Shake, Rattle and Roll

Paracentesis

Paracentesis is a procedure to take out fluid that has collected in the belly (peritoneal fluid). This fluid buildup is called ascites. Ascites may be caused by infection, inflammation, an injury, or other conditions, such as cirrhosis or cancer. The fluid is taken out using a long, thin needle put through the belly. The fluid is sent to a lab and studied to find the cause of the fluid buildup. Paracentesis also may be done to take the fluid out to relieve belly pressure or pain in people with cancer or cirrhosis.

Thursday at around one o’clock I got to experience the above procedure first hand. Not a lot fun actually. But then, really, what medical procedure is? Colonoscopy, nope; Endoscopy, nope; MRI, not really; Cat Scan, nope; stress test, downright torture; rectal examine…hmmmm; turn your head and cough, not so bad as long as it isn’t your Webelo troop leader administering the examine. That’s just wrong and it won’t even get you a merit badge. I’d have to say the paracentesis procedure so far is down in the bottom three my least favorite medical tests to date.

I got to the radiology department thirty minutes before my appointment was to begin and unfortunately Nurse Ks ineffective assistant didn’t confirm it. No record, no appointment. Thankfully they were able to fit me in. I always get anxious in the waiting room, waiting, looking around at my companions, shuffling about in their half opened johnnies, dragging there hanging iv’s behind them like stray dogs. Hair disheveled and lethargic. One woman wheedled in from a nursing home, balding, bloated, sitting in that chair, hacking into a washed out rectangle “catch all” the last remnants of her dry toast of a lunch. Poor lady, where has her dignity gone? Is this me in weeks, months or years? Am I starring at my ghost of hospital waiting room futures? Should I change my name to Scrooge and just camp out on one of these tired intuitional chairs watching looping news reels?

Fortunately, I’m called back into the inner sanctum of procedure land. I was under the impression I’d be sedated thanks to the info passed on to me by Nurse K’s assistant. I was wrong. Well, that sucks, my wife took time out of her day to drive me in and out, plus I was prepared for it. Mentally, you have to get your head in the right place for some of these things. Normally I’m not the type of person that necessarily needs order and an agenda, but in regards to my health I sort of like to know how things might transpire. Also, the resident and the attending nurse who were performing the procedure, (overseen by a Doctor Kevorkian look alike) came from two different countries with two very distinct different accents. As they talked over and around me prepping for the big event I had to wonder how they understood each other when I barely could make out what they were saying.

They attempted in their thick ESL accents to tell me about what would happen. Resident of unknown origin held up huge syringe and explained they were going to stick this in my abdomen and extract about 800 ccs of fluid. Wow, that’s nearly four cups, to be more precise it’s about 3.38 cups. That’s a lot of fluid.

“Will it hurt?”

“No, you will feel a small pinch.”

“How small?” I ask.

“Small, small, like a small shot.”  She says.

“Is that a medical terminology? Small, small, like a small shot?”

“Yes.” She smiles and screws on a needle of approximately 6 inches in length.

“That looks scary and not like a small shot. Looks like a really fucking big shot.” I start to sweat a little.

She laughs with her Pakistani–Hindu-Bangladeshi accent. “No… no… no… you should see what we use in my country.”

I hoped to never find out. Jin the attendant has me lift up my shirt, smears me with cold lube and starts running an ultra sound head all over me.

“Why you doing that?” I ask lying there, slightly panicked.

“Don’t hit organ, bad jojo, bleed inside.” She pats my belly like I’m a pig and she’s whacking me to see how tasty I might be.

Jin and the Res search, press and probe with the ultra sound discussing the best point and angle of entry.  Finally after about 15 minutes of deliberation and a wee bit of bickering on their part they put an x on me with a sharpie. Jin gets on the phone and calls the Doc in.

Kevorkian arrives to oversee everything; he needs to make sure the Ressie doesn’t really screw things up. Looks at the point of entry and syringe; he tells Jin to get a longer needle. Oh yeah… a longer needle, I like the sound of that. Jin unscrews the six incher and goes to an eighter, which should do the trick. She looks at me and smiles. All of them put on welding masks, stand over me and start to get busy. From what I hear being said they suck up some local and begin to force that horse needle into my belly. Not so bad at first, my skin resists then a prick and a burn. Okay, this I can deal with. Kevorkian “Deeper”, the resident pushes deeper and flushes me with more local, okay, more burning and pinching. I’m sweating, Ouch! I’ll bite my bottom lip and just think happy thoughts. “Unicorn Shitting Rainbow’s… Unicorn Shitting Rainbows… Unicorn Shitting Rainbows…” Okay, that didn’t do the trick, maybe not happy enough, just weird. The Ressie pushes further and the doc tells her that’s enough, pulls the tube and let’s mine some belly juice. She starts extracting fluid and apparently the tubing dries up. “Deeper” the Doc says. Okay, not I’m thinking that the sedation might have been a good thing. “Ouch, Grunt, Gasp. Fuck! Okay that hurts.” Sorry they say with hidden grins. “Is your hand cramping?” Kevorkian asks the Resident. She nods. Shit, I knew that, I could feel the tip of the needle bobbing and weaving inside my abdomen. She wasn’t rocking steady, just look at the level of my grimace Doc! That should tell you what’s going on inside. “Work your way through it” He says. Digging deeper I grunt, gasp and groan more as she extracts more fluid… “Ahhh good…” says Dr. K, “Now we got a gusher.” After what feels like an hour but was probably more like 5 minutes, they extract the syringe and put a band aid on me. I pull my shirt down, wobble a bit as I stand up; the Doc pats me on my ass, “Good Boy.” He says as he sends me on my way. As the door closes behind me I hear him say to the Resident “You need to get some hand grips and develop some strength or you’re going to really hurt somebody someday with all that shaking.”

The Drop

Once the decision to move in with my dad was made there was a flurry of activity. The plan was for me to move out to the river house as soon as I could, my plan anyway. I’m sure it didn’t sit well with my mom. She wanted me to hang out until my twelfth birthday that was six weeks away. I was sure I wouldn’t last; I couldn’t last, time slipped by so slowly, like the last days of incarceration for a short timing inmate. I was sure I’d commit some capital offense whereby my expected freedom at my dad’s would be postponed or even worse, completely cancelled. I tried to stay under the radar and the only thing I could possibly be busted for other than my horribly underperforming showing at school was the small box I had stashed with rolling papers and barely smokable pot. Oh, and stealing from my step dad. I didn’t get an allowance and barely had a dime so I’d glean loose change out of a jar he had, go behind the garage, smoke some pot then truck up to the pony keg and buy these really shitty locally made soft pretzels that we’re all wet and soggy from the humidity and the wax paper wrapping they we’re in. Sometime I could shoplift a Coke too, Pepsi was easier to lift due to its placement in the cooler but that was for hill billies and besides, that’s what Mr. B drank. I hated the stuff. So I tried to keep a clean nose, kept to myself and was permitted to move out to my dad’s a week or two after I got out of school. Unbelievably I was caught stealing the change out of his jar. I don’t know how, but I suspect he suspected my petty thievery and coerced a confession out of me. Great, an excuse for him to give me one last whopp’n. No worries, I could take it and I’d be out of there soon and he couldn’t touch me.

During those brief two or three weeks there was tension to be sure and I’m sure I’ve forgotten about most of it, I do remember the dynamic of things changing between me and my step dad. I’m sure he was pretty all right with it once less mouth to feed, one less body to cloth and one less mouthing off spawn of another man slinking around the house up to no good of some sort. See you, don’t let the door his you in the ass. On the other hand he was sort of a bully and that kicked in a little harder. He didn’t actually beat you up but he’d do things like make you have push up or chin up contests with his son, who was 2 years older than me or a living room boxing match. That was always fun. Let’s put the gloves and the pads on and swing at each other until we get knocked down, crack our head on the coffee table, cry and get a popsicle as a reward for being such a pussy. Yeah… in this corner weighing in at a measly 65 pounds the Maggot eat’n Faggot (that’s me). Wearing black trunks with the confederate flag over the crotch, hailing from beautiful Lebanon Ohio, weighing in at an appalling 165 pounds is the Brose Bomber. Cheers from all the beer drinking hill billies sitting around our couches. All of them family members of the champ. I’d be force to walk into the middle of the room, shuffle my feet around a bit before I took a dive only to be picked up again and involuntarily made into MR. B’s offspring punching bag. Yep, couldn’t wait to get the fuck out of there.

There wasn’t a lot to take with me, so packing wasn’t such a big deal. Mr. B wouldn’t let me take the shitty discount furniture from the room I shared with my brother. Apparently he didn’t want to break up the set, I’m sure he expected it to be a family heirloom. Yeah, particle board covered with veneer was the ultimate in shabby chic in 1973. So no bed or dresser, he let me know in no uncertain terms that it was my dad’s job to support me and couldn’t wait to see what kind of man I’d grow up to be. I didn’t have a record player, albums, cassettes, games or books so it was pretty much my cloths. When the time came I just stuffed my wranglers and t’s into a plastic garbage bag, underwear was overrated and I knew I wouldn’t have to wear any so those were left behind. Bye-bye Scooby do underwear.

Mom was stoic and unemotional leading up to the days of my departure. Why wouldn’t she be, she probably felt like throttling me or my father or anyone just to release some frustration and stress. I know I would. My mom would drive me out to my dad’s that Saturday morning I was to move in. It should have been one of those gray miserable, constantly spitting mid-western days. It wasn’t, it was bright, shiny and beautiful. Only are hearts were gray, I could feel it. I started questioning myself; did I make the right decision? Doubt crept into my mind. I was nervous, really fucking nervous, butterflies in the stomach didn’t begin to describe it, and I threw my breakfast up a few times until my throat and mouth burned with the taste of bile and acid. Anything that was left came out the other end. Yuk. Pulling it together I threw my half-filled pitiful plastic garbage bags and climbed into car. I didn’t say good bye to my brother or sister because I didn’t know what to say, it was easier.

I sat there in the front seat of our, what am I thinking, their 1970 Pontiac station wagon. Funny how that’s one of the strongest memories of that day. It was white, with fake red leather interior, had power windows that mostly worked; we got yelled at every time we fiddled with. The seats where perfect for jumping from the middle row to the cargo area with the flip up seat. Ideal for when you’re on the road shooting at the car behind you not unlike Bonnie and Clyde. It still had its new-used car smell overlaid with the freshly smoked cigarette and ash aroma. I really liked that car.

After what felt like forever my mom made it into the driver’s seat and we started our drive out to the river house. She was prolonging the inevitable I’m sure. We drove in absolute silence, what could we say? How nice the weather is? Mr. B’s recent calculation on the gas mileage of the station wagon? What I was going to miss for dinner? No words were spoken.

Turning down the old dirt road we zigged and zagged through the water filled pot holes we could avoid and bounced through the ones we couldn’t. Silence. I couldn’t look at my mother. Pulling into the little trashy ranch house no one came out to greet me other than the dogs. Eli and a few of the others ran around the car, wagging their tails and yapping a bit. That was my welcoming committee. There was no banner. No Party. No celebratory dinner. No this is your home now. Silence.

I sat there, not knowing what to do or what to say. There were no tears; the time of tears was over. I wracked my brain for some reasonably appropriate thing to say to my mother. Nothing came; I was a hollow little eleven year old with a shitty attitude. I didn’t say thanks for the meals, love or the hugs. I didn’t say thanks for sending me to school and church, thanks for trying to make me a better person. There were so many things I could have said, I should have said. Even a simple I love you or I’m sorry. Just silence. Finally, in a feeble trying to sound up beat sing songy chalky kind of voice I just squeaked out that I’ll miss you. I grabbed my garbage bag full of cloths, got out of the car and left my childhood behind.

Prepoked

Posting from my phone, I'm such a techie. Still waiting, nurse k's incompetent asst didnt confirm my appointment. Thankfully the're fitting me in and I shouldn't run any later than two. I could go for a falafel rught now. Being a doctor must really suck somedays . I couldn't imagine having to look at 90% of these people naked. I no longer want that falafel.

Pig in the poker

Just got an email from Nurse K, tomorrow, 12 noon, biopsy. Tapping my abdomen to see if any of the fluid in there is infected. Gross. I really hope I'm not awake for that. So that makes me the pig and the attending physician the poker. I guess. Look for another installment from the 70's shortly.

The above isn't me, just how I feel somedays.

Super Shittty Fucking Day

Sounds like the opening chorus to chitty chitty bang bang, but it’s not. Shitty day. Had an appointment this morning with Nurse K, who isn't a bad person at all. On a previous post I had said that her office was completely devoid of any sort of personal effect, well, today I spotted an 8x10 glossy of a little baby. I'll assume it’s hers.

So the meeting started off discussing the symptoms I'm currently having Ascites (fluid in the abdomen); insomnia, no explanation necessary; confusion? Me confused? Well yes, but I readily admit I've been confused for most of my life and I'd attest that most people I've met are as well. Okay, maybe only in circles I used to travel in. So apparently there can be this thing where the fluid in your abdomen can create a back log of ammonia on the brain, which in turns creates confusion. What else... what else.... oh the fact that she thinks I should get cured for HCV before I get a liver. Odd, the transplant folks say take the liver when it comes down the pike. Oh, and depression, supposedly I'm in depression denial. I don't feel depressed but we're not taking any chances here so I get to go back and see a Head Doctor, Doctor Surnam. Cool dude and I don't mind at all, I enjoyed talking to him during my transplant screening scenario. I liked the fact that he was completely disheveled and was wearing shoes that didn't match.

Then we discussed the interferon protocol in detail, one self-administered shot a week five pills plus what I'm currently taking, plus maybe one or two more. I left the meeting feeling very hopeful but realizing its going to be more difficult than I initially thought.

Send me good thoughts and skyline chili.

Care for a free cup of coffee?

Wednesday I had an appointment with a therapist regarding substance abuse and the potential for relapse for folks that have liver transplants. Apparently 42% of those people drink alcohol again. Now 24% of those that rendezvous with their old friends only do it for a specific reason and occasion. The celebratory glass of wine or champagne at a wedding, a little manischetwize at a bat-mitzvah or possibly a small toast of beer at your best friends’ wake which happens to fall on St. Paddy's day. What happens to the 18 percenter club? Well, they become users, abusers and go back to the life style that potentially put them in the position they're in today. Yuk. How could someone given such a gift fail to live up to this person’s noble sacrifice? Easy, human nature and free will. Head shrinkers and therapists don't worry too much about that first crew but the second group is where they concentrate their training and counseling. My mind is made up. I'll have a ginger ale thanks, preferably Vernon's.

I worked my way from that appoint to see one Doctor Tan, a dermatologist I've seen before and an overall very awesome, cute, little old Asian lady. I think she's a Chinese national. I like her cause she's always making faces and saying things like "Bah! you don't have skin cancer, those bastards over there just want to make money." she clears her phlegmy throat and kind of gargles, ”Skin cancer... blah....". I keep waiting for her to spit her dip into the nearest trash can, but she doesn't. Another thing I like about Tan is that she is old school. Not resting on protocol she just stands there as I undress to put on the Johnny for my total skin scan. I think today the general practice is for docs to leave the room while you’re changing. She doesn't care, standing there in her white coat, picking her teeth with a soft pack of matches and telling me about this kick ass whole fish recipe her mother used to make in China. After going over me with a well-lit giant magnifying glass she says "Bah, Blah and Gash..." a few more times while mumbling something about no skin cancer.

Finally my last meeting is with a friend; a close friend who has no credentials what so ever in the world of medicine. He tries to convince me to put a cup of coffee up my butt. A coffee enema. Apparently the caffeine acts as a cleansing and detoxification agent. Does that come with cream and sugar? Do I go decaf? If I'm really looking for a boost should I have an espresso? What is the appropriate roast for a coffee enema? I don't want to commit a faux pas. I tell him the prospect sounds tempting but I'll take my coffee the old fashion way. Orally.

Waterworks and a tip of the scales

Tipping the Scales

A few weeks had passed since my dad asked me to move into the river house. I had talked about it to my mom and she let me know it was my decision and wouldn’t stand in whatever I decided. Later in life I learned that she did put up a fight, but chose to spare me the trauma of going through the courts.  

I was like a dry sponge, I was wrung out, I needed soaking up, and I needed something quick. Emotionally and spiritually malnourished I floundered. I needed advice and I didn’t know where to look. I went to a catholic school but got very little direction there, my connection with the nuns was less than ideal having been labeled a problem child, a nickname which I was perversely proud of at the time and excelled at maintaining. The monsignor and priests weren’t my friends; I did the altar boy thing but only to get a hold of the sacramental wine, drink until I got a little dizzy and give out “communion” in the school yard until one of the girls ratted me out. Again… I was ratted out for small misdemeanors quite frequently.

So with nowhere to turn I turned to the only place I had left. Inside. Being a day dreamer it was easy for me to imagine what life might be like on the river. There was a girl who lived next to the Miamiville Tavern who I flirted with, horses, driving the truck up and down the dirt road, guns and motorcycles. No rules, but my future was uncertain out there. I knew I’d have to sleep in that creepy room with the nearly constantly damp floor and I knew I wouldn’t have a dresser or a bed. I’d be sleeping on a folding chaise lounge with nylon strapping missing; I’d be sleeping on an oversized pillow that looked like cow skin on the living room floor. I knew I could eat, go to bed, wake and pretty much do what I wanted anytime I wanted. I also knew I wouldn’t have my mother and that was the hardest knew of all.

After my folks got divorced they both remarried, both for different reasons and I hope they both where happy. My dad left town with the baby sitter and was sort of black listed for a while from her family and his. Running off with a minor even in those days apparently was frowned upon. My mom, I guess married the best thing coming down the pike that life had to offer her. I was completely confused and bewildered by her choice. Maybe he was the best that that specific time and place had to offer. How they met I don’t know, I didn’t get it, I feel like I could repeatedly whack myself in with a tennis racket until I was nearly unconscious trying to figure this one out a. Even today.

Maybe it was the fact that he was a complete polar opposite from my father that created the attraction. By all outward appearances he seemed to be a normal fellow. Tall, strong, had a job, car, drank beer, had kids of his own. Everything a woman could want in the mid 70’s; we’d be a real Brady Bunch family, minus Alice and the dog, Mr. B didn’t like dogs. There’s a strike.

Mr. B, wow, Mr. B. I could write a few stories about him, my step dad. I don’t think we liked each other from the first time we met. I remember him coming over to pick my mom up for a date, or maybe he was coming over just to get to know us. Whatever the reason first impression count and boy did he leave one on me. As the screen door swung open and shut with a slam his silhouette blocked all incoming light. He cast a long shadow, walking further into the room and towering over us kids all the oxygen was completely sucked, flowers wilted, paint and paper peeled off the walls, panes of glass shattered, dogs cowered and old ladies shielded their eyes. Babies within a two block radius started crying spontaneously and when we rode It’s a Small World at Disney the ride stopped working and all the characters popped bolts, sprung springs, fell off their tracks and started singing Helter Skelter and reciting Mein Kampf.

Of course I’m kidding, he wasn’t that bad, it was just the over exaggerated impression of a little kid. He certainly was grim, not very smiley and couldn’t appreciate the value of a good fart or boner joke. He was sterile, ignorant, not gentle or fun. Didn’t like animals or playing with food at the table, I knew corn catapult would be completely out of the question. If my mother’s soul was the color of capiz shining brightly his was void of any color, a black hole that sucked all the life and light out of the room.

I’m sure we each represented what the other disliked the most on this earth. If Mr. B thought I was a greasy haired, smart mouthed, no respecting, slacking little fucker, he wasn’t far from the truth. I pegged him as an ignorant, uncreative, unimaginative, smelling of cleanser and oil, central Ohio hick whose only value was knowing which way to turn a screw. He was mechanical and could drive a nail, lay a plumb line and change the oil in his Plymouth Duster and Dodge Super Bee, the coolest things the dude had going for him. On the other hand I represented my dad and I was fiercely loyal defending him when someone was talking smack and I wasn’t going to be won over by some modern day dust bowler regardless how good his intentions might have been. In my eyes he was trying to take my father’s place, a position no one was good enough to fill. Our relationship was doomed from the start and neither of us seemed to give a shit, especially since I generally got the shorter end of the stick and he came out on top.

Pressure was on and I had to choose between two camps, two life styles. On the one hand it’d be a free wheel’n, keep on truck’n, mad magazine flying freak brothers extravaganza. Then, my other choice was living in a sterile middle class environment surrounded by upholstery and drapes that represented my step dad’s rural sensibilities and general lack of originality. In bed by 8:30, regardless of the night of the week, no choices, no negotiating, just goose stepping towards false cleanliness to the sounds of Pat Boone and Bo Donaldson’s version of Billy Don’t be a Hero. Mass on Sundays which he refused to attend with the rest of the fam, “I warship gawd my owhn way”, yeah, sleeping in on Sundays, I’d like to worship that way too.  Family entertainment was anything Doris Day, Hee Haw and the Mutual of Omaha’s Wild Kingdom. “Don’t touch that channel!” If you happened to be home during the week and Mr. B was home, the Price is Right was a must see and don’t even think about talking over the Bob. Hanging out with the snot nosed tattle tale of cop’s kids that lived across the street wasn’t a picnic either. Their idea of a good time was chasing each other and you with a booger ended finger and trying to get you to drink piss they’d dyed with food coloring.

As my twelfth year birthday started closing in I started looking for someone to tell me what the right and smart thing to do was. I knew what I wanted to do, but for the first time in a while I also wanted to do what was the right thing. I couldn’t talk about it with either of my parents; they were the ones fighting over me. Most adults at that time spoke down to me rather than at me so they weren’t to be respected or regarded. As double d date approached (Decision Date) my step father tried to do the right thing and have a man to man talk with me. We were given our space in the living room where I generally wasn’t allowed to sit on the furniture, but the severe tone of our conversation merited me the honor to sit on washed out flowery yellow couch. No real treat considering all the grease marks left from Mr. B’s head imprint with the indelible scent of Royal Crown Pomade. It grossed me out. We talked about school, awkward silence, he let me know I could sit behind the wheel of the Duster anytime I wanted, awkward silence, told me he loved my mother, awkward silence and he told me he tried to be my friend. He told me how much my mother loved me and how much it would hurt her if I moved out. Sobbing, I knew that, that’s why I couldn’t make a decision. If there was one thing that was pure and good and nice and sweet on this earth it was my mother. I there were two, it was my mother and grandmother.

Guilt! That’s why the fuck I couldn’t make a decision. The shadow of guilt. The worst kind of guilt, a son betraying his mother. We’re not talking about shop lifting some penny candy, no breaking into the neighbor’s house while they’re on vacation, or poking someone in the eye with a stick.  We’re not talking about dipping and stirring the end of your step dad’s new water pick into a piss and turd filled toilette, it’ not even on the same scale of breaking into a black powder warehouse and making pipe bombs. Out of all the different stages of guilt turning your back on a family member, let alone your mother is the worst kind of guilt possible. That’s something you’re going to carry around for a while.

Mr. B made it clear that I was welcome in this house and that maybe we could have a fresh start. Kids have a great bullshit detector and that’s exactly what I smelled coming out of his mouth, his central Ohio red neck twang might have been laying it out, but I wasn’t buying it. A fresh line of crap. Sweet words spoken with a sweet deep accent, like poison that smelled of lavender and lilacs. Too much water under the bridge. I stood up, wiped my eyes, shaking I shook his hand and said good night.

My mom was waiting for me in the bedroom I shared with my brother. She was sitting on the bed and gestured for me to sit next to her. I plopped down and again, the waterworks started as she told me how much she loves me, how she thought it was probably a bad idea but she would understand if I left and would love me as much then as she did that day and the day I was born. Did I mention guilt? She wasn’t laying a guilt trip on me, just being honest and forthright. But there is no way an eleven year old kid can feel anything but remorse and shame. I couldn’t even say the words, wasn’t a man enough and I didn’t have the stones to utter them. I could not say “I want to move in with my dad.” She actually had to come out and ask me if I wanted to move in with my father. I trembled, sobbed and nodded my head. She helped me change into my pj’s for the last time, waited for me to brush my teeth, tucked me into bed and said “Goodnight, sweet dreams and I’ll always love you.”

A horse named Blue, a dog named Boo and a Judge named Cheryl

So life went on at the river house for a few years or months or whatever it was with its ups and downs. We had our adventures in the woods and fields riding horses, breaking into the old Kroger estate and trying to sell the rancid tulip bulbs in front of the post office. Fights broke out; nights where spent in pick up beds under stars and around fire pits. Siblings getting lost in the woods for hours and hours; an aresole can explosion popping open my brother’s hand, nothing a little rubbing alcohol and a popsicle won’t take care of. There was the occasional horse bite or kick, a cow’s birth and always the permeating smell of horse shit. Still, my favorite of favorites of smells, right up there with bacon cooking. It’s said they aromas can take you back into time quicker and more intensely than any others senses and my experience that this is a true fact. It’s not scientific but based on the number of times I’ve driven passed a horse pasture and smelling that slightly sickly sweet odor has taken me back into time to a muggy July day around the horses of my childhood.

A lot happened in the big world too, Nixon got re-elected, my uncle got elected mayor, folks started coming back from Viet Nam, Fisher beat Spassky, Watergate broke and the Supreme Court legalized abortion and I’m pretty sure something happened on, near or around the moon. The Exorcist came out and I snuck into a showing at Hyde Park Square, shit my pants and ran out of the theatre. George Carlin was arrested for seven deadly words and my family discovered the beauty of light beers.  Yep, from where I was sitting it was a good year.

Weekend life out on the camp was just right for me, one day I’d be playing cowboys and Indians with real horses, hatchets (tomahawks) and b.b. guns, riding wildly bare back and bare chested, we would find ourselves building forts and river rafts, hiking in the woods, breaking into abandoned houses and building the occasional fire that’d grow out of control as we dashed off. The next day I’d be playing burned out hippy kid, trying to memorize the words to Harrison’s Bangladesh Album while eating spam sandwiches and drinking the remains of canned beers and watered down cocktails from the night before. I was mesmerized by the picture of that little kid on the front of the Album cover, I wanted to reach in and pull him out and share my canned meat and egg sandy on rye. I dreamt of getting a team of recon specialists and ex Viet Nam do gooders, going to Bangladesh and rescuing that little fucker, teaching him the ways of the west and capitalism. Dressing him in Chuck T’s, Levi’s and a cool ass oversized army jacket.    Idealism came easy to a kid that was nearly always stoned.

One grey day I found myself and Dad walking across the railroad trestle from Miamiville. We’d went over to get some bologna and a few scratch tickets and we stopped into the tavern to knock back a couple of beers while we were there. Oddly though, my dad seemed pensive and broodish as we crossed over the river. He was obviously engrossed in his own thoughts as he took the trestle tracks one by one and I tight-rope walked along one of the rails, arms out for balance, sea-saw occasionally on purpose to make it feel a wee bit more dangerous. It rained recently and misted a bit so the river was running faster and higher than usual but I was always okay as long as I didn’t look down to the running water 40 feet below me. The nerves of steel kid.

Once we reached the safety of the other side, he seemed to loosen up a bit and asked if I wanted to continue walking the track rather than work our way down the scree of the embankment and on to the river house. Of course I want to continue walking, it’s not often I have my dad all to myself. We chatted about how much he loved me and how he came back from California to be with us kids; about love in general and how sometime it’s a beautiful thing and how sometimes it isn’t so great and things just don’t work out. We talked about Cat Steven’s, why Jonathon Livingston Seagull had such a long name for a bird where chili came from and we decided that Colby Cheddar was the best cheese and not Limburger.

We shivered and talked as we meandered down those tracks towards the School House restaurant; it was a happy moment, a moment frozen in time because we shared so few of those moments. Sort of a Pearl Harbor moment, I knew exactly where I was, the shade of my flimsy red wind breaker, how soggy my Convers had gotten, the color of the shrubs and which direction the rain was occasionally spitting. It was a misty and grey walk, but a happy walk, we’d push each other off the iron rails and laugh as we fake wind milled our arms. An overgrown pasture was on our right separated by a rusted wire fence, barbed wire and small locust trees and over grown shrubs that haven’t been manicured since the Kroger family moved on and out... Suddenly two horses galloped up and stuck there heads through a break in the thicket, one was a huge white appaloosa with blue grey spot that seemed as if his groom forgot him. His hair was tangled and matted, burrs where stuck in his tail and the remnants of his winter coat. His name was Blue and his was a beautiful horse, well cut, well defined and real spirited son of a bitch. I also knew for a fact that he liked to drink beer. Blues companion was a well-kept, well trained Palomino of no distinction as far as I was concerned. Too much of a lady for me, I liked Blue. We stopped and petted and put our arms around the necks, sort of hugging the animals and I just sort of wished that all our times together could be more like this.

Leaving the horses behind, my dad gestured that it was time to start heading back home for dinner. Unexpectedly my dad’s conversation turned from light hearted and silly to a more serious note. He abruptly, out of the blue said “You’re mother is trying to put me in jail.” I stopped dead in my tracks. I lost my breath; I had visions of going to the Norwood Jail to see him, separated by bars, how long would he be in jail? Days, months, years, was a life sentence looming? First things first I thought as I composed myself.

“Why?! I said.

“I’m not sure son, money. She’s looking for money and I don’t have none.”

After such a special moment this news hit especially hard. My throat started to burn; close up, my eyes started to water as I struggled to fight back the tears at the thought of not seeing my dad for who knows how long. No more walks, bologna sandwiches, no more motorcycles, driving the car by myself, no more sitting on the bar stool at the Miamiville Tavern drinking straight grenadine and mowing down Vienna sausages. No more nothing. I was getting pissed and as I struggled to rationalize what could possibly happen ‘I figured my Step Dad must somehow be behind this. But there was nothing I could do, he was grown up and I was just a little kid.

My dad continued “I’m supposed to send her money every week and I just don’t have it, we had to go see a judge and your mother pulled this out to show him.” It was my dad and step mom’s Christmas card. They were standing in front of a royal blue slat fence with a bunch of dogs, cats and horses around them. I knew that card very well; I would sometimes pretend that I was in that picture too. Sometimes I would include my brother and sister but mostly it as just me. And I actually remember looking for that photo once and it being gone from where I kept my copy. That must have been the one that made its way in front of the judge. I knew the names of every one of the animals; Jeanne, Sunfire, Bullet, Diane, Eli, Boo, Jason, Chelsea, Spencer, Levon, Geronimo, Spike the cow and her calf Flipper. . “She told the judge I had enough to keep these animals but not enough money to take care of my kids, so I might be going to jail.”

I cried and wailed and hugged my dad’s waste as we stumbled along. I think maybe he cried a little bit too.

“You know, there might be one thing….” his voice trailed off a little.

I shrugged and tried to catch my breath. “What’s that?” as I wiped my eyes on an already drenched red windbreaker.

“Your twelfth birthday is coming up and the judge will let you decide who you want to live with, all the kids get to decide. You could come with me and the animals or your Mom and B. Then, I wouldn’t have to pay as much money because we’d be taking care of you here and I could probably catch up on what I owe and wouldn’t have to go to jail.”

Brilliance! And I realized I had a big decision to make.  And it was a big decision that merited a lot of thought, mulling over and scrutinizing Unfortunately I didn’t possess the necessary capacity for reason and logic to pull this one off. I didn’t consider asking a priest, grown up, older kid or someone with more life experience. I just wanted to go where the party was, a theme that would follow me later in life.

The Therapist, Pin Cushion & Igor (pronounced EYEgor)

Today I had three important appointments:
Uno: With social worker to discuss goals on how to deal with the stress and changes that may come with a transplant. No big deal. A meet and greet.
Number Two: Blood work drawn to define my MELD score, a number used to determine how sick I am and how desperately I need a new liver. I'll find out the results on Monday or Tuesday. I'm dehydrated so Lillie Phan had a hard time hitting a vein; it took her and two other philbotamist about 8 hits before they found what they were looking for.  Success was found after about an hour in the chair, making me late for my future appointments.
C: Vaccine from Nurse Ratchet and a talking to about tardiness. Odd lady, I guess she had every right to be bitter and what a better target than me to take it out on. She was well into her 60's, page boy haircut, the skin and complexion of curdling milk and she had a wondering eye and was hunched over like Marty Feldman in Young Frankenstein. She came at me like a rabid dog with a lecture on how I had no right to reschedule and that I was throwing her whole system off. I relayed to her my earlier experience at the blood lab but she wasn't having it, our voices rising slightly as we talked over each other and her North Shore Boston accent turning into something more reminiscent of a Charlie Brown Adult meets the AFLAC duck. Eventually after I accused her of having attitude and wasn't sure if I was she was going to poke me with a syringe full of malaria, typhoid fever and a case of the willy's she calmed down. By the time I left, it felt like we were old chums as she schooled me on the best tattoo artist (her nephew) ever to come out of Revere was. I can’t wait for my next two visits with her and gave her a wink to her good eye as I walked away.

Trip to see Dr. A & the Infectious Disease Doc

Spent half the day at MGH today, what fun. Had a ten o'clock appointment with an infectious disease doc, nice lady. Seeing her is one of the hoops I have to jump through to get a new liver. There are lots and lots of hoops of different sizes, angles and heights. Some of them are even doused with kerosene and lit on fire; that would be called the heart stress test. Today's was easy, except for a small moment of anxiety where I thought I might pass out; apparently I haven't had enough fluids today so I was a wee bit dehydrated. Nothing three cans of cranberry juice, some unsalted crackers and a mini Butterfinger and musketeer bar didn't cure. Thanks nurse Brad, the ambigiously gay dude wearing a plaid shirt and wranglers. Odd for hospital garb.

They wanted to put me into a wheel chair to get me over to Doctor A, my Hepatologist; I politely declined and proved that I could make it over on my own accord by demonstrating the Hokey Pokey, Limbo and the Macarena. I have to go back Thursday to start getting vaccinated for Hep B. Lucky me, three move visits.

Dr. A's visit was good, she's 5 months pregnant which is pretty awesome, she lost her parents this year and her husband’s father passed away. Being well into her 40's she called it a miracle. I myself am hoping for a miracle of another kind. I guess.  We talked names for a few minutes, I myself told her I was partial to Elvis, she said she like Robert, Robert Chung. Her husband is Korean and a famous liver surgeon.  I let her know Robert Chung wouldn’t be bad, just don’t name him Wang, Wang Chung. Everybody Wang Chung Tonight!

We talked about symptoms, fatigue, swelling, ascites and interferon. A lot of my test results are down, which is a good thing, but the fatigue is rearing its ugly head. She's trying to get me something called provigil, the name I'm sure was developed by a focus group to sound, well, professional and vigilant? Let’s take a prefix and a suffix that have two different meanings that sort of sound like what we want this medicine to accomplish, mush them together, come up with an vague marketing campaign and make a million trillion dollars. Oh, and while where at it, let’s hire a firm and consultants to help us figure out how and why we should deny this drug to prospective patients. Provigil was developed for folks with narcolepsy, so that’s cool.

So basically, Dr. A just had a catch up meeting; I have an interferon injection class on the 26th and more hoops to jump though for the liver.

(A new installment of life on the river will be posted shortly)

Life on the roller coaster

Addendum

Dear Mr. X,

I am writing to you in reference to the liver transplant evaluation you recently initiated at the blah, blah, blah….

The Multidisciplinary Liver Transplant Committee met on July, 6, 2011 and it was the recommendation of the Committee that your listing with the United Network for Organ Sharing be deferred. The Committee’s recommends are that you should have a consultation with Dr. C. from pulmonary, which has been scheduled.

In the meantime, we will continue to monitor your liver function as you remain under the care of Dr. A and Dr. T.

Blah… blah… blah… blah… blah… blaahhhh……

Blah?!

Either Ellen was a little over zealous in what she was saying or I was I little over zealous in what I was hearing? Fingers crossed and wait to begin the wait.

A quivah in me livah

Liver disease can live in your body for years and years before any of the symptoms decide to materialize. oOnce they do they can come at you full force like a locomotive or a smack in the face, a real hard smack, one that really hurts and stings. One of the more fun symptoms is the constant fatigue. I’m not saying the exhaustion I and other Hep C victims experience is any more difficult to deal with then anyone else’s, but it is nearly impossible for me to put the level of exhaustion into words.

Waking in the morning, with the thought of having to swing my legs off the bed walk to the bathroom and start my day is daunting. I feel like gravity has affected me differently than other folks, like I’m always being pulled to the ground, it takes every fiber and all the will power in my body just to move from point a to point b. I’m walking through sludge or wet sand. The mere task of driving to the drug store, getting gas, walking to the mail box, mowing the lawn or carrying a laundry basket takes on the same magnitude as a Shackleton expedition. The absolute worst is not having the energy to run around with my kids, it wrenches my heart into two. Hunched over and drained of any pep or vigor, my head sinking down from its own weight between my shoulders, belly expanding with fluid, ankles and legs swollen. Tired. Would the same choices have been made had I known what I know now? Hind sight is 20/20 which none of us is blessed with.

Making it through work feels like running a marathon, I could sleep for days after a decent shift. Unfortantely, my mind won’t turn off. Fatigue and sleepiness are two different things, yeah, they often run hand in hand, but you can be fatigued and your mind still races a mile a minute. To help me get though a day at work I generally sneak away mid-afternoons, months ago I was going for walks and grabbing coffees to help maintain my stamina. Not any longer, those days are long gone. Lately, I’ve been crawling into my car, driving the five minutes to the waterfront, turning the AC to high, putting the seat back and covering my face with a sweat shirt as Itry to get a 20 minute nap in.

My sanctuary is right out in open, across the harbor from Logan airport, planes fly directly overhead. I sit next to an abandoned warehouse that looks like it could house an aircraft carrier, jersey barriers blocking the way; you sort of have to weave in and out of the pointless security Massport has put up. Regrettably the area is policed by Massport, Boston’s finest and the State Troopers driving by and either telling me to screw or making sure I’m still alive and not slumped over because of an overdose. Eventually all but the most of the men in blue began to recognize my car and begin to leave me alone.

So, I was on one of these short sabbaticals from work, sleeping in the front seat of my car when my cell phone rings. I’d normally ignore it unless it was my wife.  Transplant Center. “Hello?” it was Ellen my transplant coordinator; she’s the RN who pulls all my exams, tests and appointments together. It’s also her job to be very positive and hopeful which she does wonderfully. Financial aid question, Ellen; infectious disease appointment, Ellen; helping me get a prescription filled that my insurance provider has declined, Ellen; sending my paperwork to the evaluation board, (made up of Hepatologists, psychiatrists, surgeons, social workers, gastrointestinologist, anesthesiologist and probably some other ologists of one sort or another) for a new liver and acting as my advocate, Ellen.

That why she was calling, it was Wednesday the 6th of July, she presented my case to the board that day and they okayed me for a new liver. I’d be listed nearly immediately. I thanked her, sat back in my chair, turned up the AC and silently cried a little before I called my wife and my mother.

I smoked but didn't inhale.

So Dad And I were sitting at the kitchen table in the river house, the weapon lies between us, on a slightly overused plastic tablecloth, it always felt greasy and slick,  it had a morning glory design disrupted by a few cigarette burns and the thing probably should have been discarded a year ago. On the table sat some nearly empty bottles of Stroh’s, an ashtray with dead butts, a tin of Hormel’s deviled ham on a plastic plate surrounded by saltines. There was a half eat’n pot of clams cooked in beer and a loaf of dark bread from Findley Market, the room had sort of a sweet bar room aroma. There were a lot of windows in that room, two of the walls where all windows from the waste up. Generally they looked out onto the back yard, a beaten up green shed covered in tar paper and the house barn that our horses called home, currently they were fogged up dripping with condensation from all the body heat and cooking that was taking place in the room. It was winter but we must off just come off a warm spell because a moth repeatedly kept flying into the back window, struggling to get at a light source. I thought it odd that a moth was out there this time of year. It’s tapping against the glass pane kept getting slower as the temperature dropped and it tired, I had to fight the urge to open the door and let it in.

We sat there, just kind of looking across the table at one another; I’d look at him, the weapon, the moth, fidget a little and look back at my dad. He had lamb chop side burns, darkish hair and a small comb over where he was slightly balding. He was sweating a bit, it was hot in that room and the oven door was open warming it up even more. It was kind of like a western show down, one of us waiting for the other to break the silence that was only interrupted by the occasional tapping from the moth. My dad picked up a pack of smokes, soft pack Viceroy’s, lit a cigarette and inhaled deeply. He looked over at the moth, picked up a newspaper, walked to the back door and opened it, with one quick sideways motion he smashed the moth into a greasy crumpled smear against the window of the back door. It stuck there, smashed body and crumpled legs; he threw the paper on the table, sat down and looked at me.

Gently he said “Son, you look like you have something on your mind¸ you have something you want to ask me.”

I squirmed a bit, and nodded.

“Well, what is it?”

“What’s it feel like when you smoke marijuana?”

I could see my Dad thinking about how he wanted to formulate his response. How could he make a nine year boy know what it felt like to smoke marijuana? It seemed like a lot of time passed before he decided to answer; I could hear voices, laughter and music coming from the other room. I started to wish I hadn’t asked that question and that I was sitting on the floor in front of the stereo, head phones on, forgetting things while listening to American Pie.

After what felt like an eternity he said “We’ll, you know when you eat a piece of cheese, and you love the way that cheese tastes, when you smoke,” he gestured at the weapon “that piece of cheese tastes that much better. Or… when you have a piece of steak, pot makes steak taste better, or if you’re listening to music, it makes that music sound better.” It just makes everything better! I got it. “It’s a gift from the earth, natural; it grows in the soil, what could be wrong with that?”

That didn’t sound so bad or dangerous to me. “So, it’s not dangerous? You’re not going to go crazy?” My dad smiled, laughed a little and gave me a reassuring hug. “It’s just something people use to help them relax.” I felt better, safe comforted. My dad wasn’t going to go insane or get arrested from smoking marijuana, he was just going to relax, all good news.

Eventually, everyone at the river house slowly filtered back into the kitchen and I got nods and pats on the backs, from the long haired, goatee sporting pirates that were pretending the counter culture movement was still in full swing and the halter top, Daisy Duke hippie girl hangeroners. Cans of beer where opened, cigarettes lit and a bottle of wine was passed around. We worked our way back into the living room, played records, talked and everything was good. My dad must have given someone a secret okay because the weapon was picked up, packed with some dried out, dusty, herbal debris. I was entrhawed, on full alert, here I was, about to witness some great ceremony or secret rite, after all, the weapon did sort of look like a peace pipe. One of the gypsy’s put the weapon to their mouth, struck an oversized fireplace match and put it to the bowl, a couple of small flames danced out of the bowl as the match was extinguished and the pot ignited. A grey blue cloud of smoke floated through the air. It was drifter and mesmerizing. If you’ve never smoked or smelled marijuana burning it’s a very hard aroma to describe, it’s like trying to describe the smell of baking chocolate chipped cookies to someone that’s never smelled them before. It had a sickly sweet, slightly tropical and grassy fragrance. It smelled exotic and reminded me of the incense that was constantly burning in little cones on window sills. And I wanted to do more than smell it

Marcus, the man smoking inhaled deeply, held his breath, coughed a little bit. I studied his technique More smoke filled the room as the pipe was passed to the next man. I couldn’t take my eyes off Marcus, I waited for his head to explode or blood to start coming out of his ears, and disappointingly he only coughed, gently whacked his chest with a sideways fist, exhaled and smiled as his eyes started to look more glassy and bloodshot than usual.

I watched as everyone took a hit from the weapon, eventually it worked its way around to me. It was in my hand, hot and lit, I got the nod that it was okay, I was panicked and didn’t want to look like a novice. I held the pipe to my face leaving a little gap between the weapon and my mouth and took a small breath, I tried not to get anything into my lungs, I just held what was in my mouth quietly, took a couple of gasps and exhaled hard. Nothing came out, I was relieved, I’d smoked my first toke, but not smoked, I wasn’t ready to cross that bridge yet but I’d thought I fooled these old pros into believing I had. I sat back feeling cooler than I’d ever felt, spinning back and forth in a rattan hanging chair, Converses dragging the floor, I’m the bomb, yes, yes I am.

As I looked around through the haze I realized everyone was smiling and laughing, I started to laugh too, the more we laughed the louder and longer we laughed, hooted and hollered. Our eyes where watering and my sides was hurting from so much laughter, I didn’t know what we were laughing at and didn’t care, I assumed no one else did either. A shared happy ecstatic moment in time. If this is what marijuana does to people I thought it was pretty cool. Everyone was looking at me and gesturing, I could see some of them mimicking me, mocking my fake attempt at smoking. I realized that it was me and my feeble first attempt at smoking pot was the butt of the joke.

I could feel myself turning red with shame and embarrassment as the laughter continued. I was dreadfully humiliated and disgraced. I slammed down the weapon and stomped into the kitchen sulking, I could hear the laughter in the next room seemingly getting louder. I opened the cabinet under the sink, grabbed some 409, a paper towel, opened up the back door and wiped the dead moth off the window. I didn’t bother with the other grime, that wasn’t my problem. I threw everything into the trash barrel and stomped off into the night.

Interferon, Interference, Interfere, Inner Fear

Interferon, Interference, Interfere, Inner Fear,

June 2011

Definition of AGUE

1: a fever (as malaria) marked by paroxysms of chills, fever, and sweating

    that recur at regular intervals

2: a fit of shivering

After a short wait of watching the comings and goings of other patients, my wife and I are finally called back to a small room by Nurse K. She has a bunch of letters behind her name and I don’t really know what mean or really care.  Apparently they have something to do with her specialty, hepatolgoy and specifically the treatment of Hep C.

Nurse  K’s office is not much more than a windowless cubicle, it has no personal belongs, no post cards from the Cape, no Red Sox, Bruins or Patriots bric-a-brac, no picture of a boyfriend or dog, no sloppily scrawled drawing from a niece or nephew. No diplomas or certifications adorn these walls, only a small poster demonstrating the different levels of pain with smiley to frown faces from the numbers one to ten. There are two chairs and a half-length examination table with a roll of schrunchy white paper over it, this of course is where I get to sit. Aptly, it is a very sterile environment - perhaps the reason I’m here is sucking the warmth out of the room, or perhaps it is intentional design.

Nurse K is very undemonstrative, with a slight automated smile and steel blue eyes, sort of pretty and cool. But not cool as in hip, cool as in chilly, like the nondescript examination room we’re in. We sit there as Nurse K talks about a new “protocol.” Protocol is a term medical folks like to use instead of saying, “Before we make you better we have to make you completely miserable.” It’s not their fault - sometimes before you bounce back, you have to hit rock bottom. Unfortunately it’s painful.

Nurse K talks about this new and improved treatment of interferon which is traditionally a combination of pegylated-interferon and ribavirin; two antiviral drugs; one releasing interferon proteins and the other interfering with viral replication. The new addition to the cocktail is called telaprevir, yet another antiviral drug which inhibits the hep c virus.  I don’t understand the medicine behind it; I just hope and pray it works.

It’s a balancing act, a multiple pronged attack. Two things need to happen, I need to get cured of Hep C and I need a new liver. One can happen without the other, but if both happen, that’d be super awesome. It is strange to me that I have two teams of docs, one pushing for the Hep C cure first and the other pushing for the transplant. It’s confusing and scary and having gone down that interferon road before, I’m not looking forward to another trip; it was blurry, painful and dreamlike. I didn’t feel like myself when I was on it. It is a hard pill to swallow, well; not literally -  it’s a pre-dosed syringe that you have to shoot into a muscle. They suggest your leg, but you need to move the shot around your body because one of the side effects is the development of rashes.

The first time I took my cocktail I locked myself in the employee bathroom inside the Lenox Hotel. It was a one person bathroom, so I had privacy. I pulled my gear out, sterilized the infection point, loaded the needle, stuck it in and pushed the plunger down. How reminiscent of another time, a long time ago, doing the same thing, only different, and possibly the cause of my illness. It is nearly a déjà vu experience, years and years apart. I wondered if I was the only Hep C patient who had ever had this sensation.

Nothing happens at first; the medicine needs time to get absorbed into your system. I’m able to go back into the kitchen, stand on the line and expedite, at least pretend to while a sous chef helps me stay focused. Tickets come in, orders get called, my head spins a little bit and the words on the paper fade in and out. I feel a wee bit nauseated.

I take a break and sit in my office, looking around at the collection of cook books, terrine molds, assorted knives and specialty tools. I feel at home among this stuff. A recipe for some magazine I’m working on looks at me from the computer screen. Partially used bottles of booze, wine, specialty oils and vinegars sit on the shelves along with a half used tin of saffron and a small sample box of bar snacks. A half-eaten dinner special one of my Sous Chefs wanted me to try sits on a plate. I love being a Chef and hope this treatment doesn’t affect my value to my team and restaurant. Shortly, my body starts to ache a little, my head pounds a little more, I get dizzy and my stomach starts to spasm and quiver. I can feel an eruption starting to brew in my belly. A couple of gags and I quickly reach down, pick up my unlined trash can and puke in it. I puke some more, I dry heave, I dry heave until my abs hurt and I can taste the bile and acids coming up from my stomach. The sounds coming from me are reminiscent of the sounds from a wildebeest dying on the African Savannah; I’m shocked no one has heard me.  My body lurches and rolls into the trash can as it climbs to a crescendo of jerking, coughing and gasping. In time the nausea subsides; my nose is bleeding a little - did I hit my head, is it part of the protocol? I gasp, catch my breath, wipe my mouth and think, okay, time to go home.

In the car I realize I only have to do this another 48 times, or so.