Month: October 2013

 

 

 

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.)

 

 

 

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!

 

 

 

 

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.

 

 

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.