Category: Cancer

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.

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.

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.