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[cancer] Continuing to struggle with mind and heart - Lakeshore
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Jay Lake
Date: 2013-08-28 06:36
Subject: [cancer] Continuing to struggle with mind and heart
Security: Public
Tags:cancer, friends, health, personal, radiantlisa
Yesterday, finishing up dinner with friends, I could not recall the word for the color of my iPhone's case. (It's magenta, in case you're wondering.) A small thing, but it irritated me horribly.

Last night, Lisa Costello told me something to which I overreacted. I am sufficiently emotionally and cognitively compromised now that my usual coping skills and strategies often are not available to me any more.

I think the Regorafenib is slowly eroding my cognitive capacity further. I manage to be shallow, offensive or rude on a fairly regular basis these days without meaning to at all. Except unlike prior chemo drugs which have had much the same effect, this one leaves my self-awareness pretty much intact. So I enter a negative feedback loop of guilt and regret over something I just said or did, which in turn causes me to say and do other stupid stuff.

It's kind of like how I was as a teen-ager all over again, trapped in hormone loops and poorly developed coping skills and having a big mouth. Except I can see every misstep, and it hurts.

My life is slowly becoming Flowers For Algernon.

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Starshadow
User: arielstarshadow
Date: 2013-08-28 14:19 (UTC)
Subject: (no subject)
I can fully empathize with the first sentence, Jay. I had a stroke in my early thirties - and I was lucky. It was very minor, with no severe physical lingering effects.

But the lingering mental effect is aphasia - and I hate it. I feel as though my eloquence, my voice, was taken from me.
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Debbie N.
User: wild_irises
Date: 2013-08-28 14:39 (UTC)
Subject: (no subject)
Oh, that is so painful!
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joycemocha
User: joycemocha
Date: 2013-08-28 14:51 (UTC)
Subject: (no subject)
I was thinking about the Flowers for Algernon connection earlier. It sucks, but it also makes me wonder if that particular author was remembering a heartbreaking erosion of cognition in a similar situation as yours.

That sucks mightily. It's one thing to do as I am doing, and note the minor cognitive erosions of aging, which so far can be dealt with by establishing a strict self-discipline.

It's another to note the major erosions of chemo and dying, without the recourse of being able to remediate it through structures. Sigh.

Hugs, my dear. Hugs. We love you.

(and now I wonder if the same issues, coupled with aging, have to do with the bitter and hurting things my mother said to me as she was dying. God. I have to rethink this. Our relationship was less-than-stellar, and I always thought it reflected what she truly thought about me.)
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Keikaimalu
User: keikaimalu
Date: 2013-08-28 15:02 (UTC)
Subject: (no subject)
Sympathies, man. Watching your mind melt away, bit by bit -- I've actually been through it (and still deal with it sometimes). When you're someone who lives by the mind, its loss is devastating. I feel like I've had a taste of senility and dementia, and those are rough storms indeed.

I hope that before the end of your life, you regain all your mental and emotional faculties. I hope that very much.
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Larry Sanderson
User: lsanderson
Date: 2013-08-28 16:44 (UTC)
Subject: Stress
Got no good ideas, just be as easy on yourself as you can.
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martianmooncrab
User: martianmooncrab
Date: 2013-08-28 18:17 (UTC)
Subject: (no subject)
Aphasia... such a lovely gift that is...

I was having trouble remembering Hydrangea awhile back, when I tried to say it, it came out Chloraphyll. Yesterday, compression stocking came out leg strangling tube. It does make for fun descriptive phrases.

You cant make up characters like that, with that dialog.. nope.
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asakiyume: dewdrop
User: asakiyume
Date: 2013-08-28 21:29 (UTC)
Subject: (no subject)
Keyword:dewdrop
"leg-strangling tube" is quite nice.
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Starshadow
User: arielstarshadow
Date: 2013-08-29 19:01 (UTC)
Subject: (no subject)
I once had to say "cloth buying area" for "Fabric Department" to the guy in Hobby Lobby asking for directions once. It was... yeah.
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barbarienne
User: barbarienne
Date: 2013-08-28 18:45 (UTC)
Subject: (no subject)
I forget if you take stomach medicines? When I was on Prevacid (and later, Nexium), it caused severe aphasia and my brain was on slow-mo. Took a few months to come back after I stopped taking the drug.

Obviously you're on a whole cocktail of things that have the potential for this, but I wanted to note this common medicine that has similar symptoms.
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mmegaera
User: mmegaera
Date: 2013-08-28 19:41 (UTC)
Subject: (no subject)
I have spent a fair amount of my conversations with my mother over the last few years prompting her about the same things over and over (not over and over in the same conversation, though, thank goodness). Thank you for the insight about why this might be the case (no, she doesn't have cancer, but she's 89 years old).

I wish you hadn't been able to because you'd never had the experience yourself, though. Deeply.
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asakiyume: Aquaman is sad
User: asakiyume
Date: 2013-08-28 21:32 (UTC)
Subject: (no subject)
Keyword:Aquaman is sad
Poor old brain, taking a beating from the medicine that's also whacking the tumors. Wish there were special, helpful vitamins you could take, or exercises you could do, but I know it's not that easy -_-
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Clint Harris
User: wendigomountain
Date: 2013-08-28 22:15 (UTC)
Subject: (no subject)
Sorry to hear it, Jay. Though the Miley Cyrus twerking scandal was traumatic, you probably don't have to put your heart into it so much.
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Lioness
User: elisem
Date: 2013-08-29 02:33 (UTC)
Subject: (no subject)
Dude. Well, whatever flavors of emotion and cognition may be going on, I'm looking forward to hanging out with you.
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Jay Lake
User: jaylake
Date: 2013-08-29 12:06 (UTC)
Subject: (no subject)
Indeed! Very much so.

:: smiles ::
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jetse
User: jetse
Date: 2013-08-29 17:06 (UTC)
Subject: (no subject)
Unlike others in this comment thread, I have no personal experience with losing my mental acuity (apart from being drunk, that is). However, it is one of my worst nightmares.

Lose an arm, lose a leg? Horrible, but if I could choose either of those in exchange for keeping my mind sharp, I'd do it in a heartbeat.

"Flowers for Algernon" indeed, and also Dave Hoing's "The Healer" (Postscripts #20/21: I was very disappointed that we didn't take it for Interzone at the time).

Don't know what to say to you, while you suffer through this ordeal. Just hope I can see you at World Fantasy in Brighton.
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Jay Lake
User: jaylake
Date: 2013-08-29 17:11 (UTC)
Subject: (no subject)
Jetse, if my September CT scan shows that I'm maintaining my current tumor status ("good" isn't really an option any more), I will probably be in Brighton. I have the FF miles to make the trip, not sure yet how to handle accommodations. And if I do make it over the pond, I'll stay a bit and visit some of my UK and Euro friends, to the degree budget and energy allow.
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jetse
User: jetse
Date: 2013-08-29 17:19 (UTC)
Subject: (no subject)
Keeping my fingers crossed!
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emmainfiniti
User: emmainfiniti
Date: 2013-09-03 10:47 (UTC)
Subject: (no subject)
Hugs.
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