Archive for September, 2013

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!

 

 

All wrapped up!

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What a crazy weekend!

Saturday morning I woke up sometime before 6 so that I could print a few more pictures, and add a bit of text to the display to make for fewer questions.  Todd and I packed ourselves into the car with the various extra bits and pieces that we had decided to add to the display and got out to the venue at a fashionable 9:30.  There were already people milling around, but it wasn’t overwhelming.   The day went beautifully.  I met TONS of people who have been following the blog all these years.  What an amazing thing!  Thank you all for stopping by to say something.  To actually meet face to face with someone who has been following along this whole time is a strange feeling.  Someone who knows SO much about me, who I know NOTHING of.  I’m sorry if I seemed awkward!  I was delighted, but felt a bit like a deer in the headlights.   I hope you all understand!

The show itself was really a wonderful thing. A big room full of really talented bike builders. It seems as though the number of people building in the NYC area has really swelled in the last couple of years. But MAN, is there ever some talent! It was very inspiring. Made me kind of want to jump back in and make some bikes.. (steady now, Ezra..).  Big congrats to Brian Chapman for his best in show Rando bike.  What a beautiful machine!

We packed up the show at around 3:30 and headed back to harlem for a little rest and food, then turned around and went back out to brooklyn for the after party at this amazing pump track in a temporarily vacant lot, where after a fair amount of confusion about wires and projectors everyone got to see the premiere of a movie that MySam made especially for that occasion!

Sam shot lots of footage while I was building the UTA. He didn’t have a SPECIFIC film in mind, but wanted the footage for an eventual film. When the bike show cropped up, it seemed like a good opportunity.. a good deadline to do something. And the story of the three bikes that I showed at the show, and the strange way that they’re connected seemed like the right story to tell.. Sam did a few interviews with me, AND we went out into the woods with St. Georges’ help (sherpa, water carrier, local trail expert, and good buddy rider), to get some riding footage. Our good pal Samamidon gave us the music.  And Keith from Made By Hand gave us some footage of me riding the assless, which we didn’t have time to run out and shoot ourselves.  Everything was really down to the wire…  I was working on the displays, and getting the bikes ready (with LOTS of last minute help from Todd miller without whom the show would not have happened for me).  And SAM was chained to his desk trying to put together the strange puzzle pieces in a way that actually meant something.  In the end he made a really beautiful little film.

It was late at night (Ha! 9:30, I think).. I was exhausted from the weekend..  There were people riding tall bikes on a BMX pump track..   It was mayhem!  Beautiful Bike Mayhem.  Finally technical difficulties were sorted out and I was handed a set of headphones to use as a microphone (?) and sent up on top of a picnic table to introduce the film.   It was very moving for me.  A sea of bike people..  tattooed and bearded, buttoned down, young and excited..   all sorts.  But all looking right at me.  I could barely get out an intelligible sentence..  I apologize to all of you there for not being more eloquent.  I was not prepared.  I was exhausted and emotionally spent.  I had been talking all weekend.  The support that I felt from that sea of bike people was amazing, though.  Thank you all, if you’re reading this.  It meant the world to me.

People where rapt by Sam’s film.  I’m so pleased with it..  Sam did such a nice job (in such a very short period of time..)  Thank you MySam!   I hope you know that this film means the world to me!

 

 

Both the assless and the UTA are up for auction NOW.   The auction pages are at www.fastboycycles.com.  The auctions CLOSE on wednesday at 2pm eastern time.  ALL proceeds for both auctions go to the Visiting Nurse Service of New York Home Hospice Program.   They are a NON-PROFIT organization that provides in home palliative care for people at the end of life.  There is a lot of misunderstanding about what that can mean, however, and I hope that I serve as an example of just how positive and proactive an experience it can be.  Because of their expert care, I feel the best I’ve felt in 5 years!!!  Hard to imagine that I’m dying, except that I can plainly SEE the changes that the disease is making to my body and can see that it is progressing.  VNS survives on donations.  The insurance companies only partially compensate them for the services that they render.  For the rest, they fund raise.  It is very important to me that the organization continue to be able to do what it does.    I would be very proud indeed if I managed to raise them a good chunk of money through these two auctions.  SO please spread the word.  Bid to win!

Thank you so much to all of the people that I met over the weekend.  Thank you for coming out to the show.  It was my first bike show!!  Hard to imagine.  I just never really got around to doing one..  Strange that it should finally happen when I’m retired!!  (we’ll see about that retirement..)  Thank you so much to my family for all your help schlepping stuff back and forth for the show, and putting up with my single minded focus for the last week.  Happily, the show is done now, and things can settle back into the more mild form of mania that we’ve come to know in the last few months.  Your support is everything to me.

BIG LOVE

FB out.

 

OH!  and yes.  There are still a few jerseys and I will set up a sale page for them shortly!  Watch the blog and faceplace and etc..