Archive for January, 2012

10k

Because 10.1K sounds so much more impressive than 6.27 miles!  Then again, 500 feet of elevation change sounds more impressive than 156 meters!

I’d love to say that it was no big deal..  but it actually felt like something of an accomplishment.  I think I’ll rest for a couple days and then do a week or so of shorter runs before I do something like that again.

Now.  On to what’s important.  Poop.

I have taken to irrigation like a duck to water!  From the little I’ve read about it, this is not always the case.  Apparently it takes some people several weeks to adjust to it..  and for some, it never works at all.  For me, it worked the first try (it was a messy disaster, because the medical supply company was out of the sleeves you use to guide the effluence into the toilet, so I went bare back, BUT it worked!!) The amount of time that it buys you continence is different for different people, too.  The first time, I went 48 hours without producing anything at all.  Hill and I spent a long weekend in Chicago to see our niece, Vern, and I irrigated for the second time just before we left.  Nothing started to happen again until I was on the plane headed back (about 74 hours later!!).  To be safe, I think I will probably just do it every other morning and know that I can just wear a little cap instead of a bag, and not have to worry about a thing!

Game changer!!!

This thing is pretty cool.  Little cap that protects the stoma, and has a charcoal filter so that inadvertent farting doesn’t stink up the room (more than I can say for all of you folks with butt-butts instead of belly-butts).

The process is a little bizarre.

The first trick is getting the cone into the stoma.  The bowel, of course, is driven entirely by autonomic function.  That is to say that you don’t really have any control over it’s contractions..  Getting it to accept the cone is a bit of a Jedi mind trick (“These are not the droids you are looking for..”).  You take some deep breaths and sort of will the thing in there.  Getting the bowel to accept water at that point is similarly mysterious.  Patience.  Remembering to breath, etc.  Once the water starts going, it GOES. And when it starts coming out, it COMES OUT!! That’s when things get really exciting (it’s also when your wife will say, “baby?  Um.. I just need to get my toothbrush.. can I come in?”  and you have to say, “NO!  I’m feeling a little vulnerable at the moment!”).  I won’t describe it, I don’t think, but I WILL tell you that it’s magic. And I WILL tell you that I don’t sit on the toilet like YOU do.

The whole thing leaves me feeling a little light headed and euphoric.

What an amazing difference, though, to never have a bag of shit hanging from you.  There are wardrobe implications..  etc.  I’ll have to do a little research, but it’s my understanding that there are caps that are even lower profile.  I’ll report back.

Those of you out there in my position, give it a try if you haven’t.  It’s well worth it.  (please, if you have questions, don’t hesitate to write. I don’t know much, but I’m happy to share!)

Ok.  I’m off to the shop to make some stools (impossible to avoid poop talk once you get started..)  But really.  I am.

Wherein he mostly talks about poop.

Since ya’ll seem to be paying so much attention to what my run LOOKS like..

Things went a little pear shaped at the end of last week.  Nice short run on Thursday, with the intention of doing something longer on Saturday.  I woke up Saturday morning to a snow storm, though..  Which ended up being just as well because I managed, somehow (sitting up in bed) that morning, to aggravate the herniated disks in my upper back.  This happens now and again.  It predates cancer.  I’m pretty sure, though, that it was these two or three (can’t remember) disks in conjunction with the chemotherapy that caused me so much pain over the last winter.

Since around the time I started running, though I think it’s a coincidence, I’ve been having a strange change in bowel habit, all starting with a day of REALLY excruciating gas pain a few weeks ago.  The gas pain seemed to mostly resolve a few days later when I went for a run, completely emptied out, and had to finish the run with a full bag.  (yuck.  right.)  I felt pretty good for the rest of the day, and maybe a few days after, but noticed that I wasn’t really *cough* producing much.  By the snowy Saturday with disk pain, I was feeling pretty bloated and gross again.  Like before, this resolved itself in spectacular fashion, and I spent most of the day, well..  pooping.

That night I had horrible chills and feverish dreams, and in the wee hours of the morning I felt as though something might be REALLY wrong..  That perhaps I was going to have another seizure.  Who knows?  Woke up on Sunday feeling ok, though.  Still, I thought I’d take it easy for a few days.  Got back to running this morning.  The rest did me some real good..  The secret to feeling good when you run?  Don’t run very often!  Ha.

(I will be seeing my G.I. doc this afternoon to hear what he has to say about this new pattern in bowel habit).

In other news:

THIS SHIT IS ABOUT TO GET HIGH TECH!!!  (and I’m using the expletive clinically!!)

I finally managed to get on the phone with someone at my healthcare supply company who has a little sense, and was able to hook me up with some irrigation supplies..

Here’s how it works.

Step one:   You’re going to need a Belly-Butt.  The majority of you reading this are disqualified.

Step two:  Fill the bag with water and hang it from something high like a shower curtain.

Step three: Lie down and stick the cone..   Actually, you know what?  Since I’m pretty hazy on the next few steps anyway, I think I’ll leave it there until I know what the hell I’m talking about.  Check back soon!

(Joking aside.  Irrigation is something that many Shit-baggers find allows them a serious boost in quality of life.  Essentially, a once a day enema that empties out the bottom foot or so of colon, and allows you to cover your stoma with a little cap instead of the usual shit bag, since peristalsis won’t push anything to the end of the line for another 24 hours or so.  That’s the theory, at any rate.  Apparently, some people take to it pretty quickly, and others never adjust.  I’m hoping I’m a quick learner!)

Sometimes on here I talk about food, and art making, and the finer things in life.

Today I talked about poop.  Sorry.


For Ashley and others:  The running does not seem to be helping my sciatica at all.  Not yet, anyway.  If anything, it may be aggravating it.  My body continues to be riddled with aches and pains that I associate with the chemo, the sciatica being severe enough that most of the time it masks the others!  Running DOES seem to be helping with the depression a bit, though, for what it’s worth.  I’ll be seeing a physiatrist (??first I’d ever heard of it) on thursday to see what she has to say.  Hoping that maybe we can try a cortisone shot or something like it.  My upper back disk issue, when it gets really bad, has been set straight in the past with a course of steroids.  Maybe something similar could break this pain cycle..  I’ll let you know.

shorter and shorter

I woke up feeling pretty lousy this morning.  Some joint pain and bad sciatica.  I hadn’t been out for a trot since monday, though, and made the gamble that I’d feel better and not worse after a short run.  Took Putney with me.  No better excuse than a dog who wants to stop and sniff EVERYTHING, to let you go easy.  I’ll rest tomorrow and see if I feel up for something a little longer on Saturday.  Weee!

short

It felt slow and flat, but it turned out to be faster than Saturday’s run, with more elevation gained/lost.  Still, definitely a recovery day.

Today’s

Slow and steady.

Felt more or less ok.
Except that at around mile 3 an upset stomach that I’ve had for the last couple of days let loose into my bag.  I lost about two pounds, but had to carry it around for the rest of the run!

Gross.  Sorry.  I know.

oops

Ran home from my doc appointment this morning.  (picked up some shoes yesterday).

I didn’t mean to go 4.5 miles.  I thought I remembered mapping the bike ride to my doc’s office and coming up with something like more like 3.  Of course I don’t noodle around so much on a bike.

Oh well.  It was tiring.  I’m home now and glad to not be running.

Rinse off and get out to the shop.

Thank you all for your support.

I hate running.

This morning I went for the third run I’ve been on since my surgery 15 months ago.  (averaging once every 5 months..  that’ll keep anyone in shape!!  Though actually all three runs were perpetrated in the last month and a half).  Each of the three runs has been horrifying in its own special way.  The first one started out fine.. but after those first fine ten paces I felt horrible and kept feeling horrible for the short two miles that I managed to complete.  It was about half a mile in that I heard some triathlon fitness freak padding up behind me and thought, “christ..  just what I need.”  When the padding turned out to be a chubby little coed from Columbia in a pastel tee listening with oblivion to pop music on her ipod while passing me like I was a potted plant, I almost stopped and walked back home.

The second run was with my wife.  On a whim.  To keep her company.  My wife is awfully fit for an academic.  We went 4 miles, which was rather longer than I should have gone.  At some point I had to ask her to walk for a while.  A little after that, I asked if she would terribly mind carrying me.

This morning’s run was a more manageable 3 miles during which I experienced nausea and could feel my heart beating in my eyeballs.

So why the hell do it!?  Well. 4 years ago, just before all this cancer horse shit started to go down, I looked like this.

(stop blushing..  you’ve ALL seen me naked).

To be, just 4 years later, a skinny-fat, incontinent, impotent mess with sciatica and a bad attitude, is a real kick in the teeth (make no mistake..  I will still WRECK you at handball).  And it’s not just vanity.  I mean at this point, with a shit bag hanging from me, I’m not likely to be doing a lot of shirtless hanging about in public.  It just always FELT pretty good to be strong, flexible, energetic, and etc.  I currently feel none of those, and I’m not sure I want to put up with it.

It was right around this time of year, the last time that I was in remission, that I finally had enough energy to feel the urge to get moving again.  I ran.  Within about three weeks I had gotten up to 9 miles, at which point my joints all revolted and I had to stop. But the damage was already done.. I was more or less back in shape.  SO, right on schedule I’m feeling that same urge again, and happily, I know from past experience that it does come back.

The bad news is that everything hurts.  Docs aren’t willing to acknowledge it, but I’ve heard the same from others who have endured chemotherapy too:  the stuff makes your connective tissue hurt.  It’s as though it ceviche-ed all my ligaments, tendons and cartilage.  We’ll see how it goes.

In all honesty, I think that my physical state, and a general lack of activity are contributing to a level of listlessness and depression that I’ve been feeling for months now.  It’s clearly not a silver bullet.  I mean, there’s also the existential crisis I’m having around being a bike builder who doesn’t ride bikes, chronic discomfort that I’ve been experiencing since all this started, AND the creeping fear of recurrence and DEATH.  But.  Being a little proactive about getting in shape might help.  I figure that if I write about it here I might feel just accountable enough to all of you, that I’ll actually get out and go even when I’m really not feeling like it.

A pair of running shoes might be a good idea too.

gnocchi (again).

Hi.

It’s been a little while since I wrote anything here. Been even longer since I made a movie about food.  (directions for gnocchi can be found in this post)

About 8 months ago, Sam Newman showed up on our doorstep. A mutual friend had told him that we would be friends. I invited him to stay for dinner, and by our calculations, he has eaten here more than he has not ever since. About a month ago, he moved in. He is a Vermonter. So. The Vermont house has gotten a little Vermont-er, Hill now, the only non native.

Sam is a film maker. He was willing to drive the camera, and that was just enough of a push for me to try and get back on the horse.

I found the editing pretty tiresome. Had to do it in a couple of tries. I realized that last winter, when I was doing these with some regularity, I was pretty high on narcotics most of the time! Nothing to get you through tedium like some narcotics! In general I’ve been feeling a little too antsy to get much done lately. I’m finding that my attention span has shrunk (unbelievable!)

The other day I finally had a first visit with a brain doctor who specializes in people who’ve been through life changing medical events. After an hour or so of getting my recent history she said something to the effect of, “wow.. you’ve been through a lot.. How on earth is it that you’re just NOW coming to me” I guess I’ve been a little busy.

shit.  Like I was saying.  Attention span.  I’m going to go do something else.

UPDATE.

Ezra to Samamidon:

SAM!

was cruising around vimeo, and found that someone had stolen some of your music!!!

X
Samamidon to Ezra:

I am promptly forwarding this to my lawyer so that he can improve his cooking skills!!