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

Diary of My Death, Post #9

Chemo #4

My infusion meds are the same, but it seems each successive treatment is easier to take. Well, the treatment days are the same – boring, boring, then finish with a hell of a bother – but the days afterward are easier than the preceding round. I don’t know if this is because my body is more familiar with the drugs or if I am more familiar with and accepting of the effects. (As always, in life there are no isolating the causal factors and there is seldom a solitary agent in play.)

This round, even though I was short on sleep the night before the infusion, when I got home I slept for only 1 ½ hours. I watched a movie, took a 3-hour nap, and at 2 a.m. got up, made tea, and turned on the computer. I was sleepy but could not sleep.

The chemo side effects made themselves noticeable. First, during the final IV bag at the infusion, my thumbs quit working. I could move them, but they were suddenly clumsy and numb. Holding anything took intentional commands and a little patience. It was a weird, Twilight Zone sensation. Gratefully, it passed in a few hours.

Also at the infusion, during the final, most potent bag, there were no foot cramps as before. There was the hot but clammy skin, for sure. The new thing – and I’m not making this up! – is that I had the feeling my eyeballs were swelling. Just a little, just enough to make themselves known as I moved themselves around in their sockets. And they were slightly itchy. Again, a weird, Twilight Zone sensation. (Googling it revealed it is real and due to water retention.)

Texts to friends:

This round of chemo is making my eyeballs swell. It’s by about only 1.35%, but that’s enough to make me feel like a lizard. If my eyeballs start bulging out and moving independently, there’s no need to be startled. Occasionally they did that before, y’know.

Y’know how your foot “falls asleep” if you sit on your leg the wrong way? Well my ASS fell asleep! I could tell cause I kept hearing it snore.

The next neuropathic disturbance was my left quadricep, the front muscle of my left thigh. It would tighten on its own, especially when I was lying in bed. My whole body would be relaxed and shifting into sleep mode, but I would notice my left quad tensed. I’d command it to relax, and it would, but then moments later I would notice it tight again. It seems strange that of my entire body it was only the one muscle that was doing this. I know people grind their teeth in their sleep, so is this one leg muscle a similar thing or a direct effect of the chemo poison?

I am quite aware that there is very complex and strong connection between body and mind (though so many people believe their mind and maybe their soul is separate from their brain and body), but lately, because my body is surprising me, I’ve been thinking of them as distinct entities. I hear myself thinking things like, “I want to do something, anything, but Body says we must sleep again.” Ad-hoc modifications of the Good ‘n Plenty candy jingle from my youth run around my mind like earworms: “Body says, gotta get up and piss, Body says, do it NOW or make a mess, Body says . . .”

The cancer tumor itself is also gaining its own identity. The image of an organic PacMan – not solid cartoon yellow but a marbleized green-slime-and-phlegm-puss color (with feather tip brushes of burnt orange), and with a twisted, malevolent mouth and one bloodshot, insane eye – invades my consciousness more often than I like. It doesn’t have a name yet, so for now, more often than anything else, I call it, “Little Fucker.” It lives under the right side of my rib cage, right on my pancreas and liver.

As the chemo week progresses, so does the amount of dreams in my sleep. Apparently, the chemo, or Body dealing with it, results in a brain barely in gear. When even your subconscious isn’t cooking, and all you want to do is sleep, you’re real close, too close, to merely existing. Again, one foot into The Twilight Zone . . .

The days pass through a series of naps (sleep, snack, snooze, repeat.) The clock is totally irrelevant. The days of the week become the Week of Daze. Gradually, level by level, my mind returns. By Thursday or so (Monday infusion), I don’t want to sleep, but I don’t want to work. By work I mean anything productive, such as this blog. By Friday or Saturday I realize that regardless of what Body wants, I don’t want to sleep. I want to do something, anything. I’m bored, and that is a very good sign. Body and Mind want to participate in life!

This feeling reminds me of the terrible time I was trapped in a sensory deprivation chamber called an “office.” No kidding, years ago, after taking a new job, I was shown to my desk, which was alone in what before must have been a large closet. No windows, dingy paint, poor fluorescent lighting. If a person weren’t depressed before spending 40 hours a week there, he surely would be afterward! The work itself wasn’t the least bit social (even through email!), so I would go home not wanting to go to sleep and end the day. I distinctly remember repeatedly having the thought, “I didn’t live enough today.”

So, yes, being bored is a damn good sign that your heart is still in the game. With a two-week chemo cycle, it seems from now on I’ll be “one week off, one week on.” At least I’ve had some practical training at this!

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Diary of My Death, Post #8

Chemo #3

Text to Bill

  • Chemo today. Starts cozy with IV under pre-warmed blanket, hours later I feel like frog in water that has gradually gotten too hot, just want to get out of the room, out of my skin. Zahn brought me home, I took a nap, life is good again. Well, almost. I’ll take it gladly, though. Hot tea, crackers, a movie on the laptop, a little real food later.

During the infusion asked the nurse about the relative strength of my chemo regimen. I noticed that some of the other patients were in and out in an hour while others were there all day. The differences were no doubt due to different kinds and stages of cancer. My infusions were about 6 hours, so was my treatment medium strength? She said, “Uhm, no, you’re getting an intensive regimen.” Every week or so I gain a new level of understanding about my situation.

From the nurses (who are quite pleasant and professional) I learned that the chemo targets fast-growing cells, which makes sense since cancer is nothing more than cells reproducing much too quickly and inaccurately. The problem is that “fast-growing cells” includes some non-cancerous types such as hair roots (thus the hair loss) and the linings of your esophagus and bronchial tubes (thus the quasi-heartburn.) Aha! I don’t mind losing the hair on my head (I’ve been partially bald for nearly all of my adult life), but I don’t like losing my beard. It is thinning and someday will be best if shaved clean. The good thing about my hair loss is that the Amazing Monkey-Man Bean Sprouts in my ears are gone, as are the pesky hairs that always seem to poke out of my nostrils even within hours of grooming. It’s all sort of like evolving into a futuristic spaceman, no need for any hair, no need for even a body . . .

The sensitivity to cold has increased, even to room temperature food. The first table grape will cause me to make me a face, and rinsing my fingers with bottled water will make my fingers tingle a little. Going outside in 45 degree weather will make my fingers tingle a lot, even though I’m wearing gloves.

For four days, mostly I slept, though always just a couple of hours at a time. The clock meant little. Sleep, snack, snooze, stare at the wall, repeat, repeat, repeat. Every day I set out four water bottles to make sure I’m drinking enough to allow my kidneys to flush the chemo through, so therefore I wake up every two hours (almost exactly!) to urinate. A three- or four-hour nap is notable enough to make me feel as if I actually achieved something!

My treatments are on Mondays, on the portable pressurized bottle that slowly and steadily pumps anti-nausea meds into me through a plastic port installed under the skin near my clavicle gets removed on Wednesdays. I can take a shower then, but since I (a) have no energy, (b) live alone, and (c) have barely moved between bed and table, for every treatment cycle I usually wait until Thursday or Friday to take a full shower. This time, an odd thing happened.

There I was, luxuriating in the hot wetness and steam, soaping and scrubbing myself. Naturally at some point I washed my buttocks, but as my hand slid over one cheek something felt different. I put the washrag on the rack and grabbed my butt with both hands. HEY! This isn’t MY butt! I know my own damn butt; I’ve had it my whole life! This isn’t MY butt! I haven’t lost weight yet, so maybe it was just the loss of muscle tone. For the last several weeks I was not on my feet nearly as much as usual, so that had to be it. What a weird feeling, though, to be slightly startled by changes in your own body.

Diary of My Death, Post #7


Just a few texts to family and friends:

  • The silver lining in all of this is that I have found a marginally rash but very effective way to get away from the worldwide embarrassment of Trump! Ha!
  • Ya, I’ve had a tight run of bad luck lately. First I broke my eyeglass, then my Jeep frame rusted out, and then I got diagnosed with cancer. All of this really upsets me because those eyeglass frames were my most favorite-est, ever! Everything is expiring!
  • Y’know, with me sleeping only two hours at a time, I find a special satisfaction by shutting down my laptop by clicking “Sleep.”
  • Woody Allen: “I don’t want to achieve immortality through my work; I want to achieve it through not dying.”

And a few stray thoughts:

As winter is rolling in like a huge, gray grindstone, I realized I’m getting tired of living on a boat. When a day and half of strong winds blew all the water out of the creek, my boat settled into the mud, and I had to climb up out of it to the dock. I thought, “Y’know, even a tiny apartment with central heating would be sweet. I’m about ready to move off the water. Ya, I think this will be my last winter on my boat.” A few moments later I thought, “UH, YAA! This probably WILL be my last winter on my boat! DUH!”

I am sick, and I’m uncomfortable, but I’m not in a lot of pain. Mostly it’s just a dull ache below my ribs on my right side. There are, though, those unexpected little gasps – like a single hiccup – that cause the ache to sharpen and bite. (Because deep breaths awaken the ache, I think the surprise gasps are serving as substitute yawns.) Those gasps bring a momentary pain that makes me cuss, and then I’m back to normal. I picture the source of the ache and pain as a raisin-sized organic PacMan eating my guts. It is chewing me in super-slow motion, but it is steadfast in its mission to make me hollow and lifeless like a mannequin. It will never stop. It will grow from the size of a raisin to the size of a cherry, then a grape, then a plum, then a peach, then . . . well, eventually, the size of ME! I’ll become a 180-pound tumor slurping down the hospital hallways, a big blob moving forward vaguely like a PacMan . . . and some bespectacled, slightly bored and annoyed hospital admin person walking backwards while looking at a clipboard, saying, “Sir, you have been officially discharged. You must leave the premises, and you must immediately stop wandering the hallways and absorbing staff members. If you cannot arrange your own transportation . . .”

Chances are that as the cancer grows, my time will become progressively useless. It has occurred to me that whether I have less or more than a year, that fuck-shit PacMan is NOT going to leave my body, ever. No shit, man, the clock is ticking. I can’t let myself forget that. I can’t allow myself to waste time on petty problems or negative emotions. I’ve often said that for all of us, all the time, it is always later than we think it is, but for me, right now, no shit, man, the clock IS ticking.

Diary of My Death, Post #6

Now and then people have called me crazy, but I say I’m crazy like a fox: because of my cancer, my piss-poor retirement preparation DOES NOT MATTER! Ha! I WIN!

(Updated for clarification)

Except for the list of friends with whom I’ve gradually fallen pretty much out of touch, I’ve shared my cancer news with almost everybody who gives a damn. Those phone calls are not easy either to receive or to make. The way some friends – old and new – react is heartwarming; the way other old friends react is not. They make it easier to let go.

I am reminded of my mother’s nearly lifelong friend, Judy. They weren’t nearly as close as they were as teenagers, but they still thought of each other as friends and would get together a couple of times a year. As my mother’s health declined, Judy visited less often and then stopped altogether. Eventually my mother confronted her about it, asked her why she wasn’t visiting and not returning most phone calls. Judy told her that she just wasn’t comfortable being around terminally ill people. Oh. Did Judy think terminally ill people were comfortable being terminally ill? I remember my mother being upset about Judy, but only for a very brief time. After the surprise and shock of it, she shrugged her shoulders and said (in so many words), “Eh. One less reason to keep fighting through these crappy chemos.”

Between then and now I learned M. Scott Peck’s definition of love: “The will [not the desire but the decision, the committed mental and emotional state] to extend oneself for the spiritual benefit of another person, or oneself.” (Spiritual benefit encompasses physical needs, too: to provide a basic minimal happiness of your children, generally speaking first you have to feed, clothe, and house them.) So, yes, if someone isn’t willing to push himself out of his comfort zone to bring you a little soothing company to you, well, no, you won’t be leaving behind as much as you thought you were.

Speaking of letting go, my cancer has helped me let go of a worn-out habit of mine. It’s not at all an uncommon habit, so I’ll elaborate here. We all develop coping strategies that seem like a good idea or even a great idea at the time, and they may very well be the best strategy we can muster and apply in our circumstances, but we all tend to carry those strategies into our future. They become subconscious habits and no longer appropriate, and, if we learn and grow, we see that our current circumstances allow for more evolved and healthy behavior. So, although for years I truly have been working up to letting go of one particular worn-out habit of mine, actively working on having my conscious puncture that habit’s poisonous abscess in my subconscious, it was my cancer that helped me do it. That and the lottery.

Last month there was an extra-large lottery prize, I think near a billion and half dollars. My nephew and I bought one ticket each just because if we were ever going to win any lottery, what a coup it would be to win this one! Neither of us did, no surprise. We talked about it several times over a few days, each of us separately, in quiet moments, daydreaming about what we would do if we did happen to win. Buying yourself luxuries is easy; giving away big money is much more complicated. Would a sudden infusion of mega bucks help a loved one rise above his problems, or would it only enable much more dramatic manifestations of those problems? The mix of those daydreams and conversations about the necessary disbursement of imaginary funds was somehow solidified by the knowledge that I would not be around to see what happened, to see how the receivers handled the gifts. Somehow, this hypothetical exercise coupled with the reality of my impending death helped me get rid of a worn-out habit by moving my mental thoughts into my present-tense emotional working repertoire. I wish I had managed that at least 30 years ago. Maybe this post will help some readers further along the path.

The habit? For way too long I’ve searched for solutions to other people’s problems instead of addressing my own. The key word there is “instead.” Offering help and solutions to help other people is a fine thing to do, in itself. A self-centered life isn’t much of a life. However, instead of addressing my own shit (because we all have some shit in our brains and hearts), instead of investing my energy into improving and refining my life skills, I’ve spent way, way too much time responding to other people’s preventable problems.

It’s a two-step issue. It first shows itself in making the tangible or practical parts of other people’s lives hold together. (“Since you asked, no, you should definitely not buy THAT used car.” is followed by “Hey, I bought THAT car and it has all kinds of problems, so will you fix it for me?” I fix the car because no car will too soon mean no job, which means more and larger problems, so I try to stop the cascade.) Before you know it, the practical side sneakily grows into the subtler issue of the patterns in our lifestyle choices. (“Damn, you’re very drunk again so I’ll drive you home and no doubt we’ll cancel our plans for tomorrow morning.”) There is an invisible line between helping someone else and becoming, yourself, an enabler.

I do not claim to be a fountain of knowledge and wisdom (evidence points to the contrary.) However, I have learned a few things about living life. I’ve spent way too much of my life leading (and, yes, I admit it, sometimes dragging) other people’s horses to water and trying to get them to drink. I admit, in younger years my urgings were clumsy, oafish, and even obnoxious; only with the accumulation of years did I grow into using gentle nudges and quiet encouragements. (Well, I like to believe I’ve become gentle at it, anyways, at least a little.)

For many years I’ve known the old saying, “Never try to teach a pig how to sing: it wastes your time and it annoys the pig.” With each passing decade I’ve been getting better at it, but finally, finally I think I “get it.” Go ahead and spread as many seeds of whatever wisdom and solid advice you may possess, but accept that those seeds will take root and sprout and grow only if, when, and where (with whom) the conditions are right. Certainly, you can help others, but the only person you’re ever going to “fix” in any appreciable way is yourself. Quit trying to live loved ones’ lives for them – of course I’m talking about well-intentioned involvement, not manipulative control for selfish ends – and live your own. Don’t be self-centered, but teach what you’ve learned through the best way: first by example and second by explanation of what you’ve discovered for yourself. Lay it not in their laps but on the table, and when they’re ready to pick it up, if ever, they will. Don’t distract loved ones from dealing with their demons by forcing them to fuss with you.

All of this was moved out of my head and into my heart by the cancer I did get and the lottery prize I did not win. The cancer reminded me that my loved ones, especially the young ones, will have years without me being on the chessboards of their lives. The daydreams of virtually unlimited finances via a lottery brought life to scenarios of everyone I know. Sometimes I could imagine them flourishing; other times I could see them foundering. The latter was no fun, imagining loved ones’ playing the same poker games of life as now but with higher antes and not necessarily higher skill.

Mark Twain said, “Generally speaking, people are about as happy as they make up their minds to be.” I say the same applies to being skilled at the art of living. Some people want to get a new life while stubbornly refusing to let go of the old one. Except for the meaningless decorations and distractions that make up the image you present to the world, you can’t change your life without changing the way you live, the way you move through every day, the way you think. Generally speaking, people are about as skilled at the art of life as the amount of wisdom they make up their minds to gather and apply.

Furthermore, my loved ones’ lives are different from mine. They have different strengths and weaknesses, different heartaches and desires, different challenges, different circumstances. They have different experiences, different personal histories, and therefore a different perception of reality. My advice may simply not apply. They have their own grand adventure to explore.

Finally, finally, I think I “get it.”

Diary of My Death, Post #5

Useful Suggestions if You Know Someone with Cancer:

I do appreciate and am grateful for all the support I’ve been receiving. I’ve been pleasantly surprised by how many of the people who are not in my closest circle of friends (with mutual awareness of that, I might add) nonetheless actually do give a damn about me. I’ve been enjoying a level of warmth I didn’t know was there for me. I am thankful for it.

That being said, there are a few things bugging me, and they are of the kind that will probably irritate any fatally-ill people in your life, too. Here are a few things you might want to consider not doing.

  • Please quit asking how I’m feeling today. It’s not a big deal when one or two people a day ask me, but when everyone does, it quickly becomes like having 27 people remind me I am sick and actively dying. I think linguist call it subtext. I appreciate their interest, but imagine if your neighbors said to you, as you walk to your car or take out your garbage, “Hey! Just in case you forgot, you’re dying!” Say just, “G’morning!” and leave it at that. Maybe chitchat about the weather or whatever. Once you’ve looked a cancer patient in the eye and quietly offered your help running errands or keeping him company, don’t bring it up or even hint at it. “I’m going to the grocery store. You want me pick something up for you?” conveys your care, whereas looking at me with concerned, sympathetic eyes and asking how I’m feeling makes me feel like a Dead Man Walking. After a few weeks of this, it gets creepy.

    The same subtext concept applies to a daily “I’ve been praying for you!” It’s much stronger, though. Ya, like double, triple, even four-ple times stronger.

  • Please remember that for about half of the chemo treatment cycle (about one week out of EVERY two) I am sick. It feels very much like having a flu (except without the runny nose.) Chances are I am sleeping, snoozing, napping, dozing, staring at the ceiling, or hazily thinking about the upcoming Big Event and the entirety of my life. Please do not try to entertain me or plan activities to cheer me up. If you want to keep me company, great! Just sit nearby and read a book or something. Follow my lead for the level and complexity of conversation. Probably all I’m up to is intermittent chitchat.
    Two little incidents illustrate this:

    • A neighbor who was nice enough – yes, I see that – to bring me homemade chicken soup but knocked on my door like a Nazi stormtrooper and made me jump out of my skin.
    • Just before Thanksgiving, a lady friend of mine woke me (ya, in the middle of the day) just to give me a pumpkin. I DO appreciate her for thinking of me, but the gifted pumpkin wasn’t even in the proper form (pie)! I smashed the pumpkin down over her head like a helmet, spun her around to make her dizzy and disoriented, and pushed her in the general direction of highway traffic. Okay, okay, actually I smiled and said thank you, but the pumpkin-helmet plan did immediately flash through my mind.
    • Pumpkin Helmet Head

  • Please remember that during the other half of the chemo treatment cycle, on my good days preceding the next treatment and resultant week of near uselessness, I have things to do. Beside basic errands like getting groceries and doing laundry, I have new and necessary preparations to cross off my to-do list, and I have long-standing goals and projects that I’d like to advance because . . . because I’m still alive and it’s generally a good idea to keep on living until you die. There’s more to living than merely seeking distraction and entertainment. I have things to do and effectively only about half of each monthly calendar to do them. Thank you, but no, I do not want to go out for a couple of drinks.
  • Please remember that I have lost nearly all of the illusion of controlling my life. Not only is cancer taking years from me but also chemotherapy is stealing as much as half of my time left. Yes, I know in truth the chemo is extending my overall time here, but up to half that time is useless for pretty much any activity and definitely useless for any productivity. Imagine a person who was somehow able, after a lifetime of attempts, finally to be able to herd a few rascally cats in the shadows and then one morning to find himself on the wrong end of a leash in the claw of a damn big and ugly beast. Please allow me to believe that I still know what’s best for me, that I still handle my own helm. Please do not make decisions for me. (These days I am remembering – from nearly 30 years ago – my mother talking about this.)
  • I am not sure if I’m expressing this last thought as articulately as possible, or if it is the wisest, most emotionally healthy thinking, but here goes:

    It is clear that the people closest to me and the most intertwined in my life have genuine concern and the best intentions. I do wonder, though, about some of the people in my outer orbits. I’m pretty sure I am not the kind of person who makes everything about himself, the kind who demands attention and to be the center of focus (usually I’m rather uncomfortable with that, even on my birthday or whatever). My cancer thing, though, uhh, ya, I’m thinking that yes, this IS about me. If we are not very close, it’s completely okay if you don’t want to participate, but if you do, I’m sorry, but helping you feel good about your somewhat clumsy efforts and helping you deal with the issue of death just can’t be my priority. I will continue to try to be polite, but with each nearly useless week after a chemo treatment, I am becoming increasingly aware that I just don’t have the energy or time to fully extend myself for the benefit of others. Whether I live a few more months or a few more years, as always life is not meant to be centered squarely on the self, but, uhh, ya, my cureless cancer IS about me.

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