new photo site

 

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The other night I had dinner at the Breslin with my brother and Special Ed.  We each started with a gin and tonic.  Thomas ordered mine with Death’s Door gin.  He thought it was funny as hell.

For the last several weeks I’ve been lamenting the death, or at any rate complete identity change of flickr.  For many years, flickr has been the only internet social media that I engage in.  I always liked it because it wasn’t ugly..  it wasn’t busy and full of distractions or ads.   It was a place that you could show photographs and know that people might actually look at them, maybe comment on them.  A real community developed there in the early days, not a group of serious photographers so much as a group of regular people documenting and  sharing their lives.  I have very close REAL live friends that developed out of that community.

I think in a lot of ways flickr really helped my photography!  It gave me an audience, a reason to shoot.  When I started to build bikes, I already had a built in audience from flickr and I never once needed to advertise!  When I got sick, I had a built in network of support. Flickr has become ugly, though.  A cluttered mess.  I know that some people don’t mind it so much, but I can’t take it.  I don’t like the way photos look on there.  So I’ve stopped using it, and it makes me pretty sad.

Lately I’ve been pretty weak.  I’ve got a broken arm, I get tired easily, I’m in a certain amount of pain, and I’m on a certain amount of pain meds!  (in both cases, that ‘certain amount’ is considerable).  I’m really not able to work in the shop anymore.  But for me, the need to make stuff is a driving force and doesn’t go away.  An urge that I can’t ignore.  Lately I’ve been feeling the urge to take photographs.  To make people’s portraits.  To document what sound like they’ll be my last weeks.. months. It has been a REAL pisser to me lately that flickr isn’t an option.

SO.  I’ve made a new website.  My thought is that I’ll populate it gradually with photos from the past, and with new photos..  day by day as they accumulate.  Just a simple clean space to be able to look at the photographs without any busy distractions. It’ll take a little while to work out the bugs, and massage it into just the site I want it to be, but I’m going to try to shove it up here onto the web as is, and let the fixes happen when they do, simply to have a place to put some pictures!

The Teaching Cancer to Cry blog will continue to be the place to get information and updates and thoughts on the progression of my cancer.  I’m finding, however, that a lot of the time I’m at a bit of a loss for words.  I think that I’m likely to post a lot more often if I allow myself simply to post a photograph from the day.  Maybe a few words, or a whole post, but maybe just a picture.  And perhaps I’ll make it so that the picture itself is a link to a gallery of photos from the day.  There won’t be any tags, or any favorite-ing..  any way to comment on individual photos..  (sadly there won’t be a way for me to follow other people’s lives the way I did on flickr, either!)   But there WILL be a nice clean environment to look at pictures, and I hope you will.

Thank you, as always, for being an audience.  For witnessing what I feel has been a most beautiful and lucky life that continues to unfold in magical ways before my very eyes!

When we were younger

 

 

Hill and Ez

Hillary Caldwell is the light of my life and the fire of my loins (whatever dazed, confused fire is left in them!) and it’s hardly inappropriate to misappropriate Nabokov in telling the story because, while she wasn’t 12, she WAS just 22 when I first met her!  She was a student of mine, but we both like to point out that she was also a colleague.  We both worked at the same dance studio.  I taught, and she worked in the theater.  She took my class regularly, though, and from the very first time she stood out to me (in a room of 30 or so), not because she was beautiful (someone pointed that out to me later*) and not because she was such a good dancer (her body was not the sort that took to my particular form of torture; “bareknuckle downtown dance” a fast paced, athletic, acrobatic way of moving with as much time spent on hands as on feet, which was my little revenge on all those dancers I’d embarrassed myself in front of in college with their elegant long flexible limbs and their obsession with standing on their tippy-toes!).  It was because she laughed at my jokes.

In a room of 30, she was the only on whose brain had the extra capacity to not only do the convoluted things I was asking them to do, but to actually listen at the same time (two boldly split infinitives.. to boldly split infinitives..).  Or maybe she was just the only one who thought I was funny.   Either way I was a little smitten (a little smut?).

I was a straight male dancer and on top of it, a teacher.  I was recently single, after being with someone for a very long time.  I was in a bit of a fish bowl.  Anything I did was going to be under scrutiny.  Whether it would be seen as an office romance, OR a teacher dating a student, there’s no way that it wasn’t going to be met with a certain degree of scandal.  So.  It never even crossed my mind as a possibility.  Honestly.

*I used to take photographs while I taught.  I remember scanning negatives one day and seeing a picture of Hill.  I have no recollection of who it was in the room with me, but when I said, “Gosh..   She’s sort of pretty.. ,” the response was something to the effect of, “No shit, Sherlock..”  Her mind..  her presence..  struck me immediately, in that first class she took with me.  But, that I found her attractive and that I wanted to be near her all the time, were things that sort of dawned on me..  slowly, over a period of 6 months or so.

She lived on City Island (Look it up on google maps.. it’ll blow your mind), in a tiny little shack.  She made barely enough money to get by and she had a two hour commute to and from work.  I had Sunday night dinners in those days..  Students would come and eat at my house, mostly international students who I felt would benefit from a sense of community like that.  Hill would come to those dinners and she tells me that it was the one time during the week that she got to eat meat, because she couldn’t afford it the rest of the time.

I’m going to leave parts of the story out, to avoid embarrassing myself too much (these are the parts of the story that Hill loves to tell), but skip forward a little and Hill had moved to Harlem.  Not so far from my house.  She would stop by for coffee in the morning before heading in to work.   We started having lunch together when we both had the time. (It was during this period that my mother met her one day.  She wrinkled her nose at me and shook her head..  “too young, Ezra!”  She’s been grateful ever since that in this particular instance I ignored her).  I had no game at all.  I had been with the same person for the last six years, and was lousy at flirting.  I remember, during one of those lunches, saying, “You know..  I’m actually quite a catch.  Someone ought to just snatch me up and marry me!”  and another time suggesting that there were probably a lot of rumors going around in the dance world about how maybe we were dating, and wouldn’t it be funny if we just called their bluff and DID!  I sucked at this.

But she fell for it.  One day, we shared an octopus salad.  We had a little time before we both had to be at work and we went back to my house and somehow ended up on my bed for a short siesta.  We kissed (on the lips!) and we have been together ever since (7 years).

Today is our 4th anniversary.   Hill was with me when I was diagnosed and she didn’t blink.  I was in treatment when I asked her to marry me and she didn’t even hesitate.  When I collapsed in the park on the way home from chemotherapy, puking up anything that hadn’t already emptied out into my shit bag, simply unable to move, Hill came and found me and practically carried me back to the doc’s.

Her name comes up all the time in these posts, but it’s rare that I actually talk ABOUT her.  From the comments that you all make it seems clear enough that you know how much I love her, but it doesn’t hurt, especially not on our anniversary, to be explicit about it.

I realize now, after my stay in the hospital (hill spent every night there with me, sleeping in a chair that smelled like bleach), that for the last month or so I’ve been dealing with a steadily increasing level of pain.  Ultimately it has taken an incredible increase in pain killers to get it under control.  Now that the pain IS under control a fog has lifted from me.  Strange to be on more narcotics and feel LESS foggy.  I’m actually feeling much better than I have for quite a while.  I realize, though, just how much energy it has been taking me, unconsciously, to deal with it.  It has taken total focus, like walking on a tight-rope.  My response to any distraction, I’m afraid, has been pretty irritable.  (“DO NOT fucking distract me, you have no idea how HARD it is to do what I am doing right now!!!”).  I think that Hill has gotten the brunt of it.  I’m ashamed to think of it.  As with all things, she has remained ever tolerant and understanding.  She takes it all in stride.  To me, my wife is like the sunshine and I love her more than I can describe.  I thought you all should know.

 

 

At home now

 

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“So then, it wasn’t just in my head?  There was a reason that I was in such pain?”

On thursday, the day after our twilight zone wee hour visit to the radiology unit, things went a good deal more smoothly.   I was greeted outside my room by a “transporter” with a gurney..  I asked if I could help her push it somewhere. It took her a second to get the joke. I’m not sure if she had realized right away that I was even the patient.  I climbed on dutifully and was wheeled down to that same room where at two o’clock that morning after waiting an hour with no explanations for the wait (they HAD woken us up at one o’clock saying to come down, that the were READY) I had turned to hill and said, “Let’s just stand up and walk out of here.  I know the way back.  I’ll bet you they don’t even notice.”  And they hadn’t, at least not for 15 minutes or so.  And this was impressive since we had been the only people there.  We’d had enough time to find our way back up to our room, brush our teeth, get re-connected to the IV drip, and crawl back into bed, when the guy working in reception down in radiology burst into our room and sputtered something like, “Where did you GO!!??”  I waited for the next question.  That one had sounded smarter in his head.

In the light of day, though, I was wheeled in and greeted by a short string of hospital higher ups who pressed my hand and apologized about the events of the night before.  Somehow everyone seemed to have heard the story.  I was in and out of there in 15 minutes flat.  A little later that day they had thrown in another forearm X-ray for good measure.

The entire staff of the palliative care unit was top notch.  None of them over sentimental, but all with a sort of bedside manner that after 5 years dealing with this disease I had simply begun to believe didn’t exist in modern medicine..  Just that strangely rare ability for natural human connection.  It was our N.P. Julia who came in Thursday evening to discuss results with us.

“Ok.  So.  Let’s start with the arm.”

Hill and I had both realized in that moment that the CT scan news wasn’t going to be good.  The arm, it turns out, had done a bit of healing since the week before.  It was showing some buildup of callous around the displacement that hadn’t been present in the X-ray taken directly after being man-handled by that nice lady the previous tuesday.  Draw whatever conclusions you care to.  The consensus seems to be that it is more or less on a path to healing at this point, and that if I wear a splint ALL THE TIME it will probably get there.  That the displacement isn’t going to cause any real problems.  Plating it MAY be a possibility. Pretty clear though, that whatever I do the clock more or less re-sets to day 1 on getting healed up enough to ride mountain bikes again.  Given the rate at which my level of fatigue has been increasing, it’s hard for me to imagine that 6 weeks from now I’ll have enough left in the tank to swing a leg over.  This is hard to swallow.

“And the CT scan?”  Julia’s eye’s got a bit misty.  “Not good, huh?”

“No.  I’m sorry..  It’s bad.  They found more tumors.”

They had only done a scan of my pelvis.  I’m new to this palliative care model.  It was only a week ago that I had my first meeting with a palliative care doc (and now this morning I’m having my first meeting with a member of my hospice care team..  things are moving fast).  It seems that it’s not really the M.O. of palliative care to go looking for tumors.  they had deliberated about whether or not to do a CT scan at all.  In the end I think that they had decided they would (partly) because I seemed to be in such good shape that they believed they’d find some other reason for this sudden onset of ramped up pain.  And also, perhaps, because from the moment I walked in I had demonstrated a certain level of curiosity about, and maybe understanding of, the issues at play.  During the initial interview while I was giving them my medical history, one of the docs interrupted me and said, “did you go to medical school?”  In the end, I guess they decided that even in the worse case scenario they weren’t going to discover anything that I wouldn’t want to know about.  They had figured me out pretty fast.

There is a large tumor at the site of the original primary.  There are several more smaller tumors, semi attached to that one, in the lower right portion of my pelvis.  There is evidence that local lymph nodes are involved.  All of this since a PETCT in November that showed no activity in the pelvis at all (much to the surprise of my doc at the time, who felt that the simplest explanation for phantom asshole “cancer” pain was a local recurrence and NOT the metastasis shown by the scan at the time).  In other words, things are moving quickly.  At least one of the tumors in my pelvis is showing necrosis at the center, which can be caused by growth so rapid that the body can’t generate blood supply to the tissue fast enough to keep it alive.

“So then, it wasn’t just in my head?  There was a reason that I was in such pain?”

“Anyone with THAT scan would be in excruciating pain..”

The dose of narcotics that they had me on in the hospital to manage the pain was roughly 6 times what I had been taking leading up to last tuesday when my pain suddenly spiked.  One of the docs suggested that this could well have been a straw that broke the camel’s back type scenario.  That perhaps I had been managing to live with an ever increasing level of pain for quite a while, and that suddenly one day it had just reached, by another small increment, a level where I could no longer cope with it.. and was suddenly FEELING the full brunt of it.  So that suddenly it felt like something on completely different scale.  Sadly, it seems that it’s pretty hard to un-ring that bell.  They have switched me to a fentanyl patch with dilaudid for break through pain both at doses that probably would have put me in coma 6 months ago.  Between the switch in medication and I guess just the emotional toll of my stay at the hospital, I’m left feeling pretty frail.  I hardly recognize myself.

“So.  Docs.  I know it’s a terrible question to have to answer.. and maybe a pretty difficult one, but just for the sake of planning..  logistics..  what sort of time do you suppose I’ve got left?”

“Weeks to months.”