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

Posts tagged ‘dealing with death’

Diary of My Death, Post #21

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Chemo infusion #15

From a text sent to family and friends:


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 . . .


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 #18

Post Numeral #18

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

Treatment Days 155-168,

Chemo infusion #13 (two weeks later)

This cycle was a little bit different.  The treatment was the same, but the experience wasn’t.  The sequence was the same – Monday through Wednesday / Thursday feeling like crap (actually, more like a bucket of thin diarrhea left in the hot sunshine on a windless day: no significant substance but unpleasant nevertheless), Friday through Sunday catching up on sleep – but there were a few new . . . uh, features.  My guess is that it has to do with the cumulative effect of months of chemo.

On Monday my nurse informed me that the anti-nausea meds (steroids, I think) are what cause the sleep disturbance and suggested that I take the second daily dose just 5 hours after the morning pill.  It helped.  (With Monday infusions I come home with a portable pump attached to the port in my chest.  It’s about the size of a tennis ball and continues to load me with chemicals for 48 hours, so for 2 days I take additional anti-nausea meds.)  Still, the second half of the week I was again overpowered with the need for sleep.

Now, understand that I am an avid napper.  After all, I am, in fact, The Dalai Napa.  But I’ve not been recreationally napping or even restorative napping; I’ve been sleeping.  I’d wake up, snack on something, and go back down for another 2, 3, or 4 hours.  Repeatedly.  I didn’t keep track, but I wouldn’t be surprised if I was sleeping 16 hours a day.  The rest of the time I was usually horizontal, doing nothing.

The first few days of the cycle my body is dealing with the chemo, so I’m amped up, fatigued but restless.  I’m able to watch DVD movies, if the plot is simple.  I don’t want to do a damn thing, but I can do small household tasks such as cooking a simple meal.  The second part of the week I am near useless.  I stand up to do the dishes, look at the mess in the sink, and then go horizontal again.

When awake, I don’t want to do a damn thing.  I don’t want to watch movies; I don’t want to listen to music; I don’t want to read.  I do NOT want to do, CANNOT do anything requiring very much effort at all, so anything productive or consequential is simply out of the realm of possibility.  I want NOT to think.  Let me say that again so maybe its importance and flavor sink in: I want NOT to think.  Beside a few random and brief spurts of engagement, I’m alert enough to at most play endless games of Spider Solitaire on my tablet.

All I want is to lie on my bed, stare at the ceiling, and let my brain idle in neutral.  I daydream about whatever comes in to my head from I don’t care where: stranded space aliens who look very much like us secretly insinuating themselves into our politics and industry to save us from ourselves; multi-operator pedal-powered tricycles as 3rd world light-work vehicles; rifle-to-crossbow conversion / attachment kits; and the legal requirements of starting a new religion.  I don’t want to put any effort whatsoever into guiding the thoughts into anything remotely useful.  I let the daydreams gently wash over my mind and carry me away.  It’s more than enough.  I am grateful that I am able to do this because I have a warm bed in a quiet home.  I am like a drowsy dog lying on the front porch, moving only its eyes to watch the squirrels in the yard.  Beyond being physically comfortable, I don’t care about anything.  I.  Don’t.  Care.

A sidebar here.  If or when chemo weeks become every week and the remainder of my life will be only what I’ve described above, frankly I’d rather go ahead and get it over with and be dead.  It’s not that chemo weeks are agonizing torture: it’s that they simply are not life.  The chemo weeks are self-aware existence and nothing more.  Without the reasonable expectation of the better weeks in between, they are worthless.  Just because modern medicine can keep a person breathing does not mean that it is a kindness to do so.

I’ve visited relatives in nursing homes, and what I’ve seen through open doorways and even in the hallways is appalling.  One image that won’t stop resurfacing is that of an elderly woman clutching a baby doll as she lay there most probably drugged to sleep.  The expression on her face was not one of rest and repose.  It was of agitation and fear and childish helplessness and baffling puzzlement.  Yes, maybe I was imagining it, projecting my own biased interpretation.  Even granting that, no one, though, will ever convince me that she was the least bit happy or even minimally grateful to be there.  Just because modern medicine can keep a person breathing does not mean that it is a kindness to do so.

What I guess is the side-effect neuropathy helps with this.  When I lie down, nearly immediately I lose the feeling in my feet and legs, hands and arms, and sometimes my whole body.  Without looking or moving them, I can’t tell if my ankles are crossed or not.  In this relaxed state, I hover on the edge of sleep and lucid dreaming.  Actually, it’s kind of wonderful.

Also, I do not want to be disturbed.  I do not want the least bit to be social.  I don’t want to have a conversation, with anyone, really.  That being said, there is a huge benefit to having someone in the next room, maybe quietly talking on the phone or puttering in the kitchen.  It’s one of those things in life that are so much more valuable than they seem to be on the surface.  I have always enjoyed more solitude than the average bear, but people are not meant to live alone.  I’m okay – it is not the mere presence of others but the degree of emotional intimacy with the people in our lives that keeps us from being lonely.  Flipping back again, though, there is something to be said for basic company.  Sometimes quality arises from quantity.

Oh, I almost forgot to mention the new developments.

The first is the increased neuropathy.  It’s been a gradual, subtle advance, but now I have nearly constant tingling in my toes, even indoors where it is a steady 70 degrees or so.  Maybe it’s exacerbated by the blood thinners?  My fingers tingle, too, and they feel strange.  It’s hard to describe the sensation.  The closest I can come to it is a combination of tingling, numbness, and weakness.  I don’t like it, especially when I’m here at the keyboard.  It’s a little scary to think of it going from a strange sensation to worse and then eventually bad, especially when I remember how my mother, near the end of her cancer, had a hard time getting her fingers to hold on to anything.  Brrrrr!

The second new thing is a mouth ulcer.  Every time I get chemo, mouth ulcers are on the checklist of status questions the nurses ask me, so I have no doubt that chemo (or its side effects) can cause them directly.  I may have a different or additional reason.

About two months ago I had a tooth pulled, a back molar on the bottom.  Once my jaw was numb, the dentist was able to extract it surprisingly easily and quickly.  I asked him if that was it, did it break apart, did he have to dig out any roots or fragments, and he said no, all done.  Well, he said no but he must have been confused because he should have said yes, and no, he wasn’t done. It was an easy oversight: I suppose the blood and mess obscured a fragment.  After the minor trauma to my gum and jaw healed, it was still a bit more tender than it should have been.  In about ten days I could see a tiny white dot surfacing through the pink gum: a tooth fragment working its way out.

Normally I would have gone back to the dentist for a zip-zap-zowee fix, but remember that I’ve been spending a lot of time in the funky state of mind described above.  So, I waited, and over weeks the fragment slowly emerged (or grew!)  With the side of my tongue I could feel it, especially it’s one sharp edge (the tooth fragment’s, not my tongue’s), and I figured it was that irritation that was causing the increasing tenderness in that area.  Once a day or so I would shine a flashlight into my mouth and look in the mirror to inspect the tooth fragment, but I didn’t notice any sores or infection.

However, that area of my mouth had become quite bothersome.  The pain of eating was enough to pull my attention from the TV, the video game, or the open book on the table.  Something was up.  Somehow, I got the idea to stick my finger in there to push my tongue to the side, and there it was, hiding under my tongue, just below the tooth fragment: a white ulcer no bigger than a ladybug.  Ah-ha!  I cotton-swabbed it dry while I decided it was time for the tooth fragment to go.  I sterilized the prongs of a needle-nosed pliers (a Leatherman multi-tool, actually, which can be used, according to my Texan friend, to fix anything except a broken heart) and plucked out the offending tooth fragment.  I rinsed with salted water and went to bed.  In the morning, the ulcer was noticeably better.  I suspect they may have been related, perhaps by the tooth fragment expulsion oozing tiny amounts of goopygunk (yes, that’s a medical term.)

Here’s the thing about the tooth fragment and mouth ulcer, and why I wrote all about it.  Each were such small things, both very, very low on the scale of problems in life.  However, after six months of chemo, minor irritants like these (the kind that don’t disappear in a few minutes but stay around to pester you for weeks) become more than minor irritants.  It’s Dark Magic, for sure.  Being chronically ill magnifies annoyances: unnoticeably it wears down your energy, stamina, and attitude, the same way constant drops of water wear down granite.  So, when your chronically ill loved-one erupts over something minor, or seems not to be mustering reasonable and appropriate good cheer, go easy on him or her.

Speaking of life’s little annoyances, on a tangent, to close I’ll borrow the words of Gilda Radner: “Well, Jane, it just goes to show you, it’s always something — if it ain’t one thing, it’s another.”  By the way, the title to her autobiographical book about her lethal cancer is “It’s always something!”  She was funny!  If you younger folks aren’t familiar with her, go YouTube her SNL character Roseanne Roseannadanna or at least check out the Wikipedia page.

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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

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