Saturday, September 20, 2008

the truth behind WMD--the novella

I have been reticent about putting my mystery plague into words, but the past eleven weeks have been so utterly surreal I suddenly feel I must do just that, lest there be any doubt as to the accuracy of my memories.

It's safe to say most of you know something, if not everything, about this affliction of no know origin, and its sensitive nature, and why I might hesitate to post it for all the world (read: my seven readers) to see. But whatever. I have suffered so many indignities I scarcely care if you all know that for nearly three months, I have been running a significant fever, and diarrhea that would liken me to a rocket ship. Being the busy mom I am, it took a few weeks to even notice anything was wrong, until I found myself in the bathroom one morning, crying for my mom at 4am. Literally people. She rushed over with some Immodium, and we called the doctor. Ultimately, I crashed and never made it to my appointment that day, and I assumed the worst was over. Um, can we say n-a-i-v-e?

Cut to weeks later, when I couldn't travel five feet from my bathroom, and narrowly averted several disasters trying to do simple things like shop for groceries. One particularly memorable episode involved Fred Meyer remodeling their bathrooms and providing customers with a handy portable restroom in the parking lot. Just when I had grown accustomed to this interim arrangement, I had the misfortune of having a truly dreadful emergency wherein the doors to the portable building were suddenly locked. Squirming and sweating, I sent Quinn in to ask, basically, "what the hell?" He ran back and explained that the new bathrooms were finished, and the grim reality of having to trek what felt like eight hundred miles back into the store began to dawn on me. Wasting no time, I grabbed my kids and sprinted like FloJo to the new facilities, praying that my compromised bowel would spare me what could have been the worst nightmare imaginable. After this, those close to me insisted I see my doctor, and I dutifully, though sheepishly, went in, and was greeted rather loudly by the receptionist with, "Hi Cheyenne. You're here for the diarrhea right?" Can you see how my pride has slowly eroded? The nurse, who also seemed to put quite an emphasis on the word 'diarrhea' when she called me back, discovered I had a fever too, and indicated that this combination might be pretty serious. The doctor concurred, and suddenly diagnoses like Celiac's and Crohn's disease were being bandied about. Before I let the gravity of those words sink in, my fragile and embarrassed mind was assaulted by the words 'blood test' and, sorry to say, 'stool samples.' Tempted as I am, being a wanna-be writer, to paint you a picture of this most unconscionable um, assignment, I shall spare us all, so that I don't have to unfriend every single one of you. Suffice it to say, contrary to what one may assume, it is exceedingly, achingly, possible to be completely humiliated all by one's lonesome, and with no witnesses. And let me just add that it was of little consolation to complete the task, for what follows is a skulking, pride-swallowing trek into the clinic to deposit...well, you know. Not surprisingly, the staff was rather blunt, and loud, about my purpose there, and it was all I could do not to grab one of the germ-riddled ballpoint pens provided in a cup on the counter, and rip out my jugular with it. I left. And washed my hands until they bled.

As news grew of my charming ailment, friends and family sweetly offered all forms of help and kindness. It became increasingly difficult for me to attend social functions, which naturally raised serious alarm amongst people who know that my need to be out and about is, in essence, a bottomless pit. One gathering I was determined to make was Gabrielle's art show debut. She is a brilliant craftswoman and artist, and I really needed to show my support, even if she is somewhat delinquent when it comes to promised collages (wink! love you!). Seated on the, or should I say, sunken into, the ratty couch at CHC, clutching one of the bathroom keys secretly, I was pleased when Pam took a seat next to me. She smiled, gave me a once-over, and, realizing I was still combating the illness, said, "You are a walking medical disaster." I nodded and looked down, like a dog who knows he has done wrong. I admit that despite being said with no malice whatsoever, it stung. I am known throughout the land for being the busiest person alive, manic even, and capable of accomplishing more than is humanly possible, most days. But in this moment I was reduced to what felt like a sloth. I couldn't, and still can't, get the words "walking medical disaster" out of my mind. It connotates weakness, dependency, and worst of all, burden, which I confess I have become. So the real WMD, it turns out, is me.

This wouldn't be a saga without all my gruesome samples testing negative. I didn't have a parasite, E. coli, various other toxins, or L-5128, whatever the hell that is. As relieved as I was not to have been stricken with L-5128, I was disappointed that my illness had evaded diagnosis. My doctor was equally stymied, and referred me to a gastroenterologist, which is just not good news, any way you slice it (no pun intended--you'll find out later). There are only two ways in for a gastroenterologist, and I'd sooner chew off my own feet than consent to either one. As unluck would have it, this very nice tiny little doctor informed me that he'd be exploring both, BOTH, er, entrances? Being that Chinese is his primary language, and he clearly hasn't been speaking English long, it was virtually impossible to employ my masterful repertoire of body language and wit to express my dismay and/or change his mind. He was very business-like, which was at once comforting and disturbing. "Who endeavors to practice a kind of medicine that requires becoming very acquainted with people's rectums?" I asked myself. Mind you, I was only 3 degrees less troubled by the thought of a hose being rammed down my throat. I decided to skip town, and find some quiet cave where I could suffer my fever and diarrhea in peace, with a modicum of dignity. Of course I'd just keep switching caves, to keep things sanitary. The fantasy of my new life burst when the doctor asked me which prep fluid I preferred. Now, I knew from my surgery last year (walking medical disaster) that this was NOT good news. I stammered for about three hours, which elicited absolutely no sympathy from anyone, and finally said whichever one tasted less salty. I was handed a bottle the size of a gas can, and an encouraging tip that the lemon-lime flavor packet was quite popular. Already my gut was in knots, and my appointment wasn't until November.

"November?!?!?!?" Shouted everyone in the universe. No one could believe I was being made to wait three months for my colonoscopy/upper endoscopy. I'm telling you, several people were going to storm the office, and demand that the little Chinaman insert his scope right then and there. Me, I was ambivalent. Sure I was eager to get some news, but the other part of me wanted to cement my rectum shut and hang a sign that said, "Closed for business." Turns out several events conspired to hasten this appointment. For one thing, my doctor noticed in my chart that I had lost 23 pounds in two and a half weeks. And my psychiatrist, also an MD, was growing very concerned about the delicate balance of managing my medications while I was so sick. So a few weeks ago, while I waited for three hours in Dr. D's office, she made phone calls to my psych doc and the Chinaman, and I was ordered to the hospital immediately. Do not pass go, do not collect $200. Just go. Boy, Pam had no idea how true her words were. Dr. B (psych) was absolutely adamant that I not go through the ER. You see, as my body became less and less able to absorb anything, he had to reduce several of my meds, and I was starting to experience mood instability and ocd. He felt it would send me over the edge to spend five hours in the cesspool that is the Salem Hospital ER. So I ran home to grab whatever it is one grabs for an indefinite hospital sentence, and my unwavering advocate, B, drove me to my doom. Almost instantly this became a scenario I knew I had to live long enough to blog about. Sadly, many of the details escape me. One thing that was paramount was my CONSTANT consumption of water. On a particularly bad night earlier that week, when B had called Dr. B to report that I had been crying for four hours over not having a toothbrush, his on-call colleague took down all of our information and insisted that I had neuroleptic malignant syndrome, and that water was the only thing keeping me alive. (walking medical disaster)

I was shown to my bed and put on the sheerest gown known to man, before a nice-enough nurse came in. Can I just say, her black roots, juxtaposed against her yellow hair, rendered me somewhat uneasy. Yeah, I'm judgemental like that. Straight away B asked for some water and we were absolutely floored to learn that I was not to have any until the elusive Dr. Walker was finished rounding and worked up a diet plan. "Um," B started, and I could see her trying desperately to suppress the flames that were trying to erupt from her throat. "Water is what's keeping her alive, so she really needs some right now." Unmoved by her insistence, Yellow Hair with Roots simply repeated that I was not to have water. Or food. Or my psych meds. Or an IV. Or blood draws. So what the fuck was I doing there? Yeah, that's what we wanted to know. I was supposed to be tested for neuroleptic malignant syndrome, and to make sure my Lithium wasn't making me toxic, so Dr. B could stop worrying that he was killing me, and the nurses acted as though I was merely there to partake of their top-of-the-line nightwear and 13" television, and nothing more. Each of the five nurses was less helpful than the last, and finally, after many hours, B could not contain her rage. She ORDERED them to get me some water, and by the way, when B orders you to do something, you'd better either do it, or be Carl fucking Lewis. One of the underling nurses was intimidated enough to bring me ice chips. So it could be said that for a fleeting five hour moment, I subsisted on twenty ice chips from a styrofoam cup. Not the proudest way to die, I thought, and hoped someone would have the sense and courtesy to dress up my demise for the obituary. Meanwhile, we were trying to call Dr. B, to let him know I was being denied my psych drugs, but the operator claimed that once I was admitted to the hospital, I was out of his jurisdiction, so to speak. Um, this did not bode well for B's growing ire. We asked the nurses to ask Dr. Walker, whose existence we began to doubt, to please call Dr. B, and were told, verbatim, "Dr. Walker said he's not going to make a physician consult or a diet plan for you because he doesn't want anymore on his plate." Have you ever seen a normal, beautiful, 30-yr old woman literally morph into a 18-ft long lioness? Well that's what happened. Though she managed not to kill anyone, or threaten anyone's actual life (though she did threaten their jobs, and the hospital), B was so enraged I swear to God I could see her blood boiling beneath her skin. She demanded that I be released, and let me tell you, they were practically skipping-to-my-loo to get me the hell out of there, but then one nurse mentioned that if I signed out AMA, my insurance wouldn't cover the $9,000 admittance.


Walking medical disaster.

So I was stuck. Around midnight, Dr. Fucker, I mean, Walker, sauntered in and proceeded to yell at me for circumventing the ER, and didn't even hear me when I explained that my doctors insisted I do it that way. He asked me about my parents, and wanted to know why my father died at 51. I knew I was in trouble. There's really no good answer for that. I mean, to say suicide, for instance, strips me of any credibility I may have had, but to tell the truth, which is cirrhosis, was the nail in the coffin of our doctor/patient relationship. "Yep, that's right, my father was an alcoholic." Though I didn't actually say that, the words hung in the air for a while, and I stared at him, daring him to provoke my own inner lioness. So he ordered water, what a hero, and some blood work, which they did after I finally fell asleep at 3am. They managed to blow the vein and get blood all over me. Whatever. Then more draws at 5am. I knew that 7am would bring with it a new doctor, and I didn't know whether to be glad or terrified. First I was told I may not see her at all because I was the lowest priority patient in the hospital. As morning broke, friends were texting offers to come see me, which, and I know this sounds ungrateful and irrational, really worried me because I had morning hospital face/hair. This is never good. When I had my appendectomy in '06 (walking medical disaster), and people came to visit me, I put a blanket over my head. Anyway, B and I were texting and decided I needed to get the hell out of there. They weren't actually doing anything for me, and I was at risk of Pam showing up to see my limp brassy hair and black crescents under my eyes. But part of me did want her to come, to take me home with her and give me fluids at her house, like she had done a month before, the first time Dr. D had ordered me to the hospital for dehydration. At long last, something positive happened in this whole epic, fraying yarn. Dr. Norton, the one who may never see me at all because I was just an amoeba on the underbelly of the hospital, marched in. First she complimented me for watching Frasier on tv, which I took to mean that it was clear we were intellectual equals. Then she took some history and said, "Why are you even still here? We're not doing a damned thing for you!" I could have cried, but alas, being deprived of water for gazillion hours, I had no tears. I told her how I wasn't given my meds, and how no one would call Dr. B, to which she replied that he was a very good friend of hers and she'd be calling him right away. And then she apologized, told me that I did not have neuroleptic malignant syndrome, nor Lithium toxicity, and was free to go!

Oh did I mention that all my doctors conspired to move my colonoscopy/upper endoscopy to that next Thursday? Pardon me for not putting up balloons, I just knew that procedure was going to be a debacle at best.

In the spirit of adding credence to Pam's theory, I should mention that the day before I was hospitalized, I stepped on a 3" rusty-ass nail dropped by the roofers replacing our roof. B and I spent four hours at urgent care, where I'm sure we picked up untold infections. The doctor, who I'm pretty sure had done a stint as Krusty the Clown, dug waaaay up inside the puncture wound and pulled out an inch-long piece of the flip flop I was wearing when I stepped on the damned thing. Then he tore away all the flesh and commented on how big my feet are, and ordered a tetanus shot. I am severely needle-phobic, so I began to tremble, cry, beg, and generally embarrass the hell out of B. The nurse came in, I wasted no time telling her we would forever have to be enemies, and she wasted no time responding by plunging the needle in my arm. What could I do? I fainted. (walking medical disaster)

The day after I was in the hospital, Reilly got bit by a dog twice. She's okay, but it was really scary, and there was a moment in which I actually had to weigh running so far from the bathroom to tend to her. Of course, I chanced it, and I reiterate, she's fine.

I know this is getting long but I can't help myself. Next up was prepping for my rendezvous with the Chinaman. I spent the two preceding days at B's, as well as the day after, because my kids have a hard time seeing me very sick. The first day of my stay I was to begin my fast. Naturally, they were all eating Safeway bagels, which wafted into my face tauntingly. B tried to make foods that I wouldn't enjoy, but at that point I would have eaten a rhinoceros. Alas, I made it through the starvation, but then it was time to drink THE STUFF. B, bless her heart, added the lemon-lime flavor packet, iced it down, gave me a straw, everything she could to make it better, and it still tasted like the sweat from a pig's balls. I was supposed to drink the entire gallon over two days, and after proudly, surprisingly, finishing my nighttime portion, I began to believe that I wouldn't die from it. Ha! If any of you have made it this far, you know that I was in fact going to die from it. First I was in the bathroom, which B had scrubbed to a shine and turned into a veritable colonoscopy prep haven, and threw up seven hundred gallons of saline poison into the garbage can. I then crawled to my chair and passed out. Later I awoke with a fierce need to check the locks on my car (remember I said my ocd tendencies were emerging?). Despite B's protests, I staggered down the steps, and then, five feet from my car, puked my guts right onto her roses. It was light out, and true to form, every goddamned neighbor B has was on a walk right in front of her house. I could not stop heaving, which I can only imagine delighted B to no end, and made her infinitely glad she took me in. Afterward, what remained of me did in fact check my car locks. And then I went to bed.

Thursday morning: I refused to drink anymore Nulytely. Refused. I was weak, scared, and still trying to fend off a haunting feeling that something was going to go wrong. My appointment was at 3:30 and I couldn't have any water after 12:00. That was really tough. My tongue turned to stone, and I couldn't shut up about it. "Drink your spit!" Rosie encouraged. Of course, that is what I did. Finally it was time to go, and I knew there was no way out. B and I arrived at the clinic and were told that the doctor was running an hour and a half late, and could we please just sit by the shiny new drinking fountains and not use them until he was ready. I fell asleep in my chair until the nurse came in to usher me back to the point of no return. She forced a very large needle into my arm, and I asked her all kinds of questions about being put under and staying under, etc. She assured me I'd be out cold. In the operating room, I lay on the bed, suddenly concerned that someone would see my ass, lol. I stared at the pulse/ox monitor, paying no mind to the screen next to it, which would soon be featuring my colon. The nurse asked if I could feel the shot yet. I said no. A few minutes later she asked again, and again I showed her that I was wide awake. Tears were flowing by this point. I knew there would be no la-la land for me. After the next attempt, the doctor couldn't wait, and he um, began. I could feel every inch, or should I say, foot? I knew he was cutting pieces out for biopsy and I tried to escape to someplace more pleasant in my mind. Like maybe prison. Eventually he was done jostling the hose up my ass, and found a new hose to go down my throat. It was so surreal, I can scarcely describe it. I can't believe I remained still. Finally they were finished, and I was wheeled to a recovery area, where most patients sleep it off, but I just started getting dressed, trying not to feel completely humiliated. I wasn't some slumbering anonymous rectum, I was a walking/talking real-life person with an actual face to associate with the rectum. The doc told B my intestine, from my esophagus to my colon, was inflamed and they had biopsied several spots. He said it wasn't likely to be cancer, but it could be Celiac's or Crohn's. All I cared about was getting some Safeway bagels and going back to B's.

You've all been so thoughtful and faithful to call, text, and visit during this time, and part of the reason I wrote this was to share the outcome of the Chinaman's expedition.


Nothing. All tests were negative. No Celiac's. No Crohn's. No cancer. No answer.

And so it goes. I'd love to expound upon my feelings regarding this wild goose chase for a diagnosis, but wouldn't you know, I have to go to the bathroom.


B Kinch said...

I hate Yellow Hair with Roots. Hate her. If I saw her on the street I would beat her down. Hang in there. At least you're losing weight.

Megan said...

I just don't know what to say. I can say that I hope you get over this soon and get some answers because I hate to see (or rather hear of you) so uncomfortable but my desire to see you socially again plays into it heavily too.

THE PHONES said...

I'm so sorry. I hope that somebody finds some answers for you soon. I'm guessing Chinaman = Dr. Em?

Hennifer said...

C, I am so very, very sorry to hear about all of this. Somehow no one has bothered to mention to me that you were ill.

If there is anything I can do to help out please let me know know. I know this is weak. God, here I was hoping your quietness meant some fabulousness has happening in your life.

damn it. lame!

gail said...

what can i say? i am stunned that you had to endure all of this for no diagnosis. i mean, not only physical pain, but the rudeness and lack of compassion from medical 'professionals'....i really really hope you will continue searching for the answer. someone can help, i know it.