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[cancer] Life changes, the smaller kind; potty talk edition - Lakeshore
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Jay Lake
Date: 2009-12-27 05:43
Subject: [cancer] Life changes, the smaller kind; potty talk edition
Security: Public
Tags:cancer, food, health, personal, sex
I've been talking a lot lately about sex and cancer, about the overwhelming aspects of chemo, the impact of cancer on my circle of intimates, friends and family. But it has had other, less obviously dramatic impacts on my life, some of which are still very strong.

One of the most basic changes is not particularly TMI, which is that my sleep metabolism shifted substantially after the colonic resectioning of May, 2008. When I emerged from the immediate post-operative recovery period (during which one sleeps twelve or fourteen hours a day, or more), I found myself sleeping six hours per night instead of my classic seven and half or eight. This was a welcome surprise, and I immediately leveraged it to expand and firm up my exercise regimen.

So one of the frustrations of this round of surgery has been the intense oversleeping during recovery. I'm down now to six or seven hours per night, which tells me I'm at the tail end of the substantial recovery. Which is to say, I still have healing wounds, internal pain, range of motion issues, etc., but I'm a lot more myself. One of my chemo fears is that the sleep will spiral back up. Fatigue and lassitude are classic, and basic, side effects of chemotherapy.

Because I use those waking hours. That's how I sustain a Day Jobbe, parenting, a writing career, a love life, a social life, and still get laundry done. I'm not superhuman, I'm just awake and energetic more than most people. The eighteen hours a day I've been used to was a gift of the first Excellent Cancer Adventure. This round of New Adventures in Cancer threatens to take it away. Not pleased, me. Not pleased.

Another basic change was in my digestive health. (Here we're getting into the TMI territory.) I've always had a wonky lower GI tract. That was quite possibly an early warning signal of cancer, though I never realized it. I carry my stress in my colon, so when things get bad-weird, I get the runs, or at least eye-watering gas. This has been true since I was a kid. Historically, a beef-heavy meal (even a large cheeseburger), or a fat-heavy meal, could send me sprinting to the small room within a very short time, there to park myself a while.

After the colonic resectioning, I followed my doctor's advice and cut out things which I knew to be irritants. That meant no more beef. I've knowingly eaten about six bites of beef in the last eighteen months. (Which sucks, because I love hamburgers. And turkey burgers/veggie burgers are not the same.) I've completely abandoned caffeine. As long as I was at it, I gave up high fructose corn syrup, too, and became much more of a food label reader in the process. (I'm confident that step explains why I weigh fifty pounds less these days than when I went into the colon surgery, as much as all the exercise does.) In general, I shifted my diet more heavily towards fruits and vegetables, away from processed foods, meats and starches.

Guess what? I experience a lot less of the bathroom sprints these days. On the other hand, on a normal day I can experience eight to twelve productive bowel movements. Often under a fair amount of pressure, meaning I clean the toilet a lot. All of which is just freaking weird. And I frequently experience what I call "surprise poops", one reason I almost always sit down to pee these days. Just in case...

My colon guy keeps telling me I should be back to normal there. He only took 22 cm of my colon, specifically the sigmoid colon from the colorectal junction upwards. I have over 100 cm of colon remaining. But each section of the colon moves at different speeds, and the sigmoid is the "brakes". I think I experience a combination of overdelivery from further up the pipe, and signalling errors from the rejoined colorectal junction. Both of which seem logical enough to me, whatever my doctor says.

As a result, I have a notably toilet-centered lifestyle. I can and do hold it in long enough to sit through a movie, or a moderate car ride or short flight, but that's about it. I don't really mind, given that my few experiences with constipation have been far more disruptive to me. But it still feels weird to me sometimes. I am generally pretty unapologetic about my life choices and behaviors (viz. my wardrobe), but bailing out to the can a lot is unsexy, uncool and socially disruptive, and it's one of the few things that will still consistently embarrass me.

I don't know how chemo is going to affect this. Possible side effects include both diarrhea and constipation (at the same time?). It's also apparently quite common to lose weight due to significant undereating, given nausea and the accompanying loss of appetite. How all this will affect my colonic health remains to be seen. I've long since given up ever being normal in this regard, but I'm not looking forward to being even more not-normal.


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cathshaffer
User: cathshaffer
Date: 2009-12-27 14:35 (UTC)
Subject: (no subject)
There's a yoga pose called "wind removing pose" thatmay offer some small relief. As it's name implies, it gives the colon a gentle but firm massage and can help with all manner of unpleasantness. You can google for instructions. It is easy todo, and feels nice for your back, too.
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Jay Lake
User: jaylake
Date: 2009-12-27 14:47 (UTC)
Subject: (no subject)
Thank you. I am both amused and unsurprised.
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farmgirl1146
User: farmgirl1146
Date: 2009-12-27 18:51 (UTC)
Subject: (no subject)
Looked it up. I have done this for my back. Thank you.
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User: joycemocha
Date: 2009-12-27 15:53 (UTC)
Subject: (no subject)
I think you're definitely on to something with the previous adventures with the colon being a possible hint something was going on. DS had issues before the Crohn's showed up active--one that I can remember from when he was six weeks old.

As for bailing out to the can a lot--don't be embarrassed, it's a fact of life. Based on the predictable timing of some of my students who need to sign out to use the bathroom (and looking at their signout sheets), you're far from alone (and these aren't kids who use it as avoidance, necessarily, they just need to bail out a lot).
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shelly_rae: Big leaf Maple
User: shelly_rae
Date: 2009-12-27 16:45 (UTC)
Subject: (no subject)
Keyword:Big leaf Maple
I have several of the same "symptoms" from my long ago surgery but because of my age (then) and time I've grown to think it "normal." In talking to you I realized that not everyone does "deer droppings" all day long (OMgosh I can't believe I'm writing about my bowel movements in public).

But hey, if we're someplace I can always announce that I'm off to the W.C. thus giving you a polite distracting "out". I'm just saying cause of that grenade and all...

Now if you could just try the wonders that are halibut or salmon. mmmm....
Anon
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Jay Lake: graffiti-fishbones
User: jaylake
Date: 2009-12-27 17:31 (UTC)
Subject: (no subject)
Keyword:graffiti-fishbones
"Fish heads, fish heads, roly poly fish heads..."
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shelly_rae: Salmon
User: shelly_rae
Date: 2009-12-27 17:42 (UTC)
Subject: (no subject)
Keyword:Salmon
Eat them up! Yum!
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e_bourne
User: e_bourne
Date: 2009-12-27 17:35 (UTC)
Subject: (no subject)
My mother and brother had/have serious colon problems. In the old days, the solution was to cut them away, inch by inch. Or rather foot by foot. My mother, after 20 years of this, ended up with no guts at all. Seriously. She had an iliostomy bag attached to her ilius as it left her stomach. Nutrition was a constant problem. As was always staying within reach of a bathroom and keeping spare bags and acoutrements about. The bad old days of that technology. She said fuck it and traveled anyway. To Ireland. To the jungles of Guatemala. Across the country to visit people and take pictures (she was an amateur photographer).

Of course, when I have least little bit of blood in my pooh, I batshit panic. Her amazing example of cheerfulness and courage ought to inspire me. Instead, I remember (maybe because I was a kid in the sixties and early seventies) the decades of surgery and hospital visits and whispered conversations. I'm not even sure why I'm telling you this except that she survived everything that was thrown at her. She died in her seventies of failure to thrive. The medical words for "ready to go." And this daughter has been perfectly healthy. What a crap shoot life is.
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Jay Lake
User: jaylake
Date: 2009-12-27 17:38 (UTC)
Subject: (no subject)
Crap shoot, indeed. And go mom.

I am very lucky to be living in these times.
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Lady Jestocost
User: ladyjestocost
Date: 2009-12-27 18:23 (UTC)
Subject: Iron Intake
If you're worried about that, clams have more iron than pretty much anything else (as in heaps more than beef). Of course, you have to like clams - but drown them in enough butter and garlic and who'll notice if you like clams.

This surprised me too, when I found out about it.
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farmgirl1146
User: farmgirl1146
Date: 2009-12-27 18:42 (UTC)
Subject: (no subject)
Oh lots of us bailout often, even without colon problems. Some of my allergies ream out my gut. I try to quietly disappear for a while. God forbid the house has only one hole. People will accept these bodily functions or be butt heads.

I wish you the best on the chemo. A friend of mine who went through it had a two to four hour treatment, depending on the day, the round, etc. I would visit her at the clinic. She was great for the first half and asleep for the second half. Your concerns have a strong basis in fact. I hope that you can prioritize what you want to do, and not be side-wacked by emergencies (other people's real and invented). Ye Daye Jobbe and The Child, lead the list I am sure. The rest of us will get in line, and be thankful for the merest crumbs.

I strongly suggest that you store your writing and other work on a online server that is automatically uploaded frequently. Another writer friend of mine began to have judgment problems on chemo, and accidentally erased all her work by not being able to recognize all the commands properly.

Better food and less fat always makes us healthier. More vitamin D, too.

HUGS.
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a Me: green snake
User: justanyolname
Date: 2009-12-28 15:03 (UTC)
Subject: (no subject)
Keyword:green snake
There is some research about Vitamin D levels affecting survival after (colon or maybe all) cancer: the farther below normal folks are, the worse their survival rates.
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farmgirl1146
User: farmgirl1146
Date: 2009-12-28 16:06 (UTC)
Subject: (no subject)
Vitamin D is also being credited with lower colon cancer incidents in pre-cancer folks. Guess our systems are still looking for the African plains.
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Elf M. Sternberg
User: elfs
Date: 2009-12-27 19:52 (UTC)
Subject: (no subject)
Given that Day Jobbe apparently involves a lot of flight time, you are so not going to enjoy the new TSA flight rules viz no getting up for the last hour, no electronics or other distractions, "hands where we can see them."
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The Green Knight: afraid
User: green_knight
Date: 2009-12-27 20:18 (UTC)
Subject: (no subject)
Keyword:afraid
I would reccommend a medical note to be handed to the flight attendant at the beginning of the flight if that rule really comes into play.
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Somewhat Bent: Biohazard
User: ladyallyn
Date: 2009-12-28 08:34 (UTC)
Subject: (no subject)
Keyword:Biohazard
Seconded!!
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Andrew Trembley
User: bovil
Date: 2009-12-27 20:35 (UTC)
Subject: (no subject)
You may already be doing a fiber regimen, but if not, it may help you "slow down" a little.

We tried Citrucel (methylcellulose) pills (the powder is loaded with sugar) and settled on Benefiber (wheat dextrin) powder (and pills for travel) on K's gastro's recommendation.
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lt260
User: lt260
Date: 2009-12-27 20:50 (UTC)
Subject: (no subject)
If you experience flash flooding with Sir Bovine von Beefhoven, how about other red meats? To wit: emu, ostrich, yak, bison, elf, duck, etc? Exotic meats tend to be a bit pricy but on occasion one can find sources that are quite reasonable and compare well with the stickers at Safeway.

As far as the porcelain throne is concerned, I empathize to the nth degree. Certain meds I have to take tend to inhibit water re-absorption on a sporadic basis. I never know what is going to set it off, but I always hope it is not after I make like a fire-eater with the chilis and spices. I also like it when the MD asks about loose movements. The image that comes to mind is of the medieval leader commanding his archers to let fly. Yes Virginia, the thought of a cloud of pointed darts descending upon my person would be enough to loosen things up a bit.

One interesting side note is that syndromes of this type can give a person an appreciation for commode construction. Things like seat diameter, bowl depth, and leg room are no longer trivial matters. An improper discharge to surface distance can lead to tuchus turmoil and a spate of “oy vey” emanating from the throne room. It is for this reason that single-ply should be outlawed as cruel and unusual punishment.

Respectfully submitted,
Yours from the runny trenches
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martianmooncrab
User: martianmooncrab
Date: 2009-12-27 21:34 (UTC)
Subject: (no subject)
experience eight to twelve productive bowel movements

I like to say "its not always gas" when people have this kind of paradigm shift. I have IBS for over 15 years and its a real bitch at times. And the constipated diarrhea... its exciting .. in a bad way. Painful comes to mind.

The label reading helps a lot, avoiding the triggers and the allergies does limit the intestinal responses. I recently discovered that avoiding "enriched flour" has decreased the episodes too.

You just keep paying attention and adjusting.
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alumiere
User: alumiere
Date: 2009-12-28 01:45 (UTC)
Subject: YMMV; some tricks that I use...
Digestive issues suck; I do second the fiber supplement may help with frequency/control though. So many of the meds I take list both diarrhea and constipation as a side effect it's ludicrous. For me that translates into runny runs to the bathroom every few days, but not constipation as I do take fiber.

Side effects also include nearly constant nausea and limited ability to keep food down. And my doctor keeps yelling at me for being slightly anemic. I suggested strongly in our last conversation that the meds that do the most damage (fluconazol in particular) need to be replaced. I can't continue to lose weight (5'7", 120 lbs soaking wet; down from 150+ in September) and I would really like to enjoy a meal once in a while.

Also, I find that ginger altoids and a few minutes away from the table in fresh air will often allow me to come back and eat a little more. I also wind up eating small portions a lot more often, or leaving half the meal on the plate and re-warming it a few hours later when my guts have calmed down again. Unfortunately for me, this often makes restaurants or meals out a bad idea; I always feel rude when I have to run outside during dinner because the food smells make me want to puke.
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weezlgrrrl
User: weezlgrrrl
Date: 2009-12-28 05:36 (UTC)
Subject: (no subject)
Aw, dude. I feel your pain re: the abrupt and embarrassing bathroom charge. I have Crohn's disease, and even though I regulate it pretty well with diet and fiber, I never know when it's going to strike. It's particularly delightful to have to stand up in the middle of a big meeting at work, say "excuse me please," and then sprint for the john...
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Magenta
User: magentamn
Date: 2009-12-28 14:55 (UTC)
Subject: You probably know this already
Do you live in a state that has medical marijuana laws? For some people, it can really help the side effects of chemo, especially loss of appetite.
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Jay Lake
User: jaylake
Date: 2009-12-29 03:30 (UTC)
Subject: Re: You probably know this already
Yes, Oregon does have medical marijuana laws. However, given that one of my biggest fears is mental blunting, doing blunts seems sort of counterproductive. :\
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.: hhw :.: cat and girl and librarian
User: hhw
Date: 2009-12-28 14:58 (UTC)
Subject: (no subject)
Keyword:cat and girl and librarian
Over at Small Beer Press in August was a mention of a book by Kelly's uncle about curing constipation that may be of interest for this thread due to its focus on intestinal health (i.e. 1. it's not just relevant to the constipated and 2. it defines people as constipated who might not have assigned the label to themselves). The blog entry includes an interview with the author:

http://smallbeerpress.com/not-a-journal/2009/08/30/uncle-wess-new-book/
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Jay Lake
User: jaylake
Date: 2009-12-29 03:30 (UTC)
Subject: (no subject)
Thanks!
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