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Big Bad Bobby Earle.



Ok.  It’s been more than a minute since I’ve managed a post.  As usual, lots to say, and too many words to say it all..  or something.   I’m working on a post with the necessary medical updates, but it is coming rather slowly, and in the mean time, there is something more time sensitive that I need to share.  Many of you have written comments or emails reassuring me that I don’t NEED to write.  That I should only write if and when it is of benefit to me in some way.  Still others have written to say, “please please..  it doesn’t have to be a lot..  just anything you think of.  Put it up there!”

While I appreciate the sentiment of both, neither really hits its head on the nail of the issue at hand (so to speak).  At some point along the line, enough people started to follow this blog that I began to feel a certain debt of gratitude, and with it a duty to fulfill what for me had become an unspoken mission statement:   To faithfully report the progress of this brutal disease and to do so with as much honesty as I could muster.  To put it all out in the open without getting caught up in how embarrassing, graphic, or scary elements of it might be.

SO!  I’ve got an overdue post in the works that I’ve been having a pretty difficult time getting onto the page.  Occasionally, though, this blog serves a different master.  Occasionally, (for shame, Ezra!) I take advantage of the fact that the blog gets a rather surprising number of views to put something out there that I think deserves the attention.  In this case, that something is the ongoing story of my good friend Bobby Earle O’Brien and his 2014 Boston Marathon bid.

To Recap.  Bobby Earle (who some of you will remember from a rather extraordinary act of generosity a little over a year ago wherein he donated a NEW Industry 9 29er wheelset for the UTA, just in case the corporate sponsors didn’t come through in time) decided, despite swearing that the 2009 marathon would be his last, that he would run 2014 anyway.  WHY!?  I’ll let him explain.

Here’s where the comedy of errors begins, however.  During a workout in early February, Bobby sustained some sort of mysterious injury in his left Quad region, had to stop the workout prematurely and wound up in a walk in clinic where he was handed some crutches but not given any kind of conclusive diagnosis.  When he did finally get to see his orthopaedic surgeon (the man has had quite a number of surgeries) and the appropriate tests were done, the conclusion was a stress reaction..  Something that would have become a full blown stress fracture if he had continued to work out on that unlucky day.  The recovery was going to entail 4 weeks of rest.  The good news was that he had already done 2 of these weeks just waiting around for the diagnosis, the bad news, of course, was that this ultimately would mean one month of training taken out of what was less than a 3 month preparation to begin with!  The two weeks passed and he eased back into training only to break a toe a couple of weeks later.

Miraculously, though, on March 29th, Bobby was able to do the final long training run (22 miles) with the rest of the Dana Farber Challenge crew (this is mystifying to me).  And since then he has been enjoying taper time (A term that will mean something to runners out there perhaps).  Again best to let Bobby describe that AND the long training run himself.

Due to some of the medical issues that I’ve been having trouble getting on the page, I have been unable to cheer lead quite as I had intended as Bobby’s preparations went along, and now we’re finding ourselves just a week away from the marathon with a fair amount of fundraising left to do.  Bobby sailed past the Dana Farber Challenge fundraising goal, but his own goal was quite a bit more ambitious.  And since Bobby is running this thing in my honor, I feel some responsibility to help plug for the cause.  Please check out his blog for the marathon, and even more important at this late stage, check out his fundraising page!!

Thank you all for any help you’re able to give, and watch here for an update coming soon, explaining where things stand for me these days.

As always, thank you for following along, and big love to you all.


A day of rest




I am determined not to let so much time pass between posts.  Simply because it is much easier for me to stay on top of it if I don’t.  Yesterday I had one of those strange days, they’ve happened before, where I just never really wake up.  I woke up this morning to have coffee, and I had essentially slept for 28 or 29 hours straight.  Or, I guess I should qualify that just a little..  I had slept for 28 or more of the last 33 hours.  I woke up yesterday and had coffee as usual, immediately irrigated, went downstairs to make a couple of pieces of toast, spoke with hill for a moment, and then went back up to the bedroom to answer a few emails (that all took a couple of hours, and to be honest, I slept through some of that irrigation time).  I’m not sure what time it was when I woke up to realize that I was slumped over to one side sitting on the bed and that the computer had long since turned off and fallen off my lap to the other side.  One of those completely uncomfortable positions that you only find yourself in when you are BEYOND tired.   SO.  I put the computer away and lay down.

Woke for a text from my mother.  “I’m at fairway, would you like a baked good of some kind?”

“Why yes!”

Woke some time later for the delivery of said baked good, but fell back to sleep without eating it.

Woke to see Hillary, a vision, “I’m leaving now,  Study group.  Remember to take your 4:00 medication.”

“Whoa, really?  Already?  Don’t go!”

“Baby..   ”

Woke to see Hillary.  Back again!  “What would you like to do about dinner?  Your mom said that they had leftover potato leak soup..”

“Sounds great!”

Woke to Hill sitting by the bed “Dinner’s ready, shall I bring it up to you, or would you like to come down?”

“I can come down.”

I made my way down stairs for just the second time of the day, and found that it was just me and Hill for dinner.  A beautifully set table.  Salad, warm baguette, bowls of soup.  Simple and delightful.  Cleaned up the kitchen and ate some ice cream straight from the container.  Went back upstairs, fed the dog, brushed my teeth, climbed BACK in bed.  Watched an episode of The Good Wife with Hill and went back to sleep.  Slept through the night without incident (except the 4:00 alarm that Hill sets for my medication)..

I can’t explain it.  I don’t know what makes it happen.  But every once in a while, my body demands it.  It simply must have a day of sleeping and it takes it.  No change in the drug regimen.  No previous day full of exhausting behavior.  Just a day of rest.



Every once in a while lately, I walk past a mirror and realize that I don’t recognize myself.  I’ve developed steroid face!  It’s really unfair.  I feel like hell.  I feel like I’m wasting away.  I should look gaunt! Not hale and hearty!  So.  Here you are.  A little photo montage of fat face Ezra to make up for no pictures of me at all for such a stretch.




































I’ve been in this position before.  A lot happens in life and I don’t find the time or energy to keep up with it here on the blog, and before I know it, I have a simply daunting amount to share and the task of writing a post feels nearly impossible.  So I don’t write, and in the relentless way that it does, time keeps passing, and oddly, things keep happening and naturally that task of writing a little blog post gets even harder.  Recently I have begun to get a lot of emails asking how I’m doing.. pointing out that it’s been a long time since I’ve made a post.. asking for a quick update.  From my perspective, though, a QUICK update feels simply impossible.  The only thing to do for it is to bite down hard and climb out in whatever haphazard way I can.

On the 11th in Sochi, my cousin Sophie Caldwell tangled skis and fell in the final of the women’s individual sprint event and ended up finishing 6th, and last..  6th and last OF the final 6..  That is to say 6th (and far from last) overall in the event.  Or, to put an even finer point on it, THE BEST FINISH EVER IN THE OLYMPICS BY ANY U.S. WOMAN!!!!  YES, I’m proud.  Way to go, Sophie!!  I hope you’re feeling pretty pleased with yourself.  You certainly deserve to!  (My brother Zach is over there as well wax testing and coaching and generally working his ass off from dawn ’til dusk so that the athletes can have as good a time as possible.  And last but far from least, our friend Noah Hoffman is over there racing and blogging about every detail!  GO NOAH!  We’re all very excited to see you race the 50k!)

A little later, on the same day back here in these United States, my good pal Bobby Earle O’Brien got some very good news from his orthopedic surgeon.  And I’ll quote, “It’s probably a whole lot of nothing.”  I met Bobby about a year ago when I was building the UTA.  I was courting all of the corporate sponsors for the bike and everything was coming together nicely, but somewhere I must have mentioned that there might be a hold up in the availability of rims, or SOME such thing.  Bobby’s response was to donate a brand new, never used Industry Nine 29er wheelset.  Some of you who read this blog are bike nerds, and know exactly what that means, for the rest of you, I’ll just say that this set of wheels retails for a good deal more than most people would feel it was sensible to spend on a complete bicycle and that he was donating these wheels with the full understanding, in fact with the intention, that they would be back up wheels, in case the rims or whatever it was didn’t come through in time (In time for what, I’m not sure..  In time for the bike to be assembled and ridden at its earliest possible convenience I guess?)

I only mention the circumstances of our first getting to know each other because it says something of his astonishing generosity, which is currently at play again, and according to his orthopedic surgeon will NOT be derailed by a mysterious injury he sustained during a training session last week.

Here’s the deal.  Despite declaring, after running Boston’s 2009 marathon, that it would be his last, Bobby has decided to do one more.  Why?  Well.  Apparently because of me.  He is running it as a member of the Dana-Farber Marathon Challenge team (all money goes to fund basic cancer research), which commits him to raising at least $4k, but his own rather ambitious goal is to break the $10k mark.  If there is one thing that keeps coming back and surprising me over the course of my relationship with this disease, it is the overwhelming generosity of perfect strangers.

Please please help him reach his goal if you are able.  Make him a friend on face place and follow along on his blog as he gets ready to run ONE MORE marathon.

So there’s the last couple of days.  I made a stab at a blog post last week too, and only managed the following.

Today we had heavy wet snow in NYC.  I was working in the shop and heard the scrape scraping of snow shoveling and went up to the sidewalk to find Hill working away.  She was clearing the snow almost as fast as it was piling up.  It was beautiful out, in the way that snow in the city can be for the first hour or so.  And Hill was beautiful wearing a totally strange and silly white monster hat that Andrew brought back from Japan a few weeks ago where he’d been doing publicity for the walking dead.  I think he must have received the hat in a gift basket or something. It has that unmistakeable quality of cute that the Japanese have practically trademarked.  Somehow the hat is perfect on Hill, and is especially perfect on Hill as she shovels away trying to keep up with the snow coming down.

I went inside to grab my Xpan.  A perfect opportunity to finish up a roll of color film that was clogging up the works!  The Xpan is a manual focus rangefinder, which will mean something to some of you and not to others.  The significance here is that it is a manual focus camera of a sort that is somewhat difficult to focus until you get used to it.  Used to it or not, though, as I tried to get Hill’s silly monster hat in focus while she moved around the sidewalk shoveling, I realized that I had lost so much grip strength and dexterity in that left hand that I simply couldn’t do it!  Between not being able to FEEL the focus ring, and not having the strength to make it move once I’d found it, I was simply out of luck.   GAH!!!  I have a friend named Colton who I know only through the internet, who is a photographer (among other things)  with ALS (Lou Gehrig’s). He has lost a LOT of physical control at this point.  Right hand and left.  His whole body in fact, is in on the act.  He has a magnificent collection of cameras most of which he can’t entirely use without help.  He remains passionate about shooting though.  AND, he finds a way.  Most often, it seems, with our mutual friend, John Thomas who drives him to good places to shoot, helps him get film in the cameras, sets up tripods, you name it.  I am amazed by Colton’s resolve. As much as John’s generosity may make it possible at times, it is Colton’s WILLINGNESS to accept that help and much further REQUEST it that feel so foreign and impressive to me.  It was thinking of Colton in that moment of blinding frustration and rage, that kept me from simply hurling my Xpan at the ground.  Thank you Colton (and thank you JET).  In fairness, it was a little chilly out and I had no glove on.   For that left hand to be cold DOES exasperate the issue a little.  But the deterioration is real.

It’s just a week and a bit later now, but it turns out that the frustration I felt at not being able to focus that camera was just the tip of the iceberg.  The deterioration in my hand since that day has been so startlingly fast that it has left my head spinning.  From one day to the next I lose CHUNKS of basic function.  So fast that it takes me by surprise.  The other day I broke into tears in the kitchen because I had to hand the pepper grinder to Hill, suddenly unable to use it. Simply not enough grip strength to hold the body of the grinder still while my right hand did the work.  “When the FUCK did this happen!!??  I could grind pepper yesterday!!

I could also pee like a big boy about a week ago, and now I’m resigned to peeing into a bag tied to my leg.  Just like that.  It’s just easier to go out into the world (or even just downstairs to make a cup of coffee) with an external catheter and a bag than it is to risk the anxiety of maybe having to find a couple of parked cars to dive between in order to suddenly pee (try finding parked cars in your kitchen while you’re making coffee!).  The notion that I’m just 40 years old and have had to simply accept that I am completely incontinent (and impotent),  is a reality that I’d never have imagined even just a couple of years ago.   You can throw a temper tantrum.  You can dig your heels in and refuse.  But what does it get you?  Wet pants.

Andrew had been stopping in for a long weekend to help assemble a 29er mountain bike that I helped him dream up.  Months before he had been visiting and had seen the UTA in the bike room and fallen in love.  He asked in an email a week or so later if I could send him a list of the parts that went on the UTA, and then perhaps if I could suggest a commercially available frame that would come closest to fitting the role.  Naturally I felt myself getting sucked in..  I mean, what sort of self respecting bike nerd doesn’t get sucked in to a project like that!  So I told him that I could do him one better.. Rather than simply giving him a list of parts and a recommendation on a frame, I’d assemble him a bike.  I’d go back to my pre-framebuilding days, and simply be a bike stylist!  Pick out all the parts and the frame to hang them from, and then spend a few fun hours in the bike room inserting tab A into slot B and hoping it all worked out.  Andrew was ecstatic.  He loved the idea.  But wanted to be sure that he was there for assembly, because he wanted to know all about tab A and slot B.  I thought this was very sensible and we were off and running.  Lots of emails back and forth about parts and frames and their provenance.

Ultimately the weekend that he was able to stop in and play bikes, turned out to be the SAME weekend that Alan McDermott (auction winner of the UTA) chose to come and pick it up!  Todd Miller, the PT from VT, volunteered to come down just to lend a hand (since already at that point my left hand was starting to show signs), and my beautiful wife, seeing which way the wind was blowing volunteered to spend the weekend at a professor’s empty apartment in order to get some work done on a paper and avoid playing host to a small international mountain bike festival!  That weekend turned out to be a lot of fun, but probably deserves its own blog post at some point soon.  It was a bittersweet moment to watch the UTA get packed up and leave.  To say goodbye to a bike that I had put so much design thought into, and that so many players in the industry had been so generous in making happen.  But, getting to hang out with Alan for a good chunk of the weekend and share a few meals made that changing of hands considerably easier.  The UTA has a good new Papa.




Too funny not to share.


I went back and read my last post and I’m amazed that it is even as coherent as it is.  I was sitting in the office writing that post, with fairly constant interruption..  from my step father, sitting in his rocking chair in my folks living room by the fireplace where we were watching the football game, wondering if he could fetch me a drink.. “No thanks, I’m fine for now.”  From Hill who was preparing a shopping list for the grocery store, but had in fact left for the store at least half an hour earlier.  There were other interruptions that I can’t remember now, all equally confusing in their quality of realism AND their obvious absurdity.  I was alone in the room.  The room was our office, and not my parents living room.  And yet I was having the most vivid interactions with people who weren’t there.  I was sleepy for sure.  Beginning to doze off, and yet these interactions didn’t have the quality of dreams.  I was AWAKE as they happened.. (but I just said I was beginning to doze off..?)  Crap.  It’s happening to me again.  I’m going to go get another cup of coffee.  I’d like to get this post out so I can get to the shop and play on my milling machine!  And WHY on earth does Hill have a black eye??  And WHAT is funny about it???

Ok.  I have coffee.

After finishing that post, or ending it at any rate, I went into the bedroom to have a nap.  Hill intercepted me on the way there, “Are you all right, baby!?”  I had sent her a text a little earlier that said “I’m hallucinating a little.  You’re at Fairway, right?”

“Yeah.  I’m fine, I think, I just need to have a rest.”  I wandered into the bedroom and she followed me.  It wasn’t until she was lying down on the bed that I noticed, or maybe she pointed out, that she had a black eye, or a quickly developing one anyway.  She had slipped on the ice on the way home from the grocery store and fallen on her face..  Her hands have been asked where they were at the time, and they’re pleading the 5th (in her pockets keeping warm, I suspect).

We both fell asleep.

At some point during the nap I was woken up by the washing machine trying to shake itself  to pieces and take most of the surrounding cabinetry with it.  An unbalanced load, causing the machine to shift back forth up down 3 or 4 inches at a time (a problem that has been there for a while, but keeps getting worse).  Real or hallucination.  I can’t be sure, but I replaced the washing machine this week just in case.

I went back to sleep.  The next time I woke up it was dark.  I had no idea what day or time it was.  I also had no idea why I was soaking wet.  I figured that out quickly enough, though and thought, “shit shit, I hope I haven’t peed all over Hill!!”  That’s when I noticed that Hill wasn’t in the bed..   and that I hadn’t been IN the bed either really, rather on top of it.  AND I was fully dressed (and fully soaked in urine..   as was the bed under me).  AHA!  This was a nap!  It all started to come back to me.

Now.  This was not a first (but certainly a most dramatic).  For the last week or so, something strange had been happening to me in the night.  I’d wake up to go pee, sometimes with some urgency, other times not as much, but I’d go rushing to the bathroom to pee.  Sometimes a dribble, sometimes a fire hose.  I’d head back to bed and climb in only to discover that there was a wet spot in the bed!  WTF!  Truly confusing.  I came to the conclusion that the effort of sitting up maybe was forcing a little out as I left the bed, and I was finding the puddle when I returned.  Hmm.  Or maybe I was just wetting the bed and not realizing it until I was awake enough to.  THIS, though.  This was a new level.  I had woken up in a true puddle of piss.

Curiously, in the last week or so I’d also been noticing that even while I was awake, my body wasn’t really sending my brain a very strong signal telling me it was time to pee.  Almost like I’d just have this back of the head notion that it MIGHT be time, and run to the bathroom JUST in time to avoid total disaster.

Peeing has been strange for quite some time now.  First radiation.  Then surgeries.  Damaged nerves.  All to be expected.  Now add growing tumors, and all bets are off.  But up until this last week it had all been manageable.  Suddenly now, I was wetting the bed, AND not being able to trust that while I was awake I’d get the message in time, or at all!  In the somewhat vain hope that this might be the side effect of some combination of medications that I was on, I wrote to my doc.

This was her response.

It sounds like neurogenic bladder with atonia of the bladder sphincter, which is an expected development of the sacral plexopathy resulting from pelvic tumor involvement. Unfortunately it is not a side effect of any of the medications you are taking, but rather an indication of disease progression in the pelvis.

There are no pharmacological solutions for it.
At night you can use a Texas (condom catheter) to avoid getting wet and to be able to sleep. During the day, unless you do self catheterization several times a day, to avoid allowing the bladder to fill to a level that triggers spontaneous emptying, there is not much else you can do. There are pull-ups for adults that are not as undignifying as the diapers. They are thinner and unnoticeable under your pants.

The other not so convenient solution is to have an indwelling catheter attached to a leg bag that would constantly drain the urine out of the bladder.

I wept.

Not so much because of the new practical considerations to be taken on, but because once again I was having symptoms which simply pointed to the progression of the disease.  First the arm (doing worse all the time, thanks for asking), and now, a week later, my penis!  Et tu?

I had a moment of feeling completely overwhelmed by the whole thing.  I feel as though I’ve taken a lot on over the last 5 years (I say “I,” when obviously I should say “we.”  First the we that is me and Hill..  then the we that is me and my family/close friends..  all those who are affected by these changes. Perhaps you can simply read that as implied).  I’ve had to take a lot on.  I’ve had to make major adjustments.  In the past, though, those major adjustments, like learning to shit in a bag for instance, have come with the promise of survival!  Do this, and you will probably have a normally long life.  This new stuff is just the opposite.  “Here you go.. here’s a sucky new thing to get used to.. AND the sucky new thing is a good sign that the disease is progressing rapidly in your body!  AND the sucky new thing is likely to get worse not better”

“Oh!!   Cool!   Thanks!”  I don’t know how to keep that up.   So I wept instead.

My mother picked up some pull ups for me at the drug store.  Putting one on reminded me a little of the first time I ever put on a dance belt..  Story for another time.  I was in the bathroom trying to figure the fucking thing out… Hill in bed already waiting for me to come and watch our TV show.  Everything about it was gross.  Synthetic, bulky, poorly designed..  Not to mention, a FUCKING DIAPER!!!!   I wept.   I don’t even wear underwear.  I sure as shit wasn’t going to wear this.  I ripped it off.  Weeping.

It wasn’t until the next day that I got the ray of sunshine I needed.  I had told my hospice nurse that the texas/condom catheter sounded like something I’d like to try, and she had ordered some up.  The whole thing had enough of a Rube Goldberg appeal to it that I couldn’t resist.  The packaging alone had me grinning.  I mean “Freedom Cath.”  Yeeeeee haw!!!!   Rebel yell.  And the illustrations for how to?  I can’t NOT share.


That’s the shape of things gang.   I’m hoping that these signs that disease is progressing rapidly slow down a little!  I could use a break, AND I’ve already got the message!  “yeah!  I heard!  progressing.  rapidly.  got it.”

Night time is sorted out.  It’s a little baroque, but the freedom cath works for night time.  I’m still working on the right daytime solution (I’m not looking for a flood of advice here gang..  “he said ‘Flood.’  te heeee!”  I’m sure that I’ll find the right solution for me).  It IS a real limitation.  Last night I walked the 5 blocks to the store and on the way home had to dive between a couple of parked cars to avoid wetting myself.  Hardly had any warning at all.  It makes a trip down to the pool hall an impossibility.  Of course, I can’t feel half of my bridge hand anyway.

On a brighter note, I’m having a ball in the shop.  Finding ways to get the most out of that left hand, and allowing the right hand and the machines to do the rest.  I’m making a clamping fixture for making picture frames that will really be the art piece on its own.  I may not even make any frames.  We’ll see.






20 and 14




SO.   My birthday passed without event.  Then, Special Ed’s and the coinciding darkest day of the year.  Big Sam’s birthday (may he rest peacefully) and the coinciding coming of the new year!  All without event.  That is to say, I’m still here!

Just before christmas we had a nice visit from our good friend Todd (which included a viewing of quicksilver..  aahhhhh..   too good).  We had a very nice christmas.  Brother Zach rolled through with nephew Gunnar.  We ate some beautiful racks of lamb.  The day after christmas, Matt arrived.  Ever steady Matt.  Poor guy is going to go broke if I don’t die soon!!  These flights from Japan MUST be adding up!  He has been a great sport.  Just helping me out in the shop.  Helping with grocery shopping.. cooking.. you name it.

I finished up the stools and a batch of wooden crates for Hill.  Just a whole mess of cedar crates for her to use as modular furniture around the house.. bed side tables, book shelves, stools, whatever.

The next little project that I’m gearing up for is making frames for photographs.  I’ve been going back through all my old negatives looking to see what I missed.  Looking to find those photos that, for whatever reason, didn’t catch my eye then, but maybe do now!  Looking for treasure.  Also just archiving – making good scans of the photos I know I like and storing them away on drives with some redundancy.  In this process, though, I’m trying to identify those images that I think really deserve to be printed.  Because of questions of resolution, and of the way the eye perceives reflected light versus projected light, photographs simply look different in print.  The quality of ink jet printing has gotten to a point that makes it possible to have a GREAT deal of control at home without a dark room and to produce images that are truly stunning.  I really love this analog to digital process.  Shooting on film, developing at home, scanning to digital, and then digitally printing, after magically getting rid of whatever dust you might like to, and making whatever other adjustments to the contrast and color balance feel necessary.

But then what!?  Then you’ve got a print on a piece of paper and you do what with it?  Put it on the fridge with a magnet, I guess?

I’ve decided to try to go a step farther.  I’ve decided to pick out individual photos that I’ve taken that I’m proud of and actually give some thought to how I think they’d best be displayed.  Then make an appropriate frame, and mat if a mat is called for, and complete a few pieces!  Maybe just to be scattered around among family members, or shoved in boxes and stored safely in the basement where maybe gunnar will discover them in 15 or 20 years.  Who knows.  But.  I’ve got the urge to do it.

Naturally with me, however, nothing is ever all that simple, and the gears begin to turn and before you know it I’m placing orders for bars of aluminum and brass and bits of threaded rod, and tooling, because if you’re going to make some frames, you should probably re-invent the wheel entirely and come up with a universal fixture for putting them together, that in its own right will be a beautiful object, and take up whole lot of your time and creative energy.


Sadly there is a wrinkle.  Starting sometime a little bit before my birthday, I began to notice that my left pinky and ring finger were a little tingly and numb.

“shit”  I cataloged it.  The next time that Dr. Dana asked me if I had developed any numbness or tingling I’d have to report that, why yes!, I did have some.

Over the course of a few weeks the numbness got worse. This is to say that it got more intense and covered a bigger area of my hand and lower arm.  I also began to loose a little strength in the hand.   I first noticed when I was unable to hold a piece of sand paper onto a sanding block (that pinky and ring finger simply unwilling to comply)..  and then was unable to squeeze tooth paste..   unable to turn the key to open the front door.     Last night I was unable to clip my finger nails, and was nearly unable to zip up my own shirt.

Along with this numbness and loss in use has come, you guessed it!, a great deal of pain.  Starting from the back of the elbow/base of the triceps, the pain radiates up the back of the arm, around the shoulder and under the scapula to the spine.

Now.  I have well documented herniated disks at just the right level to be causing this.  I also have a PT from VT who comes to visit me on weekends that he’s able, and he gave me a solid work over recently, and we were able to determine together that there was a clear impingement of the C8 nerve root and yet could not find a single position or stretch that offered any relief.

I had a fairly intense spike in that particular pain a few weeks ago, and Dana came by for a visit.  It took her very little time to give me some pretty disturbing news.  She didn’t think the impingement was coming from the disk level at all, but somewhere a little ways away from the spine.

For some time now on that left side, I have had clustered in that soft notch created by the clavicle, a few very hard swollen lymph nodes (I noticed these months ago, and my hospice nurse pointed out that our bodies are loaded with lymph nodes and that they can get swollen for any number of reasons..)  It is Dana’s feeling that these are the tip of the ice berg so to speak..  there is a whole chain of lymph nodes running up from the presumed center of the action.  These new symptoms are a good indication that these nodes are involved, and swollen, and that it is probably THEM pressing on the C8 nerve root.

There are a couple of reasons that this isn’t really great news.  A couple of reasons that we wish it was actually a herniated disk.  The first is that if a disk was causing the problem, it is likely that some corrective exercises could clear it up.  (it is also likely that the steroids I’m on would have diminished any inflammation in that area to a degree that I wouldn’t be feeling symptoms to begin with!).  But the  big piece of bad new is that this is a good indication that the cancer is migrating north.  Towards my brain pan.   Also that given the speed with which these symptoms are developing, that things seem to be moving pretty quickly.

The loss of use of my hand is one of the most disturbing developments so far.  I have had to get used to shitting in a bag,  and not being able to ride a bike (even if that turned out to be the ranting of a mad man the first time around), and the fact that my penis won’t get hard, and yet not being able to clip my own fingernails last night nearly destroyed me.  For it to come at a time when I have so many projects that I want to do in the shops..     Well.   I guess when wouldn’t it?  Right?  I’m still managing to function out there.


I’m sorry.  I’m unable to stay awake.  I’m going to go ahead and post this as it is.  I need to go and have a rest.  Please pardon any incoherence.   Perhaps I’ll read it over when I wake up..









What an amazing night.  What a party.  I had no idea I knew that many people..  Had even less idea that there were that many people that I really like and wanted to see!  Like a big warm embrace, the whole thing.

I have a lot to say about the whole thing, but the purpose for this quick post is simple.  Just to bring your attention to the sale page for that one lonely photo, as promised.  I will leave sales for it open for the day, or until sales reach a number that is all I feel I can handle.  I’ll get them all printed and packaged and shipped by tomorrow, and barring a blizzard somewhere, everyone should get theirs in time to give it as a x-mas gift, or simply hang onto it for themselves!

Thank you all so much for your birthday wishes.  Now that it’s over, I feel slightly freed!  It’s as though THAT had been some sort of deadline..  Another of Rasputin or Nostradamus’ predictions of the end.. that simply came and went without anything happening.  I woke up this morning..  everything seems to be in order.. I’m still here.  SO.  I guess I’ll carry on!

Please enjoy that photo.  And enjoy these last few days before the TRUE winter solstice..  On the 21st.  After that, the days start getting longer again (but don’t be fooled..  officially, that is just the BEGINNING of winter.  The cold part is yet to come!)

Sale page is here.  (click on the word “here” for those of you who are new to this, and you will be transported!)

Thank you all.

Continued Big Love.

From 309 to 4 and “oh!”.. Out of the frying pan and into the fire!

Today is my 40th birthday.  A birthday that I was NOT guaranteed to celebrate.  I just looked back in this blog to the several entries around my 309th birthday and things were frankly quite grim!  We were JUST getting the news of my recurrence and learning what we could about the reality of that situation.  The doctors that we saw all agreed that without treatment I had 6 – X months to live, where X ranged from 8 to 12.  “Fine, I’ll take 12!” I said, and refused treatment.  So here we are 12 months later, and there is no question that I am a sick man..  I take a fistful of pills three times a day in order to keep pain at bay, to stay upright when I want to be upright, and to stay asleep when that’s my preference..  But I am NOT dead.  I don’t look dead.. I don’t behave dead.. and for the most part I don’t feel dead.

Furthermore, I did NOT spend the last year making trips to the doctors office for treatment that would have left me feeling terrible with no promise of results.  I think back and realize that I packed more living into the last year than I’ve managed to fit into any other single year of my life.*

I began writing in the last post about my long conditioned feelings about this time of year.  About the sense of finality that comes with the holidays for me.  For quite a while now my birthday has felt like the horizon.  When I made it to the scary six month mark that they warned me about the natural next landmark was this birthday. I felt as though it would be quite fitting and natural to diminish during the fall, with the failing light, and die right around my birthday, proving to the docs that I had outlived all but their very most optimistic predictions.  But here we are, and I’m feeling fine!  Ok.  Well.  That’s a patent lie.  I don’t feel fine, exactly.  I feel like hell a lot of the time.  Most recently, I’ve started to loose function in my left hand and forearm. Numbness, nerve pain, loss of strength and control, etc… BUT what I mean is that I feel miles and miles from dead.  This is going to take a serious mental adjustment.  A new horizon!  I’m not sure what that should be.  Hillary’s birthday is March 2nd..  But that would be a really crummy birthday present.  I would love to see Nova Scotia again..  The earliest we ever really go up there is May.  Is that too long?  Another 6 months?

At any rate..  The whole thing leaves me feeling a bit untethered.  I had a good reference point.  I had a script that made some sense, but my body did not cooperate.  Now that this birthday has come, I’m feeling a bit at sea.  But that’s not a terrible way to feel  (better than dead, I’m thinking..).

I have been shooting a lot with the hasselblad Xpan that I bought recently.  I love the format.  I love the narrative quality of such a wide frame.  I had a roll of Ilford fp4 in it last that I shot more or less in two bursts.  One burst of shots of Hill working on the day bed in our bedroom, while Putney slept snuggled up to her legs.  And one burst of Monkey Business shots of me and Glen goofing around up on the roof.  I took one lonely shot between those two bursts, though.  I was taking the camera down to the shop with me one day, just in case, and I stepped out the door and saw the fresh snow.  I pulled the camera out just to see what I could frame there from the top of the stoop..  I was checking the light.. the aperture.. figuring out where to focus.  I put the camera up to my face and was looking around for a photograph.  I suddenly became aware that someone was walking down the sidewalk and was slowing down because I was taking a picture.  So without even thinking I just pulled the trigger, and dropped the camera from my face.

“What are you doing?”  It was Hillary.  I didn’t even know that she was out..  I thought she was behind me, back in the house.  Suddenly I got very flustered..  I mean, what WAS I doing?  I hadn’t really had time to see if there was a picture there.

“Ah..  Just taking pictures of this white on white!”

“What white on white?”

I started looking around for something obvious to point to and came up short.  It had just been an impulse, and I wasn’t really sure that it had been a good impulse.

“I’m just headed down to the shop to work on stools,” I said.

That shot turned out to be my favorite shot on the role, though.  I actually find it quite moving.  Maybe you’ll see it too, maybe not.  I printed up a copy this morning, and it’s stunning.  It was my intention to put it up for sale today maybe as a last minute x-mas present for someone..   I’ve run out of time, though.  I need to take a shower and get dressed and head over to my birthday party.  BUT, maybe I’ll put it up tomorrow morning.  Just that print.  Glen and Hill and Putney are all very cute, but for me, that lonely photo is the most interesting.  I’ll make it available just in the US, and if I ship by friday, it should make it to you by x-mas.  Now.  I need to go to my party.  Fast Boy OUT!







*A partial list of things that spring to mind!

  • Built the UTA
  • Rode the UTA all around Westchester and Vermont
  • Traveled around Europe with Hill and Glen and Hedi
  • Took lots of photos, and sold lots of photos (and was stunned.. stopped in my tracks by your willingness to BUY my photos)
  • Made things in the shop that were NOT bikes (Pill flasks come to mind)
  • Invented the umami bomb (and cooked some pretty memorable sunday night dinners in the backyard)
  • Broke my arm and assumed that was the end of my bike riding career
  • Played lots of pool
  • Made several trips up to Vermont to spend time with my brothers and other Vermont pals
  • Got over the broken arm and rode bikes some more!
  • Showed bikes and photos at the first annual Bike Cult show in BKLYN at which I auctioned off the UTA and the Assless to raise a combined $15K for the home hospice program of the visiting nurse service of New York.
  • Cooked thanksgiving dinner
  • Crawled to the presumed finish line : My birthday! only to keep right on stumbling along..






Swifts for sale




Ok gang.   The time is here.   I’m putting the fast boy swifts on sale so that I can get them out the door (for those who order promptly) in time for christmas delivery.  One of these saddles would make a really beautiful gift, it has to be said.

An explanation, for those who missed it one way or another..   Last winter when I was building the UTA, Simon Firth (who builds custom bikes under the name Hanford Cycles, and is one half of the new and very cool Transport Cycles bike shop in Philadelphia, AND is the official Brooks repair man in the U.S.) took things into his own hands and contacted brooks on my behalf and had them donate a titanium brooks swift for the project.  Before sending it to me, he replaced one of the beautiful big round rivets on the saddle, with a heart shaped rivet.  The two of us liked this little touch so much, that we thought we should make it available to people in a limited run.  It has taken us a little while, but we finally did it this fall, and I’m finally getting around to selling them TODAY!

This IS a limited run in a number of ways.  There aren’t very many of these saddles.  We won’t be doing it again.  The saddles are only available in two of the three main colors that brooks uses (antique brown and black).  The saddles are only available in the steel rail version.  AND, we’re only offering swifts.  The swift is not the saddle for everyone.  (It IS the saddle for ME!  I have been riding a brooks swift for the last 12 years or so.  I own three of them (one in each color), and while I have had more than three bikes at various times over the last 12 years, I’ve never had more than three saddles..  like pedals, I just swap them around depending on what bike I want to ride).  Relative to most of Brooks’ other saddles, the swift is quite narrow (and light).  Depending on your anatomy, this will or won’t be comfortable.  Through all my trials and tribulations in the region of my whatsis, the swift has remained the saddle for me, but that means very little as to how it will feel for you!  All this to say:  PLEASE don’t buy one of these saddles on a whim – they are very nice saddles and there are very few of them, and I’d like them to go to people who will cherish them, and ride them for years and years as I have done with mine.

The jerseys were the fist thing that I offered up for sale that I didn’t actually make.  I WAS able to dictate most things about them, however, and in so doing control the outcome.  These saddles are a little different.  Simon did the original as a tribute of sorts..  a very loving gesture, I thought.  It was his idea, and his execution.  These saddles are no different.  In this case, I am simply the one bank-rolling the operation, and dealing with the sales and shipping.  It is a strange feeling for someone as controlling as ME to let go of the reins and just roll with it.  To allow someone else to make something that I am willing to call an official fast boy product!!  But these are simply beautiful.  You will love and cherish yours.  Each one is different, and there are very few of them.  If you end up with one, it is pretty unlikely that you’ll ever bump into someone ELSE with one!

I am limiting sales to the US, I’m sorry to announce.  International shipping and customs on these will be a hassle, and there are few enough to begin with that I’m eager to keep it simple.  I apologize.  (those of you living outside the US who REALLY want one, could always be clever and have it shipped to a friend IN the US and take it from there..  just sayin’)

OK.  At some point in the next little while, these will go live over at the for sale page of the fast boy cycles site.

Good luck!

an introduction (post will remain unwritten for now. feel free to imagine).




I grew up in rural Vermont on a dirt road..  in a part of the world where the changing of seasons is dramatic, and in a part of town where snowfall in the winter, and mud in the spring made a real difference in life.  In the dark part of the year (NOW), the sun would be low on the horizon as school let out and at least a couple of times each winter we’d have to carry the groceries the last half mile or so home, because the roads were impassible.  The fall, the first semester of school, always felt like a count down to christmas vacation.  A strange paradox.  Simultaneously depressing in the shortening of the days and the increasing cold, and exciting and beautiful, first in the glory of the fall, and then in the anticipation of snow and the snow days and sledding and skiing that came with it – a long winter vacation – my birthday (a week from yesterday..  I’ll be 40!) – christmas – new year’s eve.

For whatever reason, I always loved this time of year.  I relished the darkening of the world, I think mostly because of the things that we’d do to fend it off!  A cozy evening by the fireplace can only exist if it is horrible and dark and wet and cold outside.  Those short days would bring out a kind of closeness between people that didn’t exist in the warm parts of the year with those long days, when pick up soccer games started at 5 in the afternoon because there were still 4 hours of daylight left.

The birthdays in my family are laid out like a trail of breadcrumbs leading to that darkest time of the year, starting with Zach’s in late late July, my mom’s in September, Mary and Thomas’ in October and November respectively, (thanksgiving tucked in there.. always my favorite), and then my own and Special Ed’s just three days apart on the 18th and 21st of December (Ed’s falling, in fact, ON that shortest day).  Then there was christmas, which we DID continue to celebrate with the exchange of gifts until Thomas and Mary were grown and the family was more or less scattered around the globe and rarely all together at that time of year.  But growing up, it was something to look forward to!

All this to say that for me the fall, leading into the dark time of the year, was always an exciting build up, mimicking in the inverse the darkening of the days,  to that climax that was my birthday/the solstice/christmas (and then, of course, new year’s eve..  that last gasp.. a party for those who weren’t quite ready to stop celebrating.. coincidentally my dad, Bill Sam’s birthday).  But after that, it was really over.



In other important news:!  I guess it’s time to sell those fast boy swifts!

It strikes me that these things will make a really fabulous holiday gift (for yourself or someone else) and that it would be helpful of me to sell them in time that they might ship in time to make it to you for christmas.

SO.  I will work on the sale page for these this afternoon, and I’ll put them on sale sometime tomorrow morning.  Watch here and on faceplace for a link to the page.

Fast Boy Swifts!




Ok gang.  Here’s the story with the saddles.

When I was building the UTA I was approaching all the companies that make the components I MOST wanted on the bike.  I was asking these folks if they would donate the parts for a bike that would ultimately be auctioned off for a good cause.  You all know the story.  BUT I hadn’t bothered to ask Brooks, because I already had three ti swifts from back in the days when ti swifts went for $171 RETAIL!! (That will mean something to the real bike geeks among you).

This is where my friend Simon Firth (pictured above) enters the story.  Simon is THE official U.S. repair guy for Brooks.  Rather than sending your broken saddles to the U.K. to be fixed at Brooks, you send them to Simon, and he makes them good as new and sends them back to you.  So, he wrote to me and asked what I was doing for a saddle on the UTA.  I explained that I was going to use one of my old worn swifts.  He suggested that perhaps he should discuss it with brooks, and before I knew it, he had a donated ti railed Brooks Swift for the UTA.  THEN he asked if I’d like him to replace one of the rivets with a heart.  Naturally, I said “Hell YES!” and the first Fast Boy Swift was born.  We both thought it was such a cool thing that perhaps we should do a limited edition run of Fast Boy Swifts.  Even the name had a cool ring to it.

We both got busy with other things for a while.  I was caught up with various medical ups and downs..  and with selling photos.. and with preparing for the Bike Cult show in August.  And HE was caught up with opening up his store in Philadelphia! He and a friend opened up a very cool bike shop in Philly called Firth and Wilson Transport Cycles.  The shop specializes in bikes for transportation and car replacement in urban environments.  Very much like a bike shop would if I were to open it!  They sell bikes for personal transportation and an impressive range of cargo bikes.  A shop that is completely untouched by the Pro cycling world.  That is to say that they don’t sell bikes that people buy to exercise on, and while I have discovered the joys of recreational cycling in the last year or so, I think that there is a serious glut of bike shops that cater to the weekend warrior, man-dex wearing, exercise and thrill seeking types, and a distinct shortage of shops that really specialize in personal transportation..  and urban solutions for car free living.  I don’t particularly feel that these types of riding should stand in any sort of opposition to each other.  Truly, all kinds of bike riding are ok by me, and I have built bikes for ALL kinds of riding.  BUT it makes sense to me to have bike shops that specialize in certain areas and types of bicycle use since there ARE so many, and Simon and his pal David (the “Wilson” part of the equation) have managed to make a shop that offers a large range of bikes of a sort for which most bike shops currently don’t reserve very much floorspace.  Another particular distinction of the shop is that BOTH owners are custom bike builders, so if you’re looking for something a little more unique than what you see on the floor you can talk to the owners about something custom made.  Go check them out online, or if you’re in Philly swing by the shop!  Tell them that I sent you.

At any rate.  We were busy.  But finally about a month and a half ago, I ordered up 30 Swifts (steel railed to keep them affordable) half and half, black and antique brown, and asked Simon to do his magic and put hearts on their noses.  First I was asking you to wear my heart on your sleeve, and now I’m asking you to put my heart between your legs and go have some fun?  Yikes.

So, at some point soon I will do a sale on this limited run of 30 Fast Boy Swifts.  Not to be repeated.  Keep your eyes open on the FBC face place page, as well as this blog.  There WILL be some warning.


In other news..  Because of a rise in baseline discomfort (pain) over the last three weeks or so, my hospice team has raised my baseline again.  There is always a groggy day or so in the switch, but it seems to be working (yesterday I needed no breakthrough medication at all).  Twice now, I have ignored the signs of pain increasing too long and have ended up in a pain crisis, and both times it has taken several days to get it under control (and then another several days to recover from those several days, if you follow me..).  Both of those times, it has also meant several weeks of unexplained irritability leading up to the crisis.  Something that I’m more than happy to catch before it begins!  So.  I’m getting the hang of this.  Learning the signs.

I’m also slowly getting the hang of having less and less energy.  Finally giving in a little to relative inactivity (or what feels like it to me!).  I work in the shop for just two or three hours at a time, and then go scan film, or print photos, OR lie in bed and watch bad movies (I like to save the GOOD movies for times when Hill is available to watch with me..  So usually what I watch on my own is from the action/adventure section and if I’m lucky, involves some well choreographed violence).   It is actually time NOW for me to head out to the shop, so I don’t run out of time before a visit from the hospice massage therapist! Yup..  there ARE benefits to dying.  They are thin on the ground, but they’re there.


Big love.

Over and out.