The lingering shadow

Most people who have recovered from cancer, strokes, or heart attacks are happy to still be here; and there’s not much we can do, usually, other than shrug and go along with it, taking whatever drugs, doing whatever exercises, diets, or surgery, we are told to take or do.

That makes it easy to have a “good attitude,” at least to other people. Still, there are some things you don’t see from the outside, and I doubt I’m alone in this.

dave with another Valiant

I gave up an adrenal gland, kidney, and spleen, and one other organ, but in the end, I drink more water and less alcohol, and that’s pretty much the impact of the surgeries. There are other problems, though, which seem to be fairly common.

Everyone’s chemo is different; doses and chemicals vary, some get infusions and some take pills. In my case, it was pills, up to 12 grams of mitotane (Lysodren) per day, which, since it builds up in fatty tissue and then gets dumped into the bloodstream when fat is burned, comes with regular temporary overdoses.

There’s a long list of side effects; for me, it was mainly…

  • Short-term memory loss — with some permanent after-effects
  • Possibly some long-term memory loss
  • Insomnia
  • Loss of focus and drowsiness (partly due to lack of sleep)
  • Memory loss
  • Nausea and “bad tastes” for common foods
  • Alternating diarrhea and constipation
  • Inability to track time
  • Memory loss

Under the drugs, I had to live by lists. I couldn’t stop working, even if I couldn’t work effectively, and made far too many mistakes, particularly with unseen word-substitution. I had no focus, and a sporadically functioning short-term memory. If something wasn’t written down on my list, it didn’t get done. I still tended to go off into a daze. If you wondered why I started going through Allpar’s “back issues” to improve and illustrate them, now you know.

Poor memory leads to mistakes, like posting a story on a new feature that was launched a year earlier. It leads to embarrassment when you introduce yourself to someone once a week as though you’ve never met — nobody likes that.

I also made other kinds of mistakes, partly judgement, partly memory, partly word substitution. I started recalling the wrong word, and didn’t see it. I’ve always done this now and then, but it started to become a regular thing, and nearly everything I wrote ended up having at least one totally wrong word or big mistake.

Working in a semi-daze leads to posting things by accident, changing things mistakenly, mis-programming. It was a mess. In many ways, it still is.

I’ve been off chemotherapy for, I’d guess, a year (I still can’t really track time, but I never did that well before, either). While my short-term memory has largely returned, it’s not fully functional; and I still make foolish mistakes more readily than before. My ability to recall words and names appears to have been permanently damaged.

I don’t quite have the stamina I used to have, though that’s getting better, too. I’m able to do more for longer, and to travel better. I can handle full day events now. It takes a while to get the strength back.

Other cancer survivors have reached the same conclusion: you may look fine on the outside, but it takes longer to recover inside — and even if you do, some things never quite come back. I don’t know if others have had the experience of screwing up while “under the influence,” and thereby losing opportunities and respect — but I suspect many people have.

It’s hard to explain to people, especially people who are angry with you for some slight or screwup, without seeming to be looking for excuses or pity. I’m not looking for pity — just trying to explain that it’s not intentional, not a character flaw, it’s just the way it is. It would be easier if, on the days when the stars align poorly, I recognized that I shouldn’t be doing anything that others can see, shouldn’t do anything without checking three times; on those days, judgement seems to fly away. I get full strength maybe one or two days a week, and bad days maybe once or twice a week as well.

Some people will say they admire your attitude for working it through and not, well, I don’t know what the alternative is. Others may resent you for playing the pity card or something. Regardless, I don’t think people in this position have much of a choice in what we do. People keep going in all sorts of crazy situations… dare I bring up On The Beach?

Let me reach out to you, fellow cancer survivors, stroke survivors, or other major-health-problem sufferers: has it been the same for you?