[cancer] Sometimes you lose big, in small ways

Rough day or so, GI wise. The cheesefest that , 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.

5 thoughts on “[cancer] Sometimes you lose big, in small ways

  1. As some one who suffers cerebral palsy, I have been there and done that with bowel movements and just being able to stay on my two feet some days. It’s worse when it happens in public, but it’s a a gut burning feeling regardless. It scared me at first, to know that I couldn’t control my own body the same way others do. Then for a long time it frustrated me, made me angry to almost violent tears and cursing, but of late it’s forced me to understand that I am not in control of my body. That in turn, has forced me to let go of any shame I feel over my biological state. I did not create this body, and there is only so much I can do to change it. Beyond that, I do not hold myself responsible for when my body fails. What I can control, and what I must control, is myself. My mind. My body may go to hell, but that doesn’t mean I’ll have to chain myself to the railing and go with it. As long as I can hold my mind, I will. Be ashamed or proud of _what you do,_ who that makes you, not what happens to your body.

  2. Tiffani says:

    I’ve been following your saga here with amazement at your honesty, and now my respect has grown even more. We all feel so alone sometimes in our own personal hells of embarrassment, but the fact is that we’re *not* alone. We all walk around in these meatsacks, trying our best to deal with what they have in store for us day to day. And to “come clean” as it were–calmly and openly–about what you’re going through is to help someone else get past that wall of shame and join the human-body race. Thank you.

  3. I suppose someone has to say this: shit happens.

    I’d like to think that in your place, I would do exactly what you’re doing now and tell about it, but the shame is tough. Good on you for testifying.

  4. Jan says:

    What a brave soul you are. I know it is not easy to tell this story.

    I was diagnosed with Colitis in my teens (though now it falls under IBS as it is not ulcerated). My life has always been based on the knowledge of where the nearest bathroom is. To venture out I cannot eat for hours before, and even then I take a change of clothes just in case.

    I feel for you, you are dealing with so much already, but do know you are not alone.



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