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[cancer] Sometimes you lose big, in small ways - Lakeshore
An author of no particular popularity

Jay Lake
Date: 2010-04-18 07:15
Subject: [cancer] Sometimes you lose big, in small ways
Security: Public
Tags:cancer, health, personal
Rough day or so, GI wise. The cheesefest that shaolingrrl, the_child and I had yesterday certainly did not help, though I thought (wrongly) that I was past the violent lactose intolerance that characterizes the immediate post-infusion period.

In the spirit of continued honesty, I report here something that embarrasses me deeply. Last night I had several painful bowel movements that kept me awake well past hitting the sleep wall. Finally that settled down enough, and I slept about eight and half hours, solid. Woke up this morning with no particular tension in my gut, did the usual morning pee, then set about collecting myself when I passed gas rather violently. That sent me back to the small room, for another painful movement. When I reassembled my clothing, my butt was damp. Yes, I'd loaded my shorts.

That's the first time I've simply failed at sphincter control since chemo began. Given that bowel movements have become an Xtreme sport for me, that's actually kind of amazing. It's also mortifying, in the very obvious ways. I mean, we're all socialized very, very strongly about this from the age before we begin to remember. I'll do damned near anything in front of other people under the right circumstances, including urination and having sex, but I won't sit down to a bowel movement in front of other people. It's kind of my personal last frontier. So admitting this even now is tough, and I'm not doing a very good job of it, but this is important.

This experience is important because it's precisely this kind of loss of control we fear from illness or eldering. It's precisely this loss of personal dignity that wrecks people who go through these experiences, whether it's transient (as mine is, albeit the better part of a year in length from start to finish), or chronic, or terminal. Because in the end, we're all terminal. And quite frankly, I don't want to go out in a wave of shit some day. Right now, that's how it feels the world will end.

I'm a big boy. I washed out my clothing, cleaned myself, and am getting on with my day. But I feel branded. And even admitting that here is very weird. But I've been dedicated from the beginning to openness about my cancer experiences, and this has definitely been one of those.

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User: saoba
Date: 2010-04-18 14:27 (UTC)
Subject: (no subject)
You're managing to be open and frank and discuss difficult and/or awkward topics with that blend of humor and grace that I've come to consider 'Jay's voice'.

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fjm
User: fjm
Date: 2010-04-18 14:28 (UTC)
Subject: (no subject)
Darling, all my hugs. This has happened to me more than once when the lactose intolerance has caught me out.
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Joy
User: cithra
Date: 2010-04-18 14:49 (UTC)
Subject: Poo, the last taboo. :/
You have my profound sympathy... I have amazed myself at times at just how much personal shame I attach to bowel function. 'Prudish' isn't a word I would normally use to describe myself, but I'm like a Victorian describing piano "limbs" around the subject. I find this doubly damning as a human biologist -- I should be able to talk about perfectly normal bodily functions in a forthright and reasonable manner, yes? No, at least not out of the extremely abstract, not when they are mine.
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User: cypherindigo
Date: 2010-04-18 14:59 (UTC)
Subject: (no subject)
It happens.

Many of my bouts of stomach viruses start that way. I have had to call home for someone to bring me clean clothes.

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User: joycemocha
Date: 2010-04-18 15:00 (UTC)
Subject: (no subject)
You are far from the only one to feel this way. IBS has caught me out in the past, and I felt awful when it happened.
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scarlettina
User: scarlettina
Date: 2010-04-18 15:05 (UTC)
Subject: (no subject)
I know that you never forget that the chemo makes you ill and that's why this incident occurred. It's not You. And once you're back to yourownself, it'll be part of the experience, not a personal failure of any sort. It happens. It's happened to me, too.

I send ::hugs::.
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markbourne
User: markbourne
Date: 2010-04-18 16:34 (UTC)
Subject: (no subject)
Like all the rest of it, it will soon be just another incident receding and diminishing in the rear-view mirror of the past. At least that's the thinking that comforted me when I was in the ICU and had to buzz the nurses at all hours for a clean-up. I still shudder a bit at remembering how undignified and helpless I felt, but day by day it was comforting and steadying to remind myself that although it was part of the new Normal, it was by no means a permanent one. If it works for you, then take this, brother, may it serve you well. (Number 9... number 9...)
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markbourne
User: markbourne
Date: 2010-04-18 16:35 (UTC)
Subject: (no subject)
Oh, and Hi and hugs to Lori.
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shaolingrrl
User: shaolingrrl
Date: 2010-04-18 21:27 (UTC)
Subject: (no subject)
Hi, Mark! He let me drive his convertible! With the top down and everything! Jay is the best. :-)
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markbourne
User: markbourne
Date: 2010-04-18 21:35 (UTC)
Subject: (no subject)
>With the top down and everything!

The car's or yours?

So pleased you've had a good time. Do let us know whenever you find yourself a tad further north up Seattle way.
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shaolingrrl
User: shaolingrrl
Date: 2010-04-19 04:14 (UTC)
Subject: (no subject)
>>The car's or yours?

Don't give him ideas.

>>Do let us know whenever you find yourself
>>a tad further north up Seattle way.

Okey doke.
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Jay Lake
User: jaylake
Date: 2010-04-19 12:25 (UTC)
Subject: (no subject)
Silly, I already *have* ideas, I'm just a gentleman about them.

It was very nice to see you here.
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Karen
User: klwilliams
Date: 2010-04-18 17:12 (UTC)
Subject: (no subject)
If you wander down the diaper section of the grocery store, you'll see they make them for several adult sizes, too. These kind of things are an unfortunate indignity that hits all sorts of people. It sucks, but it's part of having these bodies.
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barbarienne
User: barbarienne
Date: 2010-04-18 17:45 (UTC)
Subject: (no subject)
You're not branded, and you lost no dignity. It happens to everyone. You're part of the universal human continuum.

At least you have a reasonable excuse--you're very ill and taking a medical treatment with severe side effects. What superhuman sphincter power did you expect to have?

I could tell you stories about shit (literally) that my mother has been through, with a lot less medically-inspired cause. She's still got her dignity, and medical people always tell me how great she is to work with.

This, too, shall pass. You will get through it, and you will regain control of your body, and we will dub you Super Sphincter Man!
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When life gives you lemmings...
User: danjite
Date: 2010-04-18 19:09 (UTC)
Subject: (no subject)
As an intermittent IBS participant (I DON'T use the word sufferer), I, too, am in the ranks of the occasionally self-soiling.

Eh.

I once knew the locations of durn near every public loo in San Fran.
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shaolingrrl
User: shaolingrrl
Date: 2010-04-18 21:27 (UTC)
Subject: (no subject)
One last good-bye hug from PDX. I had a great weekend, impromptu hospital tour or no. :-)
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Tyellas
User: tyellas
Date: 2010-04-18 22:04 (UTC)
Subject: (no subject)
By saying, “This happened to me, a dignified articulate person,” it removes a bit of the stigma and isolation from it. And prepares us in case we ever have similar medical experiences. So, thank you.
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adelheid_p
User: adelheid_p
Date: 2010-04-19 01:52 (UTC)
Subject: (no subject)
You are not alone. This has happened to me as well. As others have said, it's is not something that is permanent but, rather, will go away when you are done with the chemo. And there are items that exist to help you through this period should it occur more frequently. Although I don't think that it will. But it is temporary and you have the hope of getting better and not having to be concerned about this happening more than a few weeks past the end of chemo.
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calendula_witch: Paris Catacombs
User: calendula_witch
Date: 2010-04-19 16:24 (UTC)
Subject: (no subject)
Keyword:Paris Catacombs
That happened to me, several days recovered (or so I thought) from a horrid food poisoning episode (that involved medical intervention). I was sitting in a hospital room as the Ex recovered from a minor heart attack...had to walk back a half-mile to our friend's apartment for laundry, shower, change of clothes. (The friend we were visiting so we could take care of HIM, after surgery. It never rains but it pours.)
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The Green Knight: Courage
User: green_knight
Date: 2010-04-19 19:46 (UTC)
Subject: (no subject)
Keyword:Courage
Consider a bag with spare pants to keep in your car.

Signed, the voice of experience. (Different problem, similar outcome.)
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alumiere
User: alumiere
Date: 2010-04-21 22:08 (UTC)
Subject: (no subject)
Thanks for posting this. Once again, you give me courage to write.
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