Diary of My Death, Post #24

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Chemo infusion #22 (two weeks later)

Treatment Days 289-296, 41 weeks

I did not receive my third scheduled treatment with the new chemo med, Abraxane, because my blood platelet count was too low.  I was sent home until the following week, and that extra week of “detox” worked out well.  Some energy returned (I learned that blood platelets contribute to that, which surprised me), and I found I was getting a bit bored.  That’s a good sign because it means you are exiting Zombie Mode.  I was able to move some tasks from the Not Absolutely Necessary Right Now list to the Daily To Do list, and being somewhat productive felt very, very good.

I did a little canvas work for the marina owner’s 100-foot power yacht, mostly just patching and adding abrasion protection (pieces of a cut-up old inflatable!) to some pieces I had made two years ago.  It didn’t matter that it wasn’t a start-from-scratch-and-create-something project: it was useful.  Also, two days’ work (slower than usual) was plenty tiring.  The evening I finished and put away all of my equipment, I sat down inside my boat (home) and mentally said, “Oooph.”  I slept well that night, better than I had in I don’t know how long.  When I was carrying scraps to the dumpster I ran into some people I knew, and one asked me why I was working.  Without thinking I answered, “Because I can.”  After weeks of zombie-hood, it felt damn good.

Okay, some general observations of what cancer and chemo have been doing to me:

Starting months ago, I noticed that I was occasionally, involuntarily taking several sharp breaths, possibly replacing yawning.  It happens once, twice, and you don’t pay much attention or attach any significance, but then one day you realize that it’s a new behavior that’s here to stay.

Similarly, people from way back in my life – like high school! – have been showing up for cameo roles in my dreams.  I’m sure it’s simply my subconscious sorting through my life and preparing to close up shop, but after the surprise of the first one or two, it’s giving me a weird feeling that I can’t yet articulate.

And some more specific, recent events:

I’ve mentioned that a side effect of chemo is neuropathy, commonly manifesting in tingling, numbness, and cold sensitivity in my fingers and toes.  At first – many months ago – the cold sensitivity kicked in only when I would touch something actually cold, such as something taken from the fridge.  However, it has worsened, and a month or so ago I realized that for me cold is now defined as anything less than body temperature.  It’s now summertime, and even in 80-degree weather my fingers and toes feel cold, the kind of cold you felt as a child who played with increasingly wet gloves for too long in the snow.  It’s a real bother.  So, recently, one night I went to bed with cold fingers and toes, and the strange thing was that even under my bedding, and wearing socks, they did not warm up.  I woke up several times through the night, with my fingers and toes freezing.  It happened only that night, so I hope it doesn’t become common. 

Also, I’m thinking that it is not only cold sensitivity (pick up something from the fridge and it feels like it’s from a deep freeze) but also just any tactile stimulation.  After all, it is summertime, so very few things that I touch aren’t at least room temperature, usually about 75 degrees inside, 80 or 85 outside.  I touch my fingers to my cheek, and my cheek does not register cold even though my fingers feel like they’ve been iced.

Lastly, I saw the therapist again.  She helped me see that a recurring and currently lively frustration is actually something I’ve been struggling with for a long, long time: personal boundaries.  The frustration sprouts from interactions with people who are taking my time, using my energy, for what reason I’m not entirely sure.  For example, several acquaintances repeatedly say to me, essentially, “I know you said you don’t like being unnecessarily reminded of your dire circumstances, but really, even though we’re not close enough to have each other’s phone numbers, and I’m too lazy or interested enough even to read your blog, somehow I am special, so how are your treatments going?  How are you feeling?”  They’re more curious than caring, for sure, or maybe they just want to make themselves appear (in public or to themselves) to be more caring or less clumsy than they are.

I try to politely remind them that I asked them, then told them to ask me only about the weather or whatever, but sometimes I have to stop myself from allowing my quickly-changed mood to make me shout at them, “Shut the fuck up!”  I’ve come up with a new policy: if a person, during the past 11 months of my treatments, hasn’t offered help in any way (such as bringing me a meal or running an errand), I’m not answering his questions.

By coincidence I came across an article on the web, My Friend is Dying and Has Asked Me Not To Contact Her.  It’s in an Advice Column format, and the reply to reader’s letter is a pretty good description of what goes on inside the head of a terminal illness patient.  I suggest y’all take a look at it now (or soon) because you might remember some of it when you have a terminal patient in your life.

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Diary of My Death, Post #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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Diary of My Death, Post #22

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Chemo infusion #18 (two weeks later)

Treatment Days 245-259

(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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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 . . .

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Diary of My Death, Post #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!

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.

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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