Month: July 2013

andrew and i were talking about some financial aspects of my upcoming discharge. at some point, i will be presented with a bill. i really am not certain what it will look like. curt told me that he saw a running total sometime during the first week in the neighborhood of 40 million won ($40000), which could mean a current total of double that or more – but, caveat: that number is meaningless, because its pre-insurance. insuance will be paying different aspects of the bill at different rates, ranging from 95 percent for surgery to zero percent for hospital food and bed space. so the final bill remains a mystery.

but andrew had a good point, too: theres only so much they can do to collect. jokingly, he imitated a supercilious hospital administrator: "pay your bill right now. . . or we will put the cancer back!"

this made me laugh.

this is a low quality picture – you can barely make out at least 4 sleeping figures in the darkness. the 10th floor lobby at 5 am is full of caregivers (family or paid, but not patients and not part of hospital staff) catching some sleep in classic korean style: wherever and whenever they can.

i was trying to explain to my evening shift nurse just now that im not experiencing pain so much as anxiety or nervousness. this was hard. . . i lack the vocabulary. i managed to get it across with some pantomime and a dictionary.

at one point i noticed i was shaking my leg in that nearly universal body language of nervousness, so i gestured to it, "there, see? nervous."

she understood but then she wanted to explain some saying to me. its pretty rare for a nurse to stick around to make conversation, especially with such insurmountable linguistic barriers. . . so i was surprised. i was even more surprised when over the next 5 minutes she successfully explained the saying to me: when we shake our legs nervously like that our happiness will run away on them.

hmm.

i had a long consult downstairs during midmorning. dr ryu was pretty firm about discharge thursday afternoon, after my "practice run" radiation that is planned for thursday morning (low radiation, calibrating their gadgets to the shape of my head, etc.). im excited by the prospect of discharge.

they removed the last of the stitches in my forearm. that was a rather painful and drawn out process – there were originally hundreds of stitches that have been removed in stages. andrew said it looked like a sharkbite scar. i could see that. the only stitches left, of the five surgical sites on my body, are a couple stitches that are helping to close my tracheal opening that was made for the oxygen tube.

the happiest news, for me, in the present moment, is that after recounting to dr ryu my tale of hol(e)y woe and the multiperforations from yesterday, he asked some questions about my eating situation and imperiously ordered the nursing staff to remove my iv. well. . . the externals were removed – but thats the worst part – ill still have a spigot in my arm for medicine delivery. but thats ok. im free of the trundly five-wheeled too-skinny demon!

at one point, talking about the radiation, dr ryu said something to the effect of, "its important for patients to have recovered their strength."

i said soneting like, "well ill work hard on getting stronger," having interpreted his statement as a kind of indirect advice or caution.

a strange expression crossed his face, more serious and reflective than before. "oh. . . youre strong enough. . . . strong enough." perhaps it was in part a reference to my notable strong-willed attitude, which has been sufficient to create some small conflict between us on a few occasions. i have very much come to like dr ryus subtle humor.

three more failed iv perforations this afternoon. were on number eight. my arm has many holes. . . i am become hol(e)y.

depressing difficult day because of that.

i did thirty half orbits today – thats 3 km. goodnight.

this morning they decided it was time to relocate my iv to a different vein. this is just something thats done periodically. so preliminary to that they yanked out the old one, and for about 15 minutes i had freedom from that terrible bondage. i literally jogged two orbits with the sort of shuffle-foot move necessitated by wearing flipflop sandals – 200 meters. i was grinning stupidly at people, and saying "freedom!" with a simpsonsesque irony familiar to younger koreans. i walked another 7 orbits (thus totalling almost a kilometer) before i was called to heel and sat for the new iv.

as sometimes occurs, they had trouble placing the new iv – recalcitrant veins and all that. so it took four attempts before a new one "took." the new placemenent is particularly uncomfortable, being right at the inside left elbow, which limits movement on my left arm. as a consequence, i have graduated from one good hand and one useless hand to having two half-useful hands instead.

i have begun to feel that this system of iv-stands has evolved as a weird kind of unintentional social control for healthcare environments. it prevents the patients from moving around too much or too fast by having them hooked up to these cumbersome carts.

after lunch i was rushed downstairs for a consult with dr ryu. he said there are imperfections in the "flap" (as he refers to the reconstruction, i think from the surgical technique involved), but my otherwise notable resiliancy seems to be compensating more than adequately. reading between the lines: the procedures outcome has been disappointing but the patients stubbornness is making that fact utterly moot and as a result the patient will be just fine.

dr ryu also told me to talk as much as i want – "i know you like to do that." and he said stop tilting my head to the left or i might get stuck that way. he remarked too, "i think you would like to go home." i said, "definitely." so he said that if things stay on track with the infection clearing, i might get discharge before next weekend.

this morning i kind of got a little bit angry with the nurse, not at her but over all the frustration with the hospitals failed attmpts to understand my dietary situation. their latest boneheaded idea appeared yesterday, when all my meals began showing up finely chopped into dangerously ironic rice-sized pieces.

i know theyre just trying to help. so after finishing that bowl of rice as a sheer self-torture execise, i told the nurse “just give me the regular food. take away all the special flags.”

lunch was regular and fine. i ate the good parts, skipped the bad, supplemented with some fruit and yogurt, and called it easy. and now at 3pm, for the first time since here, they offered me an afternoon snack. ive seen other patients receiving these. im not sure if its a sunday special or part of the “regular” menu i demanded this morning.

what was my snack?

a baked potato. koreans eat these plain as finger food. so, per my friend dougs request, i had a baked potato party. unfortunately, he wasnt here. maybe next time.

i ate all my rice for breakfast. milestone. took freaking forever, though.

when i walk around the ward pushing my little IV-stand, i refer to it as orbiting. its part boredom relief, part exercise, but in itself its pretty monotonous, too.

ive realized the hospital has posted little signs that calibrate on the elevator lobby, showing distances. a single triangle-shaped "orbit" of the tenth floor is 155 meters. but before noticing this id already worked out my own calibration. i prefer to do a "half-orbit" which cuts off most of the west ward where all the most depressing chemo patients seem to be, and by counting paces id concluded that a half-orbit was almost exactly 100 meters (so on the floor plan its more like a two-thirds-orbit).

thats a very convenient number, because i can know that ten half-orbits make a kilometer, etc. so i just walked a kilometer. im going to shoot for two or three each day (20~30 half-orbits), thus equaling my daily walking commute to work.

while i was slogging through my breakfast juk, andrew went down to the cafe in the lobby and got his own breakfast. when he returned, as has been our evolving custom, he gave me a few tablespoons of coffee "just for the taste."

"your little taste of heaven, sir," he said like a deferential butler.
"oh thank you, good brother," i replied. i pushed my tray of half-finished hospital cuisine toward him. "and here is your little taste of hell."
we had a laugh, and then when my coffee was done i said, "my heaven is concluded."
andrew riffed on this into a joke. "a man dies and goes to the gates of saint peter only to find them closed and dilapidated. the guard at the gate is surprised to see someone. he says, 'this place closed years ago. that experiment is definitively concluded.'"

for some reason this caused me to laugh longer and harder than i have in a long time. we went on to discuss the novelistic potential of running with the idea of an "outsourced" or "privatized" heaven.

i just thought of a conceptual connection between two of my struggles right now. the two are utterly unrelated, but i see some thematic tie in the concept of granularity.

the first struggle is rice. yes – quite simple: RICE. almost every meal has rice. i have nothing against rice – i habitually comsume at home not much less than im served here daily. i like rice. but by some twist of fate it turns out that a blob of sticky korean rice is almost ideally designed to confound my new, untrained tongue. upon putting the rice in my mouth the individual grains separate and go rogue. i cant chew them all. . . some escape and lodge in places my tongue cant find or reach. maybe half a dozen grains end up in my lungs with every meal.

unfortunately, it being rice, this creates a social disaster. eating everything on my tray except the rice is perceived as if im refusing to eat. im accused of having a lost appetite (obviously a bad sign), im accused of being a picky westerner, im accused of having a poor understanding of nutrition.

ive taken to calling my neighbors over and showing them the rice grains i cough up after a meal, to prove my point. i can eat things that are creamy, no problem. and larger granularities – chunks of fish or meat or fruit are fine too. "hardness" vs "softness" is not the axis of my problem, but people have so much trouble conceptualizing what im talking about. andrew bought me some apple and a woman complained i couldnt possibly eat it given my other food troubles, but i savored it easily.

the second struggle is with a lack of solitude. i have a social job and those social interactions are important to my psychological well-being, but i also not only enjoy but NEED solitude – preferably on the order of at least 8 hours per day. in the hospital, there is never solitude – nurses, fellow patients, anyone can interrupt into my space at any moment. im like a single grain of rice, where to be isolated from the collective implies a certain risk. the social granularity of cancer ward life isnt per se a bad thing, but for me its proving to be a sort of subtle poison no different from the grains of rice, sapping my strength in a way others are incapable of understanding.

the social space here isnt all bad of course – that is far from my meaning. most people show immense kindness and generosity. but i need my reparative solitude.

i had consult with dr jung just now. he tends to be more communicative than dr ryu, but i dont see him as often since hes only a superstar guest reconstructive surgeon and not a resident surgeon like dr ryu.

dr jung helped me understand some of the urgency of yesterdays surgery, which id picked up on but hadnt been clear on details. although the tongue reconstruction was solid and healthy, the infection in my neck had spread to part of the vulnerable transplanted flesh. so the neck infection, while not life-threatening, was at the least suddenly tongue-threatening.

hopefully they can control the neck infection. dr ryu added a second antibiotic this morning, and dr jung said my immune system was "way above average" whatever that means. they installed a fluid shunt during the surgery yesterday and in the last 24 hours since ive had much less problem with the liquid (pus&blood) ending up in my lungs and mouth.

dr jung was his usual very blunt self. "at first your surgery was an amazing success. now because of the infection its just a so-so result but i think youll be fine."

with yesterdays surgery, expectations of a miraculous two week recovery from the major surgery on july 4th have faded. now dr ryu has suggested that we move the radiation back a week or two from the intended first-week-of-august start. the concern is achieving full healing on the neck site, which is proving challenging. a persistent but non-life-threatening infection is slowing things, and so my hospital stay is stretching out to at least three weeks and probably more at this point.

im grateful that andrew is here as caregiver, and for my other friends for their continued support.

the monotony of the hospital stay grates. i cant write much – each blog post such as this is a painstaking hunt-and-peck on my smartphone that takes ten times longer than i feel it should. i read but my attention wanders. many of my roommates are kind and courteous but a minority make it their constant business to second guess my doctors, my diet, my beliefs. i wish them a speedy recovery to full health so they can take their negativity elsewhere.

sometimes my own positivity falters. i begin to feel i have reached a new "normal best" – that this now is the best i can do. i walk my orbits and say my affirmations inside my head, but a side voice expresses a cynicism: these affirmations arent working blah blah blah. its just the frustration of each moment, piling along. sleep comes more easily but still in never more than one hour chunks – marked out by my IV-driven bladder, a glowing red digital clock, and diffuse nightmares of vampire roommates and liquid-filled lungs.