some days and others

some days, some days are better than other days.
some days I wake up and i feel thirty.
other days, I wake up and i feel like i might nearly be dead.
looking at my ceiling, it looking back at me blankly
searching for an answer in the white on white shadows
i'm so, so tired
but I cannot sleep.
i am a slump
my body hurts, small Sharp little aches
rusted joints ripping away from each other
molar joints pulsating
years upon years of motionless, paralyzed, ennui
it's only been three hours since i've moved to try to piss
forever in my mind.
pray to the buddah, pray the rosary and pray for grace
doze back off with prayer "holy Mary mother of god..." drifting... in and out
light dreams of Siddhartha and the virg morphing into and away from each other.
entertaining and delightful
sleep takes me.
two hours later, i'm refreshed. no more messages to be read on my ceiling
window going from black to grey
god has blessed me with another day
blessed to see the faces i love
maybe make a small difference in their lives.

thank you.

Christmas Eve, a year later.

A year ago tonight I was lying in a hospital bed. Swollen up, bloated, testicles swollen up to disproportionate size, and painful. Calves swollen up like a Soviet peasant woman's, no appetite, pretty pathetic looking all in all. Couldn't even take a Christmas shit. None the less, it was the best Christmas gift I could of ever gotten.

At Thanksgiving, I told my family and friends that I hoped to be in the hospital during Christmas. An odd wish to be sure, it was a req8est that came true. On December the 8th I was lucky enough to be given a new liver and a new lease on life. As I lay there post-surgery I was hoping for no visitors the next day. My wife and kids wouldn't be there, I knew that much. So seeing other folks I loved would make their absence that much more painful. Nearly two weeks early I was sedated, my cirrhotic, dried gourd like liver was pulled from my body and someone, with a bigger heart than mine, someone that died; someone that left other people behind; someone with a much healthier liver gave me the gift of a second chance.

My room Christmas Eve was pretty much like any other budget hotel room with the exception of the thousands upon thousands of dollars of medical equipment. There were machines pumping medicines and antibiotics in my arms; electro pads attached to my chest monitoring my heart rate, pulse and blood pressure. There was a hose attached to my neck with a button on it that I could press when the pain got to be too much. Supposedly it gave me a little shot of morphine. I don't know if it worked or not, I suppose it did, I wasn't screaming out in pain, but it wasn't like any shot of morphine that I remembered. Those old timey shots really shut me down and that wasn't happening Christmas Eve night a year ago.

Tonight, a year later, I realize what a lucky bastard I am. Actually it didn't take a year to realize it, I'm aware of it every waking moment. I don't deserve to be here, but I am, I have a purpose, my work here isn't finished. My two kids, my two ornery, loving, loud, wonderful, sometimes self-absorbed, witty beyond belief children are upstairs sleeping soundly dreaming of tomorrow morning.

I have a debt of gratitude that I'll never be able to repay.

Thank you.

Merry Christmas and God Bless.

Robert

Three Square Meals a Day (off topic)

My recent post about being accused of larceny has gotten me thinking about going to jail. About the couple few times I went to jail, about the time I was walking down railroad tracks in Miamiville and my Dad told me he might be going to jail. Got me thinking about visiting folks in jail. Mostly, I thought about my Uncle Larry and Norwood Jail.

 
Norwood Jail was kind of sort of straight out of Mayberry, North Carolina, USA. But it wasn't really. It was in the sense that it was a small jail, in the city hall, in a small town, but not a country a town. A city town. Norwood was odd. It was an egg yolk city surrounded by Cincinnati, industrial in makeup, neighborhoody, narrow-minded and beautiful all at once. It was a town, city that had too much money and didn't know what to do with thanks to GM, US Playing Cards and a host of other heavy manufacturing companies. A great tax base. So the city fathers built a new state of the art high school with a computer facility that rivaled small colleges; a radio station, a television station and a planetarium. All of which was used by less than one percent of the school's population because we were more interested in smoking pot, skipping school, chasing girls and spending time in vo-tech. We had our own public works, pools, pretty good parks, a real tank in what tried to pass as a public square and our own Mayor's court. Where my uncle, the Mayor presided and my other uncle got to spend time in jail. Presumably sent there by his brother in law. Please, reader, keep in mind, this is all hearsay; I wasn't there to witness it myself. So I'm passing down an oral tradition I've heard across rooms and in bar rooms while sitting on stools talking about my relatively famous and infamous uncles.

My point is the town had some money, at the time and it did some great things with it that went underutilized. We had a great football stadium with a constantly losing team, parks with pools, and an overly attentive and completely bored police department. They didn't have a state of the art jail. The jail... the jail was awesome. I spent at least three nights there, not all in a row, three separate nights and not all of them full, I suspect two of them weren't even documented. I was just dragged in for being a general nuisance and pain in the ass and made to set in a cell, forced to have a teen-ager "time out".

 

As the story goes one of my Uncles, we'll call him Otis, had a penchant for partying it up a bit, flying off the handle a bit, driving too carelessly on the rare occasion, being in the middle of a brawl everyonceinawhile, pulling a gun on someone now and again and in general being sort of a trouble maker. Ahhhh.... role models. He scared the living shit out of me. Terrified me. One look from Uncle Lar... er Otis and you'd march right out of the room. It was great being a spectator, but if got caught in his net, well, look out. Or so I'm told. Generally, he'd just pick me up by my feet, swing me around, shake me up and down and hug me so hard I could feel a turd trying to squeak out of me ass. I loved him.

 

Well the other uncle was a role model of another sort, at least from where I was standing as little boy. Well dressed, articulate, important and all knowing. He didn't squeeze me till my eyes popped out but I got hugs and treated with respect and thoughtfulness. He was just plain nice, and filled with patience. I loved him too in a different kind of way. I saw the best of both men as a little boy.

So, later in life, when I was gett'n into trouble, wearing leather jackets, pierced up, sporting Mohawks and in general doing my best to be a social misfit, every once in a while the town's "undercover" cop would pull over, take his gun off and asking me to "take a shot". Apparently he thought I was tougher than I thought I was. I never "took a shot". But he would drag me in and I get to sit in that cell for a while.

I thought about both those old boys. I was in there town, smarting off like one, wondering what it'd be like in front of the other in "Mayor's Court". I never got the opportunity to find out what that was like because I was always released in the morning or another town's Police came to pick me up for some warrant and minor infraction. In an odd sort of way, it was reassuring, sitting in a Mayberryeqsue jail cell. One of my uncle’s names scrawled across the wall announcing he was here the other residing over the bench. If I was there long enough I got served what I was told was Norwood Jail standard meal rations. Two White Castle hamburgers and a small cup of coffee.

If I'm misfortunate enough to spend sometime in the Natick Jail I wonder if I'll feel so reassured. It's been a long time since I got to "cool" off and I'm hoping I don't have to anytime soon.

Walk down the road.

A slide show of my journey too, during and after a liver transplant. Warning: Some of the pics aren't pretty.

Waking up and being thankful.

 

As non-awesome this moment in time might appear this is actually one of the best moments of my life. It sounds like a cliche when you say... almost as awesome as when as when my kid was born, but actually yes. It was almost as awesome. Almost as awesome because I was going to be around awhile to see them grow up.

This pic was taken about 30 or 40 minutes after they pulled the tube from my throat.

 

Wake Up Call

 

If you enjoy this blog please comment, subscribe and pass it along!

Four or five seconds had passed since I was put under, my eyes where closed and I could hear muffled voices coming from another room. I couldn't tell how many, whether they were men or women. The voices where harmonic and reassuring. I was comfortable, warm all snuggly. Consciously I assumed I was just on the fringe of deeper sedation. I was happy cozy and relaxed. I didn’t know where I was, wrapped in a snuggie, in a womb like state, it was perfection. Completely cozy and peaceful. Then the lights came on.

 

Abruptly my eyes opened, the light was soft and incandescent. What the fuck?! They just put me under, why were they waking me? Not another reject, I’ve only been under a matter of minutes. My mind raced, I tried to talk, and I couldn’t speak. I had something in my throat, in my nose, IV’s in my arms and neck. Electronic sensors taped to my body, pulse indicators on my fingers. Shit. I was annoyed, why was I being pulled out of my beautiful peaceful slumber. Something went wrong! Slowly I realized the nurses and doctor’s hovering over me weren’t flustered or freaked out. They seemed calm and relaxed. They were talking to me, asking me questions that I couldn’t understand. … That’s when I realized I was out of the O.R. and in recovery, the soft lighting, no masks, a sort of normal looking room. Ahhh… I was out. I wondered how it went.

 

The nurses and attendants kept talking to me, asking me questions. Annoying me, they wanted me to do something, I didn’t know what. I think maybe they were asking me if I could hear them. I couldn’t nod or speak. A voice from the door said “Ask him to raise his head.” They didn’t have to ask, as soon as I heard that I raised my head so fast and so high off the pillow they laughed and immediately went into action. Tubes were removed from my throat and nose, sensors where removed and replaced with others. They asked me to raise my head again, I couldn’t, that first head raise took every ounce of energy I had.

 

They asked me to speak, I couldn’t. I kept trying to say water, I don’t know if my mouth moved, I only know no sound came out. The people around me look at me confused, I saw my brother. I tried to mouth the word water. Nothing. That’s when I realized I wasn’t breathing. I don’t know how long it’d been since I took a breath but I felt like I needed oxygen, now. I breathed in, nothing happened, I tried again, still nothing. Now panic set in. Did I go through all this just to die from suffocation? I’d been shot at, o.ded. stabbed, wrecked multiple motorcycles and hit by a car. I didn’t want to go out like this! The medical staff just worked around me nonchalantly as if everything was okay. I tried screaming and nothing came out. I tried flailing around and my body didn’t move. I could feel the oxygen depletion taking its toll. Crazy thoughts ran through my mind, would I come out of this, would I send my life as a vegetable, roaming the minds memories? Finally after what felt like hours but I’m sure was only minutes I was able to take a breath. It was like an anti-plunge, rising rapidly from the depths of cold water and spewing out into the atmosphere gasping for air. I’m sure the reality was a small breath of air, but what a relief for me.

 

I looked around the room the medical staff and my brother looking back at me. They tried propping me up, asking me questions. I couldn’t speak, I wanted water, after scribbling nonsense on a pad trying to write the word water and the symbol for H20 I was finally able to mouth the word water while pointing at my mouth.

 

They allowed my brother to swab my mouth and lips with a sponge with enough water on it that wouldn’t satisfy a bird. Damn, I was thirsty.

 

“Mr. Fathman?” one of the surgeons said.

 

I nodded.

 

“The operation was a success. You’re the proud parent of a brand new liver. It couldn’t of gone any better.”

 

I nodded. Gave him the thumbs up. Smiled slightly.

 

I looked at my brother, tried to write 1,4,3 on the pad of paper several times. He looked at me confused. I tried giving him the one, four, three sign with my fingers. Smiling he looked even more confused. He took my hand as I struggled to signal to him and put it on my chest.

 

I was happy. I knew what I was trying to say to him. I love you.

How to meet a new organ.

.
Binders, paperwork, medical devices laid all around and on me as I said goodbye to my mother. Scrubbed up medical personal scurried about and they wheeled me across the hallway to MY operating room.

Being in dozens of "procedural" rooms and seeing television O.R.'s didn't prepare me for what I saw. This place was huge, bright, off white subway tiled, so many pieces of machinery blinking, beeting and hissing, large and small attached to walls, hanging from ceilings, arranged neatly on carts. Bodies moving in different directions, Reassuringly it reminded me of a kitchen. I felt the room had a life of its own, it felt like it was breathing heavy, slowly inhaling and exhaling. Organized chaos a spastic dance. 

I wasn't fazed or panicked in the least, rather at peace. At peace with my maker, at peace with possibly not leaving this room alive. I was resigned to whatever God had in store for me. Laying there with all those anonymous people floating around me I was so, so thankful. My only regret... that I might not be there to see my children grow up. The one small tinge of occasional panic was that. Please let me witness my children's milestones. Please let me be there to help them, pick them up when they fall, offer councel when they're lost. Please, please, please.

With those thoughts running through my head, I was strapped down, my gear was exposed, I was shaved and the "going under" procedure was explained to me. As the doctors and nurses where tidying up their last minute details everything around me slowed down to super slo-mo allowing me to take everything in. The anesthesiologist looking at vials of liquids and reading numbers on charts, docs conferring with each other in a corner, someone asking me what sort of music I want; does it make a difference, I won't be awake to enjoy it, he smiled a big toothy grin. Then I cocked my head and looked behind me and over my shoulder and I saw it.

Two people in scrubs where sitting on opposite sides of a table, in between them a stainless steel bowl sat filled with a slurry of water and ice. I smiled to myself, it was they same sort of bowled I made hollandaise in thousands of times. They seemed to be wearing special gloves. One reached into the ice water and pulled out a sealed plastic bag with a tag and bar code on it. The other cut the bag and spilled the contents out into his hands hovering just above the ice. The two men took turns inspecting it, rolling it over, treating it ever so gently, examining every inch of it. What they were looking for I didn't know. But they seemed to be giving it the same care and tenderness of a new born baby or a rare archeological find.

I knew it was my new liver. With the exception of my children I'd never seen anything so beautiful. It was a warm, soft rosy pink. Looking at it I felt it radiated a soft pink light, it seemed to have an internal light all its own. It was as if I could feel the warmth spilling off it. There was my chance at a second chance. There was a gift. I could feel a tear running down my face.

My chin was gently forces upright, a mask was lowered over my face and I was told to count backwards from ten. Instead, I started saying a Hail Mary for the person that lost their life, the family that lost a loved one.

And I went to sleep

Still waiting.

December 8th, 2011

Of course I answered the phone, there was no question. I was tired, the timing was horrible, the odds of an actual transplant happening in my mind where slim but I had to make one more trip. Worse yet, I had to wake my mother to drive me. I figured it be two trips up and back to Indie in one day. But I was lucky enough to be on a list, someone lost their life and many people lost someone they loved and I'd potentially get a gift from them. It wasn't even a choice.

I didn't call anyone on the way up to the hospital. Previously I was called up twice and sent home twice, the disappointment was smothering, I knew my time would come, but when. Driving two to three hours anticipating the knife, going to sleep with the possibility of never waking up or waking up with renewed hope! Wow. What a mind fuck to be turned away. The first time I was called up I couldn't contain myself. I called everyone I knew... "Guess what? I'm on my way! I'm getting a new liver! I'll be back to my old self in a matter of weeks!!"  I ate my words. I was sent home. My wife got on a flight only to turn back at her lay over after I was told they wouldn't be cutting me open. At the time, I thought it was selfless of her, keeping OUR interest and the interest of our children at heart. Now, I know differently.

I didn't feel sorry for myself through this whole ordeal. I felt blessed. I was thankful. Lucky, presented with a fight, something that would make me stronger. Never backing down from a fight or a challenge I was ready to meet this one head on. Remembering the day Doctor Chueh told me I was sick it was sort of a relief. Oh, this is how I'll die I thought to myself. Old age, a motorcycle accident, a drug overdose won't be my end after all, liver failure, cancer will be my demise. Of course that's only the musing of a romantic mind and when you fall in love, have children and fall in love with them everything changes.

I prayed and pled feverently that I might make it through this ordeal just for them. Personally, I pretty much desevered anything that came my way. Those that were close to me didn't deserve any of the pain, suffering, tears or drives and sitting by my bed side that they endured. My family and friends are filled with grace. I'm one lucky bastard. My best friend from high school, who I hadn't seen in years made the drive up with his son just to "look at my scar". He also held my hand and told me I was an ass hole, prophasized that I'd "still throw a foot ball like a girl" and that my left wing polotical slant was pussyesque. I saw love and compassion in his eys and was thankful and sorry he was there. That all came a few weeks from now, I wanted to share about the night of the seventh.

We drove up in silence to Indie, we nearly always did. My mom drove me up mostly and today wasn't any different. She had a tape of the Rosary that she played a lot in the car. I found it annoying after awhile but I do Love the Rosary. It was so often monochromatic in it's prayer. Sister "without any inflection" in her voice needed a little Black Southern Baptist thrown in everyonceinawhile. Sounded like a loop.

We made the drive and I wasn't very hopeful about a new liver. I couldn't allow myself to think I'd actually go into the O.R. my short history being as it was. So, I got checked in and went through the procedures... vitals taken, chest x-ray, i-v implanted, showered, shaved. Lie in bed and wait. The anxiety was, well, I can't describe it. You're in a bed, with curtains drawn slightly, maybe one person and their family are waiting too. Are we waiting for the same organ? Is this a competation?! Cuz I'll kick that old ladies ass laying across the hallway if I have too!! Actually, she could probably take me down in the shape I'm in. There are no updates, three in the morning? Is the organ here, where is it coming from? How often does a patient get sent home? Can I get something to calm me down? Yeah, I look calm but I'm freaking out on the inside... my heart is beat'n a mile a minute. Oh... words with friends... good idea... I'll focus on that for 15 seconds.. can you send that nurse back in that likes to talk about food? Where she from again? Cuba? No, Trinadad. Cool, I'll have some curried goat.

The anesesaogist arrives... eventually. This didn't happen the last two times, must be a good sign. Hi... Yes. I'm ready, I'll sign those and anything else... What? It's still not a go? No worries, I'll just lay here. Happily. Yes, for weeks. It's not a match, no worries, take the bad one out, give me the new one, I'll test drive it, we'll make it work! Many more binders arrive with requested signitures... Does this mean I'm going in? Is it going to work.... No Mr. Fathman, we've actually put people under and pulled them out after we realized it wasn't a match or a good organ. Oh....

So I lay there waiting patiently, trying to play words with friends, thinking about how great my future will be when all this is over and praying.

I encourged my mother to leave, she doesn't. It's cliche but the minutes seemed like hours and the hours seemed like days, but the days, well, they seemed like days. Okay, I'm getting dramatic. It felt like a long fucking time. Around 9 am they said we're going to give this one a shot, I was dumbfounded, emotionless. it was happeneing. I suppose I was to tired to really sort of cared. It all seemed automatic at this point. Relief. Finally an ending of one sort or another in sight, at least so I thought.

Passed futuresque looking machinery, tanks of gas keeping people alive, carts backed with medical devices, medicines and shlelves of sterile looking hospital linens. My grandmother's rosary in hand I was wheeled through a maze of hallways. It felt like I was below ground, but I could of been anywhere, the windowless rooms gave no clue as to where or when I was.

Wheeled into a small O.R. prep room the medical staff went over me again, tried to explain the process to me, again. My mother sat on a chair, in the corner, smiling reassuringly. Again, I asked, are we going to do this? And again, I was told, We're going to try.

"Mom. Go home." I said.

"When your brother gets here I'll think about."

Well then. Take a picture for posterity's sake." I said smiling.

What a difference a year makes.

In the words of Joey Shithead of Doa and William Ernest Henley I've come out Bloodied but unbowed. A year ago today I was yellow, bloated, stiff jointed and hazy. Everything hurt from shuffling across the room to taking a dump, taking a piss felt like thick noxious liquid. Unfiltered from my failing liver. My body was slowly shutting down, I could feel the roots of my teeth screaming. My prognosis didn't look good from where other folks where standing. I think everyone around me knew my time was limited. I didn't. My decline was very gradual and slow, a trickle. I lived with it so it wasn't as shocking as it was to those that hadn't seen me in a year or two. I could sense the hidden shock and horror of my appearance on the faces of those who hadn't seen me in months and months.

As I was saying many folks had written me off including my wife. Last rights where given to me while I spend five days in hospital with amonia on the brain. My liver doc's in India said I had 8 to 12 weeks to live if I didn't get a new liver. I think everyone knew but me, thankfully. I was blindly optomistic.

A year ago today my Mom and I made the drive from Cincinnati to Indianapolis to sit in my doctor's office and hear him say "It'll be soon, it'll be soon. You're in bad shape, we know that. You've been called up twice and sent home twice. That tell's us you're very high on the list. Your turn will come." Is there anything you can give me for the pain I asked? I feel like shit, will I ever feel any better? "...everyone is different, I can't give you anything for the pain. Your time will come." The day was grey, all days where grey. Talking didn't come easy on that long ride back to Cincinnati.It was quite, my mother occasionally reading the signs we've passed a dozen or so times out loud. It was annoyingly reassuring. I could close my eyes and know exactly where we were and how long it'd be before we pulled into her drive way by the frequencey of her sign readings.

We got home around six o'clock. I spent the evening shuffling around the room. Wearing baggy fitting flannel pajama bottoms, drinking ensures and channel surfing from the food network to c-span. I was tired, but couldn't sleep. I lied down, it was 12:36 am, my phone rang, I picked it up and saw that it was a blocked caller. I almost didn't answer.

Invictus

Out of the night that covers me,
 Black as the pit from pole to pole,
I thank whatever gods may be
 For my unconquerable soul.

  In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

  Beyond this place of wrath and tears
 Looms but the Horror of the shade,
 And yet the menace of the years
Finds and shall find me unafraid.

  It matters not how strait the gate,
How charged with punishments the scroll.
 I am the master of my fate:
 I am the captain of my soul

One Year Later

Wow... weee.... Creeping up on a year and still wondering what the fuck just happened. I'm blesses, confused and swimming up in an eddy, catching my breath on what a lucky bastard I am. Nearly to the date it was a year ago that I went under the knife, mu old liver, since described as a rotting dried out gourd was pulled from my body and replaced with a younger, stronger, much more riper gourd that could do the job it needed to do. Bascially, detoxing me body. Unforuntetly, part of the detox was trying to get rid of the hep c, hvc, and it couldn't happen. A new liver is a new lease on life, not quite the mortgage and down payment. Maybe, if I'm lucky, another 10-13 years, if I'm not, less. But.... I am blessed so I'm expecting another 20 minium. Sorry to the folks that live with and around me, interact with me on a daily basis. But I suspect I will be a pain in your arse for a wee bit longer. Happily. A lot has happened, in the last 12 minonths... lame but true.... so much.. December 8th... My liverversary. a year ago. I don't think about it much really. Just pray pretty much every day, giving thatnks. My favorite pray..... ThankyouwhoeverthefuckYOUare.... my second most favorist is the hail mary, archaic, beautiful, poetic. Everything so many prayers in The Catholic Church have to offer... this is so much the opposite. I love the virg and whether she is real or not, she, her idea, ideal, idol and icons helped me through the fire i got walk through. Waiting for the liver I sort of thought was the hardest part. It really wasn't that hard. I didn't have the strength to make it hard. I hurt. My body was pretty much in constant pain. So, I really didn't have to dwell on when it would stop. I knew it wouldnt. Until the end. New organ or worm fodder. It was easy. "Shit.... Will I feel better to mary.... ""hopehopepraypray"" nope, chances are I'll feel worse. Things were easy once that thought was accepted. I have more to share and don't know where to start or end. I'll just say as my Liverversary creeps neary, I'll do more praying, allow myself to be intrespective, hopefully more forgiving, but I will always be seeing my cup half full if not over flowing. I'm one luck mother fuckers and always have been. Good Bless and writeat you later. Liverserum

the Judgement of Cruelty

As a child and a young man I didn't really participate in the "normal" aspects of cruelty that my peers were partaking in. Magno-burning ants (the practice of hitting ants with the concentrated sun ray of a magnifying glass until they spontaneously burst into flames) pouring salt on pill bugs, de-winging a beetle and pulling the legs off of the daddy-long legs. It was creepy but I accepted it, wasn't my cup of tea, even the lightning bug smear was a bit tough to handle and made me squeamish. If you don't know it, it goes like this... catch a light

ning bug, clasp it in your hand until you find an unsuspecting victim, quickly open you hand and smash it against your target. Preferably a cute girl a couple of years older than you, mash and smear the bug and glow bulb up and down her arm. Run and howl like a wolf into the darkness. Wooing girls old school, like nineteen seventy twoish. Then every neighborhood had that idiot whose mom only fed him popsicles and thawed out TV dinners. In our neighborhood that kid was called the turtle killer. He was even too cruel for the most seasoned insect inquisitor. Sweet and smiley when the grown-ups where around but the first to throw a cat into a bucket of water or tie m-80's to the tail of a dog. I used to tell the kid to treat the animals the way he'd want to be treated... so did Fritzie, Steve and Foley, he'd never listen. The golden rule. I only think of this now because isn't that the way we all want to be treated? Treat me the same as you'd like me to treat you. In hind sight I suspect the turtle killer was only acting out on abuse that he'd been exposed to or witnessed. Possibly it was from neglect or abandonment. Or maybe it was just all those cold, partially frozen TV dinners.

A favorite from Dylan Thomas

Do not go gentle into that good night, A father's love is strong, an iron bond; Rage, rage against the dying of the light. Worth any price, worth any fight, What came from you is yours, must not be gone. Rage, rage against the dying of the light.

familiarity breeds contempt

Seven days and it will be exactly six months since my transplant day. Wow, what a ride. So, so much has happened in my life. New liver, recovery, new lease on life, getting reacquainted with old friends, finding faith and the ultimate betrayal. With every cloud comes a silver lining, does that imply with every silver lining comes a cloud. Welcome to the vicious circle and the mortal coil. What I find the most interesting is how people who openly profess their love and loyalty can spin 180 degrees with multiple acts of duplicity. How every minute of every day is criticized and examined for flaws with microscopic exactness. Every small infraction is over blown to epic proportions. The meanings of forgiveness, compassion, understanding and empathy are lost. Does anyone have the answers? I suppose familiarity breeds contempt. Postings of my trasnplant and early life experiences as well as current events will follow shortly.

I'm Back!!

It's been awhile since my last post, for good reason. In the words of my kid, I've got a new part and I'm doing awesome. My last post was late November chilling on a hospital gurney waiting for a liver, well I was sent home, second time, but they say three's a charm and it was for me. I didn't make any posts because frankly I was in a brain fog and the mere act of typing I found exhausting.

On December 7 I had an appointment with my hepatologist so my mom and I made the trek up to Indie and were back home by 6:30. My cell rang that night with a blocked call at 12:35, it was Indie, well, we were back in the car by 1, in the Hospital by 3 and I was prepped and rolling into the O.R. about 9:30. It seemed like I closed and opened my eyes and it was over, I was in a different room, soft lighting, my brother was there looking like an angel as nurses and other medical types where pulling hoses from my mouth and who knows where else. I spent 20 days in the hospital and now recovering in Cincinnati with two visits a week up to Indie to have the docs look at me.

Every day my energy level is a bit better so I'll be back to posting again on a regular basis, I've attached a photo of the incision, be forwarned, it isn't pretty.

Lastly, if you're a prayer sayer or good thought thinker please take a minute and send something out to the donor and his/her family. All donors for that matter, they're sacrafice will allow me and thousands of others a second chance. If you're not a donor, please consider it, you can't take it with you.

Blessed,

Liver Serum Man

Nov 28, 2011. NL day

Laying in hosp waiting for a liver. Wish me good thoughts, prayers and wishes!

Get your head out of the gutter

Yesterday I woke from a nap with my cell phone ringing in my ear... Indianapolis? No. It was my friend and cousin from the Seminary where I am staying. Hi, how things going... good... thanks... What?! The Rector wants to know why I have a video camera on a tripod at the end of my bed?

Funny... It's not a video camera, it's a still camera and actully it's is facing a chair. A chair which I sit in every morning while I take a picture of my face. A picture which will be in a collection of other pictures making up a slide show of how this illness is effecting my appearance and hopefully how the transplant will effect my appearance positively during recovery.

No, I'm not filming myself doing something unsavory.

Welcome to Indiana, now go home.

Welcome to Indiana

Napping has become a past time of mine, not intentionally, I’d have to call it a symptom of having Hep C. If I never nap again it won’t be soon enough. I’ve mastered the art of napping, I can nap in completely silence, with inches of a back hull making a perfect level plane; my nieces crawling all over me and wiping witty snotty rags across my face. I’ve napped in a lot of places one my consider unnappable; pulled over on the side of the expressway, traffic whizzing by; the library as the young street hookers are going into the bathroom bartering off blow jobs to each other for ice cream sandwiches; a Starbucks I’m ashamed to say (not the napping, the admitting I’m spending time in a Starbucks) and of course my proudest napping moment on the toilet at a Biggs superstore sitting on the commode, pants down around me ankles…. Ahhh pride. All of these aren’t necessarily odd places to nap for some, but for me a person who likes his naps behind closed doors in his own bed with the slightest amount of day light flickering through.

It was a moment like this when I got the phone call. THE phone call, from Patty, PATTY, a transplant coordinator in Indianapolis. As I dug through y covers for the phone and saw that it was no particular sense of urgency hit me. I figured it was someone telling me I had to have to be drug tested or a medication change or my meld score had dropped. But no. It was Patty asking me how I felt….”We’ll I felt like getting a liver transplant of course, who wouldn’t on such a beautiful day” I was partially joking of course as she responded with “How soon can you be here?” RED ALERT!! RED ALERT!! So I hit over drive, or my version of overdrive, I should call it sloverdrive because I do move a bit slower and methodically than I used to. First things firsts call my wife in Boston and let her know I was headed to Indidie for the staple, she didn’t believe me…

“Yes… Yes I swear… I’m on my way; I hope to be there by six thirty…”
“Okay, yeah… I’ll let you know…”
Next get a ride, I called my mom. “You feel like going for a ride I said?”
“Where to?”
“Where do you think?”
“I don’t know… that’s why I said where to? You need to go to the pharmacy?”
“How about Indie I replied”… “For a new liver….!!!”
“You’re lying.”
“No Mom! Seriously, it’s time!!”
“Honestly…” she said
“Honest, I need to be there in two hours.”
My mom finally recognizes the panic and excitement in my voice and agrees that I probably am in line for a liver. She can pick me up in 20 minutes.

I hurriedly pack a bag and wait for what seems like forever out in front of the seminary. My Mom shows, I throw my gear into the back, pile into the car and the phone starts ringing as I slowly turn into a Zombie. Literally I felt like I was shutting down, suddenly numb. The time has come and all adrenalin has rushed out my body. My Mom worked the phone and the wheel, I sat there, mildly content as the miles moved below our feet. Not fast enough, always sarcastically encouraging my mother to push the pedal just a wee bit harder. Don’t worry if we get pulled over… I’m sure the Trooper will chaperon us the west of the way. Ensuring our speedy safe arrival. Didn’t happen, Mom kept it 4 miles over the posted speed limit as she read slowly read the billboards like a stack of tarot cards.

Eventually, between my mother’s heavy foot and the annoying GPS lady spouting off every five minutes we arrived at the front door of IU. I was promptly dropped off, worked my way upstairs and was introduced to my own personal nurse Janelle. Very nice and orderly and not forthcoming with information. They hadn’t “Procured” the liver from the donor body yet. I didn’t like that word, procured, at least it was better than reap, harvest or gleam. So they prepped me as my Mom worked the phones and told everyone to sit tight. Too late for my wife, she was already on a plane headed to Boston via Washington D.C.

Janelle informed us that this wait could take all night depending on when the procured the organ. She said she’d seen some patients wait as long as 12 hours before they went into the O.R. So we proceeded to make small talk as approximately 12 vials of blood where taken from me, I experienced an EKG; chest x-ray, blood pressure, temp and weight analysis. The only thing left to do was to shave my belly and undercarriage, give me some sedation and expose me to the humiliation of an enema. She said I could do the enema myself if I liked. I liked, one less piece of my dignity thrown into the bed pan. So, she stuck an IV in and we waited. My mother went and got a sandwich from the cafeteria, I listened to the chatter from the nurses’ station and waited.

Janelle buzzed around prepping for the upcoming procedure as I laid there under the harsh florescent lights wishing the doc would swing by with some info or a mild sedation to take the edge off. Neither happened. The phone rang, Janelle was called over, a brief hush conversation followed and as she hung up she said “Oh Shit!”

She came over to my gurney.” Not tonight kid, that liver wasn’t going to work for you or anyone else.” I felt the blood run completely out of my body, where it went I don’t know, but now, now I was sure I was a Zombie.
“What was wrong with it?”
“Don’t know, they don’t tell us”
“You have another back there?”
She smiled and shook her head no.
Damn I thought, all those people, waiting to come see me, damn! My wife! Flying from Boston to come see me.
I took a deep breath reassuring myself that this meant I was at the top of the list and it would be sooner than later before I was called again.

We got a hold of my wife, she got on a plane after only being in DC for seven minutes. Our children needed her more than I did. The IV was sadly taken from my arm and my mom and I gathered my things to head back.

The ride back to Cincinnati was much longer and quitter, I felt like talking even less than I did on the way up. Mom kept a positive attitude as we sped down 74 just 4 miles over the posted speed limit. She was a good sport and other than my wife I can’t think of another person in this world that I’d rather be sitting next to. We stopped and grabbed a sandwich from some roadside fast food joint which was more tasteless than usual as I thought about this experience and what the doctor said to me when I finally got to see him. “We don’t wanna put a shitta livah in ya boy… ya already got one of ‘em”.

House of the Holy

One thing I can count on when I visit Cincinnati and turning on the radio is that the play list is pretty much the same as the last time I visited and the time before that and the time before that and if I reach back far enough I can pretty much count on hearing the playlist of my senior year at high school. Flirting with disaster, something by Meatloaf, Lynard Skynard and always… always Dog and Butterfly by Heart. Not to mention something thrown in by some lesser known bands. Loverboy for example, how’d you like to be the list of bands that influenced Loberboy. Time to hang up the axe.

After a couple of weeks of crashing at someone’s home and displacing the general order of things tensions whether or not they’re recognized develop. It was time to move on and I’ve settled in Mount Saint Mary’s of the West Seminary. Yes it’s true. I have a small lovely cell of a room recently refurbished with paint and fixtures from Restoration Hardware. Not a Crucifix or praying hands adorn a wall. It is quite barren and quite comfortable. No television, no radio, very, very sporadic internet access and my only other companion on the floor are a Father Shrear who specializes in Biblical studies and scripture.

I’ve never made it a secret regarding my lack of faith and I’ve often mocked the Catholic Church and religion as a whole. I have to admit and eat some of my words; I’m getting something out of this experience. Speaking with some of the older members of the community, specifically Monsignor Lane and the previous mentioned Father Shrear, not to mention some of the young men who are going through the seminary I’m starting to buy into the concept of a higher power or a divine being. I like the structure, orderliness and symbolism offered by the church. Not to mention the familiarity of it all. I like those old Saints glaring down at me and the peacefulness of walks around the grounds and Athenaeum at three in the morning. If nothing else this experience has given me the opportunity for introspective reflection.

So as I walk the halls counting cold tiles while all the young seminarians are a sleep, I run my fingertips along the frigid walls looking for answers, waiting and hoping this new discovery will help get me to through the end, healthy, happy and a productive member of my family. Listening to the young priests and older Priests, no, no Friar Tucks, talking about their responsibility is almost metaphoric of mine. They have their flock of souls, I have my very small gaggle to take care of, share and hopefully teach write from wrong. So I sit quietly in the dark choir with the saints looking up me, wondering what I of all people am doing here. Waiting and feeling blessed to have such a peaceful place to count out the days.

Interferon Revisited

The plan own my arrival was to jump feet first back into my interferon treatment for at least 4 weeks. After four weeks if the viral load hadn’t dropped there wasn’t any point of continuing. A double edge sword, it makes you feel worse than you may have ever felt in your life, but to get the cure, you have to keep chug, chug, chugging along.

The protocol consisted of three different types of meds, two taken orally, daily and the other taken once a week via a shot. So my sister in law, the nurse, gave me my first shot Tuesday evening and I popped a total of five pills that evening. Nothing right off the bat, no Bruce Banner moment, no David Naughton moment morphing into a werewolf in a London flat. Nothing, quite anti-climactic thankfully. All in all I’d get one shot a week, 84 pills a week plus the 70 I was currently taking along with the occasional 120ml of liquid lactulose syrup and the often needed Ambien.

The night held nothing for me, not until at least one or two in the morning, I don’t know for sure, because sometime around that hour is when I had the onslaught of bombarding proteins and medicines. Odd how something that is supposed to help you causes so much discomfort. Those are the doctor’s words, not mine, discomfort is putting it mildly. It’s like calling an open schrapnel wound an ant bite; disembowment a mild case of dysentery and a severed head merely a flesh wound. Shit! FUCK! Piss!!!! There hasn’t been any cuss words to describe how I felt, every cell, every fiber, every last part of me was screaming out in pain, looking for some release. I could hear my self moaning and screaming or so I thought, apparently I wasn’t or at least I wasn’t loud enough to wake anyone else in the house. If you’ve ever had such a severe case of the flu where you where shivering gold and sweating one minute, feverish the next, nausea but nothing coming out; head in vice grips. My collar bone ached like it had been shattered, the muscles in my hands and hips where seized up and I could feel the roots of my teeth aching in their sockets. It reminded me of heroin withdraw if anything, only worse. I was able to doze in and out of sleep, waking up, screaming and sweating and shivering then spending the next day wrapped in layers upon layers of blankets until I felt so feverish I ran a cold shower and shivered on the tub floor until I felt I cooled off.

Friday I was to see my new Hepatologist in Indie and it couldn’t come soon enough, I was suffering from fatigue, malaise and reverse sommnia and adrenal fatigue syndrome. Jackpot was hit when Doctor Lacerda took me off the meds. His reasoning, the symptoms and suffering generally doesn’t outweigh the benefits and he suspects I’ll have a new liver soon enough and we can address the other issues then. Yippee… my hero. I’m still working out some of the symptoms of the meds, apparently they’re cyclical and I can expect them to be in my bod for a brief more couple of weeks. My next appoint with the good doctor is December 2 and he seems to think I’ll have a transplant before then. One can only hope.

When I’m not wrapped up in blankets and have enough energy to do something other than surf the television I’m spending my time, trying, and trying to be productive. Today is actually the first day where I’ve had enough energy to get out and spend some real time outside the house.

Yesterday I met with a psychologist who can hopefully help me get through this transplant process in a positive fashion, possibly help me find some faith and deal with issues that may arise in my relationships. The whole goal of suffering through this process is to come out the other end with a better quality of life.

Finding myself with enough energy this morning I was out of the house by 8 o’clock and on the expressway to Cincinnati in rush hour traffic. Nice, foggy and not bad at all by Boston standards. I found my way to Oakley Square, my old stomping grounds. Hell, how things had changed. The library was torn down and rebuilt, my old school was now a whole foodish type of joint, the movie theater I first saw Peter Pan at and later would break into and mess about in the projection room was falling apart. The butcher shop and grocery was now a bar, the square was lined with yuppie baby stores, brass fixture shops and overpriced ladies boutiques.

Fortunately some things did stay the same. St Cecelia still stood strong, Courtesy Chevrolet where my buds and I would drop through the roof and sit in the cars was (at least until we got arrested) still there. And of course the church of Christ where I got molested by the mortician that buried my Uncle Ted and Grandfather Still survived resiliently.

Oficially Ofical

Well,

As of monday it is officialy, offical, my blood work and insurance company are allowing me to be listed for a new liver.

Chics dig scars