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[cancer] Fighting to stay awake - Lakeshore
An author of no particular popularity

Jay Lake
Date: 2010-05-18 05:48
Subject: [cancer] Fighting to stay awake
Security: Public
Tags:cancer, health, personal, work, writing
Yesterday was a tad rough. Day Jobbe got intense, I never took a lunch break or anything like a rest break. (Yes, I did eat at my desk.) By the time I knocked off (I work 6 am to 3 pm, Pacific) I was too tired to move. No energy for any writing or WRPA. I went to bed around 5, went to sleep around 7:30, and had nine fitful hours of sleep without pharmaceutical assistance.

I'm about to start sleeping in hat and gloves, due to the peripheral neuropathy. My body is warm enough under the covers, but my head and hands are out in the night air of my bedroom. It's bad enough that I walk around during the day dressed like a homeless guy, but needing to do it at night... Sigh.

In theory I'm going to Fireside Writers today. I have a ride and everything. But I have a feeling I'm done with that, too, until chemo is over, given my tendency lately to go to bed sometime between 4:30 and 5:30 in the afternoon. The exhaustion really has settled at another level.

One reason I've fought so hard to hang on to activities and capabilities in my day-to-day life is my very early intuition that anything I gave up I was not getting back during chemo. So far, with the partial exception of writing time, this has proven true. I'm almost certain I'm done driving. This going to bed in the late afternoon thing is becoming normal. I don't even go outside in my own yard anymore. I'm pretty much living on Rice Chex, oatmeal and soft pretzels due to my food tolerances collapsing. I've started bursting into tears from time to time again, after a long period of good emotional control. My sleep hours are slowly getting longer and longer. My world is getting ever smaller.

But less than five weeks until I come off the needle for the last time. I have to hold on to that.

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martyn44
User: martyn44
Date: 2010-05-18 13:38 (UTC)
Subject: (no subject)
Wishing all the strength you need, my friend. Endure. Be kind to yourself. Sometimes it is just one breath at a time.
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e_bourne
User: e_bourne
Date: 2010-05-18 14:26 (UTC)
Subject: (no subject)
It is just holding on. Are you having milk tolerance problems? I don't remember (head hanging in shame). Cream of rice cereal? My mom swore by that. Soft. A break from oatmeal maybe.

Hugs and love. Like Faulkner, you can X off the days on the wall.
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Jay Lake
User: jaylake
Date: 2010-05-18 14:44 (UTC)
Subject: (no subject)
Lactose intolerance in cyclical with the chemo process. But I'm using lactose-free milk and avoiding other dairy on the bad days. Have cream of wheat here, but it didn't go down well recently. Oatmeal is helping.

And when I *can* handle lactose (ie, this week) I've discovered that I can still eat pizza made with alfredo sauce instead of red sauce. It's almost the only 'normal' food I want now.

I X days off the wall, and bottles off the mantel.
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e_bourne
User: e_bourne
Date: 2010-05-18 16:04 (UTC)
Subject: (no subject)
mashed potatoes and grits? Possibly not together.

Pizza is always good. Always.

My son's lactose intolerant and finds goat cheese doesn't bother him like cow products, fwiw.
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jackwilliambell
User: jackwilliambell
Date: 2010-05-18 14:30 (UTC)
Subject: (no subject)
I still have several of the skullcaps Anita knitted. She originally made a couple for herself, then kept making them to give to anyone who was helpful to us. If you would like, I can get one to you somehow.
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Jay Lake
User: jaylake
Date: 2010-05-18 14:41 (UTC)
Subject: (no subject)
Jack, that is very generous. Drop one in the mail, maybe? I'm wearing hats around the house almost all the time, but something fitted and tight will be good. Most of mine are too loose to wear in bed.
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Twilight: Garden
User: twilight2000
Date: 2010-05-18 15:10 (UTC)
Subject: (no subject)
Keyword:Garden
What follows are ideas you may well have a) thought of b) tried c) don't work - but I'm a medic and it's my instinct to offer help. Who knows, I might hit something that got missed :>.

Perhaps some bananas? can you eat any direct source of protein (some of the easier ones to digest I can think of: chicken (organic), beans, tofu, eggs, chick peas (hummus?), yogurt (greek), almond butter) - i know when I've worked with folks who are unable to keep much down, the lack of protein trips a cyclical downward spiral of exhaustion. Even a trip to the yard would get you some sun - and that's useful for all sorts of reasons (psych and not).

And hell, if I worked straight through, i'd be exhausted too - it strikes me that an alarm (a trick I use or I forget to eat if it's busy) to remind you to take a 10 minute break or a lunch might well be in order. At least for the next month or so.
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Jay Lake
User: jaylake
Date: 2010-05-18 15:17 (UTC)
Subject: (no subject)
Bananas went off the list today, at least temporarily, based on the retching when I tried to eat one this morning. Eggs have been (mostly) off for a while. I can still eat chicken some, and cheese when I'm not being massively lactose intolerant (that's cyclical). I understand about protein, though the advice from the oncology people is "eat whatever you can get down".

Need to look into those protein shakes. They may be palatable.
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Twilight: Smile
User: twilight2000
Date: 2010-05-18 16:15 (UTC)
Subject: (no subject)
Keyword:Smile
Bummer! Sorry about the bananas. Here's hoping the protein shakes work for you :> Maybe even some nutella ;>

Edited at 2010-05-18 04:16 pm (UTC)
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coreolis
User: curiositist
Date: 2010-05-18 15:13 (UTC)
Subject: (no subject)
Not sure it will appeal to you, but have you tried making rice porridge? Just white rice with too much water cooked until soft? You can sweeten, add lactose-free milk, dried fruit if you can handle it, just like oatmeal. On days when fiber is your enemy or if the oatmeal develops failures you might try it. One of my last surgeries, it was one of my staple foods.

Also, how many inches around is your head?
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Jay Lake
User: jaylake
Date: 2010-05-18 15:14 (UTC)
Subject: (no subject)
Thanks for the food tip.

I'm an 8-1/8 or 8-1/4 men's hat size, whatever that translates to in inches. :)
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coreolis
User: curiositist
Date: 2010-05-18 15:34 (UTC)
Subject: (no subject)
8-1/8 to 8-1/4??? Man, you have more brains than anybody else I know!
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Jay Lake: jay-bald
User: jaylake
Date: 2010-05-18 15:50 (UTC)
Subject: (no subject)
Keyword:jay-bald
Yep. I gots a big heid.
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scarlettina: Hug
User: scarlettina
Date: 2010-05-18 15:24 (UTC)
Subject: (no subject)
Keyword:Hug
One step at a time, Jay. ::hugs:: You'll get through this. Stay strong.
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(no subject) - (Anonymous)
shelly_rae: Raspberry Almond Tart
User: shelly_rae
Date: 2010-05-18 17:02 (UTC)
Subject: (no subject)
Keyword:Raspberry Almond Tart
Beth-I've offered custards, puddings etc but he doesn't like the texture of them. Nor is he fond of soup.

Jay-This weekend. Food experiments! We'll even make mashed potatoes (not instant) if you'd like. Maybe with gravy? Hmm, I wonder how much protein is in almond paste...
Anon

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Kari Sperring
User: la_marquise_de_
Date: 2010-05-18 18:12 (UTC)
Subject: (no subject)
Years ago, I had a ground floor flat which was over a water-filled basement and had no real source of heating (two very inadequate electric heaters). I routinely slept in leggings, a thermal top, a long nightdress with long sleeves, two pairs of socks and a sweatshirt. And gloves. I'd have worn a hat if I could have found one that didn't itch. It's only central heating that makes us believe that sleeping in little or nothing is normal.
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User: lindadee
Date: 2010-05-19 00:15 (UTC)
Subject: (no subject)
OT: I bought a nice expensive down comforter and was able to turn down the apartment's temperature down to 64-65 degrees (from 70, I like warmth) for sleeping.
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MEG: Dragonlite
User: djelibeybi
Date: 2010-05-18 21:42 (UTC)
Subject: (no subject)
Keyword:Dragonlite
I found that having people around made me eat/walk/speak more than I would do otherwise when feeling wretched through chemo.

I'm sorry you're having trouble eating. I know that feeling hungry actually makes me feel more sick when I'm on the chemo so, this next time, I'm planning on eating a little very, very often.

If you can sit in the sun even for a few minutes, I'd recommend it.
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Little and foxy and sexy... what more do you want?
User: little_foxy
Date: 2010-05-19 04:11 (UTC)
Subject: (no subject)
quinoa has a really high protein content (12-18%), it is sort of like a rice and can essentially be flavoured with anything if you want.

and wishing you strength... nearly there.
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