I guess you wouldn’t really know it from this photo, but my pain level spiked early this last week in a pretty significant way.

I took some photos of my new friend Dane, an old friend of MySam, on Sunday.  When I finally got around to posting one on Friday, I realized that I had no idea where the week had gone.  I was super excited about the photos but hadn’t managed to find the time to post a single one..  Yet, couldn’t remember for the life of me what had been keeping me so busy!  I hadn’t worked on the UTA..  Hadn’t worked on T-mac’s cargo bike.   I HAD spent a good deal of time flat on my back, though, in a listless funk dealing with a new level of chronic pain.  Somehow that had really passed the time!

Sciatic pain is pretty old news at this point.  It’s usually there to some degree.  If I forget to take gabapentin, I usually pay for it.  If I sit too much I get uncomfortable.  Etc.

This is something different.  I’ve mentioned this thing that I call cancer pain before.

When I first went to the doctor 4 and a half years ago, I went because I was experiencing fairly constant discomfort.  The discomfort felt like constipation, but wasn’t.  For some months leading up to that first appointment with a doc I would try to go to the bathroom about 8 times a morning with no particular success, and no relief from the discomfort.  What I realized after finally having someone take a look and discover that, yes, as I had feared, I did have cancer, was that what I was feeling was PAIN, not pressure – not constipation.  I DID have a gut sense (ha ha) that I had cancer back then.  I can’t explain it.  I just knew.  It took a couple of trips to the doc to have him take that fear seriously enough to even look!  It was that improbable that someone my age and in my state of health would be sick.

After a year of pretty brutal treatment – chemo/radiation, surgery, another 6 months of adjuvant chemo – I was declared cured and was sent on my way.  They were going to “watch me like a hawk.”

Six months after treatment ended, I started to experience that same discomfort.  At this point I still had an asshole.  They had worked hard to preserve my continence (in hindsight, probably a terrible decision).  I told the doc about this discomfort, and he explained that it was perfectly normal for someone who had been through what I had to be anxious about recurrence.  That this was in my head.  When the pain persisted, and I told him emphatically that it was in my ASS not my head, he sent me over to the GI doc, who did a scope on the spot and found nothing.  Six months later, almost exactly two years from the original diagnosis, during a routine colonoscopy the same GI doc found a tumor.   The tumor was fairly large, and clearly fairly sneaky.  It was big enough, that there was a pretty good chance it had been there 6 months earlier, and they simply hadn’t seen it.

SO. Immediately there was more surgery.  This time they took everything.  Asshole and the bottom 6 inches or so of my colon, which they re-routed to my stomach.

During this surgery, they discovered enough lymph node involvement to stage the cancer at IIIC and to need to follow up with another 6 months of chemotherapy.   During that stretch of recovery from surgery and chemotherapy, I was in considerable enough pain to be on quite heavy doses of narcotics.  Getting off them when the chemo was done was more than a small chore.

This time they really did watch me like a hawk.  PETCT scans every three months.  Colonoscopies every three months.   A full year went by with no evidence of any cancer.  This was a good sign.  Besides the sciatic pain (and some fairly persistent postpartum depression) I had no complaints.

In October of this last year, though, I began to feel that SAME fucking pain again.  The same pain that had sent me to the doc 4 and a half years earlier.  This time, I convinced MYSELF that it was in my head.  My new doc (I fired the old one for not letting me ride bikes..  obviously it wasn’t that simple, but that’s a good story), had switched me to PETCTs every 6 months because I seemed to be doing so well.  I convinced myself that this was just anxiety over such a long chunk of time passing without the reassurance that there weren’t any tumors.  After all, I was feeling pain in tissue that wasn’t even there!  I was feeling the same ASSHOLE pain that I had felt originally, and I no longer had an asshole!  Figure that one out.

I requested an appointment with the doc, and reported this pain.  He ordered the PETCT a little early, and sure enough there was metastasis.   So three out of three.  Three times now I have had the same pain leading up to a diagnosis first of stage II then stage IIIC and finally stage IV cancer.   Cancer pain.  That’s what I call it, and that’s what it seems to be.

Early this last week it got quite bad.  I have also been experiencing some pain around the stoma, and occasionally some pain in the liver (?).  Lately I’m wondering if it’s possible that when they moved the colon to my stomach wall, they moved nerves with it.  If perhaps the tumor in the mesentery is a recurrence of that original tumor, just moved with the colon to a new place..  and if the cancer pain that I’m feeling where my asshole should be is just those same nerves firing even though they’re in a new place.  Firing because there is a tumor there.  That I’m FEELING it in the place that the nerves used to be.   And that the pain I’m feeling around the stoma is pain that I’m feeling locally through nerves that are right where they’re supposed to be, caused by that same tumor.   I’ll see the doc on Tuesday and I’ll float this idea.

Experiencing withdrawal from narcotics that first time around made me fairly resistant over the intervening year and a half to ever use them (I took 30mg of codeine the day that they removed my port, and nothing else during that entire span).  I enjoy narcotics.  When I actually feel the high of narcotics, it’s a high that I find quite wonderful.   However, despite a complete lack of judgement about other peoples’ drug use, I’ve always been a bit of a puritan myself.

For the last couple of months I have managed to mostly ignore the pain during the day and take a small amount of narcotic in the evening/night to make sure that it doesn’t effect my sleep.  This week that changed.  I spent several days in bed.. in pain..  unable to do any work.  I fell into a bit of a hole.  Chronic pain is different than acute pain.  It can consume you.  Like depression, or nausea, it can become the only thing.

On Thursday, after a long conversation with Special Ed, I decided to try to get ahead of the pain.  I took rather more than I felt willing to, and went to gamble some one pocket with John Smith.  (after a several week slump, I pulled myself together and beat him 6 games to 3! SOMETHING seemed to be working).   So.  I’m relenting a little.  I’m realizing that the pain I’m experiencing is serious enough that I DO need to stay ahead of it.  This is a lot to accept in a situation where there’s a very good chance, if not a certainty, that the pain is going to continue to get worse.  I am not dealing with post surgical pain that is likely to go away as I heal.  I am dealing with pain caused by the progression of terminal illness.

Intellectually, I don’t mind the idea of dieing with a considerable addiction.  I understand that for what remains of my life, I’m of much more use to the people around me if I am not in that deep hole of chronic pain.  I just need to get the inner puritan to relax a little.  Perhaps it is just accepting that this is happening that is hard.  Having to deal with increasing physical pain and accept the compromises that entails, somehow parallels the emotional/spiritual/intellectual struggle of accepting the reality that I am dieing.

On that cheery note, I am going to head out the shop and work on the UTA so that there’s an outside chance I’ll get to RIDE the damn thing before I feel to unwell to.

(I feel that I should add, I’m doing very well now that it is under control.  On thursday I beat up on my good friend John Smith – he gives me considerable weight- and took his money (or maybe just took some of MY money back), made myself a nice dinner of duck and shishito peppers (?), had a good night of sleep, and have been staying ahead of the pain since.  When you ARE ahead of the pain you don’t need to take as much medication to stay there as you do to GET ahead, if you see what I mean.  I have been mostly NOT in bed.  I have been in the shop and working happily.  You should not worry about me.  My state of mind is good.  Cheerful.  Productive.  I’ve just had to make a bit of an adjustment.)

(I feel I should also say that speed plays a roll, and we’ll talk about that next time.)

I HAVE BECOME AWARE OF YOUR SITUATION

PLEASE USE THESE FUNDS AS YOU PLEASE

ALL THE BEST

The return address on the envelope was my own.  Very clever.  The first name was just an initial, and the second name I didn’t recognize.  A strange and beautiful piece of correspondence.

There has been bread from a baker friend in NH.

There has been Whiskey from all over creation.    I am not joking.  Whether delivered by hand or sent in the mail, we have not had to buy bourbon around here for months!  Which is impressive considering the rate at which it is consumed.    An embarrassment of bourbon.  (say that out loud..  it’s really satisfying.)

My great friend and riding partner Saint Georges recently sold one of his paintings and had the buyer paypal me the money so that the raw materials for the UTA would not come out of my pocket. It was important to him that the bike be entirely payed for.

A gigantic check from my cousins with the instructions that Hill and I should be spending some vacation time on the massage table.

A family discount and memory upgrade on a new laptop from another cousin.

I can do this all day, I swear.   There have even been donations through a donation button that Megan Ann set up on the blog 4 years ago, when I was first diagnosed and we were feeling the pinch.. (we have now disabled it..    my gratitude, however, to those of you who sleuth-ed it out!).

I stopped at the desk to talk with the manager the last time I went to the pool hall to gamble some one pocket with John Smith (his real name).

“Hey..  I just wanted to clear something up.  The last bunch of times I’ve come in, I haven’t paid for table time..”

“yup”

“So that’s the deal?  I just don’t pay here?”

“Yup..  That’s right.  Enjoy it!”

I have never been particularly good at asking for help or accepting it even, really.   Lately you’re not giving me much choice.  It is a strange feeling to be the focus of so much generosity.  I’m at a bit of a loss for words.  Thank you all.

Last night while I was cooking dinner Dale showed up at my door.  “special delivery!”  Dale works at the local bike shop, and the UPS guy was feeling lazy -  said, “you know that bike guy, right?  Do you mind taking this to him?”

Hans Dampfs!!!   From Schwalbe.  Thank you Schwalbe!!  Pretty excited about these tires.  I think they’ll fit the character and design of the bike perfectly.

I must say it’s a thrill to have all this beautiful gear showing up day by day.  It’s really time to get MYSELF in gear and build this new frame!!

Added to the list of sponsors for this bike, though, is my friend Simon Arthur, the man in charge at Big Blue Saw.  He’ll be donating some specially designed water jet cut 4130 parts that will make the bottom bracket area just a little more graceful and a little stiffer than the protoTA.   BUT, I only sent him the designs wednesday, so I may have to wait a little while before I can start!

I haven’t been feeling perfect lately.  I’ve had a cold, and I think that’s winding its way down, but there’s something else.  I’m having some abdominal discomfort, and it’s impossible not to believe that I’m FEELING the tumors.  It could be that it’s psychosomatic..  could be that the pain is in my head.  But then again, pain is always in your head!  My sciatic pain is mostly under control.  I’ve found a dose of gabapentin (seizure medication that they discovered can really help with neuropathy and nerve pain) that seems to be working most of the time, with no side effects.  The pain that I’ve always referred to as “cancer pain” persists.  Strange phantom pain in tissue that I no longer even have!  Usually there at a low level, and sometimes quite acute.  But there are some new ones now.

Whether or not these new pains are REAL and are caused by growing tumors, I’m being forced to realize that much more of this is probably coming.  It’s a very strange feeling to know you’ve got something growing  inside you that WILL take your life.  That how it’s going to happen is entirely uncertain.  Will it be that the tumors in my liver grow to the point that liver function shuts down?  Maybe tumors in my lung?  Grossest of all, the tumor in the mesentery could end up causing a bowel obstruction and I could go very quickly and without glamor!

At any rate, the best pain killer I’ve found is distraction.   To be excited about something.  To be busy working on something.  That’s good medicine!  (bourbon and narcotics help a lot too).  But I’m not blowing smoke when I say that building this bike, and doing so with the support of such a big chunk of the bike industry, is really helping to maintain my quality of life.   Special heartfelt thanks to everyone involved.

Yesterday I woke up feeling pretty crummy.  Sore throat, not cancer.   It seems to be hanging right on.  I have a busy couple of days of riding coming up tomorrow and monday, so I decided that I would rest yesterday.  Arnold and I will ride soon!   SO.  Not much of a day for the Proto tight ass, but it WAS a big day for the ULTIMATE TIGHT ASS!

Just to be clear for those of you who aren’t grasping all the details..  The bike that I just finished building is a prototype frame that I built just to test out geometry.  The parts hanging from it are parts that my brother and our friend Todd scraped together, just so that I could try the thing out.  To decide if I even liked the concept!  This bike will be my brother’s as soon as the ULTIMATE tight ass is done.

The parts for the UTA are almost entirely being donated by the companies that make them, and yesterday a lot fell into place.

First an XX1 drivetrain arrived from SRAM.  Whoa.  Very cool.  The cassette is bigger than my head!

Then, as the day was winding down, I got word from both Enve and Formula, and they are both ALL IN, and that pretty well completes the build!

XX1 trigger shift drive train

Enve AM rims

Industry Nine classic hubs

Enve seat post, stem, and riser bars

Chris King head set and bottom bracket

Schwalbe Hans Dampf tires

AND Formula T1 brakes

(Discussions are ongoing about the fork, but one way or another, it will almost certainly be a 130mm travel Revelation XX)

I’m pretty over the moon.  I think that this bike will be something REALLY special and the support and generosity that exist in this industry once again leave me speechless.

Thank you thank you TO ALL companies involved.  We’re doing something really cool here.  Thank you as well, once again, to Anvil Bikeworks for donating the 142 x 12 dummy axle, and the disk tab fixtures!

Now I just need to build the frame!  (true temper OX platinum pipes..  figured I’d go with U.S. made wherever it made sense to!)

Still a few items to line up before I start building the frame.   In the meantime, I’ll be riding the protoTA and making sure I’ve got the design dialed in.  And when I’m not riding, I’ll be working on finishing up a few customer bikes that have languished for the last couple of months since I got that weird news in Pleasantville.  Just trying to pack it all in.  Feeling a little bitter that I have a cold!  Not enough to have terminal cancer?!    Say it with me..   “I don’t have TIME for this!!”  It has become like a tourettic tick for me.  I mumble it all day.   I can’t remember who brought it to my attention, but I love it so much-  Einstein pointed out that the only reason for Time was so that everything didn’t happen at once! They don’t call him a genius for nothing!  These days I sort of DO feel as though everything is happening at once.  And I’m having a great time, but boy does it ever tire me out!

Off to the shop!

Big love.

I realized yesterday just how thin a thread I’m hanging from*.   I was standing in the Graham Hill parking lot, 20 feet from the beginning of the trails, with a pile of disorganized prototype bike at my feet.  The bike was upside down, the back wheel was off, and the entire contents of my back pack were strewn around the scene.  It was when I realized the spare tube I had with me had a big gash in it, that something snapped.  I had a minor meltdown.  A semi controlled melt down.  I looked around for something to break, and ended up just throwing my hand pump at the ground.  Twice.  For emphasis.

I’m trying to figure out the right way to tell this story without boring the non bikers to tears with technical talk.  I woke up yesterday morning with a sore throat, feeling crappy and in pain.  The following day (today) promised to be gross and wet and sleeting (and it is).  The trails have been wet and muddy and I hadn’t yet gotten a chance to actually RIDE the prototype Tight Ass that I finished over the weekend up in Vermont with the parts that Zach and Todd put together (not a shabby build in the end!).  I realized that I had a one day window before the trails got WORSE and I’d have to wait a few MORE days for things to dry out.   “I don’t have time for this,” I thought, and decided that I should pull on some tights and get on the train.  I headed up to Pleasantville station (you remember pleasantville..  shudder), and rode the mile and a half to the Graham Hill parking lot.  On the way, I noted that my seat wasn’t quite high enough, and that my rear tire felt a little low.  Rather than ride straight into the woods, I decided to pause in the parking lot and tune up the prototype.   The seat was no problem, of course.

I am running my tires tubeless on this bike.  For you non bikers, that’s the same way car tires work.  The tire just makes a seal against the rim and the air stays in.  If the pressure goes low enough, though, the seal can break (particularly if your rims are all dented up), and to get the tire to seal again you need a pretty impressive blast of air.

As I attached my little hand pump to the valve to top up the tire, it made a sisssing sound and before I even realized what had happened I had a flat that I was going to need an air compressor to remedy.  “well..  Shit.  Guess I’ll have to throw a tube in there…”  I’ve already described how that went.  No patch kit.  No compressor.  No EXTRA extra tube.  No other people, or even their cars in the parking lot with me.  No immediate solution.   “I don’t have time for this..”

I did the only thing I could.  I started walking the mile and a half back to the train station in my cycling shoes, pushing a yet untested bike with a flat tire.  Never even got it into the woods.  Unbelievable.  I held out SOME hope that maybe a local gas station would have a shraeder to presta adapter and that their compressor would be able to bail me out.  This day HAD to be saved.  I just wasn’t really getting my head around the notion that I had lost.  That I had tried and lost..  that I was headed home, STILL without having actually ridden this bike..  that the next day was going to be crappy..  that I needed to start working on the REAL one, but needed to test this one out first..  That I had spent $20 on a round trip to nowhere..  Etc.   Plod. plod. plod. “fuck. fuck. fuck. I don’t have time for this..”

“Can I help you somehow?”

I looked up and there he was!  Arnold!  (except I didn’t know that was his name yet..)

He was on a road bike, with a back pack that had a pair of suede dress shoes strapped to it, wearing a helmet with a head lamp on it (?)

“Not unless you have a 29er tube.”

“nope,”  He started digging around in his saddle bag as though maybe one could be hiding in there.

“Cool bike!  What is it?”  I noticed that he DID have some co2 cartridges.  We tried one, and it didn’t quite have the oomph to re-seat the tire.

“Well, I’m a frame builder..  It’s one of mine.  This one is actually a prototype..”

I started telling him the story.  When I got to the part about being pretty sick, something changed in his face.

“I was just riding to my girl friend’s place.  We were going to hang out.  Nothing planned.  I can come back with a car!”

“Oh come on.  Don’t be silly.  Sometimes it’s just not meant to be.  If I had an adapter, I could probably take care of it at a gas station..”

“Oh.  Here.  I have one.  Take mine!”   Of course you have one, I thought.  What are you some sort of angel?

He left me with his adapter, and got back on his bike “yeah, I’m on the way..  I just stopped to help out another cyclist. I’ll be…”   He trailed out of hearing.

My brother called.

“How is it!!!??”

“I don’t know.”

I explained what was going on.

“you don’t have TIME for this!!!!”

“Right.  I know.”

“But seriously, this can’t happen!  You have to have an adventure today!!”

“Yeah!  right!  I have a feeling that it’s going to be dark by the time I get home.”

I got to the gas station, got some quarters from the attendant,  put the adapter on the valve, and dropped my money into the machine.  It whimpered into action, and I knew I was nowhere.  It didn’t stop me from putting another fifty cents in when the time ran out, though.

I tried right?  Nothing to do for it but head back to the pleasantville station (two strikes now, pleasantville).

“Did it work?!”

I turned around and there was Arnold!  With a car.  Nooo shit..

“I told my lady the story in about two minutes..   We’re going to do whatever it takes.  She agreed..  you HAVE to ride today!”

Arnold drove me three miles out of town to a bike shop, where Manuel put a little extra sealant in my rear tire and popped it back onto the rim.  No problem.

“Y tu?  De donde eres?”

“De aquí!  Pero hace vente años, yo vivia en El Salvador por cinco o seis meses.”

“Pues, aprendiste hablar para sobrevivir”

“Si!  Claro.  Estaba viviendo con los guerilleros!  Habia que aprender!”

“El Salvador is a tough place, man.. “  He turned to Arnold, “this guy is a tough guy, I can tell!”

I bought a 29er tube with no hole in it just to be safe.

Arnold packed me back into his car and delivered me back to the parking lot at Graham Hill, the whole time trying to figure out how quickly he could get his hands on a mountain bike so that he could ride with me (!  He had called ahead to the bike shop to see if they rented.  Unfortunately he had just sold his own, to put together the money for something with dual suspension).

“Is there nothing to be done?  I mean I can’t get on a bike and ride it across the country or something?”

“To save me?”

“Yeah!”

“I’m afraid not.”

This guy was obviously an angel.  We have plans to ride on friday if it seems that the trails have dried up enough.

Arnold.  Thank you.  Yesterday could have been a total loss, and not even a good story.   It could have been the day that pushed me over the edge into a pretty depressed and listless state, instead I got in a great ride, met a new friend and riding partner, and have a good story to tell!

As soon as I got the bike into the woods, I knew there was something very right about it.  It is so nimble compared to the longer wheel base of the double boinger that I’ve been riding.  It feels light and responsive.  The front end is easy to get off the ground and yet doesn’t seem to skip around when you’re climbing.  Unlike a dual suspension bike, getting out of the saddle on a climb DOES something for you.  The slacker than XC head tube makes it feel fun and stable on decents, with no fear of going over the bars.  It’s an all around fun all mountain hard tail.  Not sure that I’d change a thing.  I’m going to get a little input from some other riders that I trust before I commit, but I think I’ve landed on the right bike on the first try!  It’s a thoroughbred.  Maybe a thoroughbred goat.

Today I’ll make some phone calls to see if I can nail down the details of the build for the Ultimate Tight Ass.  I will update you as things fall into place.

To date:  Schwalbe has donated tires.  Industry Nine has donated hubs.  Sram has donated an XX1 drive train (and maybe a fork?).  Chris King has donated a head set and a bottom bracket.  (Don Ferris of Anvil sent me a 142 x 12 dummy axle with an invoice that said $0.00.  Thank you Don.  You’ve been a big support over the years!) Still waiting to hear on rims, cockpit, and brakes.   It’s all getting pretty exciting.  True Temper OX platinum tubes arrived yesterday.  I guess I’ll be headed back into the shop before too long!

I’m still trying to figure out just which cancer research fund the final sale of this bike will go to.   (there, I’ve done it again! *)  Those of you who have ideas about this, please feel free to chime in.

Fast boy OUT.

* From is a preposition.  I know that.  I used to be able to recite all the propositions in the english language alphabetically.   Not kidding.  “aboard about above across after against.. ” etc.   Anyway.  “from” is on there.  I think it’s around number 34.   You’re not supposed to end sentences with prepositions, as we know from the punchline, “Ok..  Where’s the library at, asshole!?” At any rate that’s what most of us remember learning.  But I’ve done it.  It just sounds better sometimes.  I learned, or was maybe reminded, just now by the internet that in fact you CAN.  It is when the sentence is incomplete without the preposition that you are allowed.  For instance, “I realized yesterday just how thin a thread I’m hanging, ” isn’t a complete sentence..  or actually, never mind, it IS.  But it means something else entirely.   For those of you who feel uptight about this, I offer you the alternate and I believe far clunkier, first sentence.  “I realized yesterday, from just how thin a thread I am hanging.”

Yesterday finally, Hill and Special Ed and I made our way back to the doc.

I spent most of the day in the shop working on the prototype fasst (tight ass) bike.  I’m hustling to get the frame done in time to take it up to Vermont this weekend where Zach and Todd are waiting with parts to hang from it.  My appointment was 3:20, and at 2:59 I was still holding a hot torch brazing on housing tie downs.

I didn’t bother to change clothes.  I decided that if I showed up in my work boots covered in flux it would help send the message that I was far too busy for this shit!  (cancer. treatment.)

Ed had a bit of a mechanical on the way there, and had to peel off to the local bike shop because none of us had a multi tool.  I checked in at the desk at 3:20 on the nose, while Hill finished locking up the bikes.

“Beata, that’s a beautiful name.  Where are you from?”

“Poland..  you say it exactly right..”

Beata walked us down the hall towards an exam room.

“Zaufaj mi, jestem doktorem!”

“Wow!  How do you know Polish?  You say that with no accent!   Are you really a doctor?”

“No.  And it’s the only thing I can say in polish.  Except some swear words.”

My doctor has pretty blue eyes.  Usually there’s a significant portion of white showing above the iris.  He looks as though he’s had a LOT of coffee, but without seeming at all nervous.  Wide eyed, but mysteriously calm.  I’d like to know what he’s taking.

He did the normal updating of my profile.

“Are you still taking the gabapentin?”

“Yes.  2400mg per day.  It seems to be working on the sciatic pain.  At any rate, I notice when I DON’T take it.”

“Good.  Are you taking anything else?”

“I’m sometimes taking clonazepam to insure good sleep.  I’m experimenting with amphetamine to counteract listlessness.  And I’m taking tylenol 3 to help with pain.”

“Bourbon!”  Special Ed chimed in.

“Ok.  Is it working?”

“It seems to be.”

I reported that we had been to another doctor for a second opinion, and that it had been just like his.

“Irinotican?”

“Yup.  with either Avastin or Erbitux.”

“So.  What do you want to do?”

” . .  Nothing at all.”

He didn’t blink or stop smiling.

“Ok.”

He needed no explanation and I felt intense relief.

We discussed clinical trials, and the various palliative chemotherapy drugs that I could take.  He made it quite clear that these were things that I could try or not, and could stop at any time if I did try.  He also made it quite clear that I would have to fire him for him to stop being my doctor.  That the decisions were up to me, and that he was there to advise.

I still haven’t found the time or the words to write an essay here about this decision.  Perhaps if my doctor doesn’t need to hear a rationale, then neither do you.  Maybe you already get it.  Or perhaps I can give it to you in pieces.

In general lately, I’m finding that there aren’t enough hours in the day.

Yesterday while I was working in the shop I had a moment of real sadness.  I was working well.  Things were making sense.  I was having no trouble solving fabrication puzzles.  I was enjoying myself.   I was building a beautiful bike.

“Shit.  I’m just getting good at this.”

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.