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

Post Numeral #16

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

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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