Month: February 2013

“no joke”  was the response I was looking at on my phone to a text I had sent Hillary a few minutes before.   I had asked her if she was playing a practical joke on me.  I was looking at two neat little bundles of spokes that she had produced from her bag before leaving for the the morning.  There were supposed to be three.  It would have been a pretty funny joke, had it been one, because it was already a bit of story at THAT point..  My good friend Torsten, who kindly offered to build these wheels for me had miscalculated the spoke length, because he was working with the schematics for an earlier version of the I9 classic hubs.  Naturally the guys at I9 had sent me their very latest version of the hubs, but the schematics weren’t up yet.  Just getting the first round of spokes had taken some calling around.  At any rate, if the wheels were going to get done in time we were going to need different spokes, and those spokes were not going to have time to get to us in the mail.  Luckily, NYC velo had what we needed.  Hill and I had swung in quickly to pick them up on our way to a nice romantic dinner.  As we walked from the shop to the restaurant, hill had offered to carry the spokes for me because she had a bag and I didn’t.  Well.  That fucking bag ATE some of the spokes.  So it was friday morning, I hadn’t started actually sticking any tubes together yet, my brother was on his way down from VT to hang out with me in the shop for the day while I plowed ahead on the bike, and I was trying to figure out what exactly to say to the guys at NYC velo about having fed a third of the spokes they sold me to my wife’s handbag.

“Hi.  Yeah.  This is Ezra.  I was there last night to pick up some spokes.  I didn’t by some chance leave any on the counter when I left, did I? …  No  ..   ok.  Well.  I’m going to need some more, I guess…   yup…  right..   I’m going to send my friend Torsten down to get them.  He’s a big tall Swede..  Ok  Thanks.”

Honestly, that’s sort of how the whole thing had been going.  Things just not really falling into place as gracefully as I would hope.  Murphy’s law was in full effect.  I had shrugged off a UPS door tag that I got on friday for a package arriving from Chris King.   “Well, I won’t have any use for that King stuff until Monday, anyway,” I thought.  So I nearly had a nervous breakdown on Sunday morning when MySam said something about Monday being president’s day.  Luckily for me, UPS doesn’t take presidents seriously enough to take the day off!  A few times though I had asked myself, “what’s the rush? Finish it when you get back from Europe..  don’t force things.”  BUT I knew perfectly well that two weeks from now when I get back from Europe, everyone would still be suffering from such a NAHBS hangover that forcing people to look at another outrageously appointed custom bike would be like handing someone a martini the morning after they’ve gone on a bender, instead of a nice cup of coffee.

In the end, it did all come together.  Monday morning I got up early to braze on the housing/hose tie downs and to ream and slit the seat tube.  Then I set Sam up strap polishing the frame to get it ready for Patina (Sam admits that he has a few slightly obsessive tendencies..  He strap polishes bikes like no-one’s business.  This is something I wish I had discovered years ago, but then, I didn’t know Sam years ago) and I headed out on the nose bike to find Bobby, my UPS man.   Seth Rosko was riding up from the lower east side with a reamer for that soup can of a head tube, Dale Lord was reading the instructions for the XX1 drive train just to see if there was anything peculiar about it (besides the obvious!), and Torsten was on his way over to take pictures of the whole event.  Saint Georges was the only one with any bad news..  It was looking like the snow just really hadn’t melted in the woods, and the ride report indicated that going out there wasn’t worth the time.  That wound up being just fine.  We didn’t finish putting the bike together until around 5:00 and by then everyone was ready to do something else entirely.

The bike needs a little tuning.  Hydraulic hose needs to be cut down, saddle adjusted..  But the quick spin around the park that I did take on it was a magic carpet ride.  I’ll give a full ride report when I return.  In the mean time, a special thank you to everyone who helped out – Both those who donated the parts, and those who helped in the final push to get all those parts hung from the frame.  I think it’s a pretty special beast.   Full gallery of photos here.

For those of you just joining us:  I’ve got a pretty nasty case of cancer.  Looks like I’m not going to live all that long.  Riding bikes in the woods has been one of the things I’ve really turned to in the last little while to stay calm and cool.  All the parts for this bike were donated by the companies that make them.  There’s a full list here.  When I’m no longer able to ride the thing, I will auction it off to the highest bidder, and the proceeds will go to help cancer research.  Hopefully, I’ll get a season or two of riding it before that happens!

NOW..  Off to wander around Rome for the day!  Meeting up with Glen and Hedi tonight for his Rome show, and hopping in a car with them tomorrow to go to Florence.  It’s a hard hard life.

Big love.

(this post was written under duress..  please forgive typos and generally bad writing).

 

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.