Archive for May, 2013

Getting out of here soon

hospitals-are-booooring

 

An update as soon as I’ve settled back in to my own home and find the wherewithal..  it’ll probably take a bit of Putney/Hillary snuggling to get there.

Universe playing dirty.

 

in the hospital again

 

Wow.  Tried to start writing a detailed account of how the hell I got here, but kept falling asleep mid sentence.  It was a rough night and I’m heavily dosed.  At 2:00 this morning, I walked out of the Radiology center and back to my room in the palliative care wing, without getting the CT scan of the pelvis that I’d been called down for an hour earlier (“I’m so sorry for the wait, mr. Cadwel, but they say they ARE finally ready for you.. there was some sort of pediatric emergency.”  This was a scan that I had been promised at 10:00 and had put off dinner in order to get).   Hill is allowed to stay with me here and we had both brushed our teeth and tucked ourselves back in to bed when the guy from the front desk in radiology burst in to reprimand me..  It had taken him 15 or 20 minutes just to realize that we had walked out.  They had been watching UFC or something like that on someone’s phone.

I’m waking up a little now.   Why am I here!?  The short version, which I think I’ll stick to, is that on tuesday I started experiencing a level of pain that I was simply unable to get under control (I ended up taking nearly triple my normal daily dose of narcotic pain killers all in an 8 or 9 hour window with no relief).  The worst discomfort I have felt since the last surgery.  Blinding pain.  The kind of pain that makes it nearly impossible to even communicate.  We eventually got my oncologist on the phone who suggested just continuing to try to get on top of it with break through medication over night and that he and my new palliative care doc would discuss it in the morning.  I never DID manage to get on top of it.  Palliative care doc called me in the morning, heard my account of things, and said that she’d like to have me admitted so that they could get things under control with IV pain meds, and do some diagnostics to try and find a cause for such a sudden spike.

“Or?”

“Well..  or we can try to see if you can get it under control at home with the oral meds you have..   But I would really like to be able to follow you for a while and make sure that things are under control”

“A while?”

The eight or nine days that I spent in the hospital after Surgery where some of the worst in my life.

“Well.  Usually it’s possible to get things under control in a few days.”

“Days.  Ok.  So there’s no chance I’ll get out of there this afternoon..”

“No.”

“How about tomorrow..”

I’m drinking contrast now to try again on the CT scan.  The entire staff of the palliative care unit is up in arms about last night’s drama.  They’re ready to start some sort of inter-departmental smack down on my behalf.   Hopefully things will go without a hitch.  I don’t know whether to hope they find a cause for the pain or not!  (The universe feeling as though the Jury Duty joke wasn’t fully appreciated, now throwing a HEAVY wrench in the works to remind me that it doesn’t have to all be funny..)

Dozing off again.   At some point here I have to find the time to irrigate.

More later.

You thought the arm was too much?

 

come on!

 

After writing the last blog post on Saturday morning I went to the pool hall and spent the afternoon loosing at one pocket.

I came home to find this in my pile of mail.  Like I said..  You can’t make this shit up!!

Someone at the county clerk’s office has quite a sense of humor.

 

Fast breaking news: In which Fast Boy tells a hilarious story about recent doctor visits.

Ok.  So, I have a funny story.

I was so caught up on tuesday with my anger/sorrow about the disastrous changes at flickr and the ensuing disappearance of all pictures on my blog that I didn’t really say much about my trip to the doc.

Let me pause here to thank Cosmo C. again for his brilliant stroke of coding that saved me (or in point of fact, saved all of YOU who so generously offered) from going back through the entire blog copying and pasting image URLs.

At the end of my uneventful visit with the doc I asked if he thought it was a good idea to get a little x-ray of my forearm to make sure that it was healing up as it should.  He said, “sure” and had someone make a phone call and I headed straight off to the radiology unit in the basement.  A nice lady called my name and in we went.  I put my arm down on the table, palm down, and she grabbed me by the wrist and flipped my hand over so that it was palm up..  Or at any rate she tried to..  quickly..  and with what felt like quite a bit of ooomph.

“OW!!”  followed by some form of expletive that I can’t remember.. probably taking the lord’s name in vane in some way..  “The arm IS broken..  we already know that..  we’re just checking to see how it’s healing up!! Please be a little gentle.”

She got wide eyed.  In her defense, I was not wearing a splint when I walked in.  Since the X-ray script said that we were checking in on the status of a break and I wasn’t in a cast, she probably assumed I was all healed up.

“How’d it go baby,” said Hill as we walked out.

“I think that nice lady just re-broke my arm..”

Yesterday we went to an appointment with the head of the palliative care branch of the cancer treatment center.  A friendly young doc named Beth.  We talked about my current state, and my goals for medical intervention.  (To be as comfortable and energetic as it is possible to be while sill being present and available to my family and close friends).  We discussed enrolling in hospice. *takes deep breath*.  She suggested that I take more pain killers than I am, particularly leaning on the slow release version.  She assured me that the 80-90 mg a day that the increase would mean was a fraction of what it takes for some people.  Hill had a wedding to get to and left a little early as I waited for the doc to write me some scripts and schedule a follow up appointment.   Almost as an after thought I said, “Oh!  As long as you’ve got my file there, can you pull up tuesday’s X-ray?”  I hadn’t heard anything from my oncologist, so I assumed everything was fine, but I’m always curious to see for myself.  Here’s what she pulled up on the screen..

 

tuesday

 

You don’t need to be a radiologist to see that there’s something wrong with THAT.  By contrast, here’s what it looked like the day I broke it..  (for those of you who are as fascinated by this stuff as I am, check out the level of atrophy in my forearm!  Imagine what it would look like if I’d left the cast on..   Well..  probably not broken again, come to think of it).

 

day-of

Beth left me in the room while she went to see if she could arrange an immediate visit with someone in orthopaedics.  I cancelled the pool game that I was already running late for.  She came back to report that everyone in orthopaedics had already left for the long holiday weekend.  The only thing left to do was to go to the emergency room.  “Nope.  Not a chance.  Those monkeys will just put me back in a long arm cast.  Not gonna happen!”  I don’t know much about bones, but I know a little about building stuff and engineering, and THAT looks to me like it needs to be plated.

So I headed home.  I hopped off the bus at the grocery store and picked up a pork loin roast and some baking potatoes.  Wax beans.  Fennel.  Apples for a little Marsala infused applesauce..

I wrote some emails to the various ortho docs who have been so helpful with my recent mountain biking maladies.  I got the strangest responses.  Three docs wrote me back, and rather than actually publishing what they wrote (that seems like a no no somehow), I will distill the three into one fictional response:

“Hey Ezra.  Sorry to hear what happened.   It doesn’t actually look THAT bad.  Don’t worry about it.  I would definitely wear the brace all the time.  Ice it and keep it elevated and the pain should go down.  We’ll take a look at it next week.”

I get the distinct sense that these are some docs who have plans for the long weekend and don’t want to perform some sort of emergency surgery that can wait until next week with no adverse effect, and also don’t want ME to spend the weekend feeling all anxious about my messed up arm.  Any orthopaedic doctors or radiologists out there who feel like weighing in, feel free to write me..  I would appreciate it.  And I CAN handle the truth.  I am not in any pain, and I’m sure that it can all be taken care of next week.

SO.  I’m off to the pool hall.  Playing one pocket today.  First Yorgos and then Jon Smith.  Tomorrow Special Ed will join me.

You can’t make this stuff up.  It really is true that only real life can be so unbelievable.  You’d never get away with it if you were writing fiction.

Keep it coming, universe.  You’re cracking me up! (so to speak.)

FB out.

Adendum:

Just to be clear.  I am not blaming the x-ray tech for re-breaking my arm.  I said what I did to Hill on our way out of the appointment as a joke.  A way of saying, “holy cow, that really hurt.”  The fact that the arm then turns out to have a displaced fracture where there wasn’t one before is a bit of a head-scratcher, but there are certainly other explanations than that she re-broke it.  I could have done it in some other way WEEKS ago.  One doc that wrote me back suggested that there’s no way of really knowing..  My guess is that a good radiologist looking at the actual film instead of a phone capture could probably make an educated guess, though.  We’ll see!

Yesterday.

I did something stupid.  But only because flickr did something even more stupid.

Many, but probably not all of you, know that for a long time I’ve had a flickr account that I’ve kept pretty active.  I started putting pictures on flickr in 2005.  It became a great community for me.  A great reason to take pictures even.  I think that in many ways I owe a lot of my development as a photographer to that community, and the desire to share images with its members.  When I began building bikes, I already had an audience.  Because of flickr, I have never had to advertise, and I have never been without work.  When I got sick, I had a ready-made group of supporters willing to help in any way that they could.

Over the years flickr has changed a lot.  Many of those changes made necessary by the growing popularity of the site..  Its higher visibility.  It has gotten more puritanical.  Some of you may remember my run in with them over a public art piece that involved a man peeing.  It has also changed its look a number of times, and in my mind usually not for the better.  I’ve hung in there, though, because that’s where the people were.  That’s where the community had developed.

Yesterday they rolled out a set of changes that are simply beyond the pail to me.  The best thing about flickr, visually, has always been that it is a fairly clean environment for displaying photographs.. Not all jumbled up with the social media side of things, or plastered with ads.  Yesterday that all changed.  The site has become hideous.  There are some other changes that I hate too, involving membership and what you get for your money..  but the biggest thing is the fact that I just don’t like looking at photos on the site anymore.  It’s all junked up..  jumbled and crowded and noisy.  It has none of the class that it once had.  It’s not a place that I care to look at photos anymore, and it’s not a place that I particularly care to have other people look at mine!  Please please forgive me if that sounds precious.  I’m not alone in this.  The change has sparked general outrage, and there are petitions going around with thousands of signatures begging them to change it back.

In protest and disgust yesterday, I made all my photos private.  That is to say, I didn’t take them off of flickr, I simply made them invisible to anyone but me.  And I put up a single image lamenting.. mourning.. the death of flickr.   When I made this massive batch change to my stream of over 3000 photos it didn’t occur to me (and I wasn’t warned), that this would change those photos’ URLs and that any links to those photos (including the links on this blog) would go dead.  It also didn’t occur to me (and I wasn’t warned) that these photos would loose all the favorites that they had accumulated on flickr over the years, and be removed from my friends’ and contacts’ favorites collections.  When I realized that this had happened I conceded and made the photos public again so that the blog and my website would still have images, but decided that I would no longer post to flickr..  that I’d find some other way to share photography.

Sadly, making the images public again did NOT restore the URLs nor did it restore the favorites.  All of that has simply vanished into the ether.  (My fast boy cycles website works a little differently – not by individual URL, but by more dynamic links to sets on flickr – and those have been restored).  Because the URLs are different now, it’ll be a real chore to even figure out WHAT image went with what post.  Restoring images to this blog will be several days of work (individually figuring out what image went with what post.. 5 years worth..  locating the image and making a version of it in photoshop that is appropriate for upload directly to the wordpress blog so that further changes at flickr don’t mess it all up again).  I haven’t decided whether or not I have what it takes to do it.

I apologize gang.  My mistake. I know that this blog is not the same without images.

Hey flickr – before allowing people to change the permissions on thousands of photos, how about warning them about the consequences..   Oh..  and while you’re at it..  Make the site look nice again.  It looks like crap right now, and I’m not going to use it anymore.  I’m so sad.. we’ve had a bunch of good years.  But it’s not me..  it’s you.

 

I had a doc appointment yesterday.  Nothing to report.  He IS ordering a ct scan so we’ll have some notion of how the tumors have grown.   I will meet with the head of “supportive care” on Friday.

Fast Boy out.

 

 

UPDATE!

Thank you all so much for your offers of help.   Hold that thought for a moment, though.  It seems as though a friend may have managed to write a little script to plug into my blog that will go find the correct URL and plug it in.  We’re testing it out now.  We might be back up and running with images before to long.  Thank you thank you…  and please stand by!

 

UPDATE 2!

FIXED!!!!   Cosmo C. fixed it.  Unbelievable.  Thank you Cosmo.  The rest of you can thank Cosmo too since I was going to take you all up on those offers of time tediously cutting and pasting.  Not necessary.  Cosmo built a robot that took care of the whole thing in a flash and is now looking for other ways to be useful..   (currently cleaning up the kitchen after tonight’s sardine pasta..)  Cosmo.  Thank you.

progress

It’s been a minute since I’ve written anything up here.

This broken arm has really been making me feel tired.  Everything takes more energy.  It seems to be healing just fine.  I only wear a splint if I’m on the subway, or somewhere else that I’m likely to get run into.  But I can’t (shouldn’t) lift anything, and range of motion is pretty compromised.  Playing pool is no issue.  That’s a big relief.  Cooking is slow, though.  Trying to do anything in the shop is slow/not possible.  This week I have slid out of retirement to teach a bike building class to an old friend.  By the time 5:00 rolls around and I send him away, I am ready for bed.  Last night I rallied after an evening nap and made dinner for friends/family.  Tonight I will have to rally to go to Sam Amidon’s album release at Poisson Rouge.  If you don’t already know of our good friend Sam, you should familiarize yourself..  and if there are tickets left for the event, you should buy them!  (see you there).

I have requested an appointment with my doc.  I’m curious (and a bit terrified) to perhaps do some imaging and see how the tumors have progressed.  We’re two weeks away from the beginning of June, which will be 6 months from the time that the docs suggested that I had 6-8 months to live.   I guess it’s possible that whatever increased levels of pain and fatigue I’m feeling are purely due to the anxiety/depression of that reality.  Maybe getting some pictures and seeing that the tumors haven’t advanced nearly as much as the doctors had expected will help on that level.

On the other hand, the docs could look at the pictures and say, “we’re pretty surprised that you’re not feeling MORE fatigued than you are..  shit..  you shouldn’t be upright!  Why don’t you head home and we’ll send someone to set you up with a morphine drip”

“Um.  Doc.  That’s not going to work for me.  I’m supposed to be racing bikes in Germany in August..”

Gang.  This thing is wearing me down.  I’ve been wanting to work on getting some photos up for sale on my website, as some of you have requested..  I’ve been wanting to do some work on my website in general – make an auction page for the UTA – make it a little more clear on the orders page that I’m not looking for new orders at this stage, etc..   I’ve been wanting to work on a set of stools that are rattling around in my head (broken arm not helping with that either, really).. There ARE even some people that I’d like to spend a little time with.  But I’m not finding the energy to do any of it.

We have a couple of sets of really nice new linen sheets for our bed.

The folks from Made By Hand came to the house for a couple of days in January of 2012 to shoot a short film about me.  I had been pretty hesitant about the idea from the start, and when the appointed day(s) rolled around I wasn’t in great shape.  I was in remission.  I was cancer free, as far as we knew.  I was building bikes and trying to get on with my life.  But I was pretty depressed.  I guess not uncommon for people who have been through treatment for cancer..  AND it was January.

I opened the door expecting Keith (the film maker) and a camera man..  it turned out to be a crew of 6 (7?).  I was overwhelmed.  The two days left me feeling pretty wretched.  I said all sorts of things in front of the camera that I regretted having said.  Like the feeling you sometimes have after a night of too much drinking, when you wake up and think “wow..  did that really tumble out of my mouth?” and you think about how maybe you’d be better off if you just took a vow of silence.  I have a feeling that I may have said “hipster dipshits,” at least a couple of times during filming, and some things about the people to whom I was referring that I’m not about to dredge up and repeat here.  The guys in the crew were unbelievably nice about it, though..  and in the end, they made a film that did NOT make me seem like the bitter wretched human being that I felt like at the time.  I am very grateful for that.

Enjoy.   And as always, thank you all for staying tuned.