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

Posts tagged ‘terminal illness’

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?

Go to next post ==>

Diary of My Death, Post #27

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

This is what happened when I visited family and took a nap while my nephew was there. He’s 24.

Hey, I’ve said it many times: You might as well laugh at yourself, ’cause if you don’t, someone else will!

Diary of My Death, Post #26

Chemo Infusion #24 (two weeks later)

Treatment Days 297-304, 42 weeks

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 themselves and the family and friends surrounding them.

Here we go again: another chemo treatment.  Hoo-fuckin’-ray!  That means at least a week of being zombie-fied.

This round I spent a lot of time just lying on my back while listening to quiet smooth jazz, and although I could readily recall a list of things to be done, that’s about as far as I got with it.  My mental clarity and physical energy seem to be in a contest to be at the lowest level possible while still maintaining minimal mobility and rational consciousness.  It’s like a dare to get closer to the edge of a bottomless crevasse.  The line of an old song came to mind: “his brain on the edge of knife is like a BB rolling down an eight-lane highway.”

Luckily, I have friends who gently remind me that it’s okay to be useless during the worst of a chemo cycle.  Also, I have to say that it isn’t as frustrating now as it has been before.  I just care less because there’s just not anything I can do about it.  So, if my only accomplishment is making it into the shower, then it’s a good day.

On the physical side of things, the urgency of urinating has returned.  When the urge rises, it’s best to move fast.  Remember, I live on a boat, so I am always only a few feet from the head (nautical term for bathroom), and still I’ve pissed my jeans.  It’s better to wear only sweatpants so I can just yank them down.  I am sure that the Cosmic Manager of Insanely Minute Details elbows one of his staff, points through a Romper Room-style Magic Mirror and says, “See that guy down there, the one sleeping peacefully?  Let’s give him an urge to urinate and only 10 seconds to do it before he makes a mess all over himself.”

Now, for the sake of medical documentation and not puerile humor (thanks for that word, Kin-Kin!), I’m going to mention something about another bodily function.  One very common side effect of chemo is constipation, and a chemo patient gets to know it on a whole ‘nother level.  I use at least four capsules of stool softeners with pretty much EVERYTHING I eat (btw, you can get a bottle of 500 capsules at Sam’s Club for just a little more than the bottle of 50 you can get at the drug store.)  I also use increasing doses of a laxative, and from treatment to treatment it’s hard to find the right balance.  Constipation can go from just being uncomfortable to hijacking your every immediate thought and concern.  Beside the pain, it can make you sweat cold and make you feel like you’re having a 9-1-1 emergency event.

This treatment round I reached maximum pressure on the morning of the treatment, which was fortunate.  The nurse recommended a laxative with magnesium citrate, and I have to tell you, that stuff is like no other laxative I’ve ever experienced.  Within minutes – minutes, mind you! – I felt stirrings in my torso.  Strangely, the sensations were not down low but behind my ribs.  Then from the top down I felt a curling wave of coordinated force.  It felt like everything in my torso and abdomen was working together.  Nothing happened, though, result-wise.  I imagined a molecule of this magnesium citrate wearing an army general’s helmet and shouting out, “Okay, let’s do this!  If we’re going to win this war, we MUST work together!  EVERY part that can contract, CONTRACT!  Now!  Move it, move it, move it!”  Then another wave of force traveled from behind my lower ribs down through my lower abdomen.  Whoosh!  The relief that flooded through my whole body made me want to smoke a cigarette . . . Magnesium citrate is my newest, best-est atomic-laxative friend!

The other physical thing that showed up this cycle (it seems there’s at least one thing new every time) was a red rash on the underside of both forearms.  There’s not much to say about it except that with my chemo-caused dry, hairless skin, my body is just not the same body I’ve been inhabiting for 60 years.  With my beard gone (which I’ve been wearing nearly constantly since I was 19), when I look in the mirror I see less of myself and more of Gollum.  It’s a weird feeling.

Overall, I do not like this particular chemo cocktail.  The earlier treatments were not fun at all, but I felt like a person with a terminal illness undergoing treatment, and I was fine with that.  I was still in the game, albeit demoted to the minor league.  THIS shit, though, makes me feel like I’m dying.  THIS shit has brought forward in my mind the possibility that things could, at some point, turn on a dime and go downhill fast.  I vastly prefer a steady, somewhat predictable decline.

Point to be made: If a loved one of yours ever tells you he or she has had enough and wants to discontinue chemo, don’t try to convince them to keep fighting.  Living on chemo becomes less and less like living at all.

Have a nice day!

Go to next post ==>

Diary of My Death, Post #25

Post Numeral #25

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

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.

Go to next post ==>

Diary of My Death, Post #24

Post Numeral #24

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

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.

Go to next post ==>

Tag Cloud