Header Intro

This is a story detailing my battle with Liver Disease and the events the got me here. It is a story of hope and determination and inspiration.

If you enjoy this blog, please follow, subscribe and pass it along to friends.

Monday, October 31, 2011

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.

Thursday, October 20, 2011

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.

Wednesday, October 19, 2011

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

Tuesday, October 18, 2011

The CIty Where Pigs Fly

Today is the first day of the rest of…. I suppose the first day of the rest of my life. Flying into Cincinnati, waiting indefinitely for a liver. The sooner I get sicker the sooner I might get a transplant. I haven’t been sleeping well, dream and thoughts of leaving my wife, kids and life behind. What will they do? What will I do without them? They’re stronger than me. I’m weak in compareision. Dreams of being a burden, how have I burdened my family with the illness over the past few months, years, please let the sun shine on us all on the other side of this experience.

As I sit on this plane, all incase in plastic, metal and rivets covered in clouds at 28,200 feet I imagine the plane unraveling and falling, not unlike I have in recent years of my life. Next to me sits a man who seems completely immersed in the corporate culture of America, I can tell he is slightly annoyed with the idea of getting to sit next to me. Sitting there fiddling with my IPod the jack isn’t plugging into the unit as snug as it should and the soothing sounds of FEARs Let’s have a war are barely audibly violating my row partners personal space. After more fiddling, I’m still failing at quieting my IPod, I turned to the man in next to me letting him know I apologize and if I couldn’t get it to work properly I’d shut it down, “I didn’t want to disturb him.” . He replied, “Too late, you already have.” With that I rudely shoved his arm from the shared arm rest and replied… “Well, if it’s any conciliation, the stench of Homogenized America reeking up the row has offended me as since I sat down.”

My plan for the next few months is pretty basic. I want to re discover the person that was me. I miss that person. He got lost in the world of alcohol and drug abuse, the world of self-absorption, with his career and for whatever reason lost sight with what he card about in the world. I liked that naïve little fucker, he wasn’t terribly strong or thought but overwhelming generous and he had a good heard
A couple of things need to happen while I’m on the stretch. First of all I need to try and get and expel this disease that is ravaging my body and consuming my mind. This in turn presents me from focusing on me. Interferon is the preferred method prescribed by my heopatologist. Hemp oil is another potion from the Fertile Crescent preached to by my cousin and last a coffee enema seems to be my business partners preferred method of detoxification and reaching a cure, even though he himself has never participated in the stinky art.

I’ve traveled through this tunnel before and I’ll stick with the advice of the PR actioners
of western medicine and re-walk down the path again. It’s a miserable road and I think I’ll begin the process tonight or tomorrow. I could come up with a thousand of reasons why another time might be better to start… but then, I’d probably never get started. My brother’s wife is a nurse, so at the very least she gets me off to a running start with my first injection.
After a few days at my brother’s house and reconnecting with some family members I’ll be moving into a seminary. Now, full heartedly begins the quest for faith from an atheist. It’s not that I don’t not believe in god, bit rather I don’t believe in him. I’m open to the possibility. I wish I did believe, the concept of faith I find reassuring. I am a man who has been presented with a series of low expectations my entire life so why should I have nay now in regards to God.

I’ll be spending time with young, hopeful seminarians, these young hopeful gentleman have
invited me to their community and have asked me to participate as much as my health will allow me. I also have a few sessions with a professor of theology a some spiritual directors who can probably lead m the direction of finding my own faith. I’d be very happy if I come out the other end of this a little less skeptical. The last leg of my journery is at Mount St Joseph. Originally a college for producing nuns of the sisters of Charity. More recently they’ve expanded their horizons and numbers and now include men in their members of their student body. My Aunt s a member of the order and sat on some board or held some high felutin job for many, many years. She a woman who knew where her home was and found contentment, if not happiness there. Not only did she assist in guiding the order but her work has taken her all over the world. I remember one incident in particular, she was so excited, and on a trip to Vatican City she was possibly granted an audience with Pope John Paul. Well, as luck would have it, while she was touring and waiting in Rome the Pope up and died. Fortunately she was abel to participate in the viewing which I understand was a very moving experience in its own rite.

So they have a little apartment out there at the mount which the nice Ladies will allow me
to set camp up until I’m called to Indianapolis for my new and improved liver. Maybe I’ll make them a pie

Saturday, October 8, 2011

Not so fresh fruit and rotting vegetables

Back to My Roots. Sort of.

Recently I flew into Cincinnati to spend time with my family and jump through some hoops, err… have some medical tests done in Indianapolis. The facility there is great; one of the best in the country, actually top four and the director is shooting for number one. I like that, I find it reassuring. Better to have a liver transplant at a place that’s trying to be the best rather than one that does two or three a year. Not to mention that the wait time for a liver is significantly less than in Boston.

I had done some preliminary work before arriving in Indie by sending them all my medical records, getting tested for PPD, LTD, a chest x-ray, endoscopy and my personal favorite the ever so popular colonoscopy. Come on Doc, the least you could do is by a fellow a drink. As always with the transplant teams they’re looking for reassurance that you have the proper support to help you get through this process, so I had my mother, brother and sister accompany me though the three day grind of taking my shirt off, pressing, poking, CAT scans, MRIs, blood drawing, urinalysis, ultrasounds, echo-cardio testing, psychological profiling and a two hour Q & A with a social worker.

I’ve learned to forget about dignity and pride through this whole experience. Taking my shirt off and exposing my distended bloated stomach (I’m guessing the equivalent of a 5 month Prego belly) or having an ultrasound tech shoving my ball sack around and pressing her cold jelly tipped wand into my groin while looking for blood clots isn’t terribly embarrassing. In this case the end certainly justifies the means and I will suffer any indignity, humiliation and degradation the folks at Indian University Purdue University Medical Center care to throw at me. As long as I come out the other end of this process with a better quality of life I’ll smile happily as you tell me to turn my head and cough or probe my butt hole all in the name of making me well again.
I noticed a few things while driving through Indiana and spending time in Indianapolis. They grow a whole bunch of corn and soy beans; it’s very, very flat; there isn’t really a well “defined” cuisine; grown men with really big belly’s wear


overalls, proudly and everyone is really, really nice. Everything moved a bit slower than here in New England, when people asked me how I was doing, I generally got the feeling that they sort of really cared. Everyone sort of seemed to be happily moseying along, saying hi and generally being congenial. For better or worse if I found myself lying on a technicheans examination table long enough I got to learn a fair amount of their life story. It was a nice distraction from the business at hand… learning about the Pulmonologist son’s job as a restaurant expeditor at one of Indie’s “better restaurants”; talking soul food with the phlebotomist; yacking it up with the medical assistant about her cousin Garnet who married a hair lipped tattoo artist and body piercer from Valparaiso, home of the obsessed sign builder or learning the trails of the geriatric Zimbabwean Cardiologist’s efforts in the tri-athalon. I liked these people and I was happy at the thought of them cutting me open and giving me a new liver. They were solid, no frills, hardworking, easy going middle American folks.

I was hopeful and optimistic when I got back into the car to drive back to Cincinnati with my sister. The only thing that was bringing me down was the deabiliting muscle cramps I was having all over my body. Apparently the heavy dosage of diuretics I’m on makes fluid “rush” out of my remaining muscle tissue to God only knows where. Apparently it’s creating a resivoir on my belly. This fluid rushing causes cramps that are more painful than any pain I can remember. They generally start in my hands feeling like a powerful squeezing handshake to the point where my hands and fingers seize up and I can’t uncurl them. My hips, quads, neck muscles, feet and toes shortly follow suit. Occasionally whatever muscles I have on the crown of my head and the front of my shins seize up as well. It’s a really party and nothing relieved it. At least not until Nurse Ellen told me to drink tonic water. Quinine, the old malaria cure. Well, I did and it worked. I’m drinking about 18 ounces of tonic water a day and have only tingles of cramps. Thanks nurse Ellen.

The rest of my time in Cincinnati was spent hanging out with family, sleeping, eating a little and trying to apologize to my step father for possibly hurting his feelings in a previous post. It wasn’t my intention for him to read it, but he did. And I knew he was pissed, I’d be if someone portrayed me in such a negative light, even if it’s true. Actually, I went easy on him; I didn’t mention the spankings and the physical intimidation. Who the fuck spanks an eleven year old kid? Oh, an ignorant hill billy from central Ohio and a father who’s had too much to drink and not feeling too good about himself, that’s who.

I went to pay a visit to Mr. B one Saturday afternoon; he was lying on the couch, looking weak and feeble with an oxygen hose running to his nose. My first inclination was to hold him down and step on the hose, denying him of his much needed canned gas, watching him slowly turn blue as his life slowly seeped away. It would be freeing, for me, my brother and sister, my mother and him of course, from his bitter miserable scroogie existence. He would be at peace, worm fodder, pushing up daisies. I’d hold his hand gingerly as I took him to meet his maker. The sound of the golf game on TV brought me back to reality and my fantasy ended. I’m a bigger man than that so of course I didn’t follow through, instead I asked my mother to leave the room and attempted my apology.

“Listen, I have something I want to say to you…”

“I got nothing to say to you, I don’t wanna hear whatever it is you have to say any way.”

“Well, you’re going to have to, because apparently you can’t get up and walk away from me.” I said.

His face reddened, he was getting angry and I’m sure he wanted to throttle me and I’m sure he had enough strength in his hands and arms to do just that but I wasn’t planning on getting close enough. He wasn’t hearing it… “it wasn’t my intention to hurt your feelings…”; “I didn’t write it for you… I wrote it for me…”; “Listen, it was 35 years ago, neither one of us are the people we were then!?” My apology was falling on deaf ears, as far as he was concerned the stone had been cast and there wasn’t any going back. He hollered at me, letting me know that he knew how I felt about him and I should have written it in a diary and not shared it with anyone if I wanted to get if off my chest.“Well, go fuck yourself if that’s how you feel!” I shouted over his ranting as I left the house. Finding that satisfying, I turned and walked back in the room “Listen” I said “… we’re bigger than this.” . “I think you’re an idiot for writing it.” He recanted. “We’ll in that case go fuck yourself again.” Saying it felt really good. It was immature, inappropriate and certainly not in the spirit of an apology but it felt really, really good. One simple sentence, letting him know how I feel about him. I tried. Hard. But after nearly 35 years of listening to his abusive nature spill out onto my mother, brother and sister, not to mention anyone else that didn’t meet his standard of mediocrity.

Now, I just think of him as a baby-man, helpless and feeble, sitting and lying on that couch being waited upon (much to my chagrin) by my mother hand in foot. I call him Tinkerbelle, Care Bear, Tender Vittles and Strawberry shortcake. The next time I see the man it will be all too soon.
I was pissed, relieved and satisfied as I left. I was a little flustered and a little sorry I told the old man to fuck off. Should I have even tried, should I have waited? Too late, damage done.

I decided to clear my head by driving out to the old farm in Lookout Indiana. If you’ve read my previous post Utopia you got a small glimpse of it, beautiful, sylvan, hilly and just plain peaceful. Driving out 74 through the industrial neighborhoods flanking the expressway I felt the memory of my assholish step-father melting away behind me. I could forget about that old prick, my rotting liver and the fact that I may be away from my family for months. Thoughts of riding horses through the woods and sunny glades, swimming out into the pond and treading water wear the spring fed in, playing with my favorite dog Eli and napping on bales of hay in the barn loft. I know it sounds cliché, it does, but that was my childhood or part of it. Finding a quite spot on the farm or in the woods, reading a book and escaping my reality. Distracting myself with Twain, Tolkien and David Morrell, living my life through their words on the page was pure bliss.

My anticipation grew as I got off the expressway onto the highway, each turn and mile brought me closer to the old farm. The roads got progressively smaller, rougher and less traveled, farmers on tractors stopped and waved, children stopped playing and looked to see who the unfamiliar passerby was. Everyone pretty much knew everyone else out here so when an unfamiliar car passed it created a wee bit of curiosity. Finally I turned down E C Road 950 North. It hadn’t changed much, a small white trashy trailer sat at the bottom of a hill all beat’n up and accompanied by a hazardous looking rusted out swing set, couple of beater cars on cinder blocks, hoods open and windows broken out and a some malnourished mangy dogs sniffing around for half eaten scraps in trash heaps. I was sure the hold house was in much better shape, I anticipated the place looked just like we had left it. Climbing up the hill in my brother’s car I passed a grater smoothing things out and trying to fill in the ruts caused by the last several rains erosion. Cresting the hill, there she sat, the old homestead, I could see the barn, garage and our old pastures… what the fuck… our old pastures, which had apparently been turned over with a plow and planted with vegetables which subsequently had been left to rot. It was putrid! One field had rotting zucchinis and squash, another had musk melons decomposing on the vine, half eaten by the local critters. I was aghast; this wasn’t the way it was supposed to be. Where are the sunflowers, brown eyed dairy cows and blue birds singing from a fence post?! As I got closer my jaw dropped in disbelief, the place had turned into a shit hole. The new owners built a new metal shed that had no business being there, all modern, austere and completely out of place. The barn roof was filled with holes and the whole back side had rotted off. Again, beat’n up old cars and motorcycles lie in a giant heap between the garage and barn, and forget about the random giant piles of logs and cleared thicket resting around the yard. Our beautiful old front yard was all mud and slush, filthy tire tracks lead up to the porch of the old house. An old two and a half ton truck filled with card board boxes sat in the middle of the yard, pieces of paper, shreds of burlap, plastic bags and rusted busted up old tools lay thrown about. The trunks of all our beautiful trees cut down to stumps and again, piles of rotting vegetables placed haphazardly. It was distressing but when I saw our old house I sank. The front door had been ripped off, some of the windows were broken out¸ the ugly green siding was covered in rust and mold and the shingles where falling off. Someone had spray painted “paking shed” down the side of the building.

As I got out of the car and started walking around the property I was reminded of my own mortality. Spending time here as a boy, working my way thru puberty, I was young, hopeful and saw the world as a place full of promise and possibilities. Like this land fruitful land; it fed my body as well as my soul. Goat’s milk, fresh corn, tomatoes, our own pork, the peace and solitude of the woods and fields, I was so happy here as things started out that September back in 75. Now looking around, the land was tired and worn out. It looked as if its caretaker had given up on it years ago. I waked around the property, lost and wispy in memories of what was. All the fruit trees were cut down, the back lawn leading down to the pond overgrown with brush, the pond water looking murky and slimy covered with algae.

The only thing that looked the same was the industrial door-less cinder block garage. It was solid, our chickens and ducks used to take refuge in. The old nasty rooster spent his time roosting here when he wasn’t spending his time chasing children and dogs around the yard. No windows, three sides and a tin roof. Sadly, I realized the only thing that seemed to have any permanence on this property was completely inorganic, a product of the modern age. The old fence posts making our corral leaned hap hazardly in different directions, its slats taken and used for some other project or worse, thrown in a pile just to rot for some unfinished project. I walked to the back wall of the garage where the land sloped down to the pond, I remember painting a small mural of The Who’s Quadraphenia Scooter dude and I wanted to see if any remnants survived. To my surprise you could barely make out the make out the male gender sign with the faded letters w h o on back of the guys rain. I started to feel good, a wave of nostalgia swept over me, some things seemed to have some permanence. I took pleasure in remembering the cool sunny November day 35 years ago I painted that mural, I felt satisfied in seeing my bleached out old mural. I felt some things do endure. Then, content, I turned to walk down to the pond… and I saw it. The old rabbit hutch, a small free standing structure with faded red barn wood, falling apart, it’s wire mesh door hanging from a rusted out hinge. Remembering what happened here and why all feelings of joy just sort of wilted. I remembered that things weren’t mostly nice and sunny and idyllic and blissful. That rabbit hutch reminded me that things were mostly fucked up and miserable in the worse kind of way for a little kid.

Tuesday, October 4, 2011

the big move

Just got listed for a transplant in Indie, bitter sweet, Will be arriving in the midwest next week.

Liverserum