three or four minute victory. there is a sense of elation at the conclusion of a meal, only to see that ive eaten twenty percent of the food on the tray during more than an hours hard work.
i lie thinking about an interesting metaphor. there are zen-like proverbs which assert either:
1) be like a leaf in a stream.
2) be like a stone in a stream.
each of these, alone, merely affirms our need to be at peace in the stream of the world. but they arent identical. . . a leaf is tossed on the surface, always going somewhere but little control of where; a stone sinks to the bottom and holds its own against the current, but gives up any mobility.
i thought, maybe in one moment, i can be a leaf, and in another, a stone? like a sort of submarine hybridized with a hang glider, the stoneleaf could rise and float the calm, easy or predictable spots, and in rough water plunge to the bottom like a stone. within a single axis of control, a skilled leafstone could go anywhere it wished.
its not total control . . far from it. its just a single dimension. . an attitude "switch" that allows for goal-centered activity within the broader boundaries of lifes stream.
i lie here tossed by lifes stream, but i have a goal: to continue living. so in this moment, does being a stone or being a leaf better suit my goal?
caveat: 세상은 넓고 할 일은 많다
i cant do detailed translations when posting from my phone as is my normal custom. but i didnt want to give up my proverbs entirely. andrew borrowed a notebook of mine and we found this aphorism in the first page.
세상은 넓고 할 일은 많다.
roughly. “the world is big, theres a lot of work to be done.”
caveat: aboard the imperial battle cruiser
i think the architect of the main hospital building here at the cancer center was taking inspiration from the lines and shapes of star wars imperial battle cruisers. with the tropical rainy monsoon of summer outside, its easy to imagine weve crash landed on an endorian moon and are awaiting repairs.
caveat: photo from orbit 5
i stopped to talk with mr cho, my roommate, about positive thinking.
caveat: photo from orbit 4
andrew and making kimchi cancer gangsigns.
caveat: photo from orbit 3
another nurse.
caveat: photo from orbit 2
another nurse.
caveat: photo from orbit 1
my friend mary is visiting and i gave her my camera and she was effective following me around and taking pictures. blogposting by email limits me to one photo per post so i will make some entries about various things in photos. my life in the cancer ward. “orbit” refers to habit of walking a large circle the circumference of the tenth floor.
first picture. one of the wonderful kind nurses.
