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

Posts tagged ‘death’

Diary of My Death, Post #21

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Chemo infusion #15

From a text sent to family and friends:

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Security at the hospital gave me this pic of me trying to escape the mean chemo nurses.  They say they’re going to press charges unless I pay for the plate glass window I broke.  Ya, I used my rolling IV stand like Thor’s hammer to break and climb out the ground-floor window, ya, the window right next to the automatic doors.  My legal defense will be that they pumped me full of mind-altering drugs so I can’t be held responsible.  That’ll work, ‘cause . . . well, look at my “responsible behavior” track record!

The only other news I have is that I’ve been diagnosed with an additional disease.  It turns out that IT is the reason for my near total lack of energy and inability to do even minor tasks.  Its common, lay-people name comes from the Chinese culture: it’s called Dragon . . . uhm, Dragon Ass.

Ba-dum-bump . . .

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Diary of My Death, Post #20

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Immortal Love

They that live beyond the world cannot be separated by it; death cannot kill that which never dies.  Nor can spirits ever be divined, that love and live in the same divine principle, the root and record of their friendship.  If absence be not death, neither is theirs.  Death is but crossing the world as friends do the seas; they live in one another still.  This is the comfort of friends that though they be said to die, yet their friendship and society are in the best sense, ever present, because love is immortal.

William Penn’s words on the memorial tablet to his father in Saint Mary Radcliffe, Bristol, England

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Diary of My Death, Post #19

Post Numeral #19

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Diary of My Death, Post #19

Treatment Days 169-182, Chemo infusion #14 (two weeks later)

Good news!  My blood test numbers are still improving!  That’s more evidence that indeed my blossoming superpower is “fighting cancer”!

Two good things immediately came out of this good news.  First, my doctor reduced my chemo dosage again!  The treatment is still “a bit of a bother,” but it is noticeably easier to take.  Second, this time around, and this time only (at least for a while), we’re going to extend the time between treatments from two to three weeks.  I get an extra week of feeling mostly normal!  I’ve been getting tired of being so damned chemo-tired, so this decision to push the next treatment has definitely lifted my spirits.

Okay, so here are my notes for this cycle:

Monday – Doctor visit and Chemo infusion

Tuesday – Actually went outside and walked over to the neighbors for a short visit.  NEVER have I left home, or even thought of being sociable, the day after a chemo!  I do wonder if it was the steroids that accompany the chemo that gave me the energy on Tuesday.  I do not know if their dosage was reduced.  I don’t care, though: it was a more palatable way to go!

Wednesday – Went to hospital for the routine removal of the portable chemo pump connection from the port in my chest (sort of like the plugs in Neo’s body in The Matrix).  Otherwise puttered, putzed, and napped.

Thursday – although I slept mostly through Wednesday night, nonetheless I slept a lot on Thursday.  It was a sunny, warm, beautiful spring day, but I didn’t even want to sit outside.  In the morning I was zonked out in bed, and after lunch I was zonked out in bed.  I was up for a couple of hours and then again slept mostly through the night.

Friday – pretty much the same as Thursday, not much more than sleep, sleep, and sleep.  These two days of nearly constant sleep weren’t bad at all.  I mean, if you’re going to feel like crap, you might as well be effectively unconscious, right?

Saturday – a nap or two (hey, we’re talking about me, right?), but the Binge Sleeping was over and done.  I didn’t do much of anything, though.  I updated my To Do list, took a shower, looked at my sink full of rinsed but dirty dishes, and decided that was as productive as I was going to get.  I felt lazy.

Sunday – Woke up, had coffee, then immediately went back to bed until nearly noon.  After lunch, I did the dishes! (By hand, mind you; remember, I live on a boat and do not have a dishwashing machine.)  To celebrate my mountain of accomplishment, I didn’t do a damn thing the rest of the day!  Another lazy day.

That’s the chemo week, and that’s about how long it takes for me to do more than sleep, suck air, and daydream.  The next week was much better, almost normal.

Monday – ran some errands and then pooped out.  Afternoon nap, then a little bit of productivity, and then I gave in to laziness and watched Netflix all evening.

Tuesday – ran some more errands, and as I was driving caught myself moving my body to the rhythm of the radio, “car dancing”, (which is where I do my best dancing because it is mostly in my mind where I move fluidly and gracefully in such a charming manner as opposed to in real life where I lose my balance and twist my legs into pretzel formations and trip nearby dancers.  Really, there have been lawsuits.)  Felt pretty damn good and energetic, but then pooped out completely in late afternoon.

Wednesday – made another pass at the next level of personal archeology, purging some more belongings and going through boxes of photos that I’ve told myself , “I’ll sort through those in the quiet of this winter” . . . for the past 10, 15, 20 winters . . .  Again, late in the afternoon, early in the evening, I just pooped out and went into Lazy Mode.

Thursday – went to the laundromat.  In addition to my clothes, I washed some salvaged canvas I can make into something even if it’s only utility bags.  It bothers me to see perfectly good or usable stuff just thrown away to be buried in a landfill.  I pick it up and put it away for projects I’ll never get to – ya, it IS a sickness.

Friday – worked on my 1998 Toyota.

First, in the morning I caught a ride to fetch a new battery.  This was planned, because these days I casually use a budget for my time and energy.

Then, because of rusted bolts and access issues, and, okay, my clumsiness, it took me four hours to free the convoluted pipe from the gas tank to the pump nozzle receiver.  Once unattached, removing it from the maze of frame struts, hydraulic brake lines, and various under-car parts was very much a puzzle: maybe if I twist it this way, move this end up and over, then twist it the other way . . . There is no doubt that this piece was originally installed pre-assembly of the body to the frame.  In fact, I’m 100% sure that the factory built the entire vehicle around this convoluted pipe!

Fuel Filler Tubes 450

I was replacing this piece because the vent pipe was holed or clogged, which forced gas station nozzles to shut off after only a few seconds.  I timed myself the other day: it took 31 minutes to pump $10 of gas.  According to online forums, this is the problem’s most common cause.  I hope it works!

Saturday – installed the new fuel filler pipe.  It took maybe only an hour.  Hard to say because I had a number of visitors: it was, after all, a weekend at the marina!  Mostly it was people I knew, for whom I’d crawl out from under my vehicle to talk.  There were others, though, like the cute child who took an interest in my array of wrenches splayed over the gravel.  The wrenches were within my reach . . . I shimmied out from under and we played with the tools while the mother and I chatted . . . so, with various kinds of company, one hour of work took all afternoon, but I didn’t mind at all.

Camouflage Nap 450

Nap Master’s Journal: Camouflage Nap!

Sunday – very rainy day, the kind of day made for listening to the raindrops on the rooftop, taking long naps, drinking coffee in the morning and tea in the afternoon as I work at my laptop, and repeatedly indulging in small doses of “medicine” (dark chocolate.)

A few free-floating notes:

  • My fingers and feet are tingling near constantly now, and my fingers are a little numb.  I haven’t been dropping things, but my fingers aren’t working quite right, which is a bit worrisome for someone who has much to do with his laptop, writing and internet work!  It’s been warmer outside, in the 50s and 60s and few bumps up into the 70s, so this tingling and numbness makes me afraid of next winter!  Also, it makes me wonder how sick am I, really?  Is the cancer doing a little rock-step backwards just to come at me with more momentum?
  • There’s what I think is a metallic taste in my mouth, and overall my taste has changed, so although my appetite is fine as far as me being hungry, food just isn’t as fun.
  • Constipation is a real pain in the ass.

And that’s it.  Tomorrow begins my “extra” week.  I’m expecting to feel better and be productive!

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Diary of My Death, Post #17

Post Numeral #17

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Dirge Without Music

By Edna St. Vincent Millay

I am not resigned to the shutting away of loving hearts in the hard ground.

So it is, and so it will be, for so it has been, time out of mind:

Into the darkness they go, the wise and the lovely.  Crowned

With lilies and with laurel they go; but I am not resigned.

 

Lovers and thinkers, into the earth with you.

Be one with the dull, the indiscriminate dust.

A fragment of what you felt, of what you knew,

A formula, a phrase remains,—but the best is lost.

 

The answers quick and keen, the honest look, the laughter, the love,—

They are gone.  They are gone to feed the roses.  Elegant and curled

Is the blossom.  Fragrant is the blossom.  I know.  But I do not approve.

More precious was the light in your eyes than all the roses in the world.

 

Down, down, down into the darkness of the grave

Gently they go, the beautiful, the tender, the kind;

Quietly they go, the intelligent, the witty, the brave.

I know.  But I do not approve.  And I am not resigned.

Go to my next post, #18

Diary of My Death, Post #16

Post Numeral #16

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Treatment Days 140-154,

Chemo infusion #12 (two weeks later)

The key word for this treatment cycle is “cumulative.”  When a nurse at the infusion center mentioned it, I mentally palmed my forehead and thought, “Oh, ya! Duh!”  Like so many other things in our lives, we don’t notice or we dismiss their daily accretion until the total is greater than the sum of its parts.  Our physical age, the fruits of our habits and ways of thinking, and much more: so many things in plain sight still manage to sneak up on us!  But if we’re honest with ourselves, we have to admit that dammit, we really should have seen those things coming.  I’ve been doing chemo for six months now, and only recently have I realized on a deeper level that yes, cancer is a definitely defining my daily life.  I suppose it’s been a form of denial, but up till now, although the diagnosis felt real, the treatments have felt like an add-on, just an unpleasant bi-weekly task injected into my life.  No, the cumulative effect of six months of cancer and chemo has changed me somewhere near my core.  Put simply, even on my best days I have significantly less energy.

Very early one morning (because for several days after a chemo treatment the clock means absolutely nothing), I was outside in the cold and dark.  Something triggered a memory from many years ago, a memory compiled of many mornings when I would drive an hour pre-dawn to a labor job for which I had to be there at 6 a.m.  Not too far from my home, before my spacious work van could heat up, I would stop for at a 7/11 for a road coffee.  There was no reason to remember any particular day I did this, but repetition created a “summary” or “collage” memory of climbing back in to my cold work van, pre-dawn with hot coffee in hand.  The feeling attached was being tired and a little stiff, sleepy, and cold, and the van being bouncy and not very comfortable.  Nonetheless, even though I knew then that I wasn’t at the top of my game and better work was in my future, I usually felt pretty good.  Maybe the coffee helped a lot, but no doubt a major part of my pre-dawn optimism was just being able to move.  Back then, my body behaved exactly as I expected.  Whatever physical strength I had, I could summon instantaneously, with no mental or even emotional encouragement, like magic.  I really, really miss that.  Physical movement creates emotional momentum.

My “chemo-brain” is getting noticeable.  Increasingly I am forgetting all kinds of things.  Mostly it is short-term stuff, but I’ve had to stop and ask myself about the facts of a few events from years ago.  Also, a couple of times I just wasn’t processing the information put into my brain.  I don’t believe this is mainly from my approach to my 60th birthday.  Here’s an illustrative example:

A few days after the most recent infusion, I had an early dinner, and my full and warm belly prompted me to take a nap (as if I needed a reason!)  I didn’t just nap, though; I fell deeply asleep.  I awoke feeling rested.  That was no nap: I must have slept half the night!  I got up, made coffee, booted up my laptop, and, feeling more clear-headed than I had in days, began working.  There’s a window beside my table, black in the night, and after 2 mugs of coffee I noticed it was still dark outside.  What time was it anyway?  I checked the clock: 7.15.  I thought it was usually light by then, but a few days earlier was stupid Daylight Savings Time, so I figured I just hadn’t re-calibrated yet.  I had a third mug of coffee before I noticed it was still completely dark outside.  What, did we have extremely heavy cloud cover?  This couldn’t be because of Daylight Savings.  “Spring forward; Fall backward” means the clock-time of dawn goes . . . which way?  Then it finally hit me: it was not nearly 9 a.m. but 9 P.M.!  D’oh!  Fully caffeinated and somehow surprised by which half of the day it was.  Damn.

That little spurt of work productivity was an anomaly for the week.  The rest of it was the usual Chemo Week of Daze.  I watched movies, but not good movies, not any dramas that required me to follow the plot.  No, all I wanted was stupid movies with more explosions than dialogue.  Then it was the same with reading; I didn’t want anything but distraction, just enough to keep the brain busier than staring at TV but not requiring much effort.  I read 6 soft sci-fi/fantasy novels in four days.  I traded a few texts, but I didn’t really want to actually talk with anyone.  Mostly I wanted just NOT to think, especially about important issues.  During the whole chemo week, I left my boat (ya, I live on a boat, dockside) only 3 or 4 times, and I didn’t leave the marina once (except to get the portable pump detached from the port in my chest.)  These chemo weeks are significantly better than being dead, but you can’t really call them being alive.  I have no doubt these chemo weeks will become quite boring and tiresome, and I can see myself eventually not wanting to bother.  I’m a far way from that now, but I understand that with being easily tired and relatively weak during the good week before treatments, this is no way to live for – possibly! – 2 or 3 more years.

My infusions are on Mondays; it takes until Sunday or the next Monday to feel functional.  I think it wasn’t until Saturday night that I was able to sleep straight through 7 hours.  It felt great, Tony-the-Tiger ggrreaaat!  A decent night’s sleep with full and complete sleep cycles makes a huge difference.  I wonder how much of a chemo week’s malaise is from the chemo itself and how much is from the resultant sleep disturbance.

At the Infusion Center sometimes I get the same nurse and sometimes I get someone I haven’t yet met.  (By the way, the nurses most familiar with me are teaching the “new” nurses a little game to play with me.  Every time they start the next IV bag of chemo, they have to scan the bar code on my wrist band and have me verify my name and birthday, but they don’t let me say, “Hetu, Michael, 6/30/59.” Nope.  If I do, they say, “Say it right!” (once from a second nurse on the other side of the room), and I have to say “Hetu” more like “Ah-choo!”  It’s my fault: I taught one of them that and now it’s a thing.)  Anyways, this time I had a “new” nurse, and in bits and pieces over several hours we had a pretty good conversation.  We talked about many things, but mainly we talked about death.

I shared with her my idea that it would be fortunate that if early in our adult lives every last one of us had a clear brush with death.  I have no idea how that could be arranged, mind you.  It would have to be real, and it would have to be more than something like an easily forgotten near-miss traffic accident (many of us have exactly that and it doesn’t change the way we live our lives very much at all.)  But if somehow in our youth we could realize – emotionally – that our eventual death is not just a thoroughly accepted concept but a factual, personal reality that IS approaching day by day . . . surely it would prompt people to value their time more, and to count their blessings almost constantly.

She told me that her career as a nurse – in pediatrics, emergency room, and now cancer treatment – has given her exactly that.  She said that countless times, with many of her patients, she couldn’t help but think, “There, but for the grace of God, go I.”  She said that her nearly constant exposure to trauma and terminal illness has been a totally unforeseen but magnificent benefit to her chosen line of work.

I told her that just the previous week I had watched the movie “Ready Player One”, which was much better than I thought it would be.  It is quite well done and has more meat to it than just a special-effects show about virtual reality.  There’s a character in it who says something like, “Only when I discovered that I was dying did I find my true courage to live.”

When you emotionally realize your days truly are numbered, it becomes easier to forego all the bullshit we use to keep ourselves from facing our fear of being our truest selves and living our best lives.  If only in our youth we could understand that to do otherwise is downright foolish.  After all, we have nothing to lose but our lives . . .

Go to my next post, #17

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