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

Post Numeral #23

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Chemo infusion #19 (one week later)

Treatment Days 260-266

This is my second treatment with the chemo cocktail.  The doc told me that there are three cocktails for my cancer and that on average each works for about eight months.  So, my blood test numbers and three-month CAT scan (and a growing ache in back about where my left kidney is, balanced by another growing ache on my right side, in front, just above the top of my pants) indicated that the cocktail I have been using since this started was losing its effectiveness.

My first treatment with the new meds was just one week earlier.  The new schedule is three weeks on, one week off.  To me, that sounds like more down time per month.  My first “taste” of the new chemo wasn’t pleasant.  My appetite pretty much disappeared, and my hair started falling out fast.

I’ve been bald on top since my late 20’s, and beside a couple of cases of sunburn it didn’t bother me at all, so I don’t really care much at all about losing my hair.  But I don’t like losing my beard.   I’ve worn a beard almost continuously since I was 19 (that’s 40 years, y’know), and the few times I shaved it off it would be only days before I started growing it back.  It’s part of the face I’ve seen in the mirror for essentially my entire adult life.  Losing it is a little disturbing.

Over the week between first and second treatments with the new meds, I lost six pounds.  I wonder if it was from not eating nearly as much as I regularly do, or if a significant part of the six pounds lost was in total body hair.  Head, beard, body, arms and legs – after all, there’s been a reason my nieces and nephews call me, “Unckie Monkey!”

The good thing about this second treatment of the new chemo cocktail was that my appetite returned to near normal.  I suppose the temporary loss was due to my body getting accustomed to the new cocktail.

Another good thing was that on the recommendation of a doctor, I made an appointment with a therapist.  The doctor told me that it sometimes a great idea to have someone neutral to talk with about the whole cancer thing, and as soon as she said it, I thought, “D’oh!” and mentally hit myself with my palm on my forehead.  I immediately thought of how cancer conversations with loved ones are harder not because of the subject itself but because I try to use the most palatable phrasing.  Once in a while a neutral but knowledgeable listener could be a great relief.  D’oh!

The other good thing was that I received my state-authorized medical marijuana card.  Woo-hoo!  I had smoked more than a few doobies during my high school years, but since then, in the intervening 42 years, I’ve partaken in maybe half a dozen smokes.  It just wasn’t my thing, not worth the bother.  But now, in my current circumstance . . .

I went to the nearest state-approved dispensary and got three products: buds for smoking, for immediate reaction; THC tincture for ease of use, for delayed absorption; and CBP oil, for the benefits (better appetite, better sleep, better mood) without the intoxicating high.  During non-chemo weeks I wanted to be as clear-headed and productive as possible, but during the chemo weeks I wanted to get stoned out of my gourd.  If I was going to be rendered useless by the chemo, I might as well do it with a grin on my face.

I tried the THC tincture first.  I put four drops under my tongue, then remembered the guy at the dispensary said not “four drops” but “start with one drop, wait at least a half hour, then another drop, and so on, until you see what works for you.  Most people build up to four drops at a time and are good for hours.”  Whoops.  A half hour, maybe 45 minutes later, ya, hell ya, I was rather high.  I liked it.  It was exactly the kind of emotional vacation (well, emotional break-time) that I’d been craving.

For those of you totally unfamiliar with marijuana, it doesn’t make you hallucinate or become as unsafe as being drunk.  It relaxes you, maybe makes you think silly thoughts, and allows you temporarily to forget about the serious shit going on in your life.  For chemo cocktail consumers, it is wonderful.

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Post Numeral #19

Chemo infusion #18 (two weeks later)

Treatment Days 245-259

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

(For the past three treatments I’ve not gotten around to posting here, but I did take notes.  Also, my count of treatments in these posts doesn’t match up with the infusion center’s count, so I’m pretty sure I overlooked a couple of treatment descriptions.  Whoops.  I think this forgetfulness falls under the description of “chemo-brain.”)

I’m tired.  So, mostly I’ve been just enjoying the weather.  It’s the end of May, and the weather has been warm but not hot.  I made and rigged a hammock athwartships in my [boat home’s] shaded cockpit, and although a tad too narrow it works pretty well.  I envisioned a sort-of sling chair / bench, but that didn’t work out so well.  Sometimes it’s best not to overthink things and just go with simplicity.

I love summertime, especially late summer, which is through most of the month of September.  Then the natural world is ripe and sensual, full of simple pleasures.  Now, in early summer I like lounging in my cockpit, enjoying the warmth, the sharp Kip! cry of the ospreys and the songs of various birds.  I watch dragonflies exploring the nearby salt grasses, watch the silent clouds pass by far overhead.  One afternoon I saw the clouds darken, and soon enough I felt a thunderstorm arrive, felt it in the breeze just moments before thick raindrops began plopping onto my canvas awning and plunking into the creek.  As the storm came in, the wind gusts pushed my boat-home against her dock lines, but she settled down as the wind and rain steadied.  Raindrops on the “roof” – what a great lullaby for afternoon naps!

If I haven’t mentioned it before, cancer and chemo make me often feel like a dog lying in the grass in the middle of the yard, head up, just looking around, maybe watching insects fly nearby, and showing no intention of getting up and doing something, anything.  Like the dog, I don’t want to do a damn thing, and I’m totally content just to be still and look around.  To a friend of mine I mentioned enjoying just watching the summer clouds pass by overhead, and a little later she said something about it being fine for me to spend precious time just looking for shapes in the passing clouds.  No, no: she had it wrong.  Looking for recognizable shapes in the clouds was too much effort.  I just watch them pass peacefully over my creek and over my head, and that alone is the perfect amount of occupation and entertainment.  There is, y’know, a great sense of peace that comes with accepting your approaching death.

–  –  –

For you caregivers, understand that disrupted sleep is a significant factor in a patient’s energy and mood.  On the night before a treatment, I don’t want to go to sleep, and then when I do, I don’t sleep well.  It’s not so much extra anxiety about the imminent chemo treatment as it is just a normal bit of dread of unpleasantness, like an amplified version of the Sunday night sobering you feel when you’re stuck in a job you do not love but have no intention of leaving soon.  Then I get up at 5 a.m. to shower and get ready for my ride to the infusion center, and although I have taken naps there, it isn’t easy.  I bring earplugs to muffle the nurses’ background chatter, and the reclining chairs are really comfortable, and the nurses bring you pre-warmed blankets (!), but you can’t really rest.  Whenever the nurses start the next IV bag they have to scan your barcode bracelet and have you verify your name and DOB, so there’s that, and they’re pumping you full of fluids so you have to relieve yourself, and then as the day goes on and the IV chemo goes in, your body itself gets uncomfortable.  Even though you’re getting fluids added, it is nonetheless a big drain on your body.

With this most recent treatment, I thought I would nap immediately when got home but I didn’t, couldn’t: I just rested horizontally for a half hour.  Then I was up until midnight but mostly only watching short YouTube videos.  The point is, you start the treatment day short on sleep and you won’t get it halfway right for days.  You come home from the infusion tired, but the steroids keep you awake.  Then you sleep, but you get up every two hours because your kidneys are processing the chemo drugs.  So, cancer, chemo, and disrupted sleep: a great combo for sucking your energy and taxing your patience.

Caregivers, when a cancer patient is sleeping, please take extra steps not to disturb him.

–  –  –  –

This was my first treatment with a new chemo cocktail.  I didn’t like it. More on that later, but for now I’ll list just two reasons. The first thing I noticed was that it punched my appetite hard, “in the gut.”  Even when I felt hungry, I’d fix a small plate of food I liked but halfway through it I’d lose all interest.     The other noteworthy difference in side effects struck me as a bit bizarre: I got joint pain in my knees.  I’m 59 and I used to be a runner, but I’ve had no real problem with my knees, ever.  I’m surprised the pain didn’t show up in my sometimes-aching feet instead.  I had to start using a thin pillow under or between my knees to even think about getting any sleep.

–  –  –  –

Lately I’ve had a near total lack of productivity, and by productivity I mean anything that wasn’t necessary, such as making simple meals to eat.  It is hard to identify the reason behind this – is it the cancer, the chemo, my emotions about the cancer, my thoughts not so much about the cancer but definitely about the chemo, or my clinical depression rousing for another round in the ring?  I certainly could use not a physical but an emotional vacation.

Well, hooray!  An emotional vacation is on the way!  I’ve applied to Maryland’s medical marijuana program, and my ID card is on its way!

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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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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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This is an old piece of mine, written many years ago. I had it on Hubpages for awhile, where it won an award for Best Hub (article) of the Month!

One of my most memorable coffees has a flavor that gets more distinct and recognizable every year.  When I have this rare brew, it always an autumn day, and my father and I have spent the afternoon working outside, raking and burning leaves, or cleaning out the garden, or winterizing a car and then washing our hands in gasoline that always somehow feels much colder than the weather.  We sit on the concrete steps of the back porch, having that warm, brown coffee and resting before we go inside to clean up and cook dinner.  Relaxed by the day’s exercise, he’ll mumble something, and although in reflex I only glance at him, my eyes are magnetized and quickly return to his face.  He’s almost in profile, looking out into the yard, squinting a little into the setting sun that shines dull red on his skin.  He tilts his head down to sip his coffee, and I notice the gray stubble on his cheek and the thinning white hair that curls out from under the paint-spattered blue knit cap that sits, as it always has, precariously on the back of his head.  A dog barks behind the neighbor’s house, so expectantly my father and I look out into the next yard, not knowing what will come into view.  We sit together on the hard steps of the back porch, breathing deeply the cooling air and soaking in the last of the setting sun.

In my Navy years, the best coffee was on the 4-8 watch, especially when we were at sea in the tropics.  With the crew asleep and the six 12-cylinder diesels snoring steadily like a group of drunken giants, the ship was peaceful, and I’d push open the weatherdeck door to watch the rising sun melt the night sky.  I’d turn my back to all the alarms and gauges and lean against the doorway, listen to the black water sliding along our iron hull, and, waiting for enough light to distinguish the horizon, just look out into the fading darkness.  With each gentle roll of the ship the warm salt air would breathe in and out of my little iron cave, ruffling papers on the desk, and I’d be sipping not the day’s first but its best cup of “joe.”

In the autumn mornings of my junior year in college my girlfriend and I would walk hand in hand to the edge of Penn State’s main campus to The Ye Olde College Diner, open 24 hours a day for something like the past 47 years.  We’d get a cavernous wooden booth with dark Naugohyde seats and have a big blueberry pancake breakfast, and then, in no hurry to go anywhere, we would sit and talk and sip coffee and smoke menthol cigarettes, sometimes holding each other’s hand across the heavy wooden table.  On rainy, cold days The Diner was usually subdued and hushed, even cozy, but on bright, crisp, colorful October Saturdays The Diner serviced hundreds of fad-wearing students and their visiting families, all anticipating a day at the football game and tailgates, all talking at once.  We would catch bits of conversation, just a phrase or name or a laugh, but mostly the voices blended together into a hum above the scrape and scuffle of tables and chairs being moved and adjusted, the clink of heavy ceramic dishes and the tinkle of silverware, and the bangs and shouts and clatter from the kitchen.  And my girlfriend’s soft voice, quiet and pretty, separate from the noise . . . The coffee at The Diner never again tasted as good as it did during that autumn with Lori.

There were three winters that held the best Sunday morning coffee I’ve ever known.  Separately we’d stumble into the kitchen, my girlfriend, her son, her mother, and me, and with the appearance of each new face we’d contest who had the morning’s worst bed-head hair.  We’d have bacon and cheese and tomato on English muffins, eggs scrambled with scallions, and breakfast sweetcakes, and we’d lounge around in sweat pants and wool sweaters and thick socks, reading the Sunday paper and recounting the week’s adventures.  Her sister had taken to driving 45 minutes to be there for coffee, and almost every week her ex-neighbor and long-time friend joined us, once even driving over in her houserobe and slippers.  Occasionally her other son or some of the boys’ friends would show up, and they’d trade young men’s stories of wild Saturday nights, entertaining us all.  On those bleak winter mornings when no one wants to bother going anywhere, still people would come to Suzanne’s kitchen, and Sunday morning coffee often lasted way past noon.

Those three winters with her have also borne a new tradition: Christmas coffee.  Ethiopian Sidamo, New Guinea Peaberry, Sulawesi . . . Shopping for it, lingering among the bins of fresh gourmet beans, has become my duty and, for me, another sign that the holiday season is at its peak, just like the sight of nearly empty Christmas tree lots.  Christmas morning we’d know that we had special coffee, but still everyone tore off the wrapping to discover the flavors.  Three generations lounging together under the Christmas tree, losing our coffee mugs under discarded wrapping paper, admiring each others’ gifts and playing with ridiculous toys, pushing the overly affectionate and easily distracted dog toward any other family member, lying on the floor near the fireplace and wanting nothing ever to change: now that’s Christmas.

We do lazy mornings in the summertime, too.  There are those easy mornings out on the shaded deck, reading the newspaper and with a bare foot mindlessly rubbing the dog’s belly, glancing up at the blue sky and having just one more cup before going in to the office . . . And there are those mornings when I’m the first to awaken on family vacation at the beach house, especially that first morning there, that first morning I wake up free of my normal work routine: while I wait for everyone else I sit outside with a cup of coffee, just damn glad to be there and not in a hurry to do anything, the sun warm on my cheek, the ocean sparkling in my eyes, the cries of gulls and the smell of sand, all of it sifting memories into my morning’s slow thoughts . . .

You have to drink coffee for a couple of years before it wets that certain part of your tongue and warms that certain part of your belly, and then you start finding many cups that taste especially good.  There’s the coffee had after a truly exhausted and refreshing sleep, and there’s the cup poured for you as you return from driving barefoot and un-showered to fetch donuts on a hot Saturday morning.  There’s the precious mud had with a hangover, when you sit thoughtless and stare into your mug at the shiny reflections from the oil of the coffee beans.  There’s the coffee used to kill time between job interviews, and there are those endless cups in the middle of a day when you just don’t want to go home or do anything but let your life roll around in your head.  There is, of course, that wonderful cup lingered over after a good dinner when you want an excuse not to get up and leave your favorite restaurant.  There’s the roadie cup as you commute to work on a cold and oppressively gray morning, and there are those delicious cups – preciously limited in a lifetime – poured from a Thermos as you drive alone across several states straight through an empty winter night for the sake of young love.

The best coffee ever?  I don’t know . . . it might be the cup I’ll have as I watch the face of a friend as she reads what I’ve written here.  We’ll see; the best coffee can’t be brewed, only poured.

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