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

Posts tagged ‘death’

Diary of My Death, Post #29

Chemo Infusion #26 (two weeks later)

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Reminder: This series of posts is not just my personal tale of woe.  I write these for myself, but I post them for the benefit of all those who are experiencing cancer and chemo directly and the surrounding family and friends living it vicariously.

With this treatment the pain in the knees was much less, but the pain in the feet was much worse.  Maybe you remember as a child playing in the snow with increasingly wet gloves and then getting the idea, when you finally did go inside, to warm your hands by putting them under the hot water faucet.  That didn’t work out too well, did it?  It felt like it was burning, didn’t it?  Ya, well, that’s about how my feet feel 24/7.  Somehow, they’re simultaneously numb and painful.  No doctor or nurse told me to expect this level of chemo side effect.  On one hand the continuity of the pain makes it easier to accept as the new normal, while on the other hand it drives me nuts with its relentlessness.

There were times, too, when the general, insistent pain was accentuated by a minute or so of intense feeling focused in one random toe.  It was as if a medieval thumb screw was being tightened on an already frozen toe.  This happened both when I was lying down and sitting up.

I’m sure you can imagine how this makes everything difficult, even simple things such as making a cup of coffee.  Understandably, my sink filled up with dirty dishes.  There is, though, one specific, necessary activity that really went to hell, and that would be getting out of bed to urinate.  As I’ve mentioned before, the chemo (or some sick demon) has drastically shortened the allowed time between the urge to urinate and the unstoppable act itself.  The end result is that even with a container bedside, I was pissing myself to varying degrees several times each night and day.  No one told me about expecting this, either.

Speaking of night and day, for many months now my sleep has been scattered around the clock.  I do not remember the last time I slept straight through eight, six, or even four hours.  No, I’m up every two hours to urinate (hurriedly!), and only sometimes can I resume getting rest.  Usually I sleep for two hours, wake up to urinate, maybe snack a little, maybe turn on my laptop with the intent of doing something, anything, and then within a half hour giving up and zonking out.  Also, empirically evident by being awake more at night and less often during useful daylight, I suspect that for its restorative effects the chemo formula contains a drop or two of vampire blood.

Added to the fatigue and discomfort of the whole chemo experience, these physical developments easily crossed over to the mental and emotional realm.  It was quite discouraging.  It does not help to know that as my cancer continues my overall discomfort will increase.  Talk about the future looking like 20 miles of bad road . . .

As each day passed, more and more I thought about cancer and chemo.  Yes, the cancer is killing me, but it isn’t the cancer that’s making me miserable: it’s the chemo.  This, of course, leads to internal debates about extending my days alive versus keeping my remaining days worth a damn.  It is not only a question of how much “torture” I can tolerate for my own benefit: it makes me wonder how much I can and will tolerate for the sake of staying around for my loved ones.  Although the first part of the question is hard to answer, the second part . . . holy shit, it makes me wonder about all kinds of things related to family, my ability to love*, and what I think of myself.  Here’s a tip for you readers: don’t think about these things when you’re feeling mightily discouraged.  It’s curious how feet that aren’t frozen but feel like they are can make someone question how long he wants to live.  

I have a couple of light-hearted little events I could include in this post, but no, I won’t.  I’m sorry, but this treatment cycle has been some serious shit.

Diary of My Death, Post #28

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

Reminder: This series of posts is not just my personal tale of woe.  I write these for myself, but I post them for the benefit of all those who are experiencing cancer and chemo directly and the surrounding family and friends living it vicariously.

This is the first treatment of the modified schedule, which is now one treatment every two weeks.  I had complained to my doctor that I was frustrated with how useless the chemo was making me, and he agreed that at least a modicum of “quality of life” was necessary.

Nonetheless, this treatment was hard and a bit scary.  Maybe 24-36 hours after the infusion my knees began to hurt, and they hurt badly.  WTF?  My knees are not directly connected to my pancreas and liver, are they?  At one point, getting out of bed to urinate, my knees complained enough to prompt an image of both knee joints rapidly becoming just bone powder and then collapsing with an internal explosion.  I imagined myself walking around on my knee stumps with my lower legs flopping around like socks pulled halfway off normally-attached feet.  I considered using some of the high-octane painkillers I have, but first I tried some of my medical marijuana.  It helped enough that I was able to fall asleep!  (I’m thinking I should use it much more often than I do.  Btw, get a little $10 pipe because your fingers will be a bit too numb to roll joints worth a damn.)

I think in an earlier post I mentioned the random muscle spasms occurring mostly in my thighs.  This week I noticed that the spasms happened almost exclusively when I was horizontal.   The human body is just full of subtle mysteries.

I believe this chemo formula contains a drop or two of vampire blood.  For most of the week I was up all night and asleep all day.  When I say I was up all night I mean only that I was awake all night, not up and out of bed.  I didn’t count hours per day, but I slept what felt like constantly, stirring only to drink, snack, and urinate.

It seems every treatment brings some new bodily reaction, so this round’s surprise was swollen feet and lower legs.  That stretches the skin, of course, and that tightness makes it more sensitive.  In places it was red and hair-thin cracking.  When standing or walking, it felt like there was no flesh between my foot bones and the bottom skin.  It was highly uncomfortable.  I slept with both feet elevated about 10 inches, and in two days the feet and lower legs were mostly normal again.  I don’t know if the edema is directly from the chemo or the result of not physically moving enough to get my heart pumping, but either way, it’s always something . . .

Also with the feet, the nerve damage makes them (and my fingers) feel cold and numb.  Since I’m not sure when, I feel like I’m shuffling around with my feet in tubs of iced water.  Someone here at the marina noticed I was walking oddly and unsteadily, so he gave me a cane.  Yep, I crossed that line before I even saw myself approaching it!

All of this sounds like great fun, eh?

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Diary of My Death, Post #25

Post Numeral #25

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Chemo Infusion #23 (one week later)

Treatment Days 297-304, 42 weeks

This is the second treatment of this chemo’s cycle; it’s three weeks on and off.  It’s kicking my butt.

I have NO energy.  I snooze, I snack, I stare.  When I do get vertical, I do ONE simple thing (like make coffee), think about doing a second simple thing (like taking out the garbage or picking up dirty laundry from the floor), then decide no, I need a nap.  Thank Modern Times for paper plates!

I have a near constant awareness of nausea, just a touch of it, just enough floating at the edge of my consciousness for me to be aware of it.  I have little appetite, and when I do fix food, I eat only half of a normal portion.  And nearly everything tastes vaguely salty:  what’s that about?

Now that I have a completely hairless head and face, I look more like a post-apocalyptic atomic radiation zombie, but I’m thinking maybe I’m turning, partially, into a vampire.  Many months ago I mentioned that while under the influence of chemo the clock means nothing to me, and that’s even more true now.  If I do anything productive at all (like writing this blog), it tends to happen in the middle of the quiet night.

With this new med, I’ve been getting more random firings of my pain nerves.  Legs, shoulders, torso, and a couple of times behind my right eyebrow.  I’ll be lying motionless in bed and for no apparent reason both thighs will spasm in pain.  I feel my face grimace, but it last only a second or two, and then a few more seconds to fade away.  The pain itself isn’t all that intense, but it is annoying as hell.

Most of the time I’m in a decent mood, and if I put humility aside, well, hell, all things considered, I’m usually in a pretty damn good mood!  I’ve fought too many protracted wars with clinical depression to be discouraged by such a little, pesky thing as Death looming in my foreseeable future.  Y’know, there’s a thought, for all of you who do not understand clinical depression: this whole cancer and chemo experience is pretty much the physical form of depression.  For those of you who don’t “believe” in depression, put that in your pipe and smoke it!

Okay, noting that I am most often in a fairly pleasant state of mind, I have to say that I don’t always wake up that way.  Nope.  During the days immediately following a treatment, when I’m sleeping two hours at time and feel sick and as weak as an infant, I wake up channeling sailors: “Fuck!  Fuck, fuck, fuckity fuck!  More of this fucking fuck-shit!  Cock-biting fucking shit!  Fuucckkkk!”  I think it comes from leaving the bliss of sleep and silly dreams to be confronted with the uncomfortable minute-to-minute reality of my current and remaining life.  I know, on a deeper and deeper level, that I am never, ever going to get “back to baseline”, and this is my new (and NOT improved) standard.

Cancer sucks.

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Diary of My Death, Post #24

Post Numeral #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

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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