Category: Cancer

[This post and the others on this topic was written on paper in fragments or even less – single word prompts for ideas – at the time of the events – and assembled later. It’s taken a while to put things together… not through any particular emotional difficulty but just lacking the energy and willpower to do much in the weeks right after the surgery, in addition to a certain perfectionism with respect to the project which I’ve now managed to finally abandon.]

Sixth Shift Word: Kindness

My last shift was a morning shift, and I had a very competent and cheerful woman with glasses who reminded me of a sort of Korean version of my friend Amy (who is a nurse).

I didn’t really have any major insight during this time. I was feeling stronger, more in control, and after my philosophical exchanges with the night nurse, I’d allowed myself several periods of full-on sleep (as opposed to my microdreaming, mentioned two posts back).

This is a sheet of some my conversation with the morning nurse.

This next sheet is my last paper in the ICU – it’s a brief exchange with Dr Ryu, who did some aggressive poking around in my mouth and throat, removing the oxygen tube completely. I spoke too soon on one note: “I feel good. No infections!” That triumphal note haunted me later, when the neck infection became the largest obstacle to my smooth recovery.

The main point, though, is that by this time I had become convinced, based on my experiences of gratitude and suffering in the previous two days, that kindness was the key.

Doing kindness makes us feel better, too.

It’s not like I never thought kindness was important, before. I remember distinctly a conversation I had with Curt way back in 2008, when he was my boss at LinguaForum, when he asked me what I thought was the most important quality in a teacher, and I answered without hesitation that it was “kindness.” To which Curt, at the time, had said only “hmff.”

Now, though… kindness is not just the most important quality of a teacher. Now, kindness is the most important quality. Period.

Don’t let me forget it.

[This post and the others on this topic was written on paper in fragments or even less – single word prompts for ideas – at the time of the events – and assembled later. It’s taken a while to put things together… not through any particular emotional difficulty but just lacking the energy and willpower to do much in the weeks right after the surgery, in addition to a certain perfectionism with respect to the project which I’ve now managed to finally abandon.]

Fifth Shift Word: Suffering

The night nurse of my fifth shift in the ICU seemed to be assigned to me for the same reason as the fourth shift nurse had been: out of my reputation for being “low maintenance” and because she was relatively new or inexperienced. She seemed incredibly young – I’ve had middle-school students who seemed more mature and self-assured. But my fifth shift nurse also turned out to know English the best of any of my nurses.

The fifth shift was by far the most terrible of all my shifts in the ICU – but the reason it was terrible will surprise you – it surprised me. And it ended up being the most epiphanic, too, for that same reason.

You see, the head nurse of the Friday-to-Saturday night shift was a kind of insecure, whiny-voiced Hitler. I call her in my memory and in anecdote “the hitler nurse” – she would rant and rave and berate her staff at any moment whatsoever. She would berate her staff while standing right at patient bedside, criticising their efforts, asking if they were incompetent, insisting they try harder next time. This was bad enough for me, who barely understood, half the time, that this was the content of her rantings – how would be to be a Korean, lying, half-dead and hooked up to some machine or another, and having this hitler nurse standing beside the bed yelling at the nurse in charge of your machine, saying “you did that wrong, you goddamn idiot, etc., etc.”?

I felt guilty, because I felt I had brought the wrath of the hitler nurse down on my own lowly caretaker, and she was clearly suffering because of it. She was agitated. She would make mistakes. She would sit and stare as if trying to gather the strength to continue. She was a person deeply troubled by the horrible treatment she was receiving from her boss and by her own insecurities and inexperience.

At the very beginning of the night shift, I’d asked for “suction” (see previous post). I needed the liquid vaccuumed out of my lungs. Only afterward did I realize my newly assigned nurse wasn’t experienced with this procedure – she was not gentle, she was not fast or efficient, and it was so painful that had my mouth been working properly I would have screamed bloody hell. And afterward I allowed my gratitude to evaporate and I insisted that something had gone horribly wrong during that session of suction, and I made the mistake of showing something written to that effect to the head nurse.

So then the head nurse decided to berate my attending nurse about her failure to care “properly” for her patient for the rest of the night. The hitler nurse yelled at me too – saying well, it’s hard, getting the suction, of course it hurts, what’s your problem, anyway? I was really angry. I was really scared. I wrote the two top things to the hitler nurse – first, 천천히 말하 (talk slowly), and then, 이해못해 (I don’t understand). In both cases, I was digging my own grave deeper, as they are impolite forms.

A bit later, to my own nurse, I wrote the part below, 미안합니다 그냥화났어 (I’m sorry just I got angry). Finally, I tried to explain that in prior suction events it hadn’t been bad, but I think I explain it badly there and I’m not sure it made sense.

I felt so bad. The young woman didn’t deserve it – she was just inexperienced. And she was so shaken by the situation she was making other mistakes. She dropped a thermometer on the floor. She misplaced a syringe for a medicine update. I was terrified. How was I going to recover this mess? I needed to get the attending nurse back on “my side.” I wrote her a note, saying we had to  work as a team. I promised to be a good patient.

The transformation wasn’t instant, but suddenly she revealed her excellent English to me. Several hours later, we’re engaged in what can only be called an almost-philosophical discussion of my previously mentioned Scylla and Charybdis (sleep deprivation vs pain – see previous post).

The conclusion of that rather “deep” conversation was that she urged me that sometimes, I will just need to let go of the anticipation of the pain of the suction procedure, and let myself sleep, as that was more important. So, in fact, I slept. And each of her suction procedures improved over the previous, until she was barely hurting me more than the previous nurses had been. I got to be her practice subject for the procedure, and once I’d decided I was going to ally myself with her, it was as if I could stand the pain, better, too.

I ended up making a handwritten thank you card for her on a scrap of paper torn off from my pad, and we developed a good rapport.

I ended up entertaining her with cartoons. And I wrote my epipany in the lower right of this sheet.

The epiphany: “In the end I cannot stand cruelty and unkindness even more than pain.”

I realized with bleak clarity that the cringes and flustered unhappiness produced by the hitler nurse’s constant berations were more painful, to me, than anything I was experiencing physically. That is causing suffering in the human psyche, and for no good reason.

Arguably, my suffering of the body is nothing beside that – for my body’s suffering can be more easily ignored, being in the body, and further, it has a clear reason, which is the cancer and our feeble human efforts to combat it.

What reason is there to be unkind to others?

[This post and the others on this topic was written on paper in fragments or even less – single word prompts for ideas – at the time of the events – and assembled later. It’s taken a while to put things together… not through any particular emotional difficulty but just lacking the energy and willpower to do much in the weeks right after the surgery, in addition to a certain perfectionism with respect to the project which I’ve now managed to finally abandon .]

Fourth Shift Word: Lucidity

My fourth shift in the ICU was an evening shift. I was assigned a fairly inexperienced nurse and I think she’d drawn me because I’d developed a reputation by then of being a relatively “easy” patient. Probably this nurse, along with the now forgotten first shift nurse, was the nurse with whom I developed the least rapport. I became very interiorized during this shift, and my proprioception began returning and I finally figured out a clear map of my surgery points and tube insertion points.

The real problem I had, more than any other, during my time in the ICU, was with the phlegm and liquid draining at the back of my throat and down into my lungs. I’ve always had a bit of a snoring problem, and possibly (though never diagnosed), it’s easy to imagine I have had episodes of mild sleep apnea, too. So combine that with an oxygen tube through a tracheotomy and major surgery on my neck and throat and tongue, and you can see how this could become truly terrible.

I was becoming sleep-deprived, because I couldn’t just snore my way through the post-nasal-drip obliviously, as was my normal custom. The phlegm would build at the back of my throat, but it was sufficiently difficult and painful to swallow that each time I swallowed, I was unable to do it involuntarily, and would have to jolt fully awake. On the other hand, if I just let it drip down into my lungs and didn’t swallow, I would end up with liquid in my lungs such that every hour or so I needed “suction” (석션) – a truly horrible invention that the US Government has probably used in combination with their exciting waterboarding program. They shove a snakey suction device down through your tracheal hole and vacuum the juice out of your lungs. It hurts worse than most anything I’ve ever experienced even when done gently, and some nurses weren’t so gentle, either.

So it was a Scylla and Charybdis dilemma: either swallow every few minutes to redirect the phlegm to my stomach, and stay awake to do so, or not swallow and be vacuumed out every hour.

This evening, I had decided I preferred sleep deprivation to pain. So I began to experiment.

I found that I needed to swallow, on average, every 12 or so breaths. I began counting my breaths, and saying short affirmations on each breath. I had this idea that I could “sleep” between swallows. It went like this. I would fix a smile on my face – my “fake Buddha smile” as I call it. Then, begin:

1. breathe in. i am strong. breathe out.

2. breathe in. i am healthy. breathe out.

3. breathe in. i am fearless. breathe out.

4. breathe in. i am dreaming. breathe out.

5. breathe in. i am strong. breathe out.

6. breathe in. i am healthy. breathe out.

7. breathe in. i am fearless. breathe out.

8. breathe in. i am dreaming. breathe out.

9. breathe in. i am strong. breathe out.

10. breathe in. i am healthy. breathe out.

11. breathe in. i am fearless. breathe out.

12. breathe in. i am dreaming. breathe out.

 swallow.

repeat.

Over hours, I perfected this, and found that I could actually fall asleep, in a weird, weird way, saying this “mantra.” Each time I would utter the word “dreaming” I could feel my mind snapping into that REM state, and the coherence of my consciousness dissolving. It was quite remarkable. And yet I remained utterly “vigilant” of the situation around me – I heard the nurses, I heard what was going on, I felt the phlegm building at the back of my throat. And the images that would come in the “dreaming” moments were somewhat guided. I could dream about things that I chose – guided imagery.

I know I freaked out some nurses. I would have my eyes closed, sitting slumped in my bed, to all appearances asleep, but when they approached, before they touched me to take my vitals or do some thing or another, I would hear them, and I would snap “awake” and be regarding them, smiling. Utterly aware of my surroundings, yet sleeping, every 12th breath.

I have experimented a little with trying to repeat this experience since then, but I haven’t really pushed that hard, and it’s too easy, now, to “fall asleep” for real. Over time, I intend to explore the relationship between meditation and dreaming and lucid dreaming and semi-dreaming.

Here are a pair of sheets I’m pretty sure I wrote during my 4th shift.

This picture I’m trying to explain my post-nasal-drip problem.

This second picture is more of that, but also I think I made a very interesting “body pain map” in the center bottom – I was rating the pain of the different locations on my body – it really wasn’t that bad, note that I wrote carefully next to the head of the pain map “약없으면” which is my pidgin Korean for “when I’m not taking pain medicine,” while below I wrote “약있으면 다고통 0~2” = “when medicine all pain 0~2.” The pain medicine was working just fine.

[This post and the others on this topic was written on paper in fragments or even less – single word prompts for ideas – at the time of the events – and assembled later. It’s taken a while to put things together… not through any particular emotional difficulty but just lacking the energy and willpower to do much in the weeks right after the surgery, in addition to a certain perfectionism with respect to the project which I’ve now managed to finally abandon.]
Third Shift Word: Hermitage
My third shift, the Friday morning shift, I had a slightly pudgy nurse
with a friendly face and a halo of short red curly hair – in Korea this
isn’t as uncommon as you might think, what with hair coloring and
styling and perms and all that. She helped a lot. She was a bit
absent-minded though.
One time, I remember, she detached my breathing tube to clean around the wound there, and she left it lying loose, like a fat, translucent, hissing worm, on my chest, and ended up going away to do something else. It was too early in my stay for me to have the confidence I had later on to lift my arm and place the tube myself – my right arm was utterly immobile, and the range of movement of my left arm seemed limited by the weird holes in my body’s proprioception that I was experiencing. So the tube lay there for some 5 or 10 minutes, while I tried feebly to get my nurse’s attention – anyone’s attention – and point out the situation. I was voiceless, and so unless someone was looking, I had very little I could do to get someone’s attention.
When she finally came back and noticed, she shrugged and put it back in place, saying “sorry.” In fact, I wasn’t in any particular danger, it was just a breathing assist with oxygen, not a breathing replacement. Still, I was deeply alarmed at my sense of helplessness.
Later, toward the end of my stay, I realized I could get a nurse’s attention by holding my breath. This would set off the alarms on the breathing monitor and send someone running quickly. But that came later.
I decided during this morning shift, entrapped in these feelings of helplessness, that this ICU, and this cancer that had put me here, were my hermitage. Why, specifically, would I choose the word and concept of hermitage?
The korean word for cancer happens to be a homonym for the korean word for hermitage (ie. a small hermitage such as Buddhist monks will occupy – not a major monastery but a small mountainside retreat). Both words are the syllable “암” [am]. This time in the ICU was coming to resemble a sort of hermitage. I didn’t have my glasses. I was not allowed my phone. I couldn’t sleep well, not because of pain but because of post-nasal-drip.
My time in the ICU became my 48 hours in the wilderness.
I have always been fascinated by the idea of hermitage. I remember in my “Quaker” phase I would read these little Quaker journals in the meetinghouse library in Mexico City, and there was a series on Christian hermitages, describing different traditions and approaches, everything from Catholic to Finnish Orthodox to Coptic. I remember thinking, Quakers need hermitages, too. And I was then and remain transfixed by the figure of Thoreau (even recognizing that there were senses in which his hermitage at Walden was a “cheat”), or more contemporary writers like Edward Abbey with his Desert Solitaire.
I have often craved and intended hermitage, and there’s a sense in which my “8 hours of solitude a day” requirement is a sort of daily hermitage. The closest I came to true hermitage – the several months living on my uncle Arthur’s land in Alaska in the Fall of 1998, went badly, in retrospect, but it was more because I wasn’t prepared and wasn’t in the right frame of intention to pull it off.
So here, then, in the ICU, I had been gifted with a kind of social hermitage, yet surrounded by dying and suffering people and militaristic nurses.
Here are some pages from my interactions during the 3rd shift – including visits from Dr Ryu and Curt.
The first page is just a journaling effort, and the first entry is from 3rd shift and the second is from 4th shift, q.v.

This includes my visit with Curt.

This seems to be mostly my conversation with Dr Ryu or a surgical intern.

The nurse brought me a radio to keep me entertained.

[This post and the others on this topic was written on paper in fragments or even less – single word prompts for ideas – at the time of the events – and assembled later. It’s taken a while to put things together… not through any particular emotional difficulty but just lacking the energy and willpower to do much in the weeks right after the surgery, in addition to a certain perfectionism with respect to the project which I’ve now managed to finally abandon.]
Second Shift Word: Gratitude
The following shift (my second in the ward) was a night shift: there was a
very accommodating male nurse. He was communicative, competent, friendly, and even handsome, to boot. He frequently was off assisting the other nurses, too, so it was one of my “least attended” shifts. But when he was beside me his efforts were always exactly right.
The nurses in the ICU are hardcore. But they are human, they make mistakes, too. I felt so vulnerable to them, and I felt that it was becoming a sort of human-relations puzzle to solve how to get the best care possible, given how limited my communicative abilities were.
So meditating on how to solve the problem of maximizing my quality-of-care (and really, I was thinking in those terms even in such straits), at some point between my first shift there and my second, I realized that the key is gratitude. Not just felt gratitude, as in a prayer or affirmation, but expressed gratitude.
I began trying to remember to write “고마워요” [thank you] on the corner of each new page of note paper that I was using to communicate my needs, and anytime any nurse did anything, I would point to that word – saying, in effect, thank you for doing your job. Some nurses found it amusing, or perhaps it made them uncomfortable. I’ve realized in retrospect that the ICU nurses have to work very hard to avoid emotional entanglements with their patients – especially in a cancer hospital, many of these patients are dying, and many more are in such great suffering that they are unreachable through human contact.
The sheer volume of human suffering ambient in the large ICU room was constantly palpable – there was moaning, there was crying, there was screaming, there were men yelling like babies, “아파” [it hurts!]. There were doctors rushing around reviving patients who had stopped breathing or who were lapsing into comas.
Yet this little quirk of mine, of pointing at “thank you” and making eye contact with the nurses when possible, proved remarkable. The coldness faded a little bit, and they would take extra steps to make me comfortable, or even strike up “conversations” – me writing in my pad in bad mixtures of Korean and English while they phrased simple questions about my background or situation.
I was being forced to write everthing on sheets of paper – I did not
talk at all during my time in the ICU. I wasn’t able to remember to save
some of the papers from the earlier shifts, but I believe this paper is
from the second shift – it’s me introducing myself to my nurse and
maybe some other nurse or orderly.

i awoke from a dream at 445 am.

im with a large group of people from all different parts of my life. we are driving aimlessly around new jersey. michelle and jeffrey and i used to do that. we are a large group, so there are several vehicles.

everyone is comparing musical compositions. its like surfing music on youtube. people keep looking, all of us, over and over, at the sky. a storm is coming. but some of the music is haunting. we drive to a place that is like back in time. one of my students says cryptically that it is as he suspected.

a tall, elegant dark haired woman is sitting in a 1930s era car, reading a book. she doesnt notice us. there is a meadow and a tiny stream and a picnic blanket but shes sitting in the car alone. i walk over.

when i reach the car the woman has disappeared like a ghost. my friend curt points to the sky. the storm, he says. but the music im hearing is too beautiful. i lie down on the ground in the shade beside the old car, listening to music i can neither recognize nor forget nor even describe.

i see my friend bob standing nearby. why is everyone looking at the sky? i ask. he says, the storm. who is making that song? i ask. he says, i thought that was yours.

i woke up choked up, like about to cry. after about ten minutes beginning to write this down, the nurse came in saying ah already awake in half english half korean. doing blood pressure check etc. the morning nurse is very cheerful.