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.

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.