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

Archive for October, 2019


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.

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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