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?

2 thoughts on “The lingering shadow

  1. PurplePearl

    A neighbor of mine, a local school principal, mentioned to me once that it surprised him at the way recovery works from a major illness. Under normal conditions, we get sick and as we get better, we improve in a more or less steady way. With major illness’, it seems to be a more jagged line of improvement with frequent backslides.

    Today, I feel like I can go back to work as normal, tomorrow, I may feel like I’m completely dependent on my support group to survive. It can be due to the weather- a change in the atmosphere is known to impact our health in general, but as we recover from a major illness, those minor changes create a butterfly effect that can have dramatic impacts. It can come from overstimulation, fatigue, stress, or any little thing.

    In my own case, I might feel fine in the controlled environment of my home, especially if I’m alone and it’s quiet. Add people, and I might deteriorate. Take me into the brightly-colored fluorescent environment of a store, and I’m likely to become incapacitated. I can be doing great at the park and then something catches my eye and makes me turn my head abruptly and the next thing I know, I’m lying on the ground and may need to be carried home. I have a cane for good days, a walker for average days, and a wheelchair for hard days.

    In my case, it is brain damage, so I don’t have much opportunity to improve. Thanks to neuroplasticity, I am building new pathways, but that process takes years or even decades and is likely not permanent. I am lucky that my actual memories are intact, but the part of my brain responsible for retrieving them is damaged. My memories are jumbled. Today, I might remember something from decades ago, tomorrow, I might not recognize my closest friends and family without effort. Ultimately, as I age, those new pathways will be the first to suffer. If I push myself too hard emotionally, mentally, or physically, I will exhibit all of the symptoms of a stroke.

    For several weeks now, I have been struggling- forgetting to eat, forgetting to turn off the stove or the sink, forgetting to zip my pants, forgetting appointments, getting lost, struggling to stay awake and struggling to stand. Is it a problem of my medications? Is it the beginnings of the decline that I can anticipate? I’ll find out next week, or at least, I have an appointment next week.

    The hardest part is that I don’t even know what “normal” is anymore.

    I watched a TV program on some computer site- I don’t know how to use most technology, so I can’t tell you where- “Dirk Gently’s Holistic Detective Agency.” One of the characters was asked, “How are you?” and replies, “It’s complicated.” I think that sums up life during recovery pretty succinctly.

    I think that for many survivors, it either becomes a free-fall into depression and frustration (particularly when there are permanent, severe deficits in ability), or it becomes a reminder of the beauty and fragility of life. Especially when the brain is involved, the emotional parts of the brain are very fragile- especially the positive emotions. (We don’t need happiness to survive, it’s a newer evolutionary adaptation, and therefore easier to damage.) Most people with brain damage end up losing their joy, their hope. Anger and fear survive. I’m fortunate that the opposite happened to me- I lost almost all ability to feel anger and fear, particularly for more than a few seconds. My positive emotions are blunted but intact.

    This may be an abrupt shift because I have lost track of what I was saying and am having trouble seeing now, but I would like to add one thing to whatever I have said about the impacts of illness.

    When I go to my 10-year-old daughter’s school, I look absolutely fine. The bright colors, the abrupt pattern changes, the milling kids and parents wreck me. Within moments, I am struggling. Sometimes, I see the look on the faces of others as my daughter helps me stagger through the crowd. I suspect that more than a few assume that this poor girl is dealing with a drunk father at a school event.

    We don’t keep my condition a secret. At one party, a “life coach” told me that I should hide my condition. I’ve had people tell me I shouldn’t rely on my cane, that all I need to do is exercise to rebuild my strength. However, I am doing remarkably well and I hope to be an advocate for people with “hidden handicaps.” Plus, it’s hard to hide the problem when I have to be carried out or when I’m crawling along a sidewalk to get to safety.

    My uncle got Parkinson’s Disease. He fought against it- he started sculpting. He would make huge chainsaw sculptures as well as tiny detailed carvings. He began training and competing in triathlons. He even competed in Hawaii’s Iron Man. Eventually, he drowned while training for what would have been his final triathlon. He was going to retire because he could no longer stay on a bicycle without friends literally duct-taping him to it.

    He always said, “I have Parkinson’s. Parkinson’s does not have me.”

    1. allpar

      I never believed you would fall into anger and fear. You have a FINE attitude towards life — you take the punches and laugh at them. It’s amazing.

      You’re right about the zigzag, and you’re right about conditions mattering.

      Your issues are far more severe than mine, and I would feel bad about bringing it up — complaining, as it were — but I have to wonder how many people have these problems but aren’t aware of how widespread they are. And, for that matter, people on the outside can be either understanding or unforgiving, and I have to think the latter comes from just not knowing.

      I’m sorry to hear about your current, um, absentmindedness. If there’s anything I can do, say the word. All I can say is the word “checklists.” Sometimes you just have to go through the checklists for everything. Step by step, checking off as you go.

      I’m taking some actions, I hope, to resolve some of these problems and rise above them.


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