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

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.

Go to my next post, #19

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The Last Smoke

(This piece is an old one from years ago, one of several I’ll be resurrecting here.)

01-05-17-cigarette-burning From FDNY new york 600w

My thirtieth birthday was what I call a marker day, a day declared to mark the end of my smoking.  It did, too.  Then, two years later, I thought I’d treat myself to just one hit, or maybe just a couple of drags . . . and before I knew it I was in search of another marker day.

I’ve had a number of them over the past 15 years, but before, they’ve always worked like magic.  At will, I could quit for years at a time.  This year, though, I ran through my marker days like . . . well, like cigarettes outside a courtroom.

A summer’s night, a grilled steak and red, red wine, and loving company quietly sharing easy conversation and slow cigarettes: no doubt about it, a smoke can taste good and feel satisfying.  Yes indeed, a good smoke is one of the pleasures of this world.  Tobacco, however, is one of those funny little things we call a luxury, a treat, a reward for a tough day or tough times, when in reality it is a way of insulting, punishing, and destroying ourselves.

So, after a year of smoking more than I ever had before, I declared my thirty-third birthday to be my final marking day, forever.  For weeks I kept building it up in my mind, probably so I would embarrass the man in the mirror if I didn’t adhere to my declaration.  More than once during that month, as I lit up I would hear myself thinking, “I can’t wait until I don’t have to do this anymore.”

My birthday arrived, and at bedtime I turned to that single cigarette I had saved especially for the occasion.  The Last Smoke, The Lone Smoke.  I turned off the TV, turned off all the lights except the lamp above the stove.  I sat at the breakfast counter, just me and my enemy.  I breathed in and breathed out, blowing smoke rings inside smoke rings, and I carefully tapped the ashes.  As a farewell, I tried to reflect on all the good memories I associate with smoking, and I tried to remember all the reasons why I wanted to quit.  At the end, I took two deep breaths and then one long, final drag.  For the last time ever, I sent the smoke up and away in a stream that pushed through itself and unfurled and hung in the air until it ghosted away into the shadows.  Then, I went to bed.  It was over.

It is never over.  After just a week, I decided that since I was doing so well I’d treat myself to just one more cig.  After a few days of no nicotine, those “one, last smoke’s” never, ever taste as good as you imagine they will.  Never, ever.  Write that down.  If you have one, though, you will have another, and damn if that second or maybe third smoke doesn’t taste better than any cigarette you’ve ever had in your life!

So, I spent October, November, and December claiming and disclaiming marker days.  The Hempfield Service Plaza on the Pennsylvania Turnpike, the last stop before my hometown, developed sentimental value: I was “quitting” there with almost every trip home, which during those days was nearly every weekend.  There were some good starts, though, like Thanksgiving.  I didn’t smoke for four days, which is over the hump, but I returned to my condo and spotted the two “last cigarettes” I had left in the crystal candy dish.  New Year’s Day was more than adequately symbolic, but January 2nd was just another day to smoke away.  My favorite attempt was the time my girlfriend and I were returning from visiting my mother.  Maybe an hour into the five-hour trip, she decided she also would quit, and she would do it right then, at that moment.  As I listened to her familiar speeches, I lit two cigarettes, and with a delayed smile to match hers, handed one to her.  The rest of the trip we held a laugh-filled smoke-a-thon, trying to make ourselves literally sick of nicotine.  All we succeeded in doing was recreating the special effects of Cheech and Chong crawling out of a car pressurized with smoke.

One night, talking on the phone with my bed-ridden mother and noticing my overflowing ashtray, I realized I would not be able to quit smoking until I got bored with it all, until it was not enough fun for all the trouble it caused.  I had to outgrow it.  Although powerful, the biochemical addiction wasn’t the hard half to overcome; the psychological component was the tenacious part.  It was near then that I quit assigning myself the flimsy marker days.  Like nicknames, they can’t be forced to last, only recognized when occurred.

I think I’ve made it, too.  I’ve heard a habit isn’t a habit until you’ve had it for a month, so I’m over the line now.  Occasionally I think of smoking, but I remind myself of how I felt with my last smoke on a day that begged to be considered the ultimate and final marking day in my life.  That morning my mother died of cancer, and that night, outside in the January cold and dark, standing alone and trying to enjoy a smoke, I felt kind of stupid.  It didn’t particularly feel like a last smoke, but I suspected it would be.  A last smoke is usually like most broken couples’ last truly tender kiss: it’s in the past long before it is recognized for what it was.

Post Numeral #17

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

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

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

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

Chemo Treatment #11

This is my eleventh chemo treatment. I’m on a two-week cycle, so that’s 22 weeks, roughly 5 1/2 months. The cycles themselves have become my routine, my normal, but there are differences with each treatment because of the repetitive onslaught of the chemo poison, the rabid persistence of my cancer, and the response of my human body.

This cycle I’ve noticed only a few things:

  • I am more amused than bothered by the neuropathy in my legs. When I make myself horizontal, even though I may have my ankles crossed and boots over the edge of the couch, within moments my legs feel shoulder-width apart, straight, knees slightly bent, and calves floating 6” high. And then they detach (no kinesthetic sense.) It’s like when you’re aware of shifting into sleep and automatically dial back awareness of your whole body, except with this it’s mostly my legs and I can be wide awake. Maybe I’m an idiot, but I find it amusing.
  • The hair all over my body is changing differently from place to place. On my head, it has not fallen out very much at all, but it has thinned. My beard has thinned, straightened, and softened. My chest hair has thinned, but what’s on my arms and legs – which years ago prompted my niece to nickname me “Uncle Monkey” – is not appreciably different. The one weird, unexpected change is on my lower legs, the sock zone: with a definitive borderline, my ankles are as smooth as a baby’s.
  • My appetite is fine; it is unchanged, as far as I can tell. However, my tastes are not the same. Once-favorite foods are becoming unappealing. There’s often a metallic taste in my mouth, and sometimes a sour taste comes up from my throat. This is a direct result of the chemo, which targets fast-growing cells (cancer, hair, and the lining of the esophagus and stomach.) My digestion is just not right, meaning frequent gas and constipation.
  • Chemobrain may or may not be something in itself, directly from the chemo, or it may be just a term to describe the mental fatigue from disrupted sleep and general dealing with the changes in life demanded by cancer. Either way, I’ve noticed that I’ve been making (more) mental errors. The errors have been small and insignificant so far, but that “so far” is precisely what scares me.

The last item listed – the mental issue of chemobrain – brings me to the topic of my emotional state. This chemo cycle wasn’t any tougher to take than the others, but . . . well, I am tired. I wonder how much of my fatigue is due directly to the chemo, how much is depression (with, I’ve mentioned, I’ve long been intimately familiar), how much is winter weather, the drain of regular daily life challenges (cash flow, car repair, dental work, etc.), and how much is using it all as an excuse not to rally more effort and be more productive. This is a question with an answer that I do want, but it’s no fun to think about it.

Also on the darker side, I have realized that I will NOT ever again feel “great”, physically. I will NOT ever again feel my familiar level of strength or energy. I know, you say, “Duh.” Like with many things, there is a huge jump across the black chasm between understanding it mentally and feeling it emotionally.

These somber thoughts above took root in the first week of the cycle, when I was most under the effects of the chemo and its resultant sleep disturbance. The second week, the second half of the cycle, I was much more optimistic. Here’s a thought from then:

I’ve responded well to the chemotherapy, so lately I’ve been expecting to have more than the original estimate of “plus or minus a year.” I’ve delayed selling my old sailboat, and I’ve been daydreaming about how to complete some of my longer-range projects. I know damn well that the cancer may metastasize or that other health problems may show up to shorten my timeline, but I am feeling, believing that I will last a little longer and do a few more good things with my life and leave a little more behind. So, that’s good.

Go to next post –> Diary of My Death, Post #16

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