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

Diary of My Death, Post #14

This is from one of the following list of great talks about dealing with death:

The Top Five Regrets of the Dying
Lisa Greig

  1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.
  2. I wish I didn’t work so hard.
  3. I wish I had the courage to express my feelings.
  4. I wish I had stayed in touch with my friends.
  5. I wish I had let myself be happier.

Catch and Release – Finding Life in Death: Michael Fratkin at TEDxEureka

Death Can Positively Impact Your Life | Valdis Zatlers | TEDxRiga

Dying Well: Robert Macauley at TEDxRushU

Lisa Greig is dying, but then again so are you | Lisa Greig | TEDxSaskatoon

What’s Wrong with Dying? | Lesley Hazleton | TEDxSeattle

TEDxBrussels – Peter Fenwick – The art of Dying Well

More to dying than meets the eye: Martha Atkins at TEDxSanAntonio 2013

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Diary of My Death, Post #13

Day 8-? Chemo infusion #8 (two weeks later)

Oh, what a week it’s been. My documenting it (well, describing it) might be valuable to you because there’s clearly a lesson to be learned.

Okay, the chemo treatment itself was relatively easy (more on that below.) I felt like a boy knowing for days that he was in for a beating from a bully after school but then getting only one not-so-hard punch to the shoulder. What, that’s it? We’re done? Oh-kay . . .

The problem was that I contracted a cold. The timing of exposure and infection is uncertain, but the symptoms showed up after the chemo treatment, on top of the chemo hangover. I wasn’t in any pain per se, and I don’t mean to discount the uncomfortable existence of anyone with chronic pain due to illness or injury such as spinal trauma, but I have to say, I was truly miserable. No, no: I was fucking god-awful miserable. I was shove-my-head-in-a-food-disposal, somebody-shoot-me-please, fucking god-awful miserable. I will explain why in a moment, but in case you’re in a hurry and you want just the takeaway lesson to be learned, I’ll give that to you now.

Here it is: if someone is undergoing chemo (or has a “previously engaged” or compromised immune system) and someone else has a cold or virus or whatever, KEEP THEM APART. If someone’s feelings get hurt, or if someone’s time is wasted by driving for hours to visit only to be told not to take off their coat but turn around and step out of the house, well, tough beans. They’ll get over it much easier than the chemo person will get over the cold.

Remember, a cold that is a mere inconvenience to you might be a real ass-kicker to them. Furthermore, it may open the door to bronchitis, pneumonia, a flu, a recalcitrant sinus infection, et cetera, and – no exaggeration – the burden of a secondary illness can drastically affect remaining lifespan.

Understand this: the days or weeks of being useless while ill is REAL time. How real? It just might be a solid-digit percentage of the functional time they have left. Yes, a careless infection can have a very serious cost.

Suggestion: even with the best of intentions, do not coerce the patient to go anywhere to do anything. Take them out of the house ONLY to where they want to go. Yes, a change of pace and scenery is a good, helpful thing, but it is not always worth it. Take them out of the house ONLY to where they want to go.

In case I’m being unclear, I’ll try this phrasing: if you have a cold and you know someone undergoing chemo or otherwise has a compromised immune system, STAY THE FUCK AWAY.

Of course, people do unknowingly infect each other with colds and flus and all kinds of stuff, and there’s no real fault in that. Also, we can’t hide in our houses and never go out in public for fear of common germs. But, we must remember that . . .well, people are stupid. The other morning, outside, immediately after I recovered from a hacking coughing fit, and with my voice raw, my neighbor wanted to give me a hug to make me feel better. She has a very sweet heart, but, uh, ya, well, let’s leave it at that: she has a very sweet heart.

Incidentally, I am stupid. Last week in a bar / restaurant my group rendezvoused with two tables of friends’ groups, and there was a lot of handshaking and hello-hugging going on, and I really should have tried politely to abstain from all that contact. “I’m sorry, my doctor told me not to touch people while I’m in treatment.” Most everyone there knew my circumstances, so it would have been easy. But, I am stupid.

So, exactly where and when I contracted my cold I am not certain, but it doesn’t really matter. I should have been more careful. I should have made a fuss, purely out of prioritizing a little self-care and self-protection over going with the flow and easing other people’s social comfort. Remember my earlier post where I said that I’m sorry, but yes, my cancer thing is about me? Because of my cancer you don’t have to change a thing, but because of my cancer I do have to change a lot of things – what I do, how I do it, when I do it, and so on. I forgot that. It is up to me to decide which “auxiliary infection risks” I want to take. Do I want to expose myself to germs outside of my home and in a restaurant? Sure; I haven’t heard of any pandemics around here lately. Do I want casually to touch or be touched by 20 people at the restaurant? No. No, not at all. NO. I am stupid. Dammit again.

I did not have a fever, and my sinuses were not bursting with congestion, but I did have a nasty post-nasal drip that created an evil cough. Yes, an evil cough: I began searching my memory to recall if I had in fact made some foolish deal with a psychopathic wizard to trade my breathing for coughing. It seemed that for a week if I were conscious, I was coughing. I’m not talking about a little clear-your-throat cough: it was the kind of cough that makes you wonder if you’re taking in enough air to prevent passing out. That becomes very tiresome very quickly. It felt endless, as if I were in some Twilight Zone episode where punishment for my sins was to be committed to a purgatory of being able to do nothing, not a damn thing, except to cough somewhat violently. On top of the chemo hangover, the damn cough drained my energy, my patience, my optimism, and it stole my voice. It was evil.

According to my medical professionals, antibiotics would not have helped. It was not a bacterial infection; it was a virus (no fever.) They gave me some high-potency, industrial-strength cough syrup and told me I had to wait it out. So, I kept telling myself it’s just a cold, it’ll pass, and surely I’ll feel better the next time I wake up. Uhh-uhhhh. It has taken more than two weeks to get to having only a residual cough.

During the worst of it, I could get no significant sleep. One night, one entire night, I was on a 10-15 minute cycle. I’d sleep for 5 minutes, then cough for 5 or 10 minutes, over and over and over again. When I’d awaken I’d glance at my red LED clock, my hell-red LED clock, hoping that I’d gotten some rest and made some clear advances toward the next day (and the unfounded promise that I’d feel better.) After several cycles of gaining only 10-15 minutes toward dawn, when I looked at the clock and saw how little time had passed, I thought You have GOT to be kidding me! Once again, apparently, I was in a Twilight Zone Purgatory of Endless Repetition. A few minutes of sleep, then a few minutes of coughing and cursing in what my raw throat made sound like Klingon rap verses.

After a long night of this, the cough lessened. It didn’t end, but it wasn’t as strong. Several times I awakened and did not immediately cough. When that happened, I’d sneak a one-eyed check of the clock. I didn’t dare move a single muscle, and I made sure I opened my eyelid “quietly.” I mustn’t disturb the phlegm, The Mighty Phlegm. Fear the Mighty Phlegm.

During this illness my state of mind flip-flopped between the somber and the absurd. Because of the near impossibility of sleep and the resultant evaporation of all energy, repeatedly I wondered if my current existence (with the addition of physical pain) was similar to that of all people in the last stage of any terminal illnesses. If so, I gained a new level of understanding for the compassion of medically allowing nature to take its course. Why use medical technology only to extend useless misery? I’ve seen people in nursing homes that were being kept barely alive simply because the family didn’t have the understanding or the courage to withhold medicines that did nothing to improve the ill persons’ state, and what to me seemed sad or even terrible then now seems horrific. I am not suggesting euthanasia, if for no other reason than I don’t know how it could be responsibly regulated. I am saying only that when there is no hope of recovery, allow the person to go as soon as possible. Yes, if my Week of Misery was a preview of coming events, it did generate a bit of dread.

On the flip side, sometimes the exhaustion bore silly, amusing lines of thought. If you know me at all, you know that even at age 59 the boundary between reality and my reality is rather sinuous, fluid, and intermittent. Here’s proof: As Rod Serling said, Submitted for your approval . . .

After hacking and spitting sputum into the sink, sputum that was so thick it was like a blob of grey glue instantly bonding to the sink’s smooth stainless steel, as I lied on my back with my head and chest inclined, I wondered about the extent of the congestion in my sinuses. While thinking about the porous bones of my facial sinuses, imagining the terrain of the tiny interconnected cavities from the perspective a single mucous cell (mu-ci?), I remembered the 1966 movie Fantastic Voyage (with Raquel Welch and Donald Pleasance.) In the movie, an entire submersible airship was shrunk down to microscopic size so it could travel through the U.S. President’s body to laser repair an embolism in his brain. The then state-of-the-art special effects did a fine job of depicting the human anatomy, and there was drama as the ship had to battle leucocytes (white blood cells that attack germs and other foreign bodies) and carefully time its perilous traversal of thundering, crushing heart valves. So, memories of the movie led my sleep-deprived mind to wander on an imaginary microscopic trip through the soaring caverns of my sinuses.
My imaginary microscopic traveler was an instant mix of the characters from Fantastic Voyage, Osmosis Jones, and Calvin and Hobbes’ Spaceman Biff. Probably due to prior knowledge of real-life cave stalagmites and stalactites, perhaps the only recognizable discovery in my Caverns of Sinus Sickness were the fantastical formations of squat pyramidal boogermites and above them their accompanying long, drooping boogertites. Also notable were the several harrowing escapes from rabid bands of tribal mu-ci, one of which glowed dull green in the dark (the dreaded Sinoids.) Crossing the slow-flowing but definitely dangerous River of Yellow-Green- Grey Glue, not getting grabbed by the instant tornadoes near the Nasal Hocker waterfalls . . . my little traveler had quite the adventure!

Eventually the sound of my breathing interrupted my diversionary daydream. I noticed that with each exhale I was producing a nasal squeak not altogether unlike that made by stretching sideways the neck of a deflating balloon. Hmmm. A little experimentation and whaddya know, by changing the position of my head, just like with manipulating a balloon I could alter the sound of the squeak . . . Oooh, a new game!

Many minutes later, I had a thought: And people wonder why I don’t have a woman . . .

Okay, a few notes on the chemo treatment #8 itself, otherwise known as a dancing lesson at the Addam’s Family Spa and Resort:

This was the third treatment with reduced dosage. As always it was only the last bag that prompted any noticeable reaction from my body. Even before I left the infusion center I felt a change not in my vision but in my eyeballs. As before, they felt slightly bloated. Also, they felt just a little itchy, as if there were a tiny amount of very fine-grained sand in the surrounding fluid. Also with the last bag of chemo, it felt like all 25 feet of my intestines and other organs were slowly squirming and resettling into position. It didn’t feel like cramps or gas or whatever, just that everything in my gut was disturbed by the chemo and resettling like a nest full of animals stirring during sleep. Speaking of sleep, although I was very tired when I made it back to my home, I could take only a half-hour nap. I was restless until after midnight. As before, I wasn’t in any real pain, just overall uncomfortable, and if I could have stood up and run from my own body, run right out of my own skin, I would have.

There were only four more chemo reaction symptoms, with three of them no surprise. There was renewed cold sensitivity in my fingers and feet, and what feels similar to heartburn in my throat, both in the esophagus and bronchial tubes. Again my thumbs worked funny for the first few hours after treatment, along with my fingers feeling a little odd for maybe 36 hours. The new thing was in my legs: the involuntary tensing of the left quadricep happened hardly at all, but it was exchanged with the feeling that (when I was horizontal) my legs were floating a few inches in the air. Once, as I was drifting off to a nap, I had the feeling my legs, followed laggardly by my body, were accelerating feet-first to somewhere far away, sort of like in the movies when a starship goes to warp speed. Weird, I know.

The following days were “blessed” with the addition of the bad cold and evil cough described above. It was a hard week, and it exhausted me. The next week was not free of the evil cough, but it was clearly on its way out. It was leaving while kicking and screaming and clutching at the doorjambs, but it was on its way out. I was not, however, quick to be on my way up. For five days or so I was pretty much useless. I had no energy. Body said I could not sleep, but Brain said I could not think. I didn’t want to follow the plot the whole way thru a movie or even a few scenes; I wanted only car chase explosions and one-liner jokes, series of short YouTube videos that required vision more than thought, and so on. The exception was news about Trump, but that is included under simple comedy, I suppose.

I spent I don’t know how many hours on my back just looking at the ceiling, no music, no audiobooks or Netflix, nothing but silence. Sometimes I listened to the melody of rain on my roof (remember, I live on a boat, so my roof is not soundproofed by an attic space) or wind in the rigging of the sailboats docked next to me, but mostly was only silence, and I wanted it that way. My brain was idling comfortably in neutral, with random thoughts just dribbling through my mind like slow raindrops sliding down a window pane. Although I had no energy at all, I was warm and fairly comfortable, and I faded in and out of naps, so for me, for days, time barely existed. I remember awakening from a nap and noticing that my mouth was half open and there was an open pack of throat lozenges propped up in my loose fist, and I remembered finding my aging father resting in the same way in his recliner.

I knew I had turned the corner, though, when one morning I awakened and began thinking of what I wanted to do after coffee. Wanting to do anything, anything at all, was big progress. I fell back asleep, though, but only half-way: I was doing something at the stove but then realized I was only dreaming of it. I opened my eyes and found myself still lying under the blanket, the weak wan light of daybreak coming in through the windows, and I felt so perfectly warm and comfortable that I hardly felt aware of my body at all. I knew immediately that I had begun returning to the Land of the Living.

Diary of My Death, Post #12

“Stop the car! Let me out!” That’s what I told Mike and Anne on the way home from the hospital where I had just received my latest chemo treatment. I added to Anne, “Make him stop talking! Keep him away from me!”

You see, Mike had just informed me that maybe I should minimize my consumption of cookies in particular and sweets in general, perhaps even reduce my sugar consumption to zero. Him speak with forked tongue and wild eyes! A strange spirit shares his breath!

Ya, I’m joking, of course. As strong as my “sweet tooth” is, I’ve long had it mostly under control. With no change in heart rate or blood pressure I can walk right past cookies and candy in the grocery store; and with no damage or even debit to my self-discipline I can buy cookies, bring them home, and leave the package in plain sight unopened for weeks or even months. But once I open the package . . . even a Big Bubba’s Family-Size Expedition package . . . pfffftt! Like fresh air in a fart factory . . . ain’t nothing but a fond memory.

Anyways, Mike, being the helpful, nice guy he is, sent me a link to this very interesting TED talk. Hmm . . . . Can we eat to starve cancer?

Chemo #6

Day 6-1 Chemo infusion #6 (two weeks later)

THIS was a good day, even with the chemo! Once a month, with every second infusion, I also see my doctor. This time he gave me good news! He got the results of my latest CAT scan (which are taken every three months), and they show that Little Fucker (the cancer tumor) has shrunken! I sort of knew that already because I could feel a difference in the ache under my right ribs, but he gave me some very encouraging numbers. I forget all the measurements he rattled off except the most dramatic of them: one dimension was ONE THIRD of itself from three months ago, at the beginning of my treatment!

This gave me a reasonable belief that I will be on the “more” side of the original guess of more or less a year to live. When I was first given my diagnosis, I accepted it rather easily in part because I already knew that pancreatic cancer doesn’t play; it can be treated but never beaten into full remission. At discovery mine was already at Stage IV, so I’m pretty sure it will be what kills me, but now I have hope of more time. Maybe I can achieve a few of my projects, and maybe I can squeeze in another summer of sailing on Chesapeake Bay. Maybe I won’t put my boat up for sale just yet . . .

Also, the doctor reduced my dosage of chemo! The difference is very helpful: instead of six days of being a Zombie, this lower dosage gave me only about four days of being a Zombie-Lite. It’s still days of endless hangover, but not as bad and not as long. BooYAAA!

    A few quick notes about that:

  • My appetite is holding steady, but my taste is changing. I still like my favorite foods, but some items taste just a little bit different. I’m sure it has been a gradual change, so only now has it progressed enough to become noticeable. Nothing tastes downright bad except for the sandwiches they give me during the chemo infusion (seriously), and that may be only because I’m eating them as the full strength of fresh chemo poisons are being pumped into my body.
  • My left leg quadricep is again tightening on its own (no, not in a way that could be included in Monty Python’s Ministry of Funny Walks), but it is happening to a lesser degree. Instead, when lying in bed, a couple of times I had the sensation that both of my legs were floating. That may have just been because I was in that wonderful state of mind balanced between being awake and being asleep.
  • My fingers felt funny again, and by funny I mean odd. It’s subtle and hard to describe, but I figured I’d mention it because it is probably one way the chemo is creating a little neuropathy.
  • I’ve mentioned in earlier post that for decades I’ve been dealing with depression. (Actually, I think it showed up in my teen or maybe even pre-teen years.) To reiterate for those who don’t understand, depression is NOT merely just feeling wordlessly sad: it is having your brain functions depressed, pushed down and held down. It’s not feeling sad: it is feeling nothing except the loss of feeling. Usually emotions leave first (so you start ghosting through your life), and close behind thinking ability degrades (at my worst, I could barely form or understand simple sentences. I, who used to do calculus, would mess up basic arithmetic.) You can recover, but statistically the more episodes you have and the deeper you sink, the likelihood of you falling again and sinking deeper increases. Depression is cancer of the mind – not the brain, but the mind, the residency of your awareness of life. You become a spectator, a ghost. It’s living in a horror movie. It fucking sucks. I’ve had it under control for many years, but I know it never, ever goes completely away. Many, many times I have to ask myself if I’m responding appropriately to the common frustrations of life or if my demon is whispering in my ear.
    I bring this up now because I do wonder how much my Depression Demon plays hand-in-hand with my “Little Fucker” Cancer Tumor. When I was first diagnosed with cancer and rather easily accepted my death sentence, I must admit that I also felt a small measure of relief. Yes, relief. The struggle was coming to an end.
    Now, though, with the evidence of the chemo beating down on “Little Fucker”, I believe I will have more time. In anyone’s life there is seldom enough time (cue Jim Croce, “There never seems to be enough time, to do the things you want to do, once you find them.”), but now I have solid reasons to believe I have a little more life than I thought I did at diagnosis. And that gives my Depression Demon a good kick in the nuts. BooYAAA!

Diary of My Death, Post #10

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.

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