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

Archive for February, 2019

Diary of My Death, Post #14

Go to FIRST post –> Diary of My Death, Post #1

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

Go to next post –> Diary of My Death, Post #15

Diary of My Death, Post #13

Go to FIRST post –> Diary of My Death, Post #1

Day 8-? Chemo infusion #10 (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.

Go to next post –> Diary of My Death, Post #14

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