WEEK 6
It’s almost routine. Monday again, and same ol’ shot of little soldiers on a search and destroy patrol. I don’t even fret about getting poked. I barely feel it. I get sleepy-tired at various times all day. I nap a little, but the sleepy-tired anemic feeling stays around most the time. That is the only nuisance anymore. I’m told by Dr. Bartley that we don’t check the virus until 12 weeks.
We are off to New York in two days. Once again, a gig is happening well into the week, and I’m a distance from the two Interferon affected days. New York will be a great experience; two shows, lots of press, a radio appearance with Dave Marsh, our old buddy from the heyday of the band. I bitch about the travel, but this is the greatest job in the world. I love it in spite of all its weirdness. “It’s the sound that abounds and resounds and rebounds off the ceiling.”
I wonder why I even care about attacking the Hepatitis C virus. I have two reasons basically. One is to be as strong as I can for my family. I frittered away a lot of my natural health when I was a young person because I was more interested in experience than excellence. Now I have a progressive outlook and a family that looks to me for many things. It’s a housecleaning of sorts. The second reason is that I want to be an example for people who are Hep C positive. If I can inspire someone to pick up the gauntlet and powerfuck the virus out of their system, it’s a worthwhile thing to tell my story. Plus I like writing anyway. So I found a muse for myself at the same time. Ok, all you metal-heads, that’s it for this week. There just aren’t many chilling tales of horror with the treatment. I’ll be back in SoCal on the red-eye Sunday night. I will have the update on the NY gigs and any associated maladies that cropped up with regard to being at war with THE VIRUS. ‘Til then..
After recovering from Hep C, and some other stuff, it's time to push ahead for a better world. Here are some new writings for the present and coming days. Welcome to my Music Is Revolution world.
Tuesday, July 26, 2005
Friday, July 22, 2005
INTERFERON FUNNY GUY: PART 5
HOME
So I was gone all of 5 days, 6 planes, 1 gig. A one–off in the land of the midnight sun. The traveling kicked my ass, but good. I’m still not really over it. As for the treatment, it wasn’t a factor. I only had to take the Ribaviren, anyway. Being at a 10 hour time difference made it fairly easy to adjust my dosage taking time. Merely subtract 2 hours from the current time and that is a 12 hour interval. It worked out fine.
WEEK 5
I went to see Dr. Bartley on Monday. He said my blood count didn’t change too much.*(see editor's note) So, everything was looking good. I did the Monday shot of Interferon when I got home. This time I took Ibuprofen as a pre-med. Everything was smooth this time. The only thing in the last two days that is remarkable is a definite case of lethargy. This may be heightened by extreme jet lag and lack of sleep, that the all of last week was. I, in fact, suffer from insomnia, but haven’t recognized it as such until now. If I can get on a normal sleep schedule, I think the lethargy will go away.
Editor's Note:
*This refers to a complete count of red and white blood cells. A viral cell count doesn't occur until week 12 of the treatment.
So I was gone all of 5 days, 6 planes, 1 gig. A one–off in the land of the midnight sun. The traveling kicked my ass, but good. I’m still not really over it. As for the treatment, it wasn’t a factor. I only had to take the Ribaviren, anyway. Being at a 10 hour time difference made it fairly easy to adjust my dosage taking time. Merely subtract 2 hours from the current time and that is a 12 hour interval. It worked out fine.
WEEK 5
I went to see Dr. Bartley on Monday. He said my blood count didn’t change too much.*(see editor's note) So, everything was looking good. I did the Monday shot of Interferon when I got home. This time I took Ibuprofen as a pre-med. Everything was smooth this time. The only thing in the last two days that is remarkable is a definite case of lethargy. This may be heightened by extreme jet lag and lack of sleep, that the all of last week was. I, in fact, suffer from insomnia, but haven’t recognized it as such until now. If I can get on a normal sleep schedule, I think the lethargy will go away.
Editor's Note:
*This refers to a complete count of red and white blood cells. A viral cell count doesn't occur until week 12 of the treatment.
Tuesday, July 12, 2005
INTERFERON FUNNY GUY: PART 4
WEEK 4
It’s Monday again and I can’t believe how full of dread I am in anticipating today’s shot. I guess last week with the two-day hangover was a reminder that things change. Plus, after blowing the second shot, I got too sure that this was going to be no problem. There’s always something to learn. The script can change with any new twist of circumstance.
It’s been 4 hours now since Angela administered the shot. I’ve become squeamish about poking myself with needles -- that’s a new one. This time I had a dose of Ibuprofen before the Interferon. Then I waited a good 45 minutes before doing anything further. I’ve been out to the store, ate a small supper, and now I feel relaxed enough to write in the journal. I have yet to feel those hideous chills or the aching in my body. I did nap for a half an hour right after the shot. All in all, I feel all right. I’m going to take another Ibuprofen in a while and hope for an evening free of side effects. I do feel sleepy and heavy- eyed. However, this is not the irritation that I was feeling last week. It just goes to show you how important it is to follow your doctor’s orders.
The first thing Dr. Sethian said to me when I told him about the side effects was, did I take the pain medication before the shot? I’m just trying to create a formula that makes the whole process easy to bear as possible. So far, today has been good.
Tuesday, tired-day. Okay, a pattern is starting to emerge. I am getting what the fatigue thing is about. It is not debilitating, just nagging and ever present on the day after the shot. I am pulling myself through the day’s chores though because tomorrow I leave for Finland to play a festival. This is my first time out on the medication. I have been playing all year without alcohol which was a little weird at first – that beer in hand was always just part of the deal. Anyway, I like it this way. But we’ll see how I do on a weird sleep schedule, long flights, and late nights. I only have to pack the Ribavarin because I don’t have another shot until Monday, and I will be home then. By the way, I know how lucky I am to have a job and a lifestyle that is pretty well suited to this treatment. Most people do not have the luxury of taking naps when they are tired and just letting the drugs do their thing. More about that when I get back.
It’s Monday again and I can’t believe how full of dread I am in anticipating today’s shot. I guess last week with the two-day hangover was a reminder that things change. Plus, after blowing the second shot, I got too sure that this was going to be no problem. There’s always something to learn. The script can change with any new twist of circumstance.
It’s been 4 hours now since Angela administered the shot. I’ve become squeamish about poking myself with needles -- that’s a new one. This time I had a dose of Ibuprofen before the Interferon. Then I waited a good 45 minutes before doing anything further. I’ve been out to the store, ate a small supper, and now I feel relaxed enough to write in the journal. I have yet to feel those hideous chills or the aching in my body. I did nap for a half an hour right after the shot. All in all, I feel all right. I’m going to take another Ibuprofen in a while and hope for an evening free of side effects. I do feel sleepy and heavy- eyed. However, this is not the irritation that I was feeling last week. It just goes to show you how important it is to follow your doctor’s orders.
The first thing Dr. Sethian said to me when I told him about the side effects was, did I take the pain medication before the shot? I’m just trying to create a formula that makes the whole process easy to bear as possible. So far, today has been good.
Tuesday, tired-day. Okay, a pattern is starting to emerge. I am getting what the fatigue thing is about. It is not debilitating, just nagging and ever present on the day after the shot. I am pulling myself through the day’s chores though because tomorrow I leave for Finland to play a festival. This is my first time out on the medication. I have been playing all year without alcohol which was a little weird at first – that beer in hand was always just part of the deal. Anyway, I like it this way. But we’ll see how I do on a weird sleep schedule, long flights, and late nights. I only have to pack the Ribavarin because I don’t have another shot until Monday, and I will be home then. By the way, I know how lucky I am to have a job and a lifestyle that is pretty well suited to this treatment. Most people do not have the luxury of taking naps when they are tired and just letting the drugs do their thing. More about that when I get back.
Thursday, July 07, 2005
INTERFERON FUNNY GUY: PART 3
WEEK 3
“I said hey, hey babe, it’s the 4th of July,” Dave Alvin
Monday, July 4, 2005. I might have guessed. I made an error or two in the Interferon injection the week before. First, I forgot to mix the solution, which may have seriously diminished the effectiveness of the dose. Second, I didn’t bring it to room temperature after it had been refrigerated for the past week. This time I had Angela execute the entire process. Angela is the sort of person who doesn’t go anywhere she hasn’t been before without a MapQuest. I never have to worry about leaving anything around, because it will be scooped up and disposed of within seconds. If ever I am unable to find something, I immediately switch to “Angela mode”, and search the places where she deems a thing to be “out of sight.” Angela reads and follows written instructions better than anyone you will ever meet. This time the shot was administered correctly.
Earlier I had racked the 20 miles on the bike that has become my daily routine. At the completion of the medication, I ate a pastrami on rye, and then was given a strawberries and cream frappucino from Starbucks (my fast-food of choice). Two hours later (now) I’m feeling drowsy enough to lie down for a siesta and wait for Sonoran style hot dogs and fireworks. Geez, this is pretty tough.
It got tougher, a lot tougher. At about 4 hours past the time Ang gave me the injection, my body started to feel chilled. Inside the house it was warm, but the breezes caused by the ceiling fans were annoying. Along with the chills, came a dull sort of aching in my entire body, right on down to my fingertips. On top of these distractions was a general feeling of listlessness. My English friends might say, “It takes the piss out of you”. Now I was finding things to be crabby about. I was taking care to not react. Well now, we had forgotten one thing we were advised to do. That is to take a hit of Tylenol or Ibuprofen just before the shot. I now took the Ibuprofen. Things began to mellow out. The chills subsided, the aches disappeared, and the listlessness just turned into being relaxed. At 6 hours past the injection, although I feel tiredness, (not unusual if you ride a bicycle 20 miles a day), I believe the nastiest bit of the side effects are over. This might be just exactly what Dr. Bartley and Marc Johnson were describing as the common side effects of the treatment. So for what it’s worth, I think I’m a pretty normal subject who experiences the usual abnormal feelings of this drug, without entering the area where things are intolerable. If this is as bad as it gets, I’m going to be all right. Now, a little strawberry shortcake and a fire works display. Happy Birthday America.
“THEY CALL IT STORMY MONDAY, BUT TUESDAY IS OH SO BAD”; BB KING
Just when you think you are past the rough water, you get the dose of reality that you been waiting for. They said it was going to be two days of discomfort, and they didn’t lie. I went to see my regular doctor, Dr. Sethian at 9:30 am. He was elated about the reduction of the size of my liver. Really? “Yeah, let me show a drawing I made when you came here in January. It was three times the size of now.” I studied the sketch. Hmmm. When I got home we called Dr. Bartley’s office to see when he wanted to check the blood again. We were told to come over this day to have blood drawn. As the afternoon approached, I became aware of chill in my entire body. It was warm in the house, but I was feeling chilled. And I was pissed at just about everything. I felt weak and tired. I had skipped biking for doctor appointments with the intention of getting a swim in before the day was through. I just didn’t feel like it. I didn’t have it. It wasn’t about being lazy, it was an energy thing. I was worthless. I decided to go with the flow and rest. I knew this was Day 2 Blues. It was just as bad as Monday in the sense that feeling shitty is a shitty feeling in any form. Now I know; this is the typical side effect reaction that I had been pre-warned about. You get two days of wretch, and the rest is cool. I did the bike today. I’m feeling stronger, and a little bigger, ever so slightly. I’m on the cusp of breaking into a weight in the 160’s. I’m after 175lbs.
So, Dr. Bartley gets a blood sample, and, in a few days I find out if anything is happening. But first duty calls -- I leave for Finland next Wednesday.
“IT’S A BRAND NEW DAY-E-A,” Parliament/Funkadelic
Yesterday, Wednesday, our houseguest Mat arrived. Mat is a Michigan State University PHD candidate doing his doctoral thesis on the MC5/White Panthers socio-political influences, and the potential of pop culture to reshape society and its political nature. We spent a few hours yesterday afternoon discussing the issues and my opinions regarding them. We’ve enjoyed the whole thing immensely. I got him laughing on most of the responses, but there you have it. It’s my nature. I like to put a spin on anything serious, just to keep from becoming a fist full of slogans. Without playing into this report as an airing out of my regrets concerning MC5’s ridiculous rhetorical assault stage tactics, let me be clear that the hippies (God bless ‘em), euphorically stunned with their freedom, like sheep at the slaughterhouse gate, gamely took their places in line before the axe man, defiant and beautiful to the end, confounded by the sound of their longhair draped heads hitting the kill floor. Never again will I allow myself to be used as the puppet-boy crier for anyone’s “righteous” causes. Even now a curious battle rages on over who owns the rights to the “righteousness.” Leapin’ lysergic sugar cubes, Batman, who put the fuck in the Motherfucker?
Mat and Angela and I all had a great time. We enjoyed turning a mild mannered, inspired Wisconsin lad onto the serenity of Southern California and sharing several grand meals together. I always like helping out these academic guys with their research writing. Maybe someone who wasn’t there can analyze it a whole lot better than those that crawled out from the thick of it. No one can quite figure it out. So it creeps on as a burning question for eternity. What happened? If nothing else, a lot of people got graduate degrees trying to contain the mystery in theoretic writing. That’s cool. I don’t give a damn about legacies. It’s not for me to say! I’m a guy in a band. And if nothing else, we sure had a fun time dressing up in awesome clothes and crashing people’s heads with big sound. If you’re going to talk about the era as a phenomenal episode, then it’s about a million times more things than just the MC5.
Mat left this morning, bound for East Lansing and the pretty green mid- Michigan countryside. I can feel the breezes and the warmth of the summer sun, expect rain, and dream of magical far away places amid the smells of alfalfa and cornfields. It almost brings a tear to my eye thinking of it; thinking of it as “home”. Look at what God has given us. That’s what I’m talking about.
“I said hey, hey babe, it’s the 4th of July,” Dave Alvin
Monday, July 4, 2005. I might have guessed. I made an error or two in the Interferon injection the week before. First, I forgot to mix the solution, which may have seriously diminished the effectiveness of the dose. Second, I didn’t bring it to room temperature after it had been refrigerated for the past week. This time I had Angela execute the entire process. Angela is the sort of person who doesn’t go anywhere she hasn’t been before without a MapQuest. I never have to worry about leaving anything around, because it will be scooped up and disposed of within seconds. If ever I am unable to find something, I immediately switch to “Angela mode”, and search the places where she deems a thing to be “out of sight.” Angela reads and follows written instructions better than anyone you will ever meet. This time the shot was administered correctly.
Earlier I had racked the 20 miles on the bike that has become my daily routine. At the completion of the medication, I ate a pastrami on rye, and then was given a strawberries and cream frappucino from Starbucks (my fast-food of choice). Two hours later (now) I’m feeling drowsy enough to lie down for a siesta and wait for Sonoran style hot dogs and fireworks. Geez, this is pretty tough.
It got tougher, a lot tougher. At about 4 hours past the time Ang gave me the injection, my body started to feel chilled. Inside the house it was warm, but the breezes caused by the ceiling fans were annoying. Along with the chills, came a dull sort of aching in my entire body, right on down to my fingertips. On top of these distractions was a general feeling of listlessness. My English friends might say, “It takes the piss out of you”. Now I was finding things to be crabby about. I was taking care to not react. Well now, we had forgotten one thing we were advised to do. That is to take a hit of Tylenol or Ibuprofen just before the shot. I now took the Ibuprofen. Things began to mellow out. The chills subsided, the aches disappeared, and the listlessness just turned into being relaxed. At 6 hours past the injection, although I feel tiredness, (not unusual if you ride a bicycle 20 miles a day), I believe the nastiest bit of the side effects are over. This might be just exactly what Dr. Bartley and Marc Johnson were describing as the common side effects of the treatment. So for what it’s worth, I think I’m a pretty normal subject who experiences the usual abnormal feelings of this drug, without entering the area where things are intolerable. If this is as bad as it gets, I’m going to be all right. Now, a little strawberry shortcake and a fire works display. Happy Birthday America.
“THEY CALL IT STORMY MONDAY, BUT TUESDAY IS OH SO BAD”; BB KING
Just when you think you are past the rough water, you get the dose of reality that you been waiting for. They said it was going to be two days of discomfort, and they didn’t lie. I went to see my regular doctor, Dr. Sethian at 9:30 am. He was elated about the reduction of the size of my liver. Really? “Yeah, let me show a drawing I made when you came here in January. It was three times the size of now.” I studied the sketch. Hmmm. When I got home we called Dr. Bartley’s office to see when he wanted to check the blood again. We were told to come over this day to have blood drawn. As the afternoon approached, I became aware of chill in my entire body. It was warm in the house, but I was feeling chilled. And I was pissed at just about everything. I felt weak and tired. I had skipped biking for doctor appointments with the intention of getting a swim in before the day was through. I just didn’t feel like it. I didn’t have it. It wasn’t about being lazy, it was an energy thing. I was worthless. I decided to go with the flow and rest. I knew this was Day 2 Blues. It was just as bad as Monday in the sense that feeling shitty is a shitty feeling in any form. Now I know; this is the typical side effect reaction that I had been pre-warned about. You get two days of wretch, and the rest is cool. I did the bike today. I’m feeling stronger, and a little bigger, ever so slightly. I’m on the cusp of breaking into a weight in the 160’s. I’m after 175lbs.
So, Dr. Bartley gets a blood sample, and, in a few days I find out if anything is happening. But first duty calls -- I leave for Finland next Wednesday.
“IT’S A BRAND NEW DAY-E-A,” Parliament/Funkadelic
Yesterday, Wednesday, our houseguest Mat arrived. Mat is a Michigan State University PHD candidate doing his doctoral thesis on the MC5/White Panthers socio-political influences, and the potential of pop culture to reshape society and its political nature. We spent a few hours yesterday afternoon discussing the issues and my opinions regarding them. We’ve enjoyed the whole thing immensely. I got him laughing on most of the responses, but there you have it. It’s my nature. I like to put a spin on anything serious, just to keep from becoming a fist full of slogans. Without playing into this report as an airing out of my regrets concerning MC5’s ridiculous rhetorical assault stage tactics, let me be clear that the hippies (God bless ‘em), euphorically stunned with their freedom, like sheep at the slaughterhouse gate, gamely took their places in line before the axe man, defiant and beautiful to the end, confounded by the sound of their longhair draped heads hitting the kill floor. Never again will I allow myself to be used as the puppet-boy crier for anyone’s “righteous” causes. Even now a curious battle rages on over who owns the rights to the “righteousness.” Leapin’ lysergic sugar cubes, Batman, who put the fuck in the Motherfucker?
Mat and Angela and I all had a great time. We enjoyed turning a mild mannered, inspired Wisconsin lad onto the serenity of Southern California and sharing several grand meals together. I always like helping out these academic guys with their research writing. Maybe someone who wasn’t there can analyze it a whole lot better than those that crawled out from the thick of it. No one can quite figure it out. So it creeps on as a burning question for eternity. What happened? If nothing else, a lot of people got graduate degrees trying to contain the mystery in theoretic writing. That’s cool. I don’t give a damn about legacies. It’s not for me to say! I’m a guy in a band. And if nothing else, we sure had a fun time dressing up in awesome clothes and crashing people’s heads with big sound. If you’re going to talk about the era as a phenomenal episode, then it’s about a million times more things than just the MC5.
Mat left this morning, bound for East Lansing and the pretty green mid- Michigan countryside. I can feel the breezes and the warmth of the summer sun, expect rain, and dream of magical far away places amid the smells of alfalfa and cornfields. It almost brings a tear to my eye thinking of it; thinking of it as “home”. Look at what God has given us. That’s what I’m talking about.
Monday, June 27, 2005
INTERFERON FUNNY GUY: PART 2
Monday is here again. We’re going to see if having a shot of Interferon produces another meltdown. I’m sitting in the bathroom by myself trying to do everything correctly. The only hitch was when I pulled back on the plunger that regulates the dose amount, a geyser stream of the stuff shot into the air and caused me to curse. “Fuck! I blew it all over the floor!” Angela, quick to sense the overreaction, comes in to the room to see what happened. There’s still a lot of liquid in the syringe. Everything is all right. I push the little sharpie into my fat roll at midriff level, and push the plunger the rest of the way. “That didn’t seem like anything happened.” Once again, Angela assures me it was a go. But she also can’t believe how easy it goes in. I took a nap a bit later in the afternoon. This time I said the Interferon made me do it. When I awoke, I astonished Angela with a food request. “ I want a Double-Double and a strawberry shake from “In ‘N Out Burger?” Sounds like loss of appetite to me. I wolfed it; it was great.
I have to mention that off and on for the past year I have been trying to work out. I bought a relatively expensive bicycle after the end of last year’s tour, like I spent a couple thousand on it. It’s a Klein with a beautiful blue/black paint job and some great parts. There’s some carbon fiber and the rest aluminum. It’s sweet. We live right next to The Rose Bowl. The Rose Bowl is 3.3 miles around including the golf course. Usually, at the point where I’m starting to feel slightly in shape, we have to go on tour, or some medical thing happens that interrupts the whole process. But now it looks like with only Finland on the gig schedule, I can get with a program for a while. I begin this, the second week of treatment, by doing 4 laps of The Rose Bowl. So that’s about 13 miles, which isn’t much to real cyclists. They do 40+ mile runs routinely. But this old-timer needs to be realistic.
And I bought a month of pool use membership at The Rose Bowl Aquatic Center. This is a gorgeous facility with two pools, three three-level diving platforms, and a couple of one-meter diving boards at the side. On the first day I did 20 laps in a 25 yard lane. It’s a start. By Thursday, I was up to 20 miles on the bike, and 30 laps in the pool. It’s a start. Sometime in the middle of week two, I acquired a nickname. Given to me by my wife, Angela, I became known as “Interferon Funny Guy.”
As I explained at the beginning of this report, depression is a heavy disabling side effect associated with Interferon use. Depression as a chronic mental disorder is classified as a psychosis. Depression as I know it is a state of mind brought about by an event or disappointment that is so severe as to leave me unable to participate in a regular life without constant reminder that all hope is lost. It is very hard to put into words the effect of depression. It’s probably the root cause of addiction. It takes all the fight out of you. It isolates the sufferer from everything and everyone. The world is small and lonely. Nothing has any value. Living is a charade. A psychiatrist on TV once said: ”The easiest thing to tell a depressed person and the most futile thing to say to them is; cheer up.” It’s the one thing they CAN’T do.
So who is Interferon Funny Guy? As week two motored on, I kept looking for a negative trend. I went to The Rose Bowl everyday. I went to the pool everyday. I ate wonderful food, mainly consisting of yogurt, granola, always bananas, salads prepared with all natural greens, and nuts, and cheeses and chicken dishes with exotic flavors, wrapped in lettuce leaves. I’d keep a water bottle going as a matter of course and a glass of fruit juice or a ginger brew occasionally. I never denied myself anything outright, except fast food and processed food, just because we avoid that fare in general. I don’t trust it, or the industry that produces it. I don’t think a once in a while dining of certain fast food items is a death sentence, but I do think using it, as a means to nourish you regularly is suicidal and ignorant. You can eat a few chips and ranch dip, or chips and guacamole is cool, but it’s only a treat. You can have a treat. It’s good for your mood.
So then, when I couldn’t find the pothole in the “Treatment”, I started joking, and being my playful, natural self. “What’s the matter? I don’t drink, I’m on some kind of hell drug that kills any bad guy it can find in my body and maybe some good guys too. I am not obsessed about eBay, or money, or lack of it. I’ve never been so ok in my whole life as I am RIGHT NOW.” Have I been approved? Who approved? When did all this get all right? Well here it is. It got all right when I looked into the pit, saw who was running the show, and said “alright motherfucker, you got to answer to me now. You’re fired! Get the fuck out!” Right then and there I got approved, and went straight to work. This really sounds too simple. All I know is that something is telling me "you got it right."
Tomorrow is Monday again. Yea! What’s this? I’m waiting on Mondays? Yes, tomorrow is Monday. This is going to last for a whole year as far as I’m concerned. If the doctor tells me it’s ok to stop, then that’s when I stop. It doesn’t matter really because I like the fact that I’m standing up for the fight. In any event, we’re not counting the chickens just yet. Anything can happen at any time. So the reason for writing a journal is have a record of the events as they happen. I’ll keep up the entries and try to avoid being monotonous.
Angela calls me Interferon Funny Guy because we all expected this maudlin, self -absorbed, cranky complainer to move in, and what we got was Michael Silver Tongue Flash, or Michael D Flex. That’s my pimp name, but I’m ok with Interferon Funny Guy.
I have to mention that off and on for the past year I have been trying to work out. I bought a relatively expensive bicycle after the end of last year’s tour, like I spent a couple thousand on it. It’s a Klein with a beautiful blue/black paint job and some great parts. There’s some carbon fiber and the rest aluminum. It’s sweet. We live right next to The Rose Bowl. The Rose Bowl is 3.3 miles around including the golf course. Usually, at the point where I’m starting to feel slightly in shape, we have to go on tour, or some medical thing happens that interrupts the whole process. But now it looks like with only Finland on the gig schedule, I can get with a program for a while. I begin this, the second week of treatment, by doing 4 laps of The Rose Bowl. So that’s about 13 miles, which isn’t much to real cyclists. They do 40+ mile runs routinely. But this old-timer needs to be realistic.
And I bought a month of pool use membership at The Rose Bowl Aquatic Center. This is a gorgeous facility with two pools, three three-level diving platforms, and a couple of one-meter diving boards at the side. On the first day I did 20 laps in a 25 yard lane. It’s a start. By Thursday, I was up to 20 miles on the bike, and 30 laps in the pool. It’s a start. Sometime in the middle of week two, I acquired a nickname. Given to me by my wife, Angela, I became known as “Interferon Funny Guy.”
As I explained at the beginning of this report, depression is a heavy disabling side effect associated with Interferon use. Depression as a chronic mental disorder is classified as a psychosis. Depression as I know it is a state of mind brought about by an event or disappointment that is so severe as to leave me unable to participate in a regular life without constant reminder that all hope is lost. It is very hard to put into words the effect of depression. It’s probably the root cause of addiction. It takes all the fight out of you. It isolates the sufferer from everything and everyone. The world is small and lonely. Nothing has any value. Living is a charade. A psychiatrist on TV once said: ”The easiest thing to tell a depressed person and the most futile thing to say to them is; cheer up.” It’s the one thing they CAN’T do.
So who is Interferon Funny Guy? As week two motored on, I kept looking for a negative trend. I went to The Rose Bowl everyday. I went to the pool everyday. I ate wonderful food, mainly consisting of yogurt, granola, always bananas, salads prepared with all natural greens, and nuts, and cheeses and chicken dishes with exotic flavors, wrapped in lettuce leaves. I’d keep a water bottle going as a matter of course and a glass of fruit juice or a ginger brew occasionally. I never denied myself anything outright, except fast food and processed food, just because we avoid that fare in general. I don’t trust it, or the industry that produces it. I don’t think a once in a while dining of certain fast food items is a death sentence, but I do think using it, as a means to nourish you regularly is suicidal and ignorant. You can eat a few chips and ranch dip, or chips and guacamole is cool, but it’s only a treat. You can have a treat. It’s good for your mood.
So then, when I couldn’t find the pothole in the “Treatment”, I started joking, and being my playful, natural self. “What’s the matter? I don’t drink, I’m on some kind of hell drug that kills any bad guy it can find in my body and maybe some good guys too. I am not obsessed about eBay, or money, or lack of it. I’ve never been so ok in my whole life as I am RIGHT NOW.” Have I been approved? Who approved? When did all this get all right? Well here it is. It got all right when I looked into the pit, saw who was running the show, and said “alright motherfucker, you got to answer to me now. You’re fired! Get the fuck out!” Right then and there I got approved, and went straight to work. This really sounds too simple. All I know is that something is telling me "you got it right."
Tomorrow is Monday again. Yea! What’s this? I’m waiting on Mondays? Yes, tomorrow is Monday. This is going to last for a whole year as far as I’m concerned. If the doctor tells me it’s ok to stop, then that’s when I stop. It doesn’t matter really because I like the fact that I’m standing up for the fight. In any event, we’re not counting the chickens just yet. Anything can happen at any time. So the reason for writing a journal is have a record of the events as they happen. I’ll keep up the entries and try to avoid being monotonous.
Angela calls me Interferon Funny Guy because we all expected this maudlin, self -absorbed, cranky complainer to move in, and what we got was Michael Silver Tongue Flash, or Michael D Flex. That’s my pimp name, but I’m ok with Interferon Funny Guy.
Monday, June 20, 2005
INTERFERON FUNNY GUY: PART 1
Just about four decades ago, when I was invincible and full of curiosity, risking all in the name of experience, I managed to acquire an unwanted rider called Hepatitis C. I was an I.V. drug user and daily drinker for most of that time. The drug using being for the most part a series of binges that would last anywhere from a few months to several years at some point per decade. I’m talking about hard-core intravenous drug use. The actual embarkation of the Hepatitis C freeloader is not actually known. He may have sneaked on board at any time in the years between 1963 and 1986. He may have jumped the freight in the early 1970’s, or maybe in the middle 1980’s. Regardless of the time of his intrusion, he remains tucked in some recess of my body, slowly going about his business of survival. Oh yeah, my name is Michael Davis. I’m a bass player in a rock band. I’ve been hard-core into this lifestyle of rock and roll for 40 years. It’s not unusual for someone in my profession to be a drug user. In fact, it’s almost cliché that musicians tend to get loaded, particularly if they are extraordinarily gifted, and/or black. Alcoholism is also characteristic of “my people.” Hepatitis C, being a blood borne infection is not a concern of an alcoholic/drunkard, but, truth is, substance abuse seems to like the company of many substances. We, who have risked the lifestyle, know the endlessness of our weakness for psychophysical displacement.
When I learned that I tested positive for the Hepatitis C virus, my reaction was somewhat blasé. “I don’t feel anything unusual. So…what of it?” “It could lead to complications,” said my doctor. “Your liver is susceptible to permanent damage, cirrhosis, and ultimately, your death. Are you eager to die? Is there nothing in life that you value? Is there anyone else who may care if you live or die?” “Holy cow, I’m NOT alone. I have a wife and kids and my life is the best it has ever been. This matters! What do you want me to do?”
My doctor told me he was sending me to a lab for ultrasound pictures of my liver, and referring me to a specialist. And so it began: the challenge to rid my being of the alien invader that had taken up residence somewhere in my gastro enterological machinery. The little devil walked right in on a silver spoon, and surged through the tiny hole in a disposable syringe that I willingly, no, eagerly accepted from a previous shooter. It’s kind of a vampire tale; you have to invite him in or he’s just waiting around for his chance. I said yes to infection! Can you believe it? Damn! It’s that easy. It’s not that easy to lose. There’s a treatment. Let’s say a developing research for treatment. Otherwise, the Hepatitis C virus is not well known. It’s only since 1989 that the specific virus called Hepatitis C was isolated. Until then, it did not even exist to medical science. Yet, it existed in me! Ah, well it’s a lucky thing that this devil moves so slowly I couldn’t even tell anything was there. A lucky thing it is that I have a doctor who looked at my numbers from blood work, and wanted to find out why my liver was showing abnormal amounts of antibodies.
My specialist, Dr. Isaac Bartley, a very well known Gastroenterologist in Los Angeles, explained several facts surrounding “The Treatment.” Among them was the fact that the recovery rate is around 70%, a marked improvement from just a few years previous when 50% was the average, and chance of remission was common after stopping the treatment. The new deal was/is a two-fold attack of injections of Interferon Alpha, and oral ingestion of Ribavirin. I haven’t researched the how-it-works aspect of any of these chemicals. So, I have no idea what is going on in the battle itself. This isn’t why I’m writing this journal of my experience. I only wish to report what Interferon has done for me and how it went down in my case.
The second fact is side effects. There is a list of scary, bewildering, torturous, unrelenting side effects. Most devastating on the list is a hideous multi-headed monster called depression. The fact that depression is the sole property of it’s creator means that only the patient can know what it is for him or her, where it originates, and how to get a grip on it, if at all. It is infinite in nature, and it is self perpetuating. It is real and it is imagined all at once. And it is a big problem. Those who know the depths of depression can be terrified by the very thought of it. I am told that it is the main reason many people reject treatment- the fear of depression. I have known depression. I have felt the bottom of the hole from which there seems to be no escape. My depression lasted for several years, but I knew the cause of it, which helped. And I believed that time would eventually heal the wound and one day I would forget my sadness. It came to pass. Those days are well behind me now, and the fact that I was so completely devastated, I regard as quite incredible. Yet it was as overwhelming as anything ever at the time.
Other side effects can be flu-like symptoms, fatigue, drowsiness, joint ache, nausea, apathy, etc., or let’s say, anything could likely be a side effect of Interferon Alpha. The treatment can last from 6 months to 1 year. It may be that a more potent form of Interferon is necessary to effectively deal with the virus. Being that there is more than one strain of the virus, trial and error is how we must take on the enemy. With all of these factors in mind, I decide that I can, and will, undergo the treatment process, for better or for worse, and ultimately me and my doctors will prevail, because we are stronger, smarter, and determined to defeat the bug.
And, by the way, no alcohol at any time, as alcohol will undermine the effectiveness of the treatment, and continue to damage the liver. I haven’t drunk anything alcoholic for 6 months. I have entirely left the craving behind. And along with that I have discovered clarity in my mind, body and soul. I feel like a young person, but with the limitations that come with age and atrophy. My wit, will, and want is alive and well. I don’t fear temptation to drink. It is meaningless and ludicrous to persist with the old behavior. If I’m happy, why should I fuck with it?
THE JOURNAL; DAY 1
It’s June 20, 2005 - the day of The Summer Solstice. It’s 12:00 noon. A young man whose name is Marc, comes to our house on Claremont Street in Pasadena, CA. Marc is the Director of Nursing, a Registered Nurse, from US Bioservices, www.usbioservices.com, and a heck of a nice guy. Marc has come to deliver my medication, an information pack, and instruct me on the procedures of administering my treatment. As we chat for perhaps an hour, I begin to feel anticipation of the point of no return. Once I commit I’m in. It’s a matter of honor and self-respect to keep my pledge and goal sacred. How bad can it be? I’ve done things to my body that could have brought down whole herds of cattle. I’ve ingested substances that could create tidal pools of dead crustaceans. Press on, it can’t be that bad. Whoa, the shot! Hey, it only goes in the fat. No muscle, no vein, pinch of fat, and that’s that? It’s done. Cool. Didn’t feel a thing…yet.
After Marc leaves, I begin to have mild waves of chill. I sit in the sun until it becomes uncomfortable and then retreat to the house where a fan on the ceiling blows away any warmth I may have absorbed. My body feels achy and stressed. At about the forth hour post shot, I’m sitting once again in the sun on the patio. In what can’t really qualify as a thought, I feel emotionally overwhelmed. I’m looking into a darkness of mind that recognizes itself as a lousy, no good son of a bitch that doesn’t deserve the attention of a hoard of cockroaches. I see a fool and a fake. I rise from the seat, and enter the office where my wife, Angela is busy at her desk, sorting out the slew of emails and phone contacts that make up the tasks of running a business. I seat myself at my desk and click some email boxes open to see if anyone in the world knows me. No. Angela is in her diligent work mode. She is unstoppable, accepting all challenges, and charming the most resistant bushwhackers, none of whom can deny or ignore the radiance of the person they’ve been lucky enough to make contact with. She is asking me a question I think. Oh yes, uh, I’m ok, sort of, and…She looks a bit closer, and tells me; ”your eyes are all watery and…your not feeling well, are you?” Just then a big tear falls down the right side of my face, and I say; “I don’t know”. Another tear falls down the left side of my face. It’s on. I can’t hide. I’m in full tear flow, and Angela is up out of her chair, and caressing my head. I’m sobbing as quietly as I possibly can, not knowing at all what it’s about. The Interferon is jerking me into a pit of self-loathing. For the next two hours I can’t stop crying. I’m beginning to enjoy a headache as a diversion, when a brilliant thought crosses my mind. I’m going to take a couple of Tylenol and try to relax. Within the next hour, things taper off. The headache gone, the trauma of realizing I’m a pathetic loser has passed, the aches, the chills, the hopelessness that is my life floated harmlessly to the heavenly blue sky. And there she is. The one. The woman who gives me the sword to conquer my demon. Amen.
I have come to realize that talking is basically the cure to most mental illnesses. Without speech and communication, we fall like scattered debris into an abyss of fantasy and fear. Even the most freely associated streams of words can lead one to the door that opens onto a place where we can find the heart of the being our mother cradled in her arms and adored. We remember in our lost memories that the eyes that first beheld us in the first minute of the first hour of the first day of our little lives saw us as we REALLY are, and not the mess we became. Those eyes that said it all: APPROVAL. That is what we seek, and strive to be. In all our wandering can we feel the gaze of pure love ever again? Can we be who we REALLY are? Well, why not? How to undo all the wrong that’s been done? Talk about it. Talk about it. After all, a mess is just something that needs attention and cleaning up. If you can put the troublesome things away in places where they don’t keep you stumbling over them, you can use your time and space more efficiently. You can grow, just like starting all over.
We sat there on the bed, Angela and me, and I talked awhile about the disappointments I had handed to people over the years. Particularly to my parents, both now deceased. Of all my shame and regrets, the bombs I laid on my parents are the deepest and most painful. But even that darkness can be brightened when you look at it in focus. So we talked and focused, and talked and hugged. After a while, I knew, I just knew, I could beat this thing, what ever it was. It didn’t frighten me any more. Nor did it hold me down like a pinned wrestler. I was up, off the mat, and ready for phase 2, the Ribavirin doses.
I know nothing about Ribavirin, in part, because virtually nothing was said about it by Dr. Bartley or by Marc Johnson of US Bioservices. Two 250 milligram caps, twice a day is the dosage. Since there was virtually nothing said, I made the assumption that it was much less a hardship than the Interferon. Sensing a modest amount of victory, I ate the caps with no hesitation or foreboding. To be honest, I felt nothing from the Ribavirin. The next morning I took the next 500 milligrams of Ribavirin, and steadied myself for the long haul. I wasn’t thinking the coast is clear just yet. Let’s give it every opportunity to fuck with us. Then we’ll see if it actually is doing what it’s supposed to. I was looking forward to next Monday, and the big second shot of whack-it. My confidence was growing.
The rest of the first week was normal. I had to snap to attention a couple of times when I couldn’t remember if I had taken my dose or not. After a pill count one night, I figured everything was cool, and I hadn’t missed anything. One of those first days I fell asleep for an hour and a half in the afternoon and forgot to take Gabriel to his clarinet lesson. I said the Ribavirin made me do it.
When I learned that I tested positive for the Hepatitis C virus, my reaction was somewhat blasé. “I don’t feel anything unusual. So…what of it?” “It could lead to complications,” said my doctor. “Your liver is susceptible to permanent damage, cirrhosis, and ultimately, your death. Are you eager to die? Is there nothing in life that you value? Is there anyone else who may care if you live or die?” “Holy cow, I’m NOT alone. I have a wife and kids and my life is the best it has ever been. This matters! What do you want me to do?”
My doctor told me he was sending me to a lab for ultrasound pictures of my liver, and referring me to a specialist. And so it began: the challenge to rid my being of the alien invader that had taken up residence somewhere in my gastro enterological machinery. The little devil walked right in on a silver spoon, and surged through the tiny hole in a disposable syringe that I willingly, no, eagerly accepted from a previous shooter. It’s kind of a vampire tale; you have to invite him in or he’s just waiting around for his chance. I said yes to infection! Can you believe it? Damn! It’s that easy. It’s not that easy to lose. There’s a treatment. Let’s say a developing research for treatment. Otherwise, the Hepatitis C virus is not well known. It’s only since 1989 that the specific virus called Hepatitis C was isolated. Until then, it did not even exist to medical science. Yet, it existed in me! Ah, well it’s a lucky thing that this devil moves so slowly I couldn’t even tell anything was there. A lucky thing it is that I have a doctor who looked at my numbers from blood work, and wanted to find out why my liver was showing abnormal amounts of antibodies.
My specialist, Dr. Isaac Bartley, a very well known Gastroenterologist in Los Angeles, explained several facts surrounding “The Treatment.” Among them was the fact that the recovery rate is around 70%, a marked improvement from just a few years previous when 50% was the average, and chance of remission was common after stopping the treatment. The new deal was/is a two-fold attack of injections of Interferon Alpha, and oral ingestion of Ribavirin. I haven’t researched the how-it-works aspect of any of these chemicals. So, I have no idea what is going on in the battle itself. This isn’t why I’m writing this journal of my experience. I only wish to report what Interferon has done for me and how it went down in my case.
The second fact is side effects. There is a list of scary, bewildering, torturous, unrelenting side effects. Most devastating on the list is a hideous multi-headed monster called depression. The fact that depression is the sole property of it’s creator means that only the patient can know what it is for him or her, where it originates, and how to get a grip on it, if at all. It is infinite in nature, and it is self perpetuating. It is real and it is imagined all at once. And it is a big problem. Those who know the depths of depression can be terrified by the very thought of it. I am told that it is the main reason many people reject treatment- the fear of depression. I have known depression. I have felt the bottom of the hole from which there seems to be no escape. My depression lasted for several years, but I knew the cause of it, which helped. And I believed that time would eventually heal the wound and one day I would forget my sadness. It came to pass. Those days are well behind me now, and the fact that I was so completely devastated, I regard as quite incredible. Yet it was as overwhelming as anything ever at the time.
Other side effects can be flu-like symptoms, fatigue, drowsiness, joint ache, nausea, apathy, etc., or let’s say, anything could likely be a side effect of Interferon Alpha. The treatment can last from 6 months to 1 year. It may be that a more potent form of Interferon is necessary to effectively deal with the virus. Being that there is more than one strain of the virus, trial and error is how we must take on the enemy. With all of these factors in mind, I decide that I can, and will, undergo the treatment process, for better or for worse, and ultimately me and my doctors will prevail, because we are stronger, smarter, and determined to defeat the bug.
And, by the way, no alcohol at any time, as alcohol will undermine the effectiveness of the treatment, and continue to damage the liver. I haven’t drunk anything alcoholic for 6 months. I have entirely left the craving behind. And along with that I have discovered clarity in my mind, body and soul. I feel like a young person, but with the limitations that come with age and atrophy. My wit, will, and want is alive and well. I don’t fear temptation to drink. It is meaningless and ludicrous to persist with the old behavior. If I’m happy, why should I fuck with it?
THE JOURNAL; DAY 1
It’s June 20, 2005 - the day of The Summer Solstice. It’s 12:00 noon. A young man whose name is Marc, comes to our house on Claremont Street in Pasadena, CA. Marc is the Director of Nursing, a Registered Nurse, from US Bioservices, www.usbioservices.com, and a heck of a nice guy. Marc has come to deliver my medication, an information pack, and instruct me on the procedures of administering my treatment. As we chat for perhaps an hour, I begin to feel anticipation of the point of no return. Once I commit I’m in. It’s a matter of honor and self-respect to keep my pledge and goal sacred. How bad can it be? I’ve done things to my body that could have brought down whole herds of cattle. I’ve ingested substances that could create tidal pools of dead crustaceans. Press on, it can’t be that bad. Whoa, the shot! Hey, it only goes in the fat. No muscle, no vein, pinch of fat, and that’s that? It’s done. Cool. Didn’t feel a thing…yet.
After Marc leaves, I begin to have mild waves of chill. I sit in the sun until it becomes uncomfortable and then retreat to the house where a fan on the ceiling blows away any warmth I may have absorbed. My body feels achy and stressed. At about the forth hour post shot, I’m sitting once again in the sun on the patio. In what can’t really qualify as a thought, I feel emotionally overwhelmed. I’m looking into a darkness of mind that recognizes itself as a lousy, no good son of a bitch that doesn’t deserve the attention of a hoard of cockroaches. I see a fool and a fake. I rise from the seat, and enter the office where my wife, Angela is busy at her desk, sorting out the slew of emails and phone contacts that make up the tasks of running a business. I seat myself at my desk and click some email boxes open to see if anyone in the world knows me. No. Angela is in her diligent work mode. She is unstoppable, accepting all challenges, and charming the most resistant bushwhackers, none of whom can deny or ignore the radiance of the person they’ve been lucky enough to make contact with. She is asking me a question I think. Oh yes, uh, I’m ok, sort of, and…She looks a bit closer, and tells me; ”your eyes are all watery and…your not feeling well, are you?” Just then a big tear falls down the right side of my face, and I say; “I don’t know”. Another tear falls down the left side of my face. It’s on. I can’t hide. I’m in full tear flow, and Angela is up out of her chair, and caressing my head. I’m sobbing as quietly as I possibly can, not knowing at all what it’s about. The Interferon is jerking me into a pit of self-loathing. For the next two hours I can’t stop crying. I’m beginning to enjoy a headache as a diversion, when a brilliant thought crosses my mind. I’m going to take a couple of Tylenol and try to relax. Within the next hour, things taper off. The headache gone, the trauma of realizing I’m a pathetic loser has passed, the aches, the chills, the hopelessness that is my life floated harmlessly to the heavenly blue sky. And there she is. The one. The woman who gives me the sword to conquer my demon. Amen.
I have come to realize that talking is basically the cure to most mental illnesses. Without speech and communication, we fall like scattered debris into an abyss of fantasy and fear. Even the most freely associated streams of words can lead one to the door that opens onto a place where we can find the heart of the being our mother cradled in her arms and adored. We remember in our lost memories that the eyes that first beheld us in the first minute of the first hour of the first day of our little lives saw us as we REALLY are, and not the mess we became. Those eyes that said it all: APPROVAL. That is what we seek, and strive to be. In all our wandering can we feel the gaze of pure love ever again? Can we be who we REALLY are? Well, why not? How to undo all the wrong that’s been done? Talk about it. Talk about it. After all, a mess is just something that needs attention and cleaning up. If you can put the troublesome things away in places where they don’t keep you stumbling over them, you can use your time and space more efficiently. You can grow, just like starting all over.
We sat there on the bed, Angela and me, and I talked awhile about the disappointments I had handed to people over the years. Particularly to my parents, both now deceased. Of all my shame and regrets, the bombs I laid on my parents are the deepest and most painful. But even that darkness can be brightened when you look at it in focus. So we talked and focused, and talked and hugged. After a while, I knew, I just knew, I could beat this thing, what ever it was. It didn’t frighten me any more. Nor did it hold me down like a pinned wrestler. I was up, off the mat, and ready for phase 2, the Ribavirin doses.
I know nothing about Ribavirin, in part, because virtually nothing was said about it by Dr. Bartley or by Marc Johnson of US Bioservices. Two 250 milligram caps, twice a day is the dosage. Since there was virtually nothing said, I made the assumption that it was much less a hardship than the Interferon. Sensing a modest amount of victory, I ate the caps with no hesitation or foreboding. To be honest, I felt nothing from the Ribavirin. The next morning I took the next 500 milligrams of Ribavirin, and steadied myself for the long haul. I wasn’t thinking the coast is clear just yet. Let’s give it every opportunity to fuck with us. Then we’ll see if it actually is doing what it’s supposed to. I was looking forward to next Monday, and the big second shot of whack-it. My confidence was growing.
The rest of the first week was normal. I had to snap to attention a couple of times when I couldn’t remember if I had taken my dose or not. After a pill count one night, I figured everything was cool, and I hadn’t missed anything. One of those first days I fell asleep for an hour and a half in the afternoon and forgot to take Gabriel to his clarinet lesson. I said the Ribavirin made me do it.
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