Monday, May 05, 2008

the prometheus panel

This has gone on so long now I feel like a 7-year-old who has decided to see how many grapes they can fit in their mouth without out choking on them or spitting them out. Time to launch them across the room before my face gets stuck this way, that is, silent/blogless.

The weekend prior to the most major surgery to date, Michael wanted to take us out for some explorings as it seemed unlikely I would be very mobile for some weeks to come. Unfortunately it was a rather dismal and drizzly day but we sallied forth towards the mecca of oddities that is Delaware. Revisiting some of the places Apricot Nancy had taken Shanners and myself some months before. We were on the hunt for a new untouched abandonedments, passing on quite a few that were out in the open. The daylight was waning and the weather had just cleared when on a whim we turned down a side road. And only a moment's drive down the road, we found IT.

pastoral
pastoral © Laura Kicey. All Rights Reserved.

There is a long, organic list of conditions that need to be met in order to follow through with infiltration once a site has been located. It was immediately obvious that this house totally fit the bill. The smidgen of light left in the day helped guide the old man mobile down the drive and behind the house. There was an occupied house next door but the trees and outbuildings created a sufficient screen. We crept in through the open back door, met with piles of furniture, animal feces, papers, books, tools and mysterious scraps.
It appeared to have been abandoned in the early 80s.

tidal pool
tidal pool © Laura Kicey. All Rights Reserved.

The growing dark and insurmountable mountains of stuff made it impossible to get a better picture of why it had been abandoned. The upstairs was fairly barren. We meandered around the outside a bit and Michael wandered off to the side of the house nearest the residence next door.

hibiscus tea
hibiscus tea © Laura Kicey. All Rights Reserved.

I cringed as I heard a distant kid's voice saying '...man taking photos over there...' followed by the sudden reappearance of Michael making a beeline for the car. Hurriedly we drove off, hearts racing, into the dreary Felton sunset.

thrush
thrush © Laura Kicey. All Rights Reserved.

Having just returned from a nearly three hour consultation with my now seventh doctor, I am feeling a bit weak of body and spirit. The last month has been filled with so much hope, disappointment and anxiety, it seems I am running out of room. I'm managed to avoid documenting this all photographically for the most part, and while it feels unnatural to not do so, there is nothing beautiful about this process. I don't want to be reminded of it when I don't have to be. And I don't want to hold on to it for posterity. There is something to be said for knowing and experiencing these particular pains and heartbreaks, but honestly I wouldn't want to share them with anyone, not even my worst enemy.

Tax day, 2008. Michael came to collect me, weary and hungry, for the surgery that was to fix me, in one month's time. It was to be the biologic cork in my hole. It is unsettling when you arrive at the hospital and not only do you recognize the nurses and staff, but they recognize you and they can say without uncertainty, well you know the drill. Some fears were brewing over the new approach to anaesthesia - the spinal. Especially after the Nurse Anaesthetist had to try 3 or 4 times to just get my IV started... the idea of someone poking an uncertain needle in my spine coiled me into a tight ball of nerves I did my best not to show. The Butcher was his usual jovial, hopefully self even as I turned his handshake into a stressball while being unsuccessfully stabbed in the opposite hand.

The last thing I recall was wheeling into the OR, chatting with the nurses and assistants, being leaned over a pillow and injected in the back. They said I would have to lay down but I don't remember that at all. When I came to, I heard nurses talking about Vegas and I started to talk about going to Vegas in March and how nice it was. And I looked up and saw The Butcher with his chile pepper surgical cap on and started asking him about spicy food and where he likes to eat Korean cos there is a good one in North Wales. He prefers Thai.

Sitting in recovery, I snarfed massive quantities of saltines and ginger ale and wondered at the logistics of how my feet felt like they itched when they felt nothing at all. The nurse would periodically come over and poke me in the stomach and legs to see how much of my feeling was returning. I had the overwhelming urge to prop my knees up for quite some time, but was unable to move or feel anything from the waist down. In turn I would rub my legs to see if I felt anything. After an hour I rub my left lef with my knuckles and bizarrely my right leg spasmed. And again. It was terrifying, frustrating and oddly exciting. The feeling returning was prickly, tight and completely alien. Apparently the hips feeling returns even after the toes, so while I could move and feel my feet and legs, I wasn't allowed to stand up for quite some time. It took some three hours before I was walkable and released into the strong arms of The Michael.

We pranced around Rite Aid, me still post-op giddy, collecting high fiber nibbles and painkillers and antiobiotics. Michael had arranged for my mostly immobilized self to spend the next day and a half in his bed. Fulfilling my every whim and craving for Fluffy brand buttered egg noodles. Though we ended up talking too much to sleep, I managed to avoid the post-operative fanatic weepies and barfing for quite some time. When I was finally feeling strong enough the evening of the day following surgery... I was craving something other than cheerios and saltines... we made the ill-advised decision to drive to South Philly for some falafel. My stomach's ease had been waxing and waning all day but somehow this seemed like a good idea. Approximately 2 minutes after consuming the falafel, sitting in the car, I knew this would not end well. Attempting to race against my stomach, hurtling down 76, the falafel returned in its full glory, not 15 minutes after I put it away.

With this glowing testimonial, I can say Bitar's, you suck and you make me puke. Maoz, however has AMAZING falafel and an impressive pickly-salady-fixins bar that makes mouths happy. That came later.

The Butcher gave me a timeline of about four weeks of being gentle, no acrobatics, exercise or exertion so I wouldn't bust my cork out. This seemed manageable. The drugs were working to knock out the pain for the most part. I went back to work and didn't have any embarrassing events including but not limited to falling asleep in inappropriate places. I was uncertain, however, that it would work. I followed the rules laid out... despite the threats made by the Butcher that I shouldn't return to work at all that week. I felt pretty good... considering.

The following week I had a bit of a freak out and visited the Butcher... who still seemed optimistic despite my concerns and what seemed like stitches coming loose....


hungers
hungers © Laura Kicey. All Rights Reserved.

In an attempt to get out for an airing two weeks after surgery, Michael drove us to Quakertown to visit Qmart and browse. Afterwards, while attempting to get lost in Bucks county/find abandoned houses, we stumbled upon Henry Mercer's architectural oddity, The Moravian Tile Works in Doylestown. We half-assedly took the tour, dispensing with guides and videos, in order to to free ourselves of tour group photo-obstructions. It was right around this time that something inside fully gave way.


kiln
kiln © Laura Kicey. All Rights Reserved.

Over the next five days I became increasingly certain that the surgery had failed. The signs were all too clear for me to ignore. My next follow up with the Butcher confirmed my fear and he admitted that when he saw me last he thought it was going to fail as well. He said he had consulted with a gastroenterologist colleague of his and Dr. GE said that he has never seen this sort of persistence of this condition without the presence of Crohn's, especially someone at my age. Butcher said he wanted me to go see Dr. GE, who would run some blood tests and possibly have me swallow a little pill camera, which in all honesty is about the most exciting thing I have heard EVER, with respect to my health at large.

So about three hours ago I returned from my nearly three hour consultation with Dr. Bert, the GE. Most of that time was spent with the scheduling girl who waded through paperwork, codes, diagnoses, time slots, preps, directions, scrips and phone calls. Dr. Bert and his assistant both seem quite certain I have Crohn's, its just a matter of locating it in my digestive system. Since my tests from the fall didn't show any signs, they think it might be higher up, perhaps in my stomach or upper portion of my small intestines. The coming week alone I will be visiting the hospital 3 times. In order, I am having a specialized pelvic CT scan... which involves a short fast and a barium milkshake, followed by a slew of blood tests including an insanely expensive uninsured super-proprietary test that screens for certain antibodies present with Crohn's, Colitis, and Inflammatory Bowel, called The Prometheus Panel. Which, considering it costs just short of $500, should also predict my future (at least for the next year) and take me out to dinner and a movie.

Manners, dude! Not a cheap date. Man.

disintegration
disintegration © Laura Kicey. All Rights Reserved.

At the end of the next week I will have another procedure with Dr. Butcher for comfort's sake... Thankfully he says I will be needing neither a spinal nor full-on anaesthesia this time... only a local and some sedation. The next week holds the upper endoscopy.... not unlike an inverted colonoscopy, I should be out for this one they say! But that is what they said about the colonoscopy and I have some trust issues with anaethesiologists.

After my last appointment with the Butcher, I told Michael I wanted to throw caution to the wind a little since I was officially rebroken... there was technically nothing I couldn't do, for the time being. So, what, you ask, had been missing? Well... cheese. I demanded white pizza. And mojitos. And exercise. All of which I enjoyed to excess for a short window of time... until it became too painful. Exercising control once more.


On an eavesdropped tip from the doctor's office we thought a trip to the Cowtown flea market in the Jerz would be a pleasant afternoon jaunt. In under an hour we were deeply into the greenest pastures of NJ, admiring distantly some choice abandoned houses while negotiating the windy roads to Pilesgove. Curiously we entered the township of Pilesgrove, continued along the road, entered another town, and then reentered Pilesgrove, this happened at a number of different places... stopping to ask directions twice, a total of 5 attempts were made before we were able to successfully infiltrate the vortex that is Pilesgrove.

After the Cowtown experience, one wishes it was a little better hidden. Though I haven't been flea marketing for very long, I have a fair knowledge of what to expect as far as what is normally sold at them, the backwoodsy population frequenting them, and the general precautions to take. With the promise of a rodeo and a livestock auction, we thought we knew what we were getting into. Alas. It was more like we got dumped on a street corner in North Philly. I have never been afraid of getting mugged at a flea market. Until now. None of the usual tables of people selling odds and ends antiquities and second hand clothes. The stalls sold only copious bling (including enormous jewelled skull belt buckles that were really tempting), discount perfume, stripper-wear, cellphone jackets, mexican music, used VHS videos, porn, and candy. Holy ghetto batman. When I made the mistake of wandering from Michael's side for a moment, some guy with a horrifying gericurl sidled up next to me, rubbing his chest suggestively and gaped at my tits much to the horror of Michael who had fallen mere steps behind. After maybe 45 minutes, we made a run back to PA trying to piece together the hows and whys of Cowtown. There weren't anything but farms for miles around... its very existence seemed improbable at best. We both have decided we dreamed (nightmared really) the whole thing.

alison leans the kills @ johnny brendas
alison leans the kills @ johnny brendas © Laura Kicey. All Rights Reserved.


That evening Johnny Brendas welcomed The Kills to the stage... and for the first time in many months I decided to go to a show. Michael was covering it for work and invited me along to make the evening a bit more enjoyable. My only exposure to The Kills was by way of his show preview written some time before... I wasn't sure what to expect but I was pleasantly surprised. They are rather like PJ Harvey with jaggedy electronica edges. And they made me want to moan and move in ways inappropriate for public consumption.

smoke machine  the kills @ johnny brendas
smoke machine the kills @ johnny brendas © Laura Kicey. All Rights Reserved.

Well. Glad to have gotten that out of my system. I should purge the thoughts more often. I am still having some trouble wrapping my head around what will be come of me the next few weeks. The tests will point to how my problem will be treated but I currently am without a timeline as to when I will be 'fixed' yet again.


interior life
interior life © Laura Kicey. All Rights Reserved.

And if I do have Crohn's, that, separate from my other malady, is a forever sort of thing. It brings up questions that I am not ready to answer or consider about my professional life. It makes my head hurt and my stomach ache. I have a lot to process. I wish it were all just photographs. They're ever so much easier to process.

NOTE For those of you in the Philadelphia area, Ms. Shanners is going to have some things she has worked on for sale at a new boutique, including a revamped gossip bench, vintage trays, a clock and prints. Expect coasters, pocket mirrors and more functional art to be available both at Bohema and in her youwannatalkjive Etsy shop by the end of the month! Details on the opening follow:

Please come to the pre-opening of Bohema Artisan and Vintage Boutique on Friday, May 9th from 6-10pm. The store's official opening will be on Saturday, May 10th, so be sure to check it out if you're in the area!

The location of the boutique is:
6152 Ridge Avenue, Philadelphia, PA 19128

There will be hors d'oeuvres, cocktails and guests can mingle with the artists featured in the shop. The boutique is a mixture of old and new, with quality vintage as well as new merchandise, mainly hand-made by local artists and marketed to women. I'll be there, so don't hesitate to stop by and indulge in free cheese cubes with me!

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4 Comments:

Anonymous Shannon said...

can i just say that i was seriously going through laura blogging withdrawal? that being said, i'm here whenever you need a dose of happiness, whether it's in watermelon or robert downey (note the lack of "jr.") form.

ALSO, i think you are just about the sweetest little thing for including that note about my silly boutique opening! you sure do know how to make a girl feel special :)

thank you xoxo

9:18 PM, May 06, 2008  
Anonymous Dustin said...

I've met someone recently who had been diagnosed with Crohn's last summer; she takes medication and avoids caffeine and cheese. Otherwise, she lives a normal life as long as she keeps a diet that isn't malicious. And I do know how you enjoy the foods that antagonize the senses.

I truly hope you make it through all of this in one piece. If anyone does, it's you.

3:43 PM, May 08, 2008  
Blogger helveticaneue said...

thanks, both of you.

4:22 PM, May 08, 2008  
Anonymous shannon said...

hey sweets,

thanks again for coming out tonight. people actually showed up after you guys left, so yay to customers! haha. i ended up buying two dresses because i'm bad like that. apologize to your man for my mumbling, it's just a shy/nervous habit hehe. i was like *mumble mumble* and he'd be like "pardon?" and i'd be like *mumble mumble spazz*

yep.

anyway, i just wanted to say thanks again for coming out even though no one was there annnnnnd for the fabulous biznatch card design.

i hope you guys have an awesome weekend :)

10:00 PM, May 09, 2008  

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