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Jay Lake
Date: 2010-02-02 04:47
Subject: [cancer] Chemo side effects bingo, updated
Security: Public
Tags:calendula, cancer, child, health, personal, shellyrae, work
A few more notes on all this.

I now have a pimple on the tip of my tongue. This is related to drymouth, and also to the fact that though I finally had my deviated septum (90% blockage since birth) fixed in 1999, I've never been able to completely break myself of mouth breathing, especially when asleep. These days the tip of my tongue often dries to something that feels like leather overnight, since I'm not producing the same amount of saliva.

Lower GI follies are a more or less permanent fixture now. Last week's madness has recurred at lower intensity several times since, though these past two days, things have more or less flipped the other way, to where I am passing not nearly enough material. More annoyingly, the ability of my sleeping metabolism to suppress my lower GI function (ie, what most people do, including me when not on chemo) seems to be lost.

So I wake up, a lot. A lot more than I normally do. And by the time I'm finished dealing with the urgency, which always involves a certain amount of waiting about, I'm wide awake. Even when I'm not having the serial bowel movements of last week, that's enough to knock me off my sleep cycle. Usually I'm a champion sleeper. I've slept through hurricanes, typhoons, earthquakes, a four-alarm dorm fire (when I was 19), parties, you name it. Not now. When, of course, I need to sleep more than ever.


Short term memory continues to bedevil me. For example, I left my credit card in a restaurant two days ago (I sure hope I did) and still have not managed to call and check on it. ebonypearl prompted me to realize I haven't listed moderate dyscalculia as a side effect, but when I'm on the infusion, and for up to three to five days after, I can't do basic arithmetic. Which among other things, significantly interferes with helping the_child with her homework. Math is also pretty important in my day job, though my ability to deal with things in Excel hasn't evaporated — I still recognize numbers, and know what I'm supposed to do with them, I just can't manage the operations in my head.

This, along with the anomia I mentioned the other day, is pretty damned frustrating. Fold it into the short term memory deficits and the lacunae in my long term memory, and I'm even more annoyed. Reading long form material is tough as well. Can't seem to hang in there.

I've also found in dealing with my personal life that emotional tolerance is slowly shortening. Since my relationship style is pretty much defined by emotional tolerance, this is rather distressing. calendula_witch, shelly_rae and everybody else close to me knows this, understands this, accepts this, and they all still love me, but I'm starting to think, and occasionally say, things which sound crazy even to me.

And of course, the endless fatigue. I'm not even a month into this, and I'm already sick and tired of being sick and tired.

Despite everything, I remain fundamentally positive in my outlook, and fairly peaceful in the rounds of my daily life. I know what these problems are — they're chemo side effects, they're not me. And honestly, except for some of the lower GI stuff, they're pretty mild, and reasonably livable. Some of my friends and loved ones both IRL and online, including calendula_witch, have been concerned that I'm too angry, or resisting too much. But this refusal to accept these changes is part of how I survive them, how I maintain myself in the face of challenge.

I will not be the person chemo is making me into — hard of thinking, forgetful, slow moving, exhausted. I will be me.

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Gary Emenitove
User: garyomaha
Date: 2010-02-02 12:58 (UTC)
Subject: (no subject)
>>I've slept through hurricanes, typhoons, earthquakes, a four-alarm dorm fire (when I was 19), parties<<

When you feel up to it, sir, could you please share some or all of these stories? I know there are serious issues all around right now, but it would be fun to hear some Classic Jay Lake Tales (tm) spun as only you can spin them.
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Kari Sperring
User: la_marquise_de_
Date: 2010-02-02 13:09 (UTC)
Subject: (no subject)
The exhaustion will be exacerbating much of the rest. Much sympathy. Out here in the big wide world we have faith in you, we are cheering you on. If it's any comfort at all, I am always dyscalculic: you can tell yourself that come what may, you are always better with numbers than that idiot Kari woman. Quite seriously: when teaching, I have to warn students that I will read out dates wrong (I see numbers out of order sometimes) and that they are to point out the errors and laugh at me. They do, too.
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Max Kaehn: Amazing
User: slothman
Date: 2010-02-02 16:24 (UTC)
Subject: (no subject)
I bow to a snoozer even more mighty than myself!
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User: (Anonymous)
Date: 2010-02-02 17:54 (UTC)
Subject: Chemo Head
Hang in there, Jay. If it's any consolation, my DH thinks you're a "lucky bastard" (his words, not mine) that you only have to deal with chemo for six months and you don't have an f***ing colostomy bag.

Suzan H.
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shelly_rae: Big leaf Maple
User: shelly_rae
Date: 2010-02-02 22:06 (UTC)
Subject: Re: Chemo Head
Keyword:Big leaf Maple
Yep, if there's anything I learned from my own dances with cancer and my current accident and TBI recovery is that "it could be worse." But the journey is what it is each to our own. We can do but the best we can and get by with a little help from our friends.
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