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.

The latest



The island of Manhattan does not run North-South.  Not remotely, in fact.  The “southern” tip of the island points southwest, or maybe a little more accurately, south-southwest.  As a matter of convenience we still say that streets run east and west and avenues north and south.  Our house is on the “west” side of Manhattan ave.  So our front windows face east (in fact east-southeast) and our back windows face west (in fact west-northwest).  In the fall, as the sun begins to rise farther and farther south on the horizon, there comes a time when it begins to reflect off the windows of the apartment building across the courtyard straight into the windows at the back of our house, most especially the windows of the kitchen, so that early in the morning when you go down to make coffee, the kitchen is lit up as bright as day.   The mechanics of this will be perfectly obvious to some of you..  the rest will just have to take my word for it.  The point is that this morning, for the first time in what feels like WEEKS, I was the one to wake up first and go down to make coffee, not Hillary, and I noticed the phenomenon and was reminded both how wonderful it is, AND that I hadn’t been down to the kitchen before about 10:30 or 11:00 since sometime well before day light savings.

Historically, I have always woken up before Hill and been the one to go downstairs and make coffee.  I have the pictures to prove it!  But over the last bunch of years it has gone in waves.  I would say that still the majority of the time it has been me, but those days may finally be gone.

These days I typically get up an average of 10 times a night to pee.  Yup.  The last time probably around 4 or 4:30, at which point I fall asleep and finally get into some really deep sleep, and am startled awake when Hill arrives with the coffee at 8:30 or 9:00.  This last week that was certainly the pattern.  The pattern was also that I would sit up to drink my coffee having trouble keeping my eyes open, and having trouble finding a comfortable position with one or another of my chronic pains flaring up.  Yesterday, after finishing my coffee, in search of a comfortable position, I found myself lying down again and suddenly waking up to discover that it was noon.

I know this is the sort of thing that I’m supposed to be embracing.  Rest, Ezra, rest.  But, when, every other day, I need to begin irrigating at 3:30 or so in order for it NOT to interfere with making dinner, that makes for a pretty short day.  Back when I had a nine hour workday, I found myself wishing that there where more hours in the day..   And now I’ve got a three and a half hour workday!!!  It may sound as though I’m complaining.  That’s because I AM!!!  This shit SUCKS!

On Monday I woke up with sever pain in the front of my right leg.  I may have mentioned it here before.  Similar to the development of the left leg sciatica, this began as a deep dull ache in the right buttock and then began to radiate down, this time, the FRONT of my right leg.  Sounds strange..  unless you’re a PT, or a neurosurgeon, in which case you say something like, “yup, sounds like impingement on nerve root 4 or 5 or maybe both.”  The kind of freaky thing here is that the impingement is almost certainly being caused by the growth of a tumor, and NOT some sort of mechanical problem that could be corrected by the right stretching.  The other freaky thing is that nerve pain has the distinction of not responding much to narcotics.  The point of the story was that I had to email Jeremiah on Monday afternoon to tell him that we’d better plan to postpone our Tuesday match.  That if he was free on Friday, perhaps we could play then.  On Friday morning I had to email him again, this time to say, “better luck next week.”  By five in the afternoon each day, I have been feeling so exhausted – so DONE, that the notion of being down town when that happens and then having to find my way home through rush hour is just too overwhelming.  I have become quite delicate and it doesn’t suit me.

When I turned down treatment a year ago (almost!..), I had it in my head that I would just accept the medication necessary to keep me comfortable and gracefully slip away.  That without the side effects of treatment to worry about, I’d be fine.  It turns out that the disease itself has rather a number of side effects!!  Don’t get me wrong.. I don’t for a second, second guess my decision.  I believe wholeheartedly that if I’d gone the treatment route, I’d be dead already AND that I probably would have spent the winter and spring leading up to my demise in terrible discomfort, instead of tearing it up in the woods on the UTA.  But, there’s no question that this cancer is catching up with me.

My pelvic bowl and abdomen are filling up with tumors.  The whole area just feels packed in a way that it did not used to.  They press on things in a weird way and cause strange sensations.  Whether pain is under control or not, there are other issues.  The peeing is one example.  I’m not sure what the mechanics of it are, but at times I feel the urge to pee every five minutes or so..  so convincingly that I fear I’ll wet my pants.  When I get to the bathroom, very little happens.  I have to coax out a little dribble..  and then five minutes later repeat the process.  Other times expecting that routine, I’ll get to the toilet and out it comes like a fire-hose.  Occasionally, mid fire-hose, I’ll suddenly get an erection!  Which is hilarious, of course.  About half of you reading this know exactly how tricky it is to pee into a toilet with an erection, and the other half will just have to imagine it..  I’ve taken to jumping into the bathtub/shower where erect peeing does less damage!  (Pete Shumlin called me on the phone the other day and I found myself telling him about this phenomenon, wondering to myself, “why am I telling the governor of Vermont about peeing in the bathtub with an erection,” but he was cracking up, so I guess it was fine).  It’s also a bit of a liability when I’m out and about.  The urge can come upon me in an instant.  No warning at all.  So far I have not wet my pants in public, but I’ve come very very close.

Pooping is even more complicated.

The degree to which my abdomen is packed can make me feel stuffed even when I’m quite hungry.

My sense of smell and taste (closely related, of course), have started to behave strangely.  Things that I used to love not tasting very good to me anymore (strong beer for example..  meanwhile, I NEVER used to like sweet things, and now I find myself craving them).  Hill has had to stop using certain lotions because the scent is so strong and medicinal to me.

I can go on and on.  The biggest thing, though, is just the exhaustion.  I start the day with the best intentions.. with goals and ambition, but as the day progresses, I can feel that every little thing I do is chipping away at my day’s allotment of energy – Like playing some sort of dungeons and dragons type video game where you watch your bar of life force at the top of the screen getting smaller and smaller – until finally I’ve got nothing left.  I simply need to stop.   I have never had a day’s allotment of energy before.  This is foreign to me.  I’ve always been a bit of an energizer bunny.  The quality of this exhaustion is desperate.  When it finishes me off, it is with a quality of desperation that I need my bedroom..  need to lie down..  need the comfort and safety of the familiar.

I don’t mean for this to be a bummer of a post.  It has been a minute since I’ve written anything here and this morning I finally had the energy to!  As has always been the goal of this blog, I am simply documenting the progression of this disease as honestly, and with as much detail as I am able.  The truth is that the DISEASE is a bummer.  Particularly in what I imagine are these final stages.  It has left me feeling frustrated as hell lately.  There is so much in this life of mine that I adore.  So much joy that I get out of creation..  out of working in the shop, making photographs, cooking and sharing good meals.  Lately I feel as though I’m getting robbed of that joy because of simple exhaustion.  Sadly I don’t get the same reward and feeling of joy out of lying on my back in bed all day (with frequent trips to the bathroom for half-assed peeing).

But today is a good one.  I was up early for a change, it’s an off day for irrigation, and as soon as I finish this post (how on earth has it gotten to be 2:00 already!!!) I’m headed out to the shop to glue up stool legs, and play on the lathe!

Fast Boy OUT!

(Big big love).



Just to bring you up to speed!





Several weeks ago I had a miserable period of three days of not being able to get out of bed.  The day before I had gone for a bike ride.  A rather easy bike ride in the scheme of things.  Coincidence, I felt nearly positive.  It had to be the flu or something like that.  A flu that had just happened to hit me the day after I went out riding.  It certainly FELT like the flu.  Achy joints, sore muscles, inability it stay awake.   Hill and I had plans to go to Vermont to catch the height of the fall, but my 3 days in bed were serious enough, that is to say that I became so totally useless that, the idea of planning a trip when we didn’t know how I’d be feeling seemed crazy.  To be away from hospice care, to be away from the comforts of our own home.  Not a great idea.

A week later I stepped out onto the stoop on the way down to the shop for the first time in a while, and there was something about the air..  it was crisp and cool.  It reminded me that it was fall..  It reminded me that I probably had just one last chance to see Vermont in the fall.  I was feeling fine!  So why not.  By then of course, Hill was up to her ears in meetings and couldn’t come with me.  She cleared me to go on my own, though, and I did.  A spontaneous run up to Vermont.  Just two nights.  Zoom.  Leaving town was a comedy of errors.  One missed train after another.  Finally settling for a rental car from Stamford at twice the price of the the rental from New Haven, simply to get on the road!!  And still, I didn’t make it to my brother’s place until it was time to make them some dinner, when my intention had been to arrive at around noon.  It wasn’t much of a visit.. just one full day there.. but enough to remember Vermont fall.  A favorite place and time of year for me for so many years.  While I was there I received an unexpected and beautiful piece of correspondence.  Encouraged undoubtedly by a mutual friend, and yet still wildly special.  I am very seldom star struck, but this stopped me in my tracks.

“For Ezra.

With Love,

[soundcloud url=”″ width=”100%” height=”166″ iframe=”true” /]

At any rate.  That knocked me off my feet, and off to bed I went.
I hadn’t even taken a mountain bike with me to Vermont..  Somewhere in the back of my head I was a little gun shy about the notion of hopping back on a bike after ending up in bed for three days afterwards the last time.  Was still feeling fairly sure that it was a coincidence, but wasn’t eager to test it.  On the way back to the city the next day I checked in with Hill on the phone..  At some point in the conversation she said, “you want to go riding this weekend?”  I realized, first, that I had created a monster..  that she had the bug..  and second, that at some point, I was going to have to test this thing..  was going to have to PROVE that it had been a coincidence, and that riding was still going to be lots of fun for me this fall.

So Hill and I planned a little ride.  On Saturday we piled the bikes into the zippycar and went up to sprain ridge park.  Climbing onto the bike felt amazing.  I ALWAYS feel good when I climb on that thing.  Amazing.  Like it was made for me.  We had a wonderful fall ride.  Dry and crisp.  Hill rode very well.  Her second crack at sprain, and she was much less tentative.   Rolling right into and over things.  I was suitably impressed.  After about an hour and 15 we had worked our way back to the parking lot, and just to be on the careful side I called it a ride.   It had been mellow and slow.  I had never really exerted myself.  Nothing that my body could possibly complain about the next day.  We packed back in the car and got back to the city in plenty of time to return it.  The rest of the day was mellow and productive.  I cleaned the shop!  Made it immaculate.  The first step towards launching into whatever is to come next.  Ate dinner and went off to bed.

I woke up on Sunday morning, and low and behold!!!   FELT FINE!!!!!  NO PROBLEMO!!!   CURSE BROKEN!!   This was very good news, of course.  This meant that it had NOT been the riding before..  it HAD been some coincidental nonsense..  flu.. cancer.. something!  But not bike riding.  I was so excited.  Called my brother to let him know..  He’s nursing a torn up shoulder that’s going to keep him off a mountain bike until something is done about it, but he feigned some excitement for me.  Watched some football with Special Ed..  Cooked some dinner..  By the time I was done cooking, though, I realized that I was really pretty tired, and would sort of rather head off to bed, than stick around for the party to begin.

Wouldn’t I like a bowl of my stew before I left?

No thank you, I wasn’t really all that hungry..  just wanted  to get a nice early night, and tackle a few things in the shop the next day.

So off I went.  Got to bed nice and early.

Monday morning, Hill brought me coffee in bed.  It was about 8:30.  It took me a moment to sit up.. my body was aching a bit.  I got propped up though and opened my laptop.  Flipped to email.  And then dozed off while I pretended to drink coffee and read..  My head nodding.. finally giving in, but masterfully not spilling my coffee..



“You look like maybe you’re sleeping”

“hmm..  yeah”

“Maybe you should put your coffee down and just go back to bed for a while.”

I tried getting through another email or two, but it was impossible.  Heavy eyelids winning.  So I put down my coffee.  Put down the lap top.  Snuggled back into the covers, and went back to sleep for a little while.  When I woke up it was 2 in the afternoon!!  I wasn’t done yet, though..   I found some sort of movie to watch, but mostly slept through it.  When it was done I allowed myself to fall well and truly back to sleep.  When I woke up it was dark..  Hill was sitting across the room (she had been gone at a meeting when I went to sleep), in a little pool of light working at her computer.  I had no idea what time or day it was.  Complete disorientation.  “It’s 8 o’clock baby, would you like to think about some dinner?”  Holy SHIT!  How had an entire day gone by!?  We ate some food and went back to bed.  I didn’t wake up the next day until 10:00.

Anyway.  The short version is that I ended up spending my three days in bed just like before.  I just had a day of feeling fine first.  It’s a little strange, but I’m afraid that the exertion of riding IS the culprit.  Hard to believe..   (although, not hard for my hospice nurse to believe.. “You’re VERY sick, Ezra.  I know that’s easy to forget because you’re so busy and active, but it’s the truth! It isn’t a surprise to ME that you go out on a crazy hard mountain bike ride and it tires your body out.”   “But it wasn’t a crazy hard mountain bike ride.. it was eeeaaasyy.”   “Not for a normal person it wouldn’t be..  And not for a very sick YOU it isn’t..” )  Oh.  Ok.  So that’s how it’s going to be.

This leaves me pretty depressed.  Still in disbelief a little.  Could it be a coincidence both times?  I mean, if it was a coincidence this time, what was the culprit?  Another flu?  Why the day off in between?  Why does it feel so GOOD to be on the bike if it’s wearing me out as much as it proves to be?  A lot of it doesn’t makes sense to me (unless I remember that I’ve already outlived some expectations by 5 months or so!), but I’m definitely not jumping at the opportunity to test it again.  I mean, maybe eventually…  Clear out a few days, expect to be bedridden, and go for a ride.  Three’s the charm, right?

Sorry.  This has been a pretty long winded way of telling a pretty short story.  Hard for me to even describe the place that I go during these three day periods.  The depths of exhaustion.  Unable to respond to email, unable to work on photos..  It’s not as though it’s nice time in bed for watching movies and cruising the internet.. I am without coherence when this happens.  Can. Not. Function.  Not a state that I’m eager to invite.  Three days of it is too steep a price to pay for barely over an hour of very tame mountain biking.

It’s so hard to acknowledge that the disease is making these changes in me.  It’s so discouraging.  And yet, perfectly natural.  Right?  I mean..  To be expected.  I DO have stage 4 fucking cancer.  Whether I look like it or act like it apparently doesn’t change the fact.  What a pisser.


Fast Boy Out.

(feeling fine today..  need to strike while the irons are hot.)