On Being Ill: Taking Responsibility for One’s Own Decisions

When you have cancer you wind up taking a lot of medicines & how to take them & being given advice about food, almost all of them offered on good medical authority & with the best of will. When you start out on these processes you try to follow them to the letter–which pills go with food, which without & how long before, how many times a day & all the rest. If you follow all the instructions to the letter one would do almost nothing all day but organize one’s pharmacopeia.

Having now had some experience as a consumer–in both the biological & economic senses–of cancer medications, I’ve arrived at a couple of basic conclusions, to wit: 1) Follow basic dosage instructions especially for number of times a day & spacing between doses; 2) cluster doses by time of day into groups of medications & organize them into a pill holder; 3) try to take the ones supposed to go on an empty stomach at the same time even if it means fudging the times a bit–one really should not have to be worrying about what to take & when more than four times a day. Even cancer patients have things to do other than being sick. 4) Start pain medications at the lower range of the recommended dose, but once you get used to their effects don’t be afraid to adjust them upward, though without exceeding maximums, at least by very much. You can also “stack” pain meds a bit toward higher concentrations during parts of the day you need them most.

But the take-away here is that you don’t have to be neurotic about scheduling your medications. Some goes for eating, both what & how much. I find I eat mostly snacks & eat more sweets than I “should,” but it’s my body & how I feel today is at least as important as how I might feel in a week or a month or a year. Ultimately, this all applies to whether to take some medication at all, up to & including the miracle drugs designed to dissolve tumors or whatever; it applies, too, to how aggressively you decide to oppose your own illness & how much to understand the illness as a part of the life process. (This latter goes beyond the original intention of this post & perhaps I’ll return to it another time.) Finally, all this is about deciding that–following the advice of your doctors & family members & friends–you must decide makes you feel best right now.

It is easy, of course, to use the above as an excuse for being perverse, neurotic & self-destructive. That obviously is also a choice, but not one I would encourage anyone to follow, no matter how shitty & hopeless some mornings feel when the rest of the world is getting up & going about its usual business. Take care of yourself; don’t be intimidated by authority; don’t be passive.

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Note: It’s a mark of how spaced out some of the new meds I’ve been taking this month that spelling errors & typos persist on the blog longer than they should. Sometimes no doubt forever.

 

Pain & the Absence of Pain, Or: “There is a Crack in Everything . . .”

After cracking (an apparently not vital for locomotion) part of my pelvis late last week & living though a weekend of increasing pain, I’ve been astonished at how quickly the pain has resolved & my psychological orientation turned around. My bones have been weakened near the site of the tumor around my lower spine because of radiation & chemotherapy, so putting a little extra strain on it by bending to pick something up apparently caused a crack. It began like a bad muscle ache on Friday & got worse until Tuesday when I got in to see my oncologist. (Could have gone to the Emergency Room but wouldn’t have been numbed & told to see my oncologist. Figured I’d just wait.) And I have to say that once I arrived my team swung into action with X-Rays, an IV for morphine, steroids . . . so that by the time I left I was already beginning to feel better. And at this point, about a week after the incident, I feel better that I had before I injured myself. The added attention to the pelvic pain has spilled over & is alleviating some of the more general pain associated with the cancer. It’s not as if I’m dancing–I still walk with a walker–but I feel almost well.

Which is a little unsettling. When I feel this well, it can be hard to recognize that I am still sick with kidney cancer. Most of this is no doubt a bounce-back effect from last week’s misery. When severe pain is reduced the body goes into a kind of celebration & pulls the mind along with it. I’m not complaining. I’ll take it. One result has been a spurt of writing–several short poems (not usually my best mode) with which I am quite happy. I’ve secretly sent a couple to friends for whom I thought they would have special resonance, but amn otherwise holding them close to my chest until I’m more sure of the language I’ve written in, which is much more Harmonium than Spring & All. More lush than I have been accustomed to working in.

The Most Beautiful Morning

It is very early autumn here in the north country, the tops of the maples just beginning to change color while the lower branches remain green. The days are warm, the nights cool. This morning after Carole left for work I took the dogs out on the deck with me and sat for a while enjoying the still-cool morning air, the warm sun, the breeze. The sky was an expanse of pure blue beyond description & the river picked up that color, the surface broken by small wavelets that sent points of brilliant silver light in every direction. It occurred to me that, despite everything, this was the most beautiful morning of my life. Or perhaps it was because of everything. The ten-thousand things in perfect harmony, so that even the sound of a truck grinding its gears as it rattled over the bridge fit perfectly into the music of the morning.

The Quality of Time

It has been a little over a month since I’ve posted anything in this space. The hiatus began as carelessness, I suppose, or distraction by my own troubles, but then continued more or less intentionally. I’ve been taking a kind of vacation from human contact, listening to audiobook potboilers, surfing YouTube & napping as often as I could manage to fall asleep. I think what happened–this in retrospect–I had gotten tired of my own situation & wanted to get away from it. Time’s quality changes inexplicably.

I now find that, without consciously attempting it, that I am again interested in communication & my life as a writer. One grows tired of vacations after a while. I’m not yet sure what will come of this, but I expect to begin posting here again, at least occasionally. Not sure what I’ll write about, probably reading. I’ve just finished rereading Louis Menand’s The Metaphysical Club & have begun Isabelle Stengers’ Thinking with Whitehead. The plan to discuss the former with my friend has fallen through, mostly because of the vacation I have been describing, partly because of his pressure of work. I hope we will still have a chance to discuss books / ideas online.

Time

One of the main problems with being sick is that time inflates & at the same time the number of things one can do to fill the time is reduced. And as time thins out, fantasies & obsessive thoughts emerge from the void. Small things are magnified. Generally, I can slide away from such thoughts, but some days it can be difficult. When I can focus, I work on poems, but I’m looking for projects that will absorb my attention even when I’m feeling scattered. Suggestions? Note: I don’t watch movies.