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


From my friend Zahn –




I asked

I begged

I prayed

I was gifted

A glimpse

The Fall Equinox

Equinox literally means “equal night.” Day and night are each 12 hours, and the sun rises in true east and sets in true west. The Sun appears to “stand still” and find balance and strength before continuing. It feels like a pause to me. Like a high wire artist who stops in mid performance to check his footing and his balance and progress before taking another foot off the wire. The Equinox is a time for us to find our balance for as the season changes so does our focus and perception.

I have always loved marking time through the changing of seasons. Only now I like to mark time in small increments, moment by moment, and not in big chunks, or with a vision too far ahead. Though…

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Diary of My Death, Post #29

Chemo Infusion #26 (two weeks later)

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.

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.

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 #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!

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!

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