Fighting Back With What Little I Have Left

As anyone who has read this blog even once since September knows, my life has had its share of ups and downs. In the past week I have been poked, prodded, sampled, tested, wired,... all in the name of figuring out why I suffer from extreme fatigue during the day, and why I can't stay asleep at night.

After seeing my cardiologist 5 times in May, he (and my GP) suggested emphatically, that I get a sleep study done. They both were concerned about sleep apnea. Guess what? Sleep apnea kills. It can kill you quick by allowing you to fall asleep at the wheel (which I do almost everytime I drive into Ithaca) or it can do it slowly by trashing your blood pressure, adrenal system and your immune system.

I did the sleep study on Wednesday night. I won't share with you all that I have learned since then only because I am still processing it. None of it was good news. Yesterday my GP called me at home on a Saturday to let me know that my last round of blood-sugar tests came back. Looks like diabetes wants to play too.







I have tried to stay upbeat through this recovery. I have tried to keep my head up, focus on the healing and I have kept myself optimistic by reassuring myself that soon everything would be fine. I guess "soon" means different things now than it used to. So, we fix the sleep apnea (I hope to be fitted for a CPAP as early as next Thursday), then we deal with the huge weight gain since January. See if that kicks the shit out of the diabetes. If so, sometime in September, we re-run some of these heart tests and see if we can keep this body of mine from stroking out. Wish me luck till then! Here's hoping there is a night of solid sleep on my horizon. It's been seven months without a single solid night of sleep. I think they call this torture.



I guess the final question must be: What's with all the freakin' flowers if life sucks so bad? Well... if I can't jump in my kayak (abs are too destroyed and the hernia is too fragile), and I can't make pots in any serious manner... well... the options get fewer. I can sit around the house and dose myself with food, pain killers and boredom.... or I can find beauty around my yard. If I can catch even a glimpse of that gorgeous light once or twice a day, then it feels like something positive has come from the doing.

This weekend I had a chance to take pictures of Aurora with alternating grandparents. First her maternal grandmother on Friday and then Nancy's folks came over on Saturday. (That will likely be tomorrow's post.) I love working with portraiture. I find it extraordinarily difficult, but if I can make just one great image, I feel like it was worth the work. Anyone feel like they want to sit for a portrait anytime soon? Seriously. I need subjects who are willing to sit for 45min to an hour. If you're willing, I would love to give it a whirl. Location of your choosing. We can do it in the coffee shop, the gardens, the woods, the lakeside... just about anywhere you desire.

With that said... perhaps that explains a little more about why I shoot flowers. They are available when everyone else is either at school or at work. They will hold still for an hour so I can bend the light to catch just the right sparkle. And maybe, once in a while, they capture something human.

So what's cookin' ?

We had an awesome firing this week. Took a lot longer to clean things up than it used to, but it added lots more pots to already full shelves. So, rather than bore you with more words, let's SEE SOME POTS!

In Times of Green

In the past week, we have watched our garden race from the early Spring yellows and pinks, headlong into the heat of Summer with rich purples and thick greens. It got hot and humid all at once last week. We went from being able to work in the garden all day, straight into that time where even early in the morning it was just too sticky. So, when you can't be out weeding, the camera calls instead!

My birthday came early this year as my camera gear bag increased by way of a Hoodman Loupe. If you have ever despaired from having assumed you had the perfect exposure while looking down into your LCD on the back of your camera in full daylight only to get home and realize you blew it. Your highlights are big splotchy white blobs and your shadows are clumpy. Yeah, and nothing's in focus. Shit happens right? Well.... this loupe allows you to block out almost all the light hitting your LCD so you can focus on the image at hand. You can see the detail of focus. You can zoom in and really look at pixels if need be. Most importantly though is that you can really examine the image without trying to block incoming light from driving you nuts with glare. I had a blast playing with it today. TOO much fun. Built to last a long while.

Having been clued into their website by numerous photographers, I took a gander at their right-angle viewfinder. Yeah, I would be able to simply look down and not have to crane my neck when shooting below my waist or off a tripod when shooting plants and such. I guess this will have to wait till we see sales pick up in a few more weeks. Here's hoping Memorial Day weekend is wonderful, busy and fun.

Some Friends Help

And some friends help hide the body parts.

Marc is one of those guys.

He may be the most squeamish chickenshit in the room, but when I was tied to every fuckin' hose in the ICU, he was there. When my body was blown up to twice its normal size and wires and IVs were coming out of every orifice... he was there.

Every bone in his body said flee! but he came anyway.

When I started coming out of the coma, I was hooked to a trach-tube. That meant my mouth was open and suffering from chronic cotton-mouth. Due to the tracheostomy and the other abdominal surgeries, the nurses wouldn't let me drink until I had passed the swallow test. The "bedside" version of this test requires the patient to swallow applesauce doped with mega-blue dye. Then they ask you to cough. If the blue dye ends up anywhere other than DOWN your throat, then no solid foods, ice, water, etc.

I began my swallow testing while Marc and Carol came to visit. I wasn't uncomfortable, but I really wanted something to drink. I was stoned out of my mind on Fentanyl and other narcotics of the day. Meanwhile Marc kept making jokes about ArtTrail and offering to go "help" with customers.

I wanted to laugh so hard, but the drugs kept me nearly paralyzed. Even now, remembering that moment, I can hear the laughing in my mind, knowing full well I couldn't tell Marc how funny he was. Thank God for good friends. Each and every time Marc and Carol showed up, everything in my world improved.

Yesterday Marc surprised me by just showing up to check up on me. After talking indoors for a while about all my current maladies and general feelings of malaise, we went outside into some seriously shocking sunshine. I had to catch a few images of Marc kickin' back with the alliums.

Coma Dream #3 - Landing the Planes

Though these dreams probably flew through my mind in some order of disarray, I can no longer say which ones came first. If I had to guess, I would say they all happened simultaneously. Especially in light of how so many of them overlap in odd ways. Seriously, when asked to recollect which order these dreams happened, I am always at a loss. Some of them repeated multiple times. (We'll get to those sometime soon... kinda scary.) With that said, here is installment #3- Landing the Planes.

It is sometime post-war, probably late 1948 or so. I am stationed on a Marine air base somewhere in the Pacific Ocean, fairly near Japan. I know this because my job is to help land airplanes all day (and sometimes into the evening). The planes are predominantly Vought F4U Corsairs. Long and blue, with those beautiful bent wings. And the sound of their engines howling as they screamed at take off!

courtesy of Aviation History.com

In this dream, my job is to establish radio contact with incoming airplanes and guide them back home. Most of the time this is proves to be fairly mundane. There are usually four to six of us manning the radio in shifts with two to three of us glassing the horizon, looking long for that broken wing silhouette.

Most aircraft at this time were not adequately equipped for nighttime landings. Without radar, it was even more difficult to land six to ten aircraft in short order at night. On this night, it was made nearly impossible with a fog that came in before dinner. The flight was late returning. Six planes coming back from Okinawa. Due in over half an hour earlier, we knew that the fog was delaying their arrival.

We asked the ground crew to prepare searchlights, but their beams couldn't penetrate the fog. For all their effort, only a dull glow reached through the fog. The woman who I was sharing the shift with suggested aiming the search beams low, almost parallel to the runways. Our hope was that then the runways would be lit up and more visible from the air.

When the rain began it was more of a wet mist first. It didn't take long though before none of us could see more than 100 yards or so along the runway... and that was with the help of the search lights. The tension on the ground was palpable. Each of us had somewhere they would much rather have been, only because worry had surpassed reason. Something was amiss and there was nothing we could do.

After what seemed like hours, the radio let loose the first crackle that didn't end in static. Numbers were squawked out, repeated and new coordinates relayed. Six times we traded this information until we knew each pilot could see our blur of light winking in the soggy wet. With sighs and relief we each surrendered our headphones and unplugged from our panels.

Walking down the stairs, I asked the woman beside me what she was hurrying off to. Looking like a teenager off to prom she laughed and let on as how she was going to a concert. Around me the room changed from air station to a space more akin to a waiting room in a large airport. She fell in line behind a crowd waiting to leave the terminal. Waiting there, I had to ask: what sort of music would they be playing at this concert. Punk music of course! Curious, I asked how she knew anything about punk music. She explained that the lead singer of the band was a friend of a friend, and he had invented a bionic knee device. I asked her if they were any good and she laughed. She said she was their biggest fan. Then the line opened up and with nothing more said, she was off into the night.

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At first glance this dream seems to make sense (until the punk-rock concert goer rears her head)...

Reality:
I told my mom about this dream, since my memory of this coma dream puts her into the dream as it transitions from the air station to the waiting room/airport scene. As I related this story to her, she started to stutter. I decided to jump straight in and ask: Did you leave me at the hospital to go to a punk rock concert? Yep. And yes, the lead singer in the band happens to have invented a knee-replacement device which borders on science fiction. Very cutting edge. They have just released their newest album and guess what's on the back of the closing liner notes? "Dedicated to our biggest fan: Candace" (That's my mom for ya.)

Apparently though, that wasn't what had left my mother so speechless. Her concern was that I had never met my great-aunt Sally. My maternal grandfather was the youngest of ten siblings and the only male. From my grandfather I knew little bits and pieces about his sisters. I spent parts of my summers in Wyoming getting to know my great aunts Louise, Winnie and Ollie. But I never got to meet Aunt Sally.

The little I knew about her was that she had lived overseas. I think most of her adult life had been spent in and around Japan. Once she sent us a lamp in the shape of an owl, made from a tank shell casing from World War II... left behind in Okinawa. Some part of me always thought that it could have been fired from my grandfather's amphibious tank he crewed during the invasion of Okinawa.

What I didn't know about Aunt Sally was that she used to land airplanes. In the Pacific... around Japan, for years following the conclusion of the war. She landed Vought Corsairs. And according to my mother, women were often used because their voices came through the radio more clearly and their eyes more easily spotted the broken wing pattern against the sea and sky.

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Other thoughts:
I have no idea how any of this could have entered into my dreams. Ideas? Has anyone read about this sort of thing? There is more to come. Maybe later in the week.

Wrestling With Cleveland

My, what big teeth you have Cleveland!

I have been wrestling with the repercussions of having driven to the Cleveland Clinic last week. To say that my thoughts have been a little preoccupied the past few days would be an understatement. Before I delve into the morass, let me share the fun stuff.

After Aurora got home from school Tuesday afternoon, we loaded up the van and headed out. Driving headlong into the sun for the better part of four hours left us pretty beat so when it came time to take a break for dinner we were both more than ready. Watching the sun set over Great Lake Erie was something neither of us had seen before.

With a few more hours behind the wheel, we rolled into Cleveland wicked tired and ready to flop. Rummaging through our pile of maps and printouts and directions, we figured out how we were supposed to find the Cleveland Clinic Guesthouse. I had expected parking to be a four letter word with such an enormous medical complex. Someone else must have had the same concern, because there was parking by the bucket!

Before Aurora and I could do more than flip through a couple stations, we were out like a light. Click. Next morning found us sitting in the waiting room of the Digestive/Intestinal Diseases Department. I figured based on the alliteration alone, we were doomed. Hardly. Turns out, they rock!

An hour and a half later, we walked out. My head was more confused than ever. Might have been a product of having the nurses actually listen to what I was saying. Or it could have been all the different surgical scenarios the surgeon laid out. (HINT: For those of you who are even the least bit squeamish, this is a great stopping point)

Let's skip to the good stuff. Turns out, I am a candidate for a reversal. What does this mean? Well, for all intents and purposes, it means that I could rid myself of this colostomy bag and have my plumbing reconnected the way it was intended. In talking with this amazing surgeon though, I came to learn that this surgery is going to be far more complicated than I was led to believe.

Here are the surgical options:
Scenario One: We reconnect what is left of the large intestine to the rectum. Sounds easy right? Not quite. Due to the peritonitis and sepsis, there is a ton of scar tissue throughout the abdominal cavity. The intestines are essentially adhering not only to themselves but also to other organs. This means that they wont stretch nicely or unroll like they would have prior to the first surgery. As a result, he may have to move a huge array of blood vessels that are in the way of bringing the large intestine over the front of the abdomen. Probably a six hour surgery with the potential for some hairy scary complications.

Scenario Two: Take a loop of small intestine and make an illeostomy out of it. Since the waste stream would end there, he could then put the large intestine wherever he wants, and could then hook up the rectum and the large intestine without pulling on everything. This would require two surgeries separated by about six months to a year. More bags dangling off the belly and more chances of herniation.

Scenario Three: This was sort of a last resort solution and one that fills me with the greatest dread. Skip the large intestine completely and go straight from the small intestine to the rectum. For anyone who has ever had Anatomy 101, the function of the large intestine is primarily to de-water stool. What this means in terms of the surgery is that I would have liquid bowel movements six to 14 times each day. With very little control over them. In other words I would be a prime candidate for starring in a Depends commercial.

And then came the caveat: He wouldn't do any surgery until I had lost 50 pounds. Tentatively, he thinks we can do the surgery in September... that's four months. Fifty pounds. Sure. Cake, right? Oy veh.

After leaving the surgeon's office, Aurora and I went to the Cleveland Museum of Natural History. I guess I have never thought much about Cleveland's academic, cultural and cerebral offerings. Lo and behold, it's a pretty snazzy place! The area that surrounds the Natural History Museum, also encompasses the Cleveland Art Institute, the Museum of Fine Art, the Botanical Gardens and a LOT more. Aurora was in seventh heaven.



She got to see fossils of all sorts of dinosaurs including tyrannosaurus rex, a nano-tyrannosaur, triceratops, smilodon (saber toothed tiger), Lucy, dunkeleostus (armored fish), and way more than I can remember. It would have been the perfect way to spend most of an afternoon, but we needed to get hurrying home. We'll save the rest of that museum for another visit.




After returning home I met with my physican to talk about my blood workup he had done before I left. In turn, I shared with him the consult with the surgeon at Cleveland Clinic. As anyone who has been keeping up with this bizarre saga on either the blog or FaceBook is aware, I have been having a devil of a time sleeping. Add to that I am now verging on narcolepsy during my "waking" hours. During a short drive to Ithaca, I find myself falling asleep at the wheel regardless of time of day. I have to have someone beside me talking to keep me engaged and awake.

So I shared these new developments with my GP, and he shared the results of the blood workup. Looks like sleep apnea (as opposed to a drug side effect which was my first assumption)... so in the next few weeks they'll be putting a CPAP machine in my bedroom. We'll see how that affects things.

The most productive concept to come from my meeting with my GP though, was the idea that maybe after having lost fifty pounds I will be more inclined NOT to have the reversal surgery. My gut will be mostly gone, and hopefully the hernia will have subsided substantially. If that ends up being the case, I can't see a good reason to continue with this reversal. We shall see. For now, we diet like madmen and exercise like crazy! We'll see where things are a month from now. Wish me luck!

Reflections on Sunday at the Rongo --- Benefit ROCKED!!!

Last Sunday was the most amazing gathering of friends, acquaintances, raconteurs, musicians, and family I have ever experienced. More than two HUNDRED people descended on the Rongovian Embassy to the United States (The Rongo!) for an amazing afternoon fundraiser. All of this insanity was organized by the coolest potter I have ever had the pleasure to know, Mary Ellen Salmon. Not only did she find accomplices (Wendy, Carol, Dorothy, Vanessa) to join her in this effort... she made it look like she had done it a hundred times. We had fabulous music from Kate and Nate, The Yardvarks and some wicked jazz by Rick Urda and his band.



I have been to shows at the Rongo and found the place hot, crowded, cramped, but always hopping. This Sunday was no exception. It was just jumping! We had folks standing outside, waiting to get in before everything got underway... and we had folks sticking around to cleanup long after the Yardvarks had put away all their equipment.

So many artists donated artwork that I don't even know where to begin. Everything from pottery looking like birch bark to enormous gorgeous prints; from hand-dyed yarns to superlative watercolors. In addition to artwork, we also had B&Bs offering weekend stays, and wineries auctioning off wines via raffle. Everyone who came went home with something phenomenal!

I am still blown away. I can't find a way to express just how overwhelmed I was. I tried my hardest to say hi to everyone who came in the door, and I know I failed many times. We had so many friends and family come from out of town (and in some cases pretty darned far away!)... and we spent nowhere near enough time with anyone.

At the end of the day, when all was said and done and the last powercord was coiled up and the last table cloth folded back up, Mary Ellen and her awesome crew raised over $6000 to help offset our upcoming surgical expenses at the Cleveland Clinic. Talk about an amazing bunch!

We are here

We drove all afternoon and most of the night. Now we are waiting to meet with the surgeon. This place is huge. Imagine 35k people working at Cornell. Then imagine an additional factor of 3 or 4 to acct for patient load. This place is massive.

Finally Getting to Try Stuff

This morning I went out to the studio, and got seriously depressed. What I wanted to do was make pots. I have been wanting to make pots since getting out of the hospital. Despite a quick foray back in January, the studio has been quiet. Every time I try to throw, I am reminded (painfully) about what I can and cannot do. This herniation at the ostomy site wont simple vanish overnight. It needs to be dealt with, and that's the plan now. I miss making pots in the worst way.

I feel very lucky to have had Hannah here through March. She kept me working in the studio most weeks even if I couldn't throw pots. I could be glazing work she had thrown, or helping her get ready to load a kiln, or maybe start working on a new glaze. Now the studio is pretty quiet.

I decided today to take advantage of that quiet. I have wanted to PLAY in the studio since before my surgery. After buying all that flash photography gear, I had mountains of ideas to try. Here's the thing with flash photography... if you're doing it right, no one knows that flash was used. Some of my favorite flash images look like they were shot with daylight peeking through a window. That's what I have been craving. Gentle light, directional... but I think by starting with two lights I was more than confused about how to proceed.

Today, with just one light on a stand, shooting through a white umbrella, I took a few snapshots for a customer far-far-away. After looking at them, I thought, HEY! Why not shoot some samples from around the gallery so people can see what we have on our shelves. Not to boast, but for the first time ever, we have stockpiles of some forms. Mugs we have LOTS of. Plates we have by the bushel. We have more pots on the shelves now than we normally do before July. Not bad considering I can't make more right now! Here's hoping that we learn a lot at the Cleveland Clinic this week!!!