teaching cancer to cry

 

 

SO.   My birthday passed without event.  Then, Special Ed’s and the coinciding darkest day of the year.  Big Sam’s birthday (may he rest peacefully) and the coinciding coming of the new year!  All without event.  That is to say, I’m still here!

Just before christmas we had a nice visit from our good friend Todd (which included a viewing of quicksilver..  aahhhhh..   too good).  We had a very nice christmas.  Brother Zach rolled through with nephew Gunnar.  We ate some beautiful racks of lamb.  The day after christmas, Matt arrived.  Ever steady Matt.  Poor guy is going to go broke if I don’t die soon!!  These flights from Japan MUST be adding up!  He has been a great sport.  Just helping me out in the shop.  Helping with grocery shopping.. cooking.. you name it.

I finished up the stools and a batch of wooden crates for Hill.  Just a whole mess of cedar crates for her to use as modular furniture around the house.. bed side tables, book shelves, stools, whatever.

The next little project that I’m gearing up for is making frames for photographs.  I’ve been going back through all my old negatives looking to see what I missed.  Looking to find those photos that, for whatever reason, didn’t catch my eye then, but maybe do now!  Looking for treasure.  Also just archiving – making good scans of the photos I know I like and storing them away on drives with some redundancy.  In this process, though, I’m trying to identify those images that I think really deserve to be printed.  Because of questions of resolution, and of the way the eye perceives reflected light versus projected light, photographs simply look different in print.  The quality of ink jet printing has gotten to a point that makes it possible to have a GREAT deal of control at home without a dark room and to produce images that are truly stunning.  I really love this analog to digital process.  Shooting on film, developing at home, scanning to digital, and then digitally printing, after magically getting rid of whatever dust you might like to, and making whatever other adjustments to the contrast and color balance feel necessary.

But then what!?  Then you’ve got a print on a piece of paper and you do what with it?  Put it on the fridge with a magnet, I guess?

I’ve decided to try to go a step farther.  I’ve decided to pick out individual photos that I’ve taken that I’m proud of and actually give some thought to how I think they’d best be displayed.  Then make an appropriate frame, and mat if a mat is called for, and complete a few pieces!  Maybe just to be scattered around among family members, or shoved in boxes and stored safely in the basement where maybe gunnar will discover them in 15 or 20 years.  Who knows.  But.  I’ve got the urge to do it.

Naturally with me, however, nothing is ever all that simple, and the gears begin to turn and before you know it I’m placing orders for bars of aluminum and brass and bits of threaded rod, and tooling, because if you’re going to make some frames, you should probably re-invent the wheel entirely and come up with a universal fixture for putting them together, that in its own right will be a beautiful object, and take up whole lot of your time and creative energy.

 

Sadly there is a wrinkle.  Starting sometime a little bit before my birthday, I began to notice that my left pinky and ring finger were a little tingly and numb.

“shit”  I cataloged it.  The next time that Dr. Dana asked me if I had developed any numbness or tingling I’d have to report that, why yes!, I did have some.

Over the course of a few weeks the numbness got worse. This is to say that it got more intense and covered a bigger area of my hand and lower arm.  I also began to loose a little strength in the hand.   I first noticed when I was unable to hold a piece of sand paper onto a sanding block (that pinky and ring finger simply unwilling to comply)..  and then was unable to squeeze tooth paste..   unable to turn the key to open the front door.     Last night I was unable to clip my finger nails, and was nearly unable to zip up my own shirt.

Along with this numbness and loss in use has come, you guessed it!, a great deal of pain.  Starting from the back of the elbow/base of the triceps, the pain radiates up the back of the arm, around the shoulder and under the scapula to the spine.

Now.  I have well documented herniated disks at just the right level to be causing this.  I also have a PT from VT who comes to visit me on weekends that he’s able, and he gave me a solid work over recently, and we were able to determine together that there was a clear impingement of the C8 nerve root and yet could not find a single position or stretch that offered any relief.

I had a fairly intense spike in that particular pain a few weeks ago, and Dana came by for a visit.  It took her very little time to give me some pretty disturbing news.  She didn’t think the impingement was coming from the disk level at all, but somewhere a little ways away from the spine.

For some time now on that left side, I have had clustered in that soft notch created by the clavicle, a few very hard swollen lymph nodes (I noticed these months ago, and my hospice nurse pointed out that our bodies are loaded with lymph nodes and that they can get swollen for any number of reasons..)  It is Dana’s feeling that these are the tip of the ice berg so to speak..  there is a whole chain of lymph nodes running up from the presumed center of the action.  These new symptoms are a good indication that these nodes are involved, and swollen, and that it is probably THEM pressing on the C8 nerve root.

There are a couple of reasons that this isn’t really great news.  A couple of reasons that we wish it was actually a herniated disk.  The first is that if a disk was causing the problem, it is likely that some corrective exercises could clear it up.  (it is also likely that the steroids I’m on would have diminished any inflammation in that area to a degree that I wouldn’t be feeling symptoms to begin with!).  But the  big piece of bad new is that this is a good indication that the cancer is migrating north.  Towards my brain pan.   Also that given the speed with which these symptoms are developing, that things seem to be moving pretty quickly.

The loss of use of my hand is one of the most disturbing developments so far.  I have had to get used to shitting in a bag,  and not being able to ride a bike (even if that turned out to be the ranting of a mad man the first time around), and the fact that my penis won’t get hard, and yet not being able to clip my own fingernails last night nearly destroyed me.  For it to come at a time when I have so many projects that I want to do in the shops..     Well.   I guess when wouldn’t it?  Right?  I’m still managing to function out there.

 

I’m sorry.  I’m unable to stay awake.  I’m going to go ahead and post this as it is.  I need to go and have a rest.  Please pardon any incoherence.   Perhaps I’ll read it over when I wake up..

 

 

 

 

 

 

 

What an amazing night.  What a party.  I had no idea I knew that many people..  Had even less idea that there were that many people that I really like and wanted to see!  Like a big warm embrace, the whole thing.

I have a lot to say about the whole thing, but the purpose for this quick post is simple.  Just to bring your attention to the sale page for that one lonely photo, as promised.  I will leave sales for it open for the day, or until sales reach a number that is all I feel I can handle.  I’ll get them all printed and packaged and shipped by tomorrow, and barring a blizzard somewhere, everyone should get theirs in time to give it as a x-mas gift, or simply hang onto it for themselves!

Thank you all so much for your birthday wishes.  Now that it’s over, I feel slightly freed!  It’s as though THAT had been some sort of deadline..  Another of Rasputin or Nostradamus’ predictions of the end.. that simply came and went without anything happening.  I woke up this morning..  everything seems to be in order.. I’m still here.  SO.  I guess I’ll carry on!

Please enjoy that photo.  And enjoy these last few days before the TRUE winter solstice..  On the 21st.  After that, the days start getting longer again (but don’t be fooled..  officially, that is just the BEGINNING of winter.  The cold part is yet to come!)

Sale page is here.  (click on the word “here” for those of you who are new to this, and you will be transported!)

Thank you all.

Continued Big Love.

Today is my 40th birthday.  A birthday that I was NOT guaranteed to celebrate.  I just looked back in this blog to the several entries around my 309th birthday and things were frankly quite grim!  We were JUST getting the news of my recurrence and learning what we could about the reality of that situation.  The doctors that we saw all agreed that without treatment I had 6 – X months to live, where X ranged from 8 to 12.  “Fine, I’ll take 12!” I said, and refused treatment.  So here we are 12 months later, and there is no question that I am a sick man..  I take a fistful of pills three times a day in order to keep pain at bay, to stay upright when I want to be upright, and to stay asleep when that’s my preference..  But I am NOT dead.  I don’t look dead.. I don’t behave dead.. and for the most part I don’t feel dead.

Furthermore, I did NOT spend the last year making trips to the doctors office for treatment that would have left me feeling terrible with no promise of results.  I think back and realize that I packed more living into the last year than I’ve managed to fit into any other single year of my life.*

I began writing in the last post about my long conditioned feelings about this time of year.  About the sense of finality that comes with the holidays for me.  For quite a while now my birthday has felt like the horizon.  When I made it to the scary six month mark that they warned me about the natural next landmark was this birthday. I felt as though it would be quite fitting and natural to diminish during the fall, with the failing light, and die right around my birthday, proving to the docs that I had outlived all but their very most optimistic predictions.  But here we are, and I’m feeling fine!  Ok.  Well.  That’s a patent lie.  I don’t feel fine, exactly.  I feel like hell a lot of the time.  Most recently, I’ve started to loose function in my left hand and forearm. Numbness, nerve pain, loss of strength and control, etc… BUT what I mean is that I feel miles and miles from dead.  This is going to take a serious mental adjustment.  A new horizon!  I’m not sure what that should be.  Hillary’s birthday is March 2nd..  But that would be a really crummy birthday present.  I would love to see Nova Scotia again..  The earliest we ever really go up there is May.  Is that too long?  Another 6 months?

At any rate..  The whole thing leaves me feeling a bit untethered.  I had a good reference point.  I had a script that made some sense, but my body did not cooperate.  Now that this birthday has come, I’m feeling a bit at sea.  But that’s not a terrible way to feel  (better than dead, I’m thinking..).

I have been shooting a lot with the hasselblad Xpan that I bought recently.  I love the format.  I love the narrative quality of such a wide frame.  I had a roll of Ilford fp4 in it last that I shot more or less in two bursts.  One burst of shots of Hill working on the day bed in our bedroom, while Putney slept snuggled up to her legs.  And one burst of Monkey Business shots of me and Glen goofing around up on the roof.  I took one lonely shot between those two bursts, though.  I was taking the camera down to the shop with me one day, just in case, and I stepped out the door and saw the fresh snow.  I pulled the camera out just to see what I could frame there from the top of the stoop..  I was checking the light.. the aperture.. figuring out where to focus.  I put the camera up to my face and was looking around for a photograph.  I suddenly became aware that someone was walking down the sidewalk and was slowing down because I was taking a picture.  So without even thinking I just pulled the trigger, and dropped the camera from my face.

“What are you doing?”  It was Hillary.  I didn’t even know that she was out..  I thought she was behind me, back in the house.  Suddenly I got very flustered..  I mean, what WAS I doing?  I hadn’t really had time to see if there was a picture there.

“Ah..  Just taking pictures of this white on white!”

“What white on white?”

I started looking around for something obvious to point to and came up short.  It had just been an impulse, and I wasn’t really sure that it had been a good impulse.

“I’m just headed down to the shop to work on stools,” I said.

That shot turned out to be my favorite shot on the role, though.  I actually find it quite moving.  Maybe you’ll see it too, maybe not.  I printed up a copy this morning, and it’s stunning.  It was my intention to put it up for sale today maybe as a last minute x-mas present for someone..   I’ve run out of time, though.  I need to take a shower and get dressed and head over to my birthday party.  BUT, maybe I’ll put it up tomorrow morning.  Just that print.  Glen and Hill and Putney are all very cute, but for me, that lonely photo is the most interesting.  I’ll make it available just in the US, and if I ship by friday, it should make it to you by x-mas.  Now.  I need to go to my party.  Fast Boy OUT!

 

 

 

 

 

*A partial list of things that spring to mind!

• Built the UTA
• Rode the UTA all around Westchester and Vermont
• Traveled around Europe with Hill and Glen and Hedi
• Took lots of photos, and sold lots of photos (and was stunned.. stopped in my tracks by your willingness to BUY my photos)
• Made things in the shop that were NOT bikes (Pill flasks come to mind)
• Invented the umami bomb (and cooked some pretty memorable sunday night dinners in the backyard)
• Broke my arm and assumed that was the end of my bike riding career
• Played lots of pool
• Made several trips up to Vermont to spend time with my brothers and other Vermont pals
• Got over the broken arm and rode bikes some more!
• Showed bikes and photos at the first annual Bike Cult show in BKLYN at which I auctioned off the UTA and the Assless to raise a combined $15K for the home hospice program of the visiting nurse service of New York.
• Cooked thanksgiving dinner
• Crawled to the presumed finish line : My birthday! only to keep right on stumbling along..

 

 

 

 

 

 

 

Ok gang.   The time is here.   I’m putting the fast boy swifts on sale so that I can get them out the door (for those who order promptly) in time for christmas delivery.  One of these saddles would make a really beautiful gift, it has to be said.

An explanation, for those who missed it one way or another..   Last winter when I was building the UTA, Simon Firth (who builds custom bikes under the name Hanford Cycles, and is one half of the new and very cool Transport Cycles bike shop in Philadelphia, AND is the official Brooks repair man in the U.S.) took things into his own hands and contacted brooks on my behalf and had them donate a titanium brooks swift for the project.  Before sending it to me, he replaced one of the beautiful big round rivets on the saddle, with a heart shaped rivet.  The two of us liked this little touch so much, that we thought we should make it available to people in a limited run.  It has taken us a little while, but we finally did it this fall, and I’m finally getting around to selling them TODAY!

This IS a limited run in a number of ways.  There aren’t very many of these saddles.  We won’t be doing it again.  The saddles are only available in two of the three main colors that brooks uses (antique brown and black).  The saddles are only available in the steel rail version.  AND, we’re only offering swifts.  The swift is not the saddle for everyone.  (It IS the saddle for ME!  I have been riding a brooks swift for the last 12 years or so.  I own three of them (one in each color), and while I have had more than three bikes at various times over the last 12 years, I’ve never had more than three saddles..  like pedals, I just swap them around depending on what bike I want to ride).  Relative to most of Brooks’ other saddles, the swift is quite narrow (and light).  Depending on your anatomy, this will or won’t be comfortable.  Through all my trials and tribulations in the region of my whatsis, the swift has remained the saddle for me, but that means very little as to how it will feel for you!  All this to say:  PLEASE don’t buy one of these saddles on a whim – they are very nice saddles and there are very few of them, and I’d like them to go to people who will cherish them, and ride them for years and years as I have done with mine.

The jerseys were the fist thing that I offered up for sale that I didn’t actually make.  I WAS able to dictate most things about them, however, and in so doing control the outcome.  These saddles are a little different.  Simon did the original as a tribute of sorts..  a very loving gesture, I thought.  It was his idea, and his execution.  These saddles are no different.  In this case, I am simply the one bank-rolling the operation, and dealing with the sales and shipping.  It is a strange feeling for someone as controlling as ME to let go of the reins and just roll with it.  To allow someone else to make something that I am willing to call an official fast boy product!!  But these are simply beautiful.  You will love and cherish yours.  Each one is different, and there are very few of them.  If you end up with one, it is pretty unlikely that you’ll ever bump into someone ELSE with one!

I am limiting sales to the US, I’m sorry to announce.  International shipping and customs on these will be a hassle, and there are few enough to begin with that I’m eager to keep it simple.  I apologize.  (those of you living outside the US who REALLY want one, could always be clever and have it shipped to a friend IN the US and take it from there..  just sayin’)

OK.  At some point in the next little while, these will go live over at the for sale page of the fast boy cycles site.

Good luck!

 

 

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.

 

 

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.