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Lakeshore
An author of no particular popularity

Jay Lake
Date: 2010-01-11 18:46
Subject: [cancer] Food issues
Security: Public
Tags:cancer, food, health, personal, shellyrae
Oddly, today it has come down to food issues. I have no appetite. I don't mean I'm not hungry. It's not nausea, except incidentally when I go too long without food. I mean no appetite. As in, "food, what's that?" This from a lifetime chowhound who's always struggled with comfort eating and never had blood sugar issues to speak of. There's a reason I used to weigh nearly 300 pounds. Had a couple of near-crashes due to this issue already. shelly_rae has been really keeping on me about this. (As a two-time chemo survivor, she knows whereof she speaks.)

So we're going to work through the protocols more carefully tomorrow, and document them for both me and my family/friends/caregivers. What it boils down to is not letting my stomach get too empty, yet dealing with not wanting to eat.

Basically, I wear out faster than I expect, recover more slowly than I expect, and much of this is keyed to food intake, and the nutritional balance thereof. Chemo, duh. But still, oddly unexpected.

We live and learn, we do, we do.

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adelheid_p
User: adelheid_p
Date: 2010-01-12 03:40 (UTC)
Subject: (no subject)
It sounds like you may need to eat several small meals a day. I find that I get more irritable than usual near meal time. It's my signal that I really do need to eat something. You may have to be more attune to your own set of signals. Also keeping healthy snacks handy, as the previous commenter noted, may help. If you're not lactose intolerant and have access to a refrigerator and microwave at your day job, string cheese (I choose the lower fat variety) and the "Soup at Hand" soups (vegetable, chicken noodle and tomato are low in fat and are my favorites) are quick and nutritious.
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User: joycemocha
Date: 2010-01-12 03:48 (UTC)
Subject: (no subject)
Vitamin milkshakes. What about electrolytes? Might not hurt.
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Elizabeth Coleman
User: criada
Date: 2010-01-12 03:52 (UTC)
Subject: (no subject)
I have no idea if it's an option, but isn't this one of the things medical marijuana's supposed to be good for?
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theresamather
User: theresamather
Date: 2010-01-12 05:28 (UTC)
Subject: (no subject)
That's pretty much what a friend of mine who had cancer years back used it for.
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Leah Cutter: Sushi!
User: lrcutter
Date: 2010-01-12 04:25 (UTC)
Subject: (no subject)
Keyword:Sushi!
We had to deal with this with neighbor C a lot -- particularly because she wouldn't remember if she'd eaten or not, or would swear she had when she hadn't. Habit got us through a lot of that: making her regular foods at regular times then making sure she ate them. So instead of just anything for breakfast, it was always one of the same three choices, same with lunches, etc. Keeping her in the habit of eating.

Plus chocolate. She loved chocolate, and while it probably wasn't the best thing we could give her, at least she'd eat it.
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User: quantuminsanity
Date: 2010-01-12 05:57 (UTC)
Subject: (no subject)
Maybe you need to set an alarm to remind you to eat or something?
And some of those sports water type drinks are good for replenishing electrolytes and keeping your energy up (just be careful some of them have caffeine.
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it's a great life, if you don't weaken: criminal minds reid eat
User: matociquala
Date: 2010-01-12 06:07 (UTC)
Subject: (no subject)
Keyword:criminal minds reid eat
I had a four-month bout of Not Food for medical (TMI) reasons back in 1995. It sucks and it's scary.

Things that worked for me:

snacking off of other people's plates.
liquid food (milk, tea with honey and/or cream, hot chocolate, lassi, juice, smooth soups such as tomato)
buttered toast
cutting up a piece of fruit and eating it piece by piece.
nuts--pieces of walnut, for example. high caloric value, crunchy, inoffensive taste
ice cream

...basically, if it was easy enough to eat that I didn't have to pay attention to eat it, that helped a lot. I still lost forty pounds, but I managed to mostly feel okay throughout it.

(TMI: Colitis, pneumonia, and a broken heart. Simultaneously.)
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Jay Lake
User: jaylake
Date: 2010-01-12 14:01 (UTC)
Subject: (no subject)
(TMI: That's a lot at once...)
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it's a great life, if you don't weaken
User: matociquala
Date: 2010-01-12 14:18 (UTC)
Subject: (no subject)
Yer tellin' me.

<3
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fjm
User: fjm
Date: 2010-01-12 09:04 (UTC)
Subject: (no subject)
peanut butter.

A spoonful of peanut butter packs a disproportionate number of calories.

I hate the stuff, but then, I'm not American :-)
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Jay Lake
User: jaylake
Date: 2010-01-12 13:17 (UTC)
Subject: (no subject)
shelly_rae is about the almond butter. Similar nutritional impact, less junk in food, and better taste. ;)
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it's a great life, if you don't weaken: criminal minds bad shirt brigade
User: matociquala
Date: 2010-01-12 14:24 (UTC)
Subject: (no subject)
Keyword:criminal minds bad shirt brigade
*nod*

What would happen to me was if I couldn't sneak the food up on myself, it would be Not Food, and chewing and swallowing it would be about as easy and pleasurable as chewing and swallowing mouthfuls of sawdust or cardboard or leaves or cat litter or, you know anything else that is Not Food.

Oh, the pudding category. Tapioca and rice, especially, as they have more food in them than other puddings. Home-made butterscotch pudding is also easy and very nice.

I found it all went down better warm.

I'd also make a tuna sandwich, cut it in bite sized pieces, and leave it in the fridge--eat one bite at a time over the course of the day. Graham cracker on my desk at work, same thing. Take a bite, wash it down with a sip of tea held in the mouth until the cracker dissolves. You don't have to chew it if you do that, and for me, chewing was a big gag trigger.

Chicken fingers, for some reason, were pretty doable. Neutral flavor, protein, salt, and the fried ones have a lot of calories.

People suffering appetite loss from HIV cocktails sometimes find that the smells of sauteing bacon and/or caramelizing onions spur appetite, but it never worked for me.

ETA: Oh! If you are allowed alcohol and you like it, dark stout beer. It was *invented* as a means of preserving grain, after all.

Traditionally, one floats a raw egg in the invalid's whisky...

Edited at 2010-01-12 02:34 pm (UTC)
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desperance
User: desperance
Date: 2010-01-12 18:40 (UTC)
Subject: (no subject)
I am totally with shelly_rae on this one. Also cashew butter.
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lisatheriveter
User: lisatheriveter
Date: 2010-01-12 09:25 (UTC)
Subject: (no subject)
I second the call for liquid food. For me, that no appetite state is often accompanied by exhaustion from the effort of chewing and a sensation that the mouth feel of food is just wrong. Liquid food gets around those problems.

Hugs! I'm thinking about you, and wishing you well.
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alumiere
User: alumiere
Date: 2010-01-12 14:47 (UTC)
Subject: (no subject)
You've made me jealous twice today. Able to walk 3 miles? Not a chance. Not hungry but not because of nausea? I wish.

I'm sorry you're struggling with making sure you eat regularly/enough, glad that shelly_rae is reminding you that you need calories.

I do find that when hunger is low or food smells unappetizing I eat a lot more dairy. I swear that were it not for cheese I would have starved myself until I wound up in hospital months ago. Luckily even when it doesn't smell good or I'm not physically hungry I'll grab two slices of cheese from the fridge every 4-6 hours, often with some tomato or cucumber slices to add some veg/fiber, and it keeps me alive.

It sounds like you're doing well overall, even though you wear out more easily. I am wiped after one task (ie: showering) and it is usually hours before I recover (hence drown_rat carrying me up the stairs to the club last night, and me passing out on the couch for a lot of it. But I did dance to a few songs, and I got to see people which is good. I would be happy if I knew what was causing this, because at 43 I shouldn't be this weak and useless.

On the other hand, I have some very physical goals for this year: bowflex 2-3x/week, dance 2-3times/week, and start climbing again even if I'm only nailing 5.7s. The pics of the_child are one of several motivating factors for the last one; the primary being that I continue to dream of climbing at Joshua Tree even though I stopped climbing ~10 years ago. Although lead climbing is probably out of my grasp I should be able to second the easier routes if they're not too overhung (and it's not that far away).

One of the best parts of living in a desert (LA) for me, is less humidity, rain, snow = less pain. And now, I should go back to sleep if I want to recover the spoon deficit I've had since Sunday.
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Jay Lake: child-on_plane_in_China
User: jaylake
Date: 2010-01-12 15:51 (UTC)
Subject: (no subject)
Keyword:child-on_plane_in_China
Jealous? Inspired, I hope. :)

Good for you for dancing, and I'm glad the_child's climbing is inspiring.

Get some sleep.
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alumiere
User: alumiere
Date: 2010-01-12 20:27 (UTC)
Subject: (no subject)
Jealous a bit; but I think jealous has much stronger meanings than I give it. I'm openly polyamorous, and I don't really have a jealous bone in my body, so for me it means I guess maybe slightly envious of that one bit of difference (ie: that you can walk 3 miles - I can barely walk the 4 blocks to the bus before I'm out of spoons).

And inspiring? Damn straight. I wrote a lot less, and opened up almost none of the posts until someone linked me to your lj. Inspiration isn't the half of it. You've also motivated me to go back and start opening up old posts (which were almost always friends-locked, medical to a dozen people), write about topics I would shudder to discuss in public, to let the fact that my life is mostly spent online not limit me from meeting new and interesting people.

So many of my posts lately take inspiration off something you've said it feels like I'm getting more than giving, which isn't my intent. But I'm trying to work out in my mind how to live, really live, and be this broken, and you are an excellent example. You're also someone who's in a similar space mentally - as in is the memory slowness going to occur/get worse? Am I going to be someone I'm not or will I get through all this and be mostly myself again at some point?

So thank you, and my apologies for the mini rant this morning. The internets gives me a world to interact with, but I don't always remember that venting here isn't the same; you can't read my facial expressions or ask me what I mean or hear the biting sarcasm in my voice. The last post needed sarcasm brackets.

And dancing? For me that's the only place I find peace; my center. Climbing used to do it too (but it is dancing vertically). So while Sunday night was a wash as far as getting to that point I did try, and next week I hope to do better.

One last thing; I see the Atheism/Religion post sitting there, and having had a long conversation with my dad yesterday about a video he sent I will be revisiting that subject (I knew that before I saw your follow up). But first lunch and meds and dress for today's one thing (errands).

Edited at 2010-01-12 08:34 pm (UTC)
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Jay Lake
User: jaylake
Date: 2010-01-12 21:02 (UTC)
Subject: (no subject)
No mini rant. Go do good, and I'm glad I could help you inspire yourself.
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desperance
User: desperance
Date: 2010-01-12 18:45 (UTC)
Subject: (no subject)
What other people have said, about little and often; also those games you can play between treats and high-nutrition stuff that asks no effort. I spent a year tempting a man with no appetite into eating anything, whatever we could induce him to swallow. Soups are good, cheese is good (cheese! we know about you and cheese, we've seen it - and even a spoonful, a sliver, everything helps). If I were there, damn it, I'd be lining stuff up in your fridge...
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alumiere
User: alumiere
Date: 2010-01-12 20:44 (UTC)
Subject: (no subject)
I totally second the cheese - slices, chunks, layered with good salami, spread on flat bread or no-carb crackers (made out of more cheese), on top of cucumber or tomato or pepper slices, or used as a substrate for hummus or babaganush or more cheese. I also love melty cheese, which is usually wrapped in a "tortilla (usually zuccini)" and then a slice of foil to put into the toaster oven; then it too can be topped with fresh salsa or veggies or hummus.

I do think I would be seriously malnourished if I didn't have so many cheeses to chose from.
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Dichroic
User: dichroic
Date: 2010-01-13 02:26 (UTC)
Subject: (no subject)
When my uncle was going through chemo, one thing that distressed him, having always been in love with food*, was that nothing tasted right. It turned out there were some lozenges he could take before eating that helped a lot. It doesn't sound as if this is the primary problem for you, but I mention it in case it's a supplementary factor.

*I am talking about a man who could tell you what he had for lunch on a particular trip to London in 1963. *Serious* devotion to food!
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