With my hand on the wheel and my brain in neutral . . .

Archive for December, 2018

Diary of My Death, Post #10

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Chemo #5

Day Zero – official diagnosis of Stage IV pancreatic cancer that has begun metastasizing in the liver
Day 1-1 Chemo infusion #1 (two weeks later)
Day 2-1 Chemo infusion #2 (two weeks later)
. . .
Day 5-1 Chemo infusion #5 (two weeks later)

So, it’s been 12 weeks since my diagnosis and prognosis guess of one year before embarking on The Biggest Adventure. One year? Well, with every other week being a Week of Daze courtesy of the chemo treatments, it is effectively only six months of life to live. I think it’ll be longer because the doctor says my test numbers are good and I don’t have any other pressing health issues many 60-year-olds have. However, I don’t think it would be prudent to bet on that. Also, I’m sure that as the cancer progresses the usefulness of my time will diminish. So, here at Week 12, I’m looking at nine months to go, which means about four months of being able to accomplish anything.

Shit! That’s not much time to clean up lose ends, prepare for the practical aspects of my exit, and hopefully make progress on any of my projects (such as the sequel to my novel, Jack Poww and GO-Girl.) Shit! Okay, okay, I have much to do, so I must get busy!

For this round of chemo, I had the company of my nephew, Danny. He’s a grad student (the first in our family, yeah!) and on holiday break, so he was able to make the drive here and spend a few days. It was very good to have the company. I have friends, but I do live alone, so having family with me – whether or not I am ill – is a subtle, soul-soothing balm. Although I was able to rest and doze at my pleasure, with him here I was more active. Connection to other people, and especially being in their presence, is very good medicine.

He drove me to the chemo and sat with me all damn day. During the last part of the infusion, the “swelling, itchy eyeball” thing happened again (and would remain for a few hours.) My thumbs acted up again, more numb and uncooperative than last time. That also lasted only a few hours, but I did notice in the days in the days afterward that sometimes my fingers felt a little funny. It is hard to describe, just an odd feeling, especially during the first few minutes of sitting down at this keyboard. Also, beginning during the last part of the infusion, came the squirming sensation all through my guts. It was like something was very slowly crawling around in there. This weakened but didn’t disappear until a day and half, two days after treatment.

After any of the chemo treatments I usually come home pretty tired and take a nap immediately. Part of the infusion is anti-nausea meds, and part is steroids, though I’m not sure which kind. I do not know if it is the chemo itself or the steroids, but neither makes Body comfortable. Imagine being awake and working for 24 hours straight, pumped up on a gallon of coffee: you’re quite aware that your body is tired and wants sleep, but the megadose of caffeine won’t let you drift off easily or deeply. It seems to be more like that with each treatment.

So I didn’t get much sleep the evening or night of this fifth chemo. I would rest my eyes and happily descend into half-sleep, that wonderful state of mind where you have one foot in reality and one in dreamland. For the most part you don’t feel your body, and although silly, non-sequitur thoughts run rampant, you’re consciously aware of them. (If I ever get trapped in a multi-year coma, if I were stuck in that state of mind, I wouldn’t mind at all!) Images of nondescript faces in blue Xray format approached my closed eyes in a slower but similar way the stars come at the camera when a spaceship kicks into hyperspace. Cosmic vistas, blurs of twinkling swashes of color, did the same, probably due to watching the movie “Interstellar” the night before. (Great movie, btw. It’s set in space and on other planets, but it’s really about how parents make the best decisions they can at the time and how it might take a lifetime for their children to accept that.) So, although the first night was uncomfortable and not truly restful, it was somewhat amusing.

Continually getting up almost exactly every two hours to piss also preempted good, solid, deep and refreshing sleep. The days passed. I didn’t do much at all beside sleep, snack, and snooze. I listened to music, I listened to audio books, I stared at the overhead paint (already dried.) I watched DVD movies from the library, watching several of them in the two sessions because my mind would lose the story halfway through. With Danny here I was definitely more active, but “more” is a relative term. By Saturday I was still sleeping most of the time, even through the day via sequential naps. I had no energy to do a damn thing, even to take a shower, nor did I do anything that required even a little bit of focus (like watching a DVD movie the whole way through). Thinking and deciding about important matters was pretty much out of the question. It was another Week of Daze.

I began to wonder if the torpor was due to the chemo treatments alone or if my old companion Depression was once again whispering from the shadows and dark places in my mind. I won’t go into all that now, but I will mention that clinical depression is a sneaky, insidious, ghostly bitch of a demon.

I am growing acceptance that half of my bi-weekly treatment cycle (and therefore half of my remaining calendar days) makes me nearly totally useless. Personal productivity is reduced to accomplishing little more than doing the dishes and overcoming constipation. I’ve begun to wonder when I will cross the line into mostly just existing and how I will know when it is time to gracefully bow offstage.

At the other end of the spectrum, I keep remembering about the time from 25 years ago when I rushed a couple of hundred miles to see my mother in the hospital. At this point she had beaten non-Hodgkins lymphoma into remission twice and was on her third go-round. She has always been not just thin but downright skinny, and still, somehow, when I saw her in the hospital room she looked physically deflated. Her skin was cartoonishly yellow from jaundice, and to me it was obvious that she wasn’t long for this world. I thought she had only hours, maybe days. Well, she came back and lived for another year and half. And my father, who had two open-heart surgeries and other issues, had hoped to make it to the year 2000 but lived all the way to 2016. Maybe I also will be around for significantly longer than the doctor’s statistical guess.

Go to next post –> Diary of My Death, Post #11

Diary of My Death, Post #9

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Chemo #4

My infusion meds are the same, but it seems each successive treatment is easier to take. Well, the treatment days are the same – boring, boring, then finish with a hell of a bother – but the days afterward are easier than the preceding round. I don’t know if this is because my body is more familiar with the drugs or if I am more familiar with and accepting of the effects. (As always, in life there are no isolating the causal factors and there is seldom a solitary agent in play.)

This round, even though I was short on sleep the night before the infusion, when I got home I slept for only 1 ½ hours. I watched a movie, took a 3-hour nap, and at 2 a.m. got up, made tea, and turned on the computer. I was sleepy but could not sleep.

The chemo side effects made themselves noticeable. First, during the final IV bag at the infusion, my thumbs quit working. I could move them, but they were suddenly clumsy and numb. Holding anything took intentional commands and a little patience. It was a weird, Twilight Zone sensation. Gratefully, it passed in a few hours.

Also at the infusion, during the final, most potent bag, there were no foot cramps as before. There was the hot but clammy skin, for sure. The new thing – and I’m not making this up! – is that I had the feeling my eyeballs were swelling. Just a little, just enough to make themselves known as I moved themselves around in their sockets. And they were slightly itchy. Again, a weird, Twilight Zone sensation. (Googling it revealed it is real and due to water retention.)

Texts to friends:

This round of chemo is making my eyeballs swell. It’s by about only 1.35%, but that’s enough to make me feel like a lizard. If my eyeballs start bulging out and moving independently, there’s no need to be startled. Occasionally they did that before, y’know.

Y’know how your foot “falls asleep” if you sit on your leg the wrong way? Well my ASS fell asleep! I could tell cause I kept hearing it snore.

The next neuropathic disturbance was my left quadricep, the front muscle of my left thigh. It would tighten on its own, especially when I was lying in bed. My whole body would be relaxed and shifting into sleep mode, but I would notice my left quad tensed. I’d command it to relax, and it would, but then moments later I would notice it tight again. It seems strange that of my entire body it was only the one muscle that was doing this. I know people grind their teeth in their sleep, so is this one leg muscle a similar thing or a direct effect of the chemo poison?

I am quite aware that there is very complex and strong connection between body and mind (though so many people believe their mind and maybe their soul is separate from their brain and body), but lately, because my body is surprising me, I’ve been thinking of them as distinct entities. I hear myself thinking things like, “I want to do something, anything, but Body says we must sleep again.” Ad-hoc modifications of the Good ‘n Plenty candy jingle from my youth run around my mind like earworms: “Body says, gotta get up and piss, Body says, do it NOW or make a mess, Body says . . .”

The cancer tumor itself is also gaining its own identity. The image of an organic PacMan – not solid cartoon yellow but a marbleized green-slime-and-phlegm-puss color (with feather tip brushes of burnt orange), and with a twisted, malevolent mouth and one bloodshot, insane eye – invades my consciousness more often than I like. It doesn’t have a name yet, so for now, more often than anything else, I call it, “Little Fucker.” It lives under the right side of my rib cage, right on my pancreas and liver.

As the chemo week progresses, so does the amount of dreams in my sleep. Apparently, the chemo, or Body dealing with it, results in a brain barely in gear. When even your subconscious isn’t cooking, and all you want to do is sleep, you’re real close, too close, to merely existing. Again, one foot into The Twilight Zone . . .

The days pass through a series of naps (sleep, snack, snooze, repeat.) The clock is totally irrelevant. The days of the week become the Week of Daze. Gradually, level by level, my mind returns. By Thursday or so (Monday infusion), I don’t want to sleep, but I don’t want to work. By work I mean anything productive, such as this blog. By Friday or Saturday I realize that regardless of what Body wants, I don’t want to sleep. I want to do something, anything. I’m bored, and that is a very good sign. Body and Mind want to participate in life!

This feeling reminds me of the terrible time I was trapped in a sensory deprivation chamber called an “office.” No kidding, years ago, after taking a new job, I was shown to my desk, which was alone in what before must have been a large closet. No windows, dingy paint, poor fluorescent lighting. If a person weren’t depressed before spending 40 hours a week there, he surely would be afterward! The work itself wasn’t the least bit social (even through email!), so I would go home not wanting to go to sleep and end the day. I distinctly remember repeatedly having the thought, “I didn’t live enough today.”

So, yes, being bored is a damn good sign that your heart is still in the game. With a two-week chemo cycle, it seems from now on I’ll be “one week off, one week on.” At least I’ve had some practical training at this!

Go to next post –> Diary of My Death, Post #10

Diary of My Death, Post #8

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Chemo #3

Text to Bill

  • Chemo today. Starts cozy with IV under pre-warmed blanket, hours later I feel like frog in water that has gradually gotten too hot, just want to get out of the room, out of my skin. Zahn brought me home, I took a nap, life is good again. Well, almost. I’ll take it gladly, though. Hot tea, crackers, a movie on the laptop, a little real food later.

During the infusion asked the nurse about the relative strength of my chemo regimen. I noticed that some of the other patients were in and out in an hour while others were there all day. The differences were no doubt due to different kinds and stages of cancer. My infusions were about 6 hours, so was my treatment medium strength? She said, “Uhm, no, you’re getting an intensive regimen.” Every week or so I gain a new level of understanding about my situation.

From the nurses (who are quite pleasant and professional) I learned that the chemo targets fast-growing cells, which makes sense since cancer is nothing more than cells reproducing much too quickly and inaccurately. The problem is that “fast-growing cells” includes some non-cancerous types such as hair roots (thus the hair loss) and the linings of your esophagus and bronchial tubes (thus the quasi-heartburn.) Aha! I don’t mind losing the hair on my head (I’ve been partially bald for nearly all of my adult life), but I don’t like losing my beard. It is thinning and someday will be best if shaved clean. The good thing about my hair loss is that the Amazing Monkey-Man Bean Sprouts in my ears are gone, as are the pesky hairs that always seem to poke out of my nostrils even within hours of grooming. It’s all sort of like evolving into a futuristic spaceman, no need for any hair, no need for even a body . . .

The sensitivity to cold has increased, even to room temperature food. The first table grape will cause me to make me a face, and rinsing my fingers with bottled water will make my fingers tingle a little. Going outside in 45 degree weather will make my fingers tingle a lot, even though I’m wearing gloves.

For four days, mostly I slept, though always just a couple of hours at a time. The clock meant little. Sleep, snack, snooze, stare at the wall, repeat, repeat, repeat. Every day I set out four water bottles to make sure I’m drinking enough to allow my kidneys to flush the chemo through, so therefore I wake up every two hours (almost exactly!) to urinate. A three- or four-hour nap is notable enough to make me feel as if I actually achieved something!

My treatments are on Mondays, on the portable pressurized bottle that slowly and steadily pumps anti-nausea meds into me through a plastic port installed under the skin near my clavicle gets removed on Wednesdays. I can take a shower then, but since I (a) have no energy, (b) live alone, and (c) have barely moved between bed and table, for every treatment cycle I usually wait until Thursday or Friday to take a full shower. This time, an odd thing happened.

There I was, luxuriating in the hot wetness and steam, soaping and scrubbing myself. Naturally at some point I washed my buttocks, but as my hand slid over one cheek something felt different. I put the washrag on the rack and grabbed my butt with both hands. HEY! This isn’t MY butt! I know my own damn butt; I’ve had it my whole life! This isn’t MY butt! I haven’t lost weight yet, so maybe it was just the loss of muscle tone. For the last several weeks I was not on my feet nearly as much as usual, so that had to be it. What a weird feeling, though, to be slightly startled by changes in your own body.

Go to next post –> Diary of My Death, Post #9

Diary of My Death, Post #7

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Just a few texts to family and friends:

  • The silver lining in all of this is that I have found a marginally rash but very effective way to get away from the worldwide embarrassment of Trump! Ha!
  • Ya, I’ve had a tight run of bad luck lately. First I broke my eyeglass, then my Jeep frame rusted out, and then I got diagnosed with cancer. All of this really upsets me because those eyeglass frames were my most favorite-est, ever! Everything is expiring!
  • Y’know, with me sleeping only two hours at a time, I find a special satisfaction by shutting down my laptop by clicking “Sleep.”
  • Woody Allen: “I don’t want to achieve immortality through my work; I want to achieve it through not dying.”

And a few stray thoughts:

As winter is rolling in like a huge, gray grindstone, I realized I’m getting tired of living on a boat. When a day and half of strong winds blew all the water out of the creek, my boat settled into the mud, and I had to climb up out of it to the dock. I thought, “Y’know, even a tiny apartment with central heating would be sweet. I’m about ready to move off the water. Ya, I think this will be my last winter on my boat.” A few moments later I thought, “UH, YAA! This probably WILL be my last winter on my boat! DUH!”

I am sick, and I’m uncomfortable, but I’m not in a lot of pain. Mostly it’s just a dull ache below my ribs on my right side. There are, though, those unexpected little gasps – like a single hiccup – that cause the ache to sharpen and bite. (Because deep breaths awaken the ache, I think the surprise gasps are serving as substitute yawns.) Those gasps bring a momentary pain that makes me cuss, and then I’m back to normal. I picture the source of the ache and pain as a raisin-sized organic PacMan eating my guts. It is chewing me in super-slow motion, but it is steadfast in its mission to make me hollow and lifeless like a mannequin. It will never stop. It will grow from the size of a raisin to the size of a cherry, then a grape, then a plum, then a peach, then . . . well, eventually, the size of ME! I’ll become a 180-pound tumor slurping down the hospital hallways, a big blob moving forward vaguely like a PacMan . . . and some bespectacled, slightly bored and annoyed hospital admin person walking backwards while looking at a clipboard, saying, “Sir, you have been officially discharged. You must leave the premises, and you must immediately stop wandering the hallways and absorbing staff members. If you cannot arrange your own transportation . . .”

Chances are that as the cancer grows, my time will become progressively useless. It has occurred to me that whether I have less or more than a year, that fuck-shit PacMan is NOT going to leave my body, ever. No shit, man, the clock is ticking. I can’t let myself forget that. I can’t allow myself to waste time on petty problems or negative emotions. I’ve often said that for all of us, all the time, it is always later than we think it is, but for me, right now, no shit, man, the clock IS ticking.

Go to next post –> Diary of My Death, Post #8

Diary of My Death, Post #6

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Now and then people have called me crazy, but I say I’m crazy like a fox: because of my cancer, my piss-poor retirement preparation DOES NOT MATTER! Ha! I WIN!

(Updated for clarification)

Except for the list of friends with whom I’ve gradually fallen pretty much out of touch, I’ve shared my cancer news with almost everybody who gives a damn. Those phone calls are not easy either to receive or to make. The way some friends – old and new – react is heartwarming; the way other old friends react is not. They make it easier to let go.

I am reminded of my mother’s nearly lifelong friend, Judy. They weren’t nearly as close as they were as teenagers, but they still thought of each other as friends and would get together a couple of times a year. As my mother’s health declined, Judy visited less often and then stopped altogether. Eventually my mother confronted her about it, asked her why she wasn’t visiting and not returning most phone calls. Judy told her that she just wasn’t comfortable being around terminally ill people. Oh. Did Judy think terminally ill people were comfortable being terminally ill? I remember my mother being upset about Judy, but only for a very brief time. After the surprise and shock of it, she shrugged her shoulders and said (in so many words), “Eh. One less reason to keep fighting through these crappy chemos.”

Between then and now I learned M. Scott Peck’s definition of love: “The will [not the desire but the decision, the committed mental and emotional state] to extend oneself for the spiritual benefit of another person, or oneself.” (Spiritual benefit encompasses physical needs, too: to provide a basic minimal happiness of your children, generally speaking first you have to feed, clothe, and house them.) So, yes, if someone isn’t willing to push himself out of his comfort zone to bring you a little soothing company to you, well, no, you won’t be leaving behind as much as you thought you were.

Speaking of letting go, my cancer has helped me let go of a worn-out habit of mine. It’s not at all an uncommon habit, so I’ll elaborate here. We all develop coping strategies that seem like a good idea or even a great idea at the time, and they may very well be the best strategy we can muster and apply in our circumstances, but we all tend to carry those strategies into our future. They become subconscious habits and no longer appropriate, and, if we learn and grow, we see that our current circumstances allow for more evolved and healthy behavior. So, although for years I truly have been working up to letting go of one particular worn-out habit of mine, actively working on having my conscious puncture that habit’s poisonous abscess in my subconscious, it was my cancer that helped me do it. That and the lottery.

Last month there was an extra-large lottery prize, I think near a billion and half dollars. My nephew and I bought one ticket each just because if we were ever going to win any lottery, what a coup it would be to win this one! Neither of us did, no surprise. We talked about it several times over a few days, each of us separately, in quiet moments, daydreaming about what we would do if we did happen to win. Buying yourself luxuries is easy; giving away big money is much more complicated. Would a sudden infusion of mega bucks help a loved one rise above his problems, or would it only enable much more dramatic manifestations of those problems? The mix of those daydreams and conversations about the necessary disbursement of imaginary funds was somehow solidified by the knowledge that I would not be around to see what happened, to see how the receivers handled the gifts. Somehow, this hypothetical exercise coupled with the reality of my impending death helped me get rid of a worn-out habit by moving my mental thoughts into my present-tense emotional working repertoire. I wish I had managed that at least 30 years ago. Maybe this post will help some readers further along the path.

The habit? For way too long I’ve searched for solutions to other people’s problems instead of addressing my own. The key word there is “instead.” Offering help and solutions to help other people is a fine thing to do, in itself. A self-centered life isn’t much of a life. However, instead of addressing my own shit (because we all have some shit in our brains and hearts), instead of investing my energy into improving and refining my life skills, I’ve spent way, way too much time responding to other people’s preventable problems.

It’s a two-step issue. It first shows itself in making the tangible or practical parts of other people’s lives hold together. (“Since you asked, no, you should definitely not buy THAT used car.” is followed by “Hey, I bought THAT car and it has all kinds of problems, so will you fix it for me?” I fix the car because no car will too soon mean no job, which means more and larger problems, so I try to stop the cascade.) Before you know it, the practical side sneakily grows into the subtler issue of the patterns in our lifestyle choices. (“Damn, you’re very drunk again so I’ll drive you home and no doubt we’ll cancel our plans for tomorrow morning.”) There is an invisible line between helping someone else and becoming, yourself, an enabler.

I do not claim to be a fountain of knowledge and wisdom (evidence points to the contrary.) However, I have learned a few things about living life. I’ve spent way too much of my life leading (and, yes, I admit it, sometimes dragging) other people’s horses to water and trying to get them to drink. I admit, in younger years my urgings were clumsy, oafish, and even obnoxious; only with the accumulation of years did I grow into using gentle nudges and quiet encouragements. (Well, I like to believe I’ve become gentle at it, anyways, at least a little.)

For many years I’ve known the old saying, “Never try to teach a pig how to sing: it wastes your time and it annoys the pig.” With each passing decade I’ve been getting better at it, but finally, finally I think I “get it.” Go ahead and spread as many seeds of whatever wisdom and solid advice you may possess, but accept that those seeds will take root and sprout and grow only if, when, and where (with whom) the conditions are right. Certainly, you can help others, but the only person you’re ever going to “fix” in any appreciable way is yourself. Quit trying to live loved ones’ lives for them – of course I’m talking about well-intentioned involvement, not manipulative control for selfish ends – and live your own. Don’t be self-centered, but teach what you’ve learned through the best way: first by example and second by explanation of what you’ve discovered for yourself. Lay it not in their laps but on the table, and when they’re ready to pick it up, if ever, they will. Don’t distract loved ones from dealing with their demons by forcing them to fuss with you.

All of this was moved out of my head and into my heart by the cancer I did get and the lottery prize I did not win. The cancer reminded me that my loved ones, especially the young ones, will have years without me being on the chessboards of their lives. The daydreams of virtually unlimited finances via a lottery brought life to scenarios of everyone I know. Sometimes I could imagine them flourishing; other times I could see them foundering. The latter was no fun, imagining loved ones’ playing the same poker games of life as now but with higher antes and not necessarily higher skill.

Mark Twain said, “Generally speaking, people are about as happy as they make up their minds to be.” I say the same applies to being skilled at the art of living. Some people want to get a new life while stubbornly refusing to let go of the old one. Except for the meaningless decorations and distractions that make up the image you present to the world, you can’t change your life without changing the way you live, the way you move through every day, the way you think. Generally speaking, people are about as skilled at the art of life as the amount of wisdom they make up their minds to gather and apply.

Furthermore, my loved ones’ lives are different from mine. They have different strengths and weaknesses, different heartaches and desires, different challenges, different circumstances. They have different experiences, different personal histories, and therefore a different perception of reality. My advice may simply not apply. They have their own grand adventure to explore.

Finally, finally, I think I “get it.”

Go to next post –> Diary of My Death, Post #7

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