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.
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.
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.
andrew, mary and jared. im eating naengmyeon – or trying. its not glamorous – later i choked on a noodle.
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.
andrew, jared and peter laughing about something.
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.
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?
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.”
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.
i stopped to talk with mr cho, my roommate, about positive thinking.
andrew and making kimchi cancer gangsigns.
another nurse.
another nurse.
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.
i knew if i got cancer someone would finally come visit me. my brother andrew arrived bedraggled and jetlagged, this evening. now theres more than one way in korea.
so my secret plan worked.
although my korean remains lousy, in other ways i am fully become ajeossi.
koreans use various wooden and plastic doohickeys
to massage their own backs when they cant get someone else to help, generally with a high degree of percussion.
grace brought me the wooden morningstar thing (photo on my windowsill, below) last night, and this morning i dutifully stood beside my bed and bonked my back, like a real ajeossi. it worked ok.
koreans are firm believers in curative powers of back bonking – they would organize gangs of orderlies in the icu and go around bonking all the patients every few hours. i dont doubt that human touch can be curative, and well placed massage too, but im slightly sceptical of percussion on the back as curative per se.
oh, yesterday was a difficult day. a day of overwhelming emotion: jubilation, fear, frustration, anger. sadness, comfort.
early on i was in high spirits. i got to eat real food for the first time since the surgery. but early afternoon i had an appointment at the radiation clinic, and that dragged on and on, taxing my limited energy. although i realize its necessary, endless talk of worst-possible outcomes (blindness? deafness? more cancer? permanent loss of you-name-it?) saps my positivity, too.
some coworkers from work came to visit me but i was still filling out forms at the radiation clinic. they actually managed to track me down and visit there, but we didnt have much chance to talk.
at the end of this visit, there was some misunderstanding. a complicated issue around when to schedule a visit to a dentist for a preliminary creation of an oral "immobilization device" which is problematic because my newly reconstructed tongue is still "finding" its shape. there was an appointment scheduled at first for immediately, then for two future dates. i left the radiation clinic sure at least that i had no more appointments that day, for which i was glad given i felt tired and overwhelmed and needed to pee – not a fully trivial undertaking, currently.
but upon my return to my home ward – 10th floor ward 2 – a tribe of nurses descended and insisted i needed to go off to the dentist right away. no time to pee, go wait for the orderly escort by the elevator right now. i tried desperately to explain why this wasnt correct. i tried in korean (which seems to get worse than useless under stress), i tried english. the nurses showed concerned faces but didnt understand what i was complaining about, so they ignored me.
i was furious. not even so much over the appointment mix up as over the feeling i was being ignored. i stewed in this as i waited by the elevator. and waited. because the orderly never came, because in fact there was no appointment.
being right but having been utterly impotent to communicate effectively was worse than any pain id been subjected to so far. when the nurse led me back to my room, i was inconsolable. the nurses were just befuddled, since they didnt understand what was causing my unhappiness – it wasnt any physical symptom. they figured it was loneliness and called curt and grace.
in fact, my worst pain experienced so far, in korean cancer camp, is this psychic agony of failed communication. theres irony in that in this strange, abnormal situation, it remains that it is the banal fact of my poor mastery of korean that finally reduces me to sobbing.
grace came later and consoled me some, she wanted to yell at the staff. but by then id calmed down and counselled against it – my first maxim through this has been, dont piss off your caregivers, no matter what.
actually last night i slept for longer stretches and more deeply than so far. i continue to improve. but i cried for a long time yesterday.
its not that i forgot the tastes. but with a reengineered tongue and mouth, my face must have been like a babys that first time you give them some new thing to eat. its not the taste thats blowing their minds but rather their efforts to sort out how to control this new object placed there. theres a lot to sort out . . chewing, but not so much as to chew the tongue, then steering the pieces gradually backward and toward the right tube at the back so as not to choke. imagine youve lost all of that automaticity . . . every bite takes several minutes to sort through. i still bit my tongue once.
they gave me juk (rice porridge), fish broth, some finely chopped beef with cabbage and carrots, some fake crab salad, white kimchi, and greens. i managed about 30 percent of the total, focused mainly on juk and fish broth.
one week ago this morning i went into surgery.
i had already long ago acquired a mental habit of chacterizing major life flexion points such as this as moments of becoming ghost. the reasons for this mental vocabulary are complicated and personal, but include how formative Robert Pirsig's Zen and the Art of Motorcycle Maintenance was in my youth (ghost) and how influential Deleuze and Guattari's Thousand Plateaux was in my subsequent philosophical development (becoming). ive been on this road before: the monotonous hospital hours punctuated by vertiginous pain or impotent frustration.
the beautiful green whooshing trees outside my window provide relief, as does the kindness of strangers and the generosity of friends. the ghost, with time, re-anchors himself in the world, a transformed being imminent in the traces of pain and kindness scored across the body of the preceding being.
i was doing one of my "orbits" of the ward earlier while my friend grace was visiting. there are plenty of other patients trundling their ivs of varying complexity around the halls at almost any time of the day or night. we all walk around like somnabulent ghosts of diverse mood and genre.
because, currently, i cannot walk and talk at the same time – to walk i need a hand to steer the iv stand, while to talk i need a hand to put pressure on my tracheal hole, and my sum total of working hands is less than two – we just keep a pensive silence as i trundle purposively.
"there. you did it again," she laughed.
i stopped, carefully parking the iv stand close to a corridor wall. i picked up my folded sheet of clean gauze, and pressed it at the base of my neck. briefly clearing my throat first, i finally managed a weak, "did what?"
"i see you're giving the white man's nod to ajeossi now." she seemed surprised.
there are some terms in that statement that require explanation to anyone not inhabiting the narrow english-speaking expat community of south korea.
"the white man's nod" is the subtle acknowledgement, short of actual greeting, that seems to arise between the confreres of any visible minority in any place, so it doesnt belong exclusively to white men – the naming of the term is more the exception that proves the rule. any non-asian who has spent time in korea knows – when youre walking down the street and pass another non-asian, you almost always share a little nod or duck of the head, as if to say "oh, there goes another foreigner like me. here we are, foreigners in korea."
the other term here is ajeossi [아저씨] which just means an older korean male of indeterminate social status.
both these terms being known to me, i quickly grasped what grace was talking about. "i suppose." i said without hesitation, "its not really a white mans nod as a cancer patients nod."
and its true – our pajamas and our iv stands a-trundling, we are highly visible and almost a majority. i think the nod has always been more about a sort of solidarity in shared difference as opposed to any kind of greeting at all: "oh, there goes another cancer patient. here we are, cancer patients in the halls."
graces insight is to point out the sociological identity of two seemingly unrelated situations.
Werner Heisenberg, Kurt Gödel, and Noam Chomsky walk into a bar. Heisenberg turns to the other two and says, “Clearly this is a joke, but how can we figure out if it’s funny or not?” Gödel replies, “We can’t know that because we’re inside the joke.” Chomsky says, “Of course it’s funny. You’re just telling it wrong.” – See more at: Marginal Revolution
This one of those things I had stockpiled for when I didn't have much to say. Time is really dragging yet I often lack the energy to do anything except cooperate with the nurses, go to the bathroom and take naps. My friend Peter came today, unexpectedy. Just as he arrived, my favorite nurse (my "Korean teacher") said (in Korean, I translate her sense not her exact words), "Oh good a friend came. He was looking a little depressed [실망] and lonely [혼자]." Peter brought a paper newspaper (Korean Herald) which by skimming helps ward off the worst symptoms of internet withdrawal. He is very kind.
meeting with dr ryu this morning, he felt it was time to start looking toward next steps (ie after hospital discharge). hes going to schedule a visit with a radiation oncologist, but as seems to be my pattern, im still in a “gray area.”
on the one hand, the tumor removed was 2.5 cm across – an inch-wide ball of cancer inside my tongue explains a lot about how much discomfort i was experiencing prior to the surgery. with that size, radiation is viewed as mandatory.
but on the other hand, full biopsy of all removed tissue (tongue and neck lymphs) still reveals zero metastasis, which is quite rare in stage three oral cancers.
so we have to decide how aggressive to be with the radiation.
what im listening to right now.
[update 2013-07-26: youtube embed was added.]
Sixto Rodriguez, "Sandrevan Lullaby."
Good night.
keeping mind im currently one armed, i really felt like id achieved something grand when i changed three pillowcases today.
to be honest, my hope going into this was that i wouldnt spend 100 percent of my blogposts talking about my illness and the cicumstances around it. but the primary source of my blogs normal diversity is in the diversity of my day to day life: books being read, internet being explored, work and social interactions. less of that is happenning right now both from lack of opportunity but also from an attention span limited by spells of exhaustion. for example, i read parts of two books today – but less than two full pages in each case.
all which is to say. . . the pillowcases really were one of the highlights, along with a certain bureaucratic undertaking that curt assisted me with that hopefully means my brother can come here sooner than august.
ive been struggling with the tradeoff i made as part of this surgery. i dont recall if i stated it here quite explicitly, so ill summarize in a few sentences at the risk of being repetitive, beginning with a question: to wit, given the chance to salvage 100 percent functionality of my tongue and mouth, would i be willing to sacrifice with some permanent loss of full range of function of my right hand? the answer was so obvious i didnt even hesitate – i have two hands, but only one mouth and tongue. so i said of course.
i only mention this because this morning with various frustrations, im really feeling the lack of a right hand. right now, i basically have zero percent functionality. there is no indication that that is permanent, but its becoming clear that if current trends continue, ill have full voice and eating long before my right forearm is rehabilitated. and thats a pain.
not in the pain-needing-medication sense but in the getting things done sense. im going to have to relearn how to type at least for the short term, and im not sure i wasnt in a little bit of denial about just how much typing i do.
going to the bathroom, cleaning up, changing clothes – they all become frustrating rube-goldberg puzzles.
ok, that might be enough narcissistic whining. it took me 35 minutes to type this blogpost. last week on tuesday i could have made an entry this length (if ideas were already prepared in my mind) in about four minutes – i used to be a fast typist.
My friend Peter blogged his version of his night with me in the hospital. I like the idea that one can go and read a different perspective on my experience… in the event anyone’s interested.
[I added this post later but back-dated it to match the date of his post, when I became aware of it – don’t let the timelines confuse you.]
i went to see dr jung this afternoon. while dr ryu is in charge of my neck, they share responsibility for my tongue and dr jung alone is in charge of my right arm. so dr jung and his team changed the dressing on my arm and inspected things.
should i describe what it looks like? i dont really want to, but the following conceit occurred to me: if i saw my bare right forearm on a stand in a modernist gallery, the caption would read “title: lovely spring flower. medium: putrefying flesh on a still living man.” that strikes me as a vaguely baudelairean joke. but in all seriousness, the artists seemed pleased with the outcome.
here is a picture of dr jung, me, and his two surgical nurse practitioners, jang and jeon. who seemed a kind ernie and burt in scrubs.
dreams can be strange, of course. there seems to be no correlation between how long one is asleep and how long the dreamtime lasts.
before explaining the dream, ill explain why i was sleeping just now – shortly before noon on monday morning.
this morning was kind of busy. . . i went to see dr ryu in his office/clinic area on the second floor rather than him coming to see me. i took it as a vote of his confidence in my recovery. as a head/neck oncologist, his clinic area has a lot of gadgets arrayed around dentist-type chairs. i sat in one and he examined me and said it seemed the swelling on my tongue was worse. i confessed i was probably talking too much, too soon. he laughed and said, "well that explains it. you shouldnt."
he said he still felt ready to remove the stitches in my tracheal hole (which will allow it to begin healing closed spontaneously over the next several weeks), but said a lot of non optimistic things about still possible complications with the tongue reconstruction despite current very amazing level of recovery and no evidence of necrosis of the transplanted tissue. i realize its his job to talk about all this, but its hard to listen, too.
he then said that before taking out the stitches he would remove the iv style insert at my left shoulder, bringing my total down to one conslidated iv at my right shoulder – i had four when i woke up in icu. this left shoulder one is a bit different though – instead of being hooked to my circulatory system, its hooked with a tube in my body cavity to either the neck lymphs or the general in-between of things up there – i didnt uderstand which, but i was happy to lose the attached external apparatus as it weighs a bit, and hangs permanently attached at my waist so its another obstacle to getting comfortable.
dr ryu said this wont hurt at all (i hate when doctors say that). after 25 minutes of a sensation of angry mice aggressively operating tiny vacuum cleaners in my neck in the spaces between stuff, dr ryu applied a bandage to the hole, which had leaked a vast amount of liquid with the visual aspect of clear blood plasma out down my chest and into my pajama bottoms.
that done, he moved on to the tracheal stitches, which hurt much less. and then he said "are you ok to go back on your own?" i nodded. i was a bit dizzy. so he didnt even call a nurse escort, just sent me along – that was another post op milestone, being allowed freedom of movement unsupervised – the floorwalking in the ward is as you want but its never really out of the perception of one staff or another. wandering through the airport-terminalesque second floor i had the fleeting thought that i could go outside and no one would stop me. just fleeting.
back on the ward i checked in and i did four or five orbits, getting past the dizziness. then i elevated my right arm like i should be doing, and the dressing on my shoulder began to leak. a lot. it was mostly clear but enough blood color to look alarming. i stood and got a nurses attention and we went back to my bed and she redressed the hole and cleaned things up and gave me a fresh change of pajamas.
so as i said, interesting morning. i was lying on my side on my bed, arm elevated, and i fell deeply asleep, as naturally as ever so far. i slept 30 minutes or so until a nurse came for my vitals, and i had a epic dream. not all is clear, but other parts remain vivid even a half hour later.
i was on an express bus traveling from ilsan to seoul. ive done this, though mostly the subway is more convenient, but regardless, out the bus window i wasnt seeing just seoul but also other parts of korea that i know well by bus window, like jeollanam and suwon. it was kind of random but i didnt feel any alarm or curiosity in the dream. i was bored.
the bus queued in traffic for a slow bridge crossing, and i noticed there was a bus next to ours that was a US military bus. in reality these buses look like korean private tour buses and except sometimes for a handwritten destination sign in the front window or looking at the passengers directly, you would never know. but this dream bus next to mine was american school-bus style and painted olive green, like the ones i used to ride at fort jackson. and lo and behold, staff sergeant jones was driving, looking for all the world as i remember him, a cross between prince and samuel l jackson.
he grinned over at me and i noticed the windows were open on both buses. "hey way," he called out as was his wont – "way" was my only name in the army since you dont really have a first name. "you still in korea? i been looking for you. you gotta come with me." he reached out an arm and pulled me right through both windows and found my self kneeling and coughing in the aisle floor of the army bus. "man way you look fucked up we gotta get you to the hospital."
i laughed, "i know." i settled into the seat behind jones and he told me stories about panama, where had served in the 198x invasion.
outside the window, it looked like we were headed for osan on the gyeongbu expressway. sure enough, we arrived at osan base and went through the gate. apparently they were expecting me, as i showed my korean registration card (national id). once on base, though, the scenery changed. the base went on for hours, and looked like west texas. "i dont remember osan like this," i commented. jones just nodded.
finally we pulled up at abandoned-looking cluster of low military buildings. jones helped me walk inside but ran off even as i turned to thank him. i saw a check in counter. michelle sat behind it. it was clear immediately that she didnt recognize me, yet this didnt strike me as odd in the dream. i said i needed to check in and she handed me a packet of forms. all of them were in korean. "theres no way i can do this," i said, "even if i had my dictionary." it dawned on me i didnt have my dictionary (ie phone), or anything in my bag – my bag was still on the other bus. i looked at michelle pleadingly.
she shrugged. "dont look at me. what is that, mongolian?"
[actually i didnt finish writing this but typing on my phone is quite laborious so im posting it unfinished and will work on it later.]
[update: the details i remember are now long faded but the dream continued quite a while longer. i will outline it for sake of completeness.]
i gave up on michelles help and went wandering the mostly empty hospital. i found a stooped old man in a clown suit with a utility cart of the kind janitors use. i asked if could help me. he was friendly but spoke in a rapid uncompromising korean that was useless to me. then i noticed my friend peter with a mop. i felt relief. but peter just started telling me that nobody seemed to in charge and that it was a do it yourself hospital. he pointed out that there were lots of beds and supplies. peter helped me choose a bed in a relatively clean room and next thing i noticed he was fast asleep on a bench in the hallway.
suddenly a group of soldiers approached us. they woke peter up and told him he wasnt authorized. he asked "what about him" pointing at me. they said i was fine. peter asked them who was in charge. a sergeant said, "that clown. you should know that." we both nodded. thats when the nurse woke me.
there were strong thunderstorms last night. i watched the lightening and listened to the rain and went to sleep again around 3am – first time to fall asleep without refreshing (topping off ) pain meds. it felt more natural and for the first time i awoke in a changed position from when i fell asleep. living on the edge. . .
here is a 6am view from the lobby windows. foreground is jeongbal high school and pungsan neighborhood, with the newer high rises of what i think of as “north of the railroad tracks” ilsan.
not really running, but after several hours this afternoon visiting with my friend grace, it occurred to me to wonder, is it possible to try too hard to recover?
the doctors and nurses have endlessly cautioned about the dangers of bedsores, yet both peter and grace said i move around too much. i seem to alternate restlessness with unfocused tiredness. the restlessness leads to a lot of "exercise" – which the doctors said i couldnt really do too much of: i walk endless tiny orbits in the limited corridors of the east half of the tenth floor, pushing my iv stand beside me like an unwilling pet draged on a walk. as i walked alongside grace i wondered if id covered a kilometer yet today.
"i dont know but this more walking than ive done in a while," she said. grace is notorious for being the type of person who flags a taxi for less-than-kilometer trips.
we both laughed. and she mock-complained that rather than trying to decipher my messy hand written notes she had to decipher my raspy badly articulated voice instead.
when she left i ran the pain med for the first time since six am, and went to sleep. i can only ever sleep in one to two hour chunks, due to bladder on iv filling so regularly, so after dreaming i was running through the corridors, now im awake to reflect on my day.
here is a picture of dr ryu, my oncologist, me, and dr seok, a surgical intern i think (he likes to examine stitching in various places).
dr ryu was talking with me this morning. he said to peter, “he talks.” he was refering to the fact that if i cover my tracheotomy hole i can make these breathy poorly articulated phrases.
in answer to his observation i said, breathy but understandable, “한국말도” [korean too].
dr ryu grinned broadly. “youre going to be just fine.”
so many have been so kind and helpful, from close friends to strangers "just doing their jobs" – notably so many nurses going out of their way to help.
yesterday getting out of the icu and coming to the regular ward, helen then curt then grace then peter came to visit me and bring me stuff. then when the hospital insisted that because it was first night out some next of kin should stay with me, peter ended up doing it, sleeping awkwardly on the fold out cot beside my bed and rearranging my empire of pillows – its almost impossible to find a sleeping position when i have four bandaged areas and sleeping flat on my back is impossible too.
such generosity people have shown, that i will emerge from this with such a store of gratitude that i wont have room for anything else – except the six or so pillows on my bed with which we keep trying engineer potentially workable sleeping positions.
