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

Post Numeral #22

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

Chemo infusion #18 (two weeks later)

Treatment Days 245-259

(For the past three treatments I’ve not gotten around to posting here, but I did take notes.  Also, my count of treatments in these posts doesn’t match up with the infusion center’s count, so I’m pretty sure I overlooked a couple of treatment descriptions.  Whoops.  I think this forgetfulness falls under the description of “chemo-brain.”)

I’m tired.  So, mostly I’ve been just enjoying the weather.  It’s the end of May, and the weather has been warm but not hot.  I made and rigged a hammock athwartships in my [boat home’s] shaded cockpit, and although a tad too narrow it works pretty well.  I envisioned a sort-of sling chair / bench, but that didn’t work out so well.  Sometimes it’s best not to overthink things and just go with simplicity.

I love summertime, especially late summer, which is through most of the month of September.  Then the natural world is ripe and sensual, full of simple pleasures.  Now, in early summer I like lounging in my cockpit, enjoying the warmth, the sharp Kip! cry of the ospreys and the songs of various birds.  I watch dragonflies exploring the nearby salt grasses, watch the silent clouds pass by far overhead.  One afternoon I saw the clouds darken, and soon enough I felt a thunderstorm arrive, felt it in the breeze just moments before thick raindrops began plopping onto my canvas awning and plunking into the creek.  As the storm came in, the wind gusts pushed my boat-home against her dock lines, but she settled down as the wind and rain steadied.  Raindrops on the “roof” – what a great lullaby for afternoon naps!

If I haven’t mentioned it before, cancer and chemo make me often feel like a dog lying in the grass in the middle of the yard, head up, just looking around, maybe watching insects fly nearby, and showing no intention of getting up and doing something, anything.  Like the dog, I don’t want to do a damn thing, and I’m totally content just to be still and look around.  To a friend of mine I mentioned enjoying just watching the summer clouds pass by overhead, and a little later she said something about it being fine for me to spend precious time just looking for shapes in the passing clouds.  No, no: she had it wrong.  Looking for recognizable shapes in the clouds was too much effort.  I just watch them pass peacefully over my creek and over my head, and that alone is the perfect amount of occupation and entertainment.  There is, y’know, a great sense of peace that comes with accepting your approaching death.

–  –  –

For you caregivers, understand that disrupted sleep is a significant factor in a patient’s energy and mood.  On the night before a treatment, I don’t want to go to sleep, and then when I do, I don’t sleep well.  It’s not so much extra anxiety about the imminent chemo treatment as it is just a normal bit of dread of unpleasantness, like an amplified version of the Sunday night sobering you feel when you’re stuck in a job you do not love but have no intention of leaving soon.  Then I get up at 5 a.m. to shower and get ready for my ride to the infusion center, and although I have taken naps there, it isn’t easy.  I bring earplugs to muffle the nurses’ background chatter, and the reclining chairs are really comfortable, and the nurses bring you pre-warmed blankets (!), but you can’t really rest.  Whenever the nurses start the next IV bag they have to scan your barcode bracelet and have you verify your name and DOB, so there’s that, and they’re pumping you full of fluids so you have to relieve yourself, and then as the day goes on and the IV chemo goes in, your body itself gets uncomfortable.  Even though you’re getting fluids added, it is nonetheless a big drain on your body.

With this most recent treatment, I thought I would nap immediately when got home but I didn’t, couldn’t: I just rested horizontally for a half hour.  Then I was up until midnight but mostly only watching short YouTube videos.  The point is, you start the treatment day short on sleep and you won’t get it halfway right for days.  You come home from the infusion tired, but the steroids keep you awake.  Then you sleep, but you get up every two hours because your kidneys are processing the chemo drugs.  So, cancer, chemo, and disrupted sleep: a great combo for sucking your energy and taxing your patience.

Caregivers, when a cancer patient is sleeping, please take extra steps not to disturb him.

–  –  –  –

This was my first treatment with a new chemo cocktail.  I didn’t like it. More on that later, but for now I’ll list just two reasons. The first thing I noticed was that it punched my appetite hard, “in the gut.”  Even when I felt hungry, I’d fix a small plate of food I liked but halfway through it I’d lose all interest.     The other noteworthy difference in side effects struck me as a bit bizarre: I got joint pain in my knees.  I’m 59 and I used to be a runner, but I’ve had no real problem with my knees, ever.  I’m surprised the pain didn’t show up in my sometimes-aching feet instead.  I had to start using a thin pillow under or between my knees to even think about getting any sleep.

–  –  –  –

Lately I’ve had a near total lack of productivity, and by productivity I mean anything that wasn’t necessary, such as making simple meals to eat.  It is hard to identify the reason behind this – is it the cancer, the chemo, my emotions about the cancer, my thoughts not so much about the cancer but definitely about the chemo, or my clinical depression rousing for another round in the ring?  I certainly could use not a physical but an emotional vacation.

Well, hooray!  An emotional vacation is on the way!  I’ve applied to Maryland’s medical marijuana program, and my ID card is on its way!

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