Month: December 2012

I’ve been alluding to a little project.  And I’ve told you the story about how somehow the transformation of the assless into the hardass led to a mountain biking addiction, which may well have pulled me out of a postpartum like depression, or at the very least funk, that I’d been experiencing since treatment last finished up for me a year and a half ago (a refresher if you’re already lost).

I have absolutely loved riding the Satori that Cory hooked me up with, but have wanted all along to be riding something that I built for myself.  Doing so was a project that I had imagined I’d get to when I got to it.  No particular rush.  Well.  The timeline around here has changed a little.   If I want to guarantee that I get any time riding the thing, I need to get right to work!

So I’m building myself my ULTIMATE bike.  Though maybe we need to find a new name..  The double entendre of best and last, contained in “ultimate” might be a little heavy handed.  AND might turn out to be flat WRONG.  I mean, I’m not promising that I’m going to die here..   there could well be more, and better!   I suppose we could go with the already running ass theme..    There’s been the assless..  then the hardass..  (susan M. is getting the kiss my ass, eventually).  Perhaps the Badass..   or just the Fasst.  Your submissions welcome.  This is a digression.

It has been pretty hard for me to focus on bike building these last weeks.  I’m sure that you understand.  But there’s nothing like a project for yourself to get you back in the shop!

So here’s the idea.  I’m building myself a superb (well appointed) 29er hardtail am/xc bike with a 1×11 (yup) drive train, a very tight back end (the tight ass?) and plenty of travel up front.  When I am no longer able to ride this bike, I will auction it off and the proceeds will go to a yet unnamed cancer research organization.

Much like when I built the Assless all those years ago, the bike industry is backing my play!

When my good friends at Schwalbe heard the idea, they said they’d donate the tires.

Industry Nine makes some of the very best hubs and wheels in the industry, right in Asheville, N.C., and when I told them about it, they said, “Hey Ezra,  We’re in, 100%.  Just tell us what you need and we will make it happen. We are grateful to be a part of of this project.”

Discussions with SRAM are still in process.  Some of this has been a little tricky over the holidays.  But the word coming down is that they’re going to be donating at least one of their brand new XX1 drivetrains!

So.   Well on the way.  Once the new year comes, and people are back in their offices, I’ll be talking with some folks about rims and cockpit..   More to come!

Yesterday I got back into the shop and started work on a prototype frame, that my brother and I will throw a hodge podge of parts on and *cough* product test the first chance we get!

Pictures of the process coming soon on facebook and the process blog (perhaps even a movie or two).

The promised discussion of our decision to proceed without aggressive treatment is coming.  I promise.  It’s a lot to wrap our heads around, and I want to be sure that I deliver it the right way.  I’m waiting for a morning when I wake up early and don’t feel all in a rush to go and get stuff done!  But the decision is pretty clear at this point.  We are looking into the options for palliative care and eventual hospice care.  (crazy to imagine.  I FEEL fine.  This whole thing may be a hoax..)

out!

The day after I wrote about dancing with a handsome stranger who would take my life,  my mother woke up with a line stuck in her head that she couldn’t identify right away.

how do you like your blueeyed boy mister death.

She tracked it down.  A poem she had known by heart some 30 years earlier.

Buffalo Bill ‘s

e. e. cummings

The whole family has spent the last week getting used to the idea of non treatment.

There is no resistance.  We’re just all trying to imagine what it means.  To accept a hard reality instead of struggle against it.

I appreciate all the supportive comments.  I appreciate just as much, those of you who have written to respectfully disagree!  To encourage me to keep going with treatment.  And I imagine there are plenty of you who feel the same who simply aren’t writing in.  I WILL talk about this.  Soon.  I’m looking for the right words.

Hillary and got out of the city for the weekend.  We spent a few days with My Sam, Emily, and Caroline up in Maine.  Visited with my very best friend from College, Kim, husband Jon and brand new baby Maxwell, and did some advanced snuggling with their great dane puppy, smudge.

Fish chowder.  Oysters.  Mussels.  Beef shin ragu.  Lobster quiche.

It was horrible.

During the weekend Hill and I had a good chunk of time to talk about my health, and options.  We are both currently leaning hard away from doing anything at all.

I know I’ve just said a mouthful.

We’re not trying to make a decision as much as we’re trying to let one emerge.  As we think through the reality of the possible paths it’s hard to imagine signing up willingly for the misery of treatment in the face of lousy odds.  I have a lot to say about this.  I don’t quite have it well enough gathered in my head to write it down at the moment.

Besides.  It’s my birthday.  I’m 309.

More soon.

My medical team, Hill and Special Ed, went to a second opinion with me yesterday.

A very cheerful nurse checked me in and took my vitals, chirping the whole time that everything was going to be just fine.. that I was in very good hands.

Finally she asked, “what’s the diagnosis?”

“stage IV rectal cancer.”

“everything will be just fine.. he’s a very good doc.”   (!!?)

The doctor came in with my 70 page medical history.  He read it back to me to make sure that he had everything.

He examined me.  Poked and prodded.  He smiled and said, “you seem to be in terrific shape!”  (I’m getting there, I thought..  you should see me ride a mountain bike!)

He then took us to his office and presented us with an identical prognosis and treatment plan as my own oncologist had.

Without treatment, 6 months before I start being very sick indeed.  With very aggressive treatment, if everything goes perfectly, single digit years.

I had written to my own doc (through his assistant) to clear up what felt like a missing statistic.  Just what did he actually figure my chances were of responding well enough to the chemo to proceed to surgery?  And what were my chances of having a successful surgery that left me in remission?

“An almost impossible question.
Up front, I’d have to “guess” that he has about a 40-50% chance of getting to surgery and about a 50-60% chance once there that all disease is resectable.”

This new doc, when prompted said that my chance was about 30-50%.  Pretty similar.

This number game will be pretty tedious for a lot of you.  And for an individual, statistics obviously mean nothing.  Then again, it’s what we have to go on when trying to make a decision.

40% of a 60% chance, in order to get to a 20% chance of having single digit years..   Whoa.  (that’s just under a 5% chance, for those of you who are flummoxed by the math.  I can throw a bullseye left handed with better odds than that!).

And yet, this doctor felt that it was a no brainer.  Obviously I should go ahead with treatment.

The whole thing leaves me scratching my head a little.

Ok.  Just an update.  Second opinion was just like the first.

Now I’m going to tune up my mountain bike and spend a couple of days riding.  My brother and his wife and my good friend Todd have all come down from vermont to crash around in the woods with me!  Life is good!

Big love.

Hi.

Hill, special Ed and I sat down with the doc yesterday to hear just where we actually stand.

I had steeled myself for the worst, knowing though, that it might end up being a big anti-climax..  (“well..  you know..  it’s really not so bad.  We think that you’re probably going to have to double your daily dose of aspirin..  I know that’s a pain, all that swallowing, but do that and we think you’ll be fine..”   Or perhaps “Mr. Caldwell..   We are SO sorry.  We were looking at someone else’s petscan.  You’re fine.  He’s pretty fucked, but you’re going to be just fine.”  The broken ribs and colostomy are a bit of a giveaway, though.)

This was no anti climax.

He says that with no treatment at all I have 6-8 months so live.

On constant chemotherapy, he gives me around 2 and a half years.  (and he noted that this course is likely what the biggest deal doc at Sloan would recommend)

The most aggressive version of treatment would be 3 months of chemo hoping for a good response from the tumors, then surgery, then more chemo.  Then some voodoo, I think.  If I made it through all that, it would put me in a statistical pool that had a 20% chance of surviving (defined as making it 5 years or more).  The greater likelihood is that I would recur and end up right back where I am now (but with the knowledge that treatment had not worked.. again..)

The tricky thing about that 20% is that it’s just 20% of the people who actually make it through the treatment.  FIRST I’d have to respond well enough to the chemo to qualify for surgery.  THEN I’d have to have a successful surgery. And finally I’d have to endure adjuvant chemo.

The surgery would involve opening me up again.  The surgeon said that it wouldn’t be QUITE as bad as the last one, but in the same ball park.  The tumor in the mesentery is close enough to my stoma, that it could mean removing the stoma to get margins and making a new one.

The chemo itself has a list of side effects as long as your arm, the most common (besides nausea, vomiting, chemo brain, and hair loss..  the things we take for granted.. ) being very bad diarrhea.  It would likely mean a backslide on the quality of life gains I’ve made with irrigation and the relative continence it provides me.

“So, doc. I’m pretty sick, huh?”

“I don’t know..  you don’t look sick to me!                You DO have very serious disease.”

Obviously we have some pretty serious thinking to do.   Obviously we need to get another opinion, or several.

For quite a while I’ve had something that I’ve wanted to say, or talk about somehow.  I have touched on it in the past but never really taken it head on.

You would all do me an amazing service if you would entertain the notion that the fight metaphor may not be the most helpful one.  Or maybe it’s not as helpful now as it was in earlier stages.  It’s difficult to change the language around something when it is so engrained.  “Fighting cancer..” “died after a long battle with cancer..”  etc.  But this implies that there are winners and losers.  That if we die we have lost.  But we ALL die.  No one makes it out alive.  That shouldn’t make us all losers.  The most pernicious part of the fight metaphor for me is the notion that if someone dies young from cancer they simply didn’t fight hard enough.  That if someone decides to forgo treatment, they have “thrown in the towel.”

I don’t see any grace in the desperate clinging to life that we call fighting in this metaphor.

Maybe instead I’m having a slow dance with a handsome and charming mad man who has made it quite clear that eventually he’ll have to USE the straight razor that he’s holding to my throat.  I believe him.  He doesn’t seem like a guy who lies.  Why he has to cut my throat isn’t clear.  In the mean time, it’s a warm embrace.  I’m holding him, he’s holding me.  He’s whispering the most beautiful and insane shit to me, all wise, all true.  I’m trying to enjoy the dance as much as I can, trying to learn as much as I can, trying to stay present despite the knife at my throat.   And now he’s starting to cry.  You dig?

Don’t get me wrong.  I’m a fighter all right.  I have been from the start.  Walking around barefoot with fists cocked.  But this isn’t a fight.

I do want to live.  I’m not nearly done eating up stuff yet.  I’m just starting to get good!

Assuming that second and third opinions paint a similar picture, seeing how I tolerate the chemo seems to us like a reasonable first step as much as I dread it.

Naturally, I will keep you posted.

Thanks.

A few years ago, when my nephew Gunnar was just 4 or so, he passed through town with his parents.  I can’t remember the details, but they arrived pretty late at night after a long flight.  Gunnar was delirious and a little manic in the way that kids can get when they’re over tired and disoriented.  He was doing laps around the kitchen and bike room, and paused on a stool for a sip of water.  He slipped off the stool and on his way down, BEFORE his head hit the counter, he shouted, “I’m ok, I’m ok..”

Hill woke up yesterday realizing that there was an event at school in the evening that she was supposed to have organized..   and hadn’t..  at all.

When I called her to tell her that I had arrived exactly an hour early for my weekly pre-pool therapy appointment, she pointed out that..    “We’re ok, we’re ok!!”   I think that pretty well sums it up.

Thank you all for your kind words.

The emails and comments have been quite overwhelming.  I apologize if there were emails that warranted a response and didn’t get one..  I’m a little preoccupied!

I have a lot to say.  I’m gathering my thoughts.  More soon.

Tomorrow I will have an appointment with the doc, and then an appointment with my surgeon.  By tomorrow afternoon I’ll have a lot more information to pass on.

It’s all pretty exciting.

Here I am on the ride that I DID take after getting the news.  This photo, shot by my friend gorgeous georges, cheers me up and is clear evidence of the healing power of mountain biking!