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

 

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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!

 

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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

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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).

 

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Just to bring you up to speed!

 

 

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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,

Bill.”

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..

“Baby?”

“Yeah?”

“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.)

 

misadventures

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The other night Hill and I had a very nice little date.  That is to say that I didn’t cook dinner.  Instead we went out to eat and sat down at a table across from each other and talked.   We were married on a full moon, and it was always our idea that we would go on a date every full moon to celebrate our monthly anniversary.   It turned out that we sucked at it.  First we had to keep track of the full moons (I finally bought her a moon chart as a little birthday gift at some point), but even then it proved hard to do.  We used to joke that in our first two years of marriage we had managed to go out on our full moon date about 4 times.

Now that I’m quite a lot sicker, though, we’ve been going out to eat quite  a lot more.  Between the very nice people who have been sending us on our mystery dinners, and just a general level of fatigue at that time of day, a dinner out has become less of a strange occurrence.

We sat and we talked mostly about the various projects that hill is working on.  She’s up to her elbows.  The work she’s doing makes me very proud indeed, not to sound patronizing.  Most simply boiled down, the projects that she’s working on are advocacy/activism projects that center around guaranteeing housing for everyone by taking speculation out of the housing market, and ending discriminatory policing designed to intimidate and alienate people in their own communities.  It was an uplifting dinner.

I went home with something new in mind.  I decided that perhaps irrigating at night would be a good idea.  I mean why not?  If it’s taking so long, why not let it eat into my night instead of my day.  When I feel I’m mostly finished, just put on a bag and go to bed..  empty the bag in the morning once it’s collected any of the slow moving detritus and replace it with a little cap and get on with my life.  Irrigating can be a somewhat tiring process, and to have going off to bed as the prize instead of trying to start my day (already half gone), seemed very clever.

So when we got home, I set myself up in the bathroom..  I take my laptop with me so that I can watch netflix, or one pocket matches on youtube, or catch up on email.  I got all the paraphernalia lined up.  I weighed myself (always curious so see whether I gain or loose weight during irrigation..  think about that one for a moment).  And I got started.  I had eaten a pretty big dinner.  A burger with fries to be exact.  And I helped Hill finish off her mussels.  I filled myself up with water.. a little over a liter and a half.  Immediately I could feel a difference.  I had a very full belly, and now I had very full lower bowel as well.  My body was a little confused.  Clearly this stuff was supposed to find its way out, but WHICH stuff? and which WAY?  I had a moment of anxiety.   I have felt nauseated before during irrigation, but never worried about it too much.  This time I was a little worried.  Suddenly a wave passed over my body and on its own it inhaled in the way it does when getting ready to expel SOMETHING.  “oh christ,” I thought, “this is going to be bad.”  And then violently and without much warning I SNEEEZED three or four times.  What a relief.  My poor body was so totally confused about what it was supposed to be doing.  Meanwhile irrigation itself seemed to be progressing a little.. slowly..    a moment later I felt another wave of nausea and the need to expel.  No problem, I thought..  Another sudden deep breath in, two violent sneezes, and before I knew what was happening, I was vomiting..    Now pause for a moment to imagine this conundrum.   I was SITTING on the toilet.  Attached to my belly butt I had an irrigation sleeve (essentially a tube of plastic to guide things from said orifice to the toilet), which was currently in USE. AND I had a laptop computer sitting on a chair directly in front of the toilet.  I twisted myself into all sorts of contortions half standing to try to direct the vomit into the small area between my legs that gave access to the toilet.  Trying to miss the computer.. and the floor.. and anything really that might be hard to clean up later..  All at the cost of puking all over MYSELF!  After three or four waves of this I felt I was probably done.  Exhausted, I sat back down.  The front of me, particularly the.. um.. junk part of me, was covered with puke.  The fronts and insides of my thighs, my chest and stomach..  etc.  Now.  It would be nice if I could have just jumped straight into the shower and cleaned myself off, but let’s keep in mind that I had an irrigation sleeve attached to my stomach that was currently in use!

At any rate.  It was a clusterfuck.  An hour or so later when I felt I was more or less done, I showered (finally) and put on a bag, and went to bed.  A few times before I actually fell asleep, I had to get up and empty out the bag.  Eventually though, completely worn out, I fell asleep.  When I woke up in the morning, of course I had forgotten all about it.  I swung my legs over the side of the bed, and noticed that I had a bag attached to me that was full to bursting.  In fact, busting its seems..  Leaking out the sides..  It was a small miracle that I hadn’t rolled over during the night on to my stomach!  Can’t even imagine the mess that would have been!

So my day started with a sprint to the bathroom to remove and empty a bursting shit bag and to jump in the shower to clean shit off my elbow(?!).  I then put on a nice small cap, feeling confident that the ordeal was over..  not to need repeating for another 36 hours.  All’s well that ends well.

 

 

Recently I finished up and sold another run of pill flasks.  The final.  There will be no more.  I’m in the packaging stage.  I’m sending them in priority mail flat rate boxes.  These are available at your local post office for free!  It’s part of the service.  A good deal, really.

So the other day I went to the post office to pick up supplies.  I walked over to the kiosk with the flat rate boxes and envelopes, and pulled out every small flat rate box there was, and was on my way over to the inquiry window to explain that I had cleaned them out and in fact needed MORE, when I was met by a manager who had sprinted out of nowhere to meet me, saying, “OH, UH UH… You can’t do that!!!   You can’t take all those..   If you take all those, someone has to come out and refill this thing!!!”

(That must happen, occasionally..  I was thinking..  It IS someone’s job, right?  To keep the supplies topped up?).

“Well..  In fact, I need quite a lot more than this..”  I said.

Her eyes widened.

“How many you need?..     You can’t just take all these boxes from here..  This is for people who are going to ship this stuff TODAY!”  She was still stuck on the last part..

“Right..  Well.  I’m trying to ship today.  I’m going to need at least 50.”

“You’re going to ship 50?  Today!!?”

“I’m really hoping to.. 65 or so, in fact..  but I already have a few boxes at home..”  Here I was imagining that they’d be delighted that I was using their service.

She shook her head like I had just sworn in church, “mmmm mmmm…   You can’t have 50…   If you need that many you have to order them online, and we’ll bring them to your house.  Then you don’t even have to come in here..”

“OK..  that’s good to know for next time..  But you see, I’m trying to ship these today.  And here I am!  Can’t I just pick them up?”

“mmm mmmm….” again.  “You can have one package of them.  More than that you have to order online.”

She turned to the young woman working in the inquiry window that I’d been headed to initially when she had caught me red handed, and said “Get him ONE package..” and she turned and disappeared back into the bowels of the place.

The young woman at the inquiry window disappeared as well, and came back with a nice shrink wrapped package of small flat rate boxes.

“How many are in a package?”  I asked.

“25”

I hung my head..  “and that’s all I’m getting, huh?  I can’t get another package?”

She closed her eyes and shook her head, “she said one package..”   I could tell that what she meant was “Bitch is crazy!  I can’t stand working under her..  but if she sees me give you two packages, I will LOSE my job.”

“How about if I leave and come back in ten minutes or so,” I joked.

She just closed her eyes and shook her head again.  Not even a sign of a smile.  She looked tired.

“thank you, dear.”  I said, and turned to walk out.  On the way out I passed the kiosk, and considered grabbing everything in it and running, but I had a feeling I was being watched.

My father’s most withering insult for people was “no imagination..”  He would use it at times like this.

 

 

Many thanks to all of you who bought pill flasks.  It is a huge relief to have them out of my hands and into yours.  Please remember to give them a good wash out before you use them..  You’ll be doing the final step for me!

As soon as I’ve taken a proper inventory and built a page for them, Jerseys will be on sale.  They are Ibex long sleeve full zip merino wool cycling jerseys.  The perfect weight for fall cycling.  (just in time for Psycho-cross season).  The wool is grown and woven into fabric in New Zealand.  The Jerseys are sewn here in these united states..  in my home state of Vermont, in fact.   The embroidery as well.  This is the first thing that I’m offering on here that I haven’t made myself.   A bit of a break, I know, but a very very nice product, that I’m proud to be selling, and that I hope you’ll be proud to wear!

Thank you all for your continued support.   Now that the pill flasks are done, I can go out to the shop and just play!!  I’m going to carry these small flat rate boxes over to the post office to mail them (with some trepidation), and then head down to the shop.  Tonight is dinner out with Glen, who was hanging out with Mario Batali last week (as you do..) who invited him to eat at Babbo tonight.  So Glen, in turn, invited us to join in.  Should be a pretty fun night!

 

 

TGIM

 

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Yikes.  The last three days where a nightmare.  Feeling SO relieved that today is Monday!  Or maybe just that today is the day that I feel better than I HAVE been for the last three days.

A very nice bike ride with Hill and Sam on Thursday.   Before and after which we got some good Fast Boy Cycles jersey promo shots!  I got home from that ride feeling, at first, just that wonderful post ride endorphin driven high/tired.  As the day wore on, though, it turned into just plain old tired.  In the afternoon I went down to the pool hall to shoot for an hour or so, and to pick up some film that I had dropped off for processing .  A roll that I ran through the hasselblad in Glen’s hotel room.  (Also swung through little Korea on 32nd to pick up some groceries for dinner).  While I was out and about it started to really hit me.  I found myself nodding off at the pool hall.  I made it home, though.  I cooked dinner with MySam who wanted to learn to make one particular Thai dish that I often make (Sam did most of the work).  Was VERY happy to get to bed.

Friday morning is when the shit hit the fan so to speak.  A slow start to begin with.  I woke up late.  I was hurting everywhere.  But flu like, not really post ride like.  An irrigation morning.  But I didn’t get started until rather late.  Almost noon, if I remember.  It didn’t go well at all.  I filled myself up with LITERS of water and then just sat and waited.  Dozing off on the toilet between unproductive painful spasms..  No idea what was going wrong.  Eventually.. after 3 hours or so, I lost patience.  I showered off.. but left the irrigation sleeve on with a knot tied in the end, knowing that eventually something had to come out.  I put on a towel and went back to bed.  Exhausted.  Body hurting.  Abdomen hurting.  Fell fast asleep.  Got out of bed at around 9:00 to eat a half a bowl of chicken soup that Hill made.

Saturday I’m not sure I ever really got out of bed.  I mean, not for more than 15 or 20 minutes at a time.  Simply could NOT wake up.  Body was hurting like I’d been beaten with baseball bats.  It all felt very much like the flu.  Maybe it WAS the flu!?  I’m not sure if it was Saturday or Friday.. or maybe both that Hill spent most of the day working in bed right next to me, just because I needed her close.  Indian Take out for dinner and an Iron Man 3 viewing.  Then.  Back to sleep.

Yesterday was like a repeat of friday only worse.  Hill brought me coffee at 10!!!???  How the HELL did I sleep until 10?!  I couldn’t drink it.  Had to take break through pain meds and lie down..  fell back asleep.  When I woke up it was afternoon.  And I still had to irrigate.  Didn’t get out of the bathroom until nearly 4:30, and only then because I had simply run out of patience once again, (and had run out of good one pocket matches to watch).   Utterly infuriated.  Scared.  Confused.  Back to bed.  This time more out of shear frustration than actual fatigue.  Three days lost to me.  More time spent asleep than awake.  Whole body hurting.. some of the usual suspects, but mostly brand new pains that I have no explanation for.   What on earth is happening to me!?

MOTHER FUCK!

 

This morning I’m feeling quite a lot better (I’m hoping that maybe it WAS just the flu).  And a good thing too, because this afternoon at 1:00PM the first round of pill flasks are scheduled to go on sale.  I see no reason not to make that happen!!  It’ll cheer me up to actually DO something, after three days of being too tired to even string together a coherent sentence!

SO.  At precisely 1:00 PM be sure to check the FOR SALE tab at fastboycycles.com to get yours!  I will spend the afternoon packing them up!  For those of you encouraging me to rest, rest..  take it easy.. watch a movie..  just relax and enjoy yourself..  spend time with the ones you love.. Don’t worry about us, or about the pill flasks, or jerseys, or fast boy saddles (wait..what did he say?), I really appreciate it..  I do.  But it’s not how I’m wired.  I’ll write a special post just about this very soon.

At any rate.  Pill flasks.  1:00PM  Today.  HERE

Updates also at the fast boy cycles facebook page.

Step #3001

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Just a quickie to say hello.

I had really hoped that I’d emerge from this latest surge of pain like some sort of phoenix from the ashes.  I haven’t, I’m afraid.  There have been a few NEW aches and pains since I last wrote.  Things moving around in there.  Pressing on nerves.  Just generally making me feel older, more tired, sicker.  BUT, I guess that’s to be expected.  I woke up the other day feeling like I had the flu, and thought to myself, “no..  probably just cancer..”

That same day (Saturday) we were scheduled to go have a family bike ride.  Hill and Sam and Em and I all piled in a Zip car and drove an hour north out of the city to ride some beautiful swoopy trails near reservoirs..  On the way there I was feeling worse and worse.  Sharp pain developing just below the ribs on my right side.  Like the sort of stitch you get from drinking a TON of water and then running.  By the time we got there I couldn’t take a deep breath without BAD stabbing pain.  Couldn’t bend over to put my shoes on.   It made for an interesting ride.  (Yes.  Of course I rode.)  I had to make sure to ride SO far inside myself that deep breaths were not necessary, and had to make sure that no sudden moves or moments of exertion happened.  HA!  Gentle soft pedaling the whole ride..  picking lines with no obstacles..   Probably a great lesson for any mountain biker.  To ride smooooooth without exerting yourself, always picking the most efficient line.  Not my style, of course.  I usually go LOOKING for trouble.  Still it was very nice just to be out there with my whole little family.  They were all very polite about how slowly I led the ride.  We drove back home and I fell asleep for a few hours until Hill woke me up to tell me that it was time to go to my parents place for dinner.

The last few days, though, there HAS been a bit of an uptick in energy.  I DID spend 5 hours in the shop on Sunday polishing up pill flasks.  They WILL be for sale by the end of the week.  I just want to get them out of my shop so that when I feel that urge to make things down there I’m not met on my arrival by this big unfinished project.  It IS funny how much more time it takes to do something 66 times than it takes to do it once.  66 times as much time, it turns out.  And yet..  I mean.  I’m a pretty smart guy.  But I REALLY went out to the shop thinking, “this won’t be so bad..  probably takes me less than 5 minutes, if I really focus, to do this step..  I should be done in an hour or so..”   Um.  Ezra?  So, of course, as REAL math would dictate, I finished up 5 hours later, exhausted.  But done.

This round of flasks is SO imperfect.  Lots of little flaws..  each flask, totally unique.  They’re so imperfect that I couldn’t decide whether to not sell them at all or charge twice as much.  I’ve decided to compromise and sell them for $88 just like before.  I will tell you all when to glue yourselves to your computers.  Probably sometime thursday or friday.

I’ll get back to pictures soon.  I promise.

And YES! to all of you who have asked about jerseys..  yes yes yes.  There were some left over.  But mostly smalls.  SO, I placed an order for some more mediums and larges and even a few XLs, so that I could put them up and not have only one size to offer.  SO try to get excited about FBC jerseys again, because they’re on the way.  I’ll probably put them up sometime next week.  They are SUPER nice.  Made in these United States.

 

Oh Snap.  I need to leave in 5 minutes.   It’s pool with Jeremiah day.  I’m late.

 

Fast boy out.

 

 

 

 

A medical update, at least.

 

 

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It happens sometimes that I am overwhelmed enough by what is going on that I have a hard time finding the words.  I have things to report, issues to discuss, but can’t find the focus to put it down in writing.  So time passes and things keep happening and more ideas pile up and the post that needs to be written gets bigger and bigger and more and more intimidating to tackle, so it doesn’t happen.  I’m finding myself in one of those cycles now.  The bike show, and its aftermath were a pretty emotionally draining time.  I’ve sat down a few times now to try to write about it and have come up short.  IN short, by the time labor day weekend rolled up I was running on fumes..  I had reached the end of my rope, tied a knot, and was hanging on for dear life.  I had changed pain medication the weekend before and was having trouble adjusting..  The wonderful, productive (and to others, I think totally annoying) mania that I experienced for much of the summer had dried up. Whether I was aware of it or not, I think my baseline level of pain had crept up another notch or two.  To get the show to happen became that tight wire act that I have described before, where simply staying up takes TOTAL focus, and anyone who distracted me from that goal suffered the tyrannical wrath of self involved single minded focus.  In other words.. increasingly, as the show approached, I think I was becoming pretty impossible to take.  And by the time the show was all wrapped up, those the closest to me weren’t really feeling all that close.  I was delighted to have raised $15K for hospice, but wasn’t really feeling like I had anyone to celebrate with.  I was also feeling a little too confused and embarrassed about what had happened to be able to write about it.  I am STILL feeling too confused to be able to write about it with any authority.  But I CAN say that for one of the few times in our relationship, Hill and I were not on the same team.  I was feeling a certain level of postpartum depression around the show.  And I arrived at that particular horizon and stepped into the void beyond it to find myself pretty alone.

At any rate, I wasn’t in a position where I felt much like writing.  I’m still not really feeling as though I can adequately discuss that particular stretch of time.  But I felt as though I needed, at least, to touch on it before leaping into the more recent updates.

Over the couple of weeks following the bike show I tried to find ways to be productive..  working on that bloody run of pill flasks.. I’m having trouble thinking what else to be honest.  It wasn’t a great couple of weeks really.  Not much bike riding.  Not much making stuff.  Not much feeling close to my little family.  Not much luck being less irritable.  But a week ago friday a possible culprit revealed itself.

I had been needing a little more break through medication gradually as that week wore on.  On thursday night I knew that I wouldn’t be able to sleep without taking some extra.  Still I woke up at about 3:30 with pretty sever pain deep in the right buttock (one of several chronic pains that crops up).  I took some more break through medication and sort of went back to sleep..  woke up again at 4:30 in absolute agony.  Trying to reconstruct what happened from then until the following evening is going to be almost impossible for me, but I can sum it up.  The pain was at the same level or beyond that which landed me in the hospital 4 months ago,  and no amount of breakthrough methadone was touching it.  I was suddenly experiencing an entirely new realm of discomfort.  Hill was on the phone for me talking with Hospice people who reassured us that we should not be shy about taking the meds, but it wasn’t working.  At some point VERY early in the morinng we got a call from my hospice Doc, Dana, who took an inventory of what meds we still had around and switched me to dilaudid at a dose that finally soothed the situation a bit but the pain was very persistent.  Ultimately to get things under control involved knocking me more or less unconscious for the day.  Dana came to examine me in the late morning.  Just her presence was soothing.  She’s a bit of a miracle.  I was so drugged at this point that I repeatedly dozed off as she checked me out..  I vaguely recall Hill and Dana laughing at me as I pretended to be following what was going on.

I’m not telling the story very well, but the point is that just like 4 months ago my baseline level of pain had somehow risen to a level that I was simply unable to cope with at the current dose of baseline pain medication.  It had knocked me off my tight rope again and was demanding a different level of attention.  So we boosted my baseline by a sort of staggering 50% AND  switched me back to dilaudid.. more frequently.. as breakthrough pain management.  I spent friday in a completely drugged haze.  I tried, I think on Saturday, to report this news, and again on Sunday, but simply couldn’t make it through a sentence without dozing off (I am still, a week later, adjusting to the new level of narcotics). BUT the pain seemed to be back under control.  I played some pool with JS on Sunday, and was a little dozy, but at least was able to play..  felt like I was out of the woods.

I’m having trouble remembering the chronology of it all..  but somewhere in there I had to irrigate, and it did NOT go very well.  It took a LONG time, was painful,  and was not very productive.

By Monday evening I was feeling some intestinal discomfort.  Gas pain, I guessed.  I had already planned to make a particularly refreshing stir fry for dinner, something with a lot of fresh ginger, to settle the stomach, but by the time I put it on the table, my own guts were hurting enough that I opted not to eat.  I went off to bed with no dinner, and before long was lying there with intestinal cramping pain that rivaled the pain I’d just spent several days trying to get under control.  At 3:00 that morning I found myself in the bathroom trying to irrigate thinking that might relieve some of the pressure that I was experiencing, which honestly felt powerful enough to rupture my intestines.  I knew, of course that I was taking a bit of a gamble.  That pumping a liter of fluid IN to guts that already felt as thought they were about to burst, was potentially a terrible idea..   But my wee hour logic, won out.  I knew that over the last bunch of days I’d taken WAY more narcotics than my body was used to, that this had undoubtedly left me pretty constipated, and I talked myself into believing that the pressure I was feeling was the pressure of some very full bowels that simply needed release!  That irrigation could do it!  That it would be pretty uncomfortable to do, but that the payoff would be enormous.  Well.  I was right about it being uncomfortable to do..      If I had to guess I’d say that about three quarters of the liter of water I put in there stayed and simply added to the discomfort.  After an hour of writhing around on the toilet waiting for something to happen, I gave up.  On my way back to bed I took a swig of Milk of Magnesia, just for good measure, and instantly started to projectile vomit brown water that looked and smelled like what should have been coming out of my stoma.  Hill was awake at this point.

“Baby?  Are you ok?”

“No.”

I was not at all ok.  It had been a really difficult 4 or 5 days after a really difficult 3 or 4 weeks, and I was kneeling on the floor in the bathroom in a puddle of shit water that had just come launching from my mouth, without offering me any relief.  I was exhausted, getting ready to climb into bed with an irrigation sleeve still attached, just in case.  I felt no real confidence that I’d be able to sleep, and no real confidence that I’d even make it through the rest of the night without my bowels rupturing and killing me in one of the more disgusting ways this disease could..

I did fall asleep eventually.   I slept off and on until around 4 the next afternoon, in fact.  People came and went, mostly just sitting quietly and reading while I slept.  Hill, Special Ed, my mom.

Judging from your comments on my last (non) post, it seems that about half of you believe that I’ve simply been off having too much fun to bother checking in on the blog to keep you all up to speed.  I wish that was the case!  Instead it’s been one of those times that what I have to say is either difficult to talk about, or difficult to report (if you see the distinction).  But there it is.  The last three weeks or so.  Not very well told, but at least you get the picture.  The whole thing has left me feeling pretty diminished.

Then again.  When I came out of the hospital 4 months ago having been told “weeks to months” (still ringing in my ears), I felt pretty diminished as well!  AND, once I adjusted to that new reality..  the new baseline levels of both pain and pain relief..  I went on a real rampage of creative productivity.  Maybe it’s a cycle.  Maybe I was just due for a little reality check (“kid..  you ARE still dying..”)   And now that reality has been checked I can go back to some sort of inspired creative mania! But, maybe this time with a little more wisdom about the impact that sort of mania has on those around me?

Fingers crossed.

 

This is a lousy post..  but had to be stumbled through.  More Soon.

An update soon. I promise.

 

 

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So sorry for radio silence.

Today is the day!

 

 

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I slept in until almost 7:00 this morning for the first time in weeks!

It’s cooler today in NYC, and less humid.

Everything is as it should be.

Today, at 2:00 pm, the auctions for the Assless and the Ultimate Tight Ass will end, and the bike show will officially be over!   It has been my mental horizon for quite a while now..  What next?!

“REST EZRA!!! ”

“beg your pardon?  I couldn’t hear that..  I think I have bad reception down here in the shop..  and the compressor is running.”

 

At any rate.  I do have SOME ideas..

 

The current bids on the the UTA and the Assless are $10k and $2500 respectively with A-RIV running uncontested on the UTA, and “yeti” and “mr. danger pants” duking it out yesterday afternoon for the Assless, but suddenly P.W. throwing his hat in the ring this morning!!

Naturally I would love to see some action on these bikes this morning, and I will be at the computer (or near it, swapping tires, and going no-tubes, and etc..  for a possible ride this afternoon).  I understand that these are BIG ticket items.  It’s a lot of money to be shelling out, and not a lot of time to think about it!  The cause is a good one.  These hospice folks are doing good work, and until there is massive change in the way palliative care is treated in our medical system, and until that system undergoes major change, they will only be ABLE to do what they do as a non-profit org. with the help of donors.   They really have made the last few months of my life a pleasure.  You’ve all witnessed my general level of activity.. productivity.   All this on what the docs are telling me is borrowed time.

I WILL be coming up with fast boy ways to donate in smaller amounts.   And, yes, of course, as some of you have pointed out, it is possible to simply donate directly.  OR figure out who your local hospice organization is and donate there!  OR volunteer!  I guess the most important thing for me is that there is an increased level of awareness about the end of life choices we actually have.  And that there is some level of support for the folks making those choices possible.

And YES.  The left over jerseys WILL be for sale here online soon.  You will be notified here, and on face place, etc..   Just need to get my bearings and set that up.

And YES..   There is another batch of pill flasks waiting in the wings.  They just need another day of Ezra standing at the lathe.

This week I will not be selling photos.  I am going to leave my weekend free, for some recuperation.  Hopefully by bike..  Hopefully with my beautiful wife.

This morning I finally got a little time to scan through some medium format film that I’ve been shooting over the last bunch of weeks.  Some from all the way back when we went up to Vermont!  Seems like ages ago.  I’ve posted up a bunch in today’s daily photos.  35mm from the same period coming soon!

Thank you all!  Please spread the word about these auctions.  Just 4 hours left!

 

Fast Boy OUT!