Month: November 2013

 

 

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 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).