November 2002 rediagnosed with a recurring tumor I am going to bring you through the whole fun thing
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This is where you stick random tidbits of information about yourself.
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Brain Tumor History And Other Rants
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Saturday, February 28, 2004
Bob Dylan Shooting Star From: Oh Mercy
Seen a shooting star tonight
And I thought of you.
You were trying to break into another world
A world I never knew.
I always kind of wondered
If you ever made it through.
Seen a shooting star tonight
And I thought of you.
Seen a shooting star tonight
And I thought of me.
If I was still the same
If I ever became what you wanted me to be
Did I miss the mark or
Over-step the line
That only you could see?
Seen a shooting star tonight
And I thought of me.
Listen to the engine, listen to the bell
As the last fire truck from hell
Goes rolling by, all good people are praying,
It's the last temptation
The last account
The last time you might hear the sermon on the mount,
The last radio is playing.
Seen a shooting star tonight
Slip Away.
Tomorrow will be another day.
Guess it's too late to say the things to you
That you needed to hear me say.
Seen a shooting star tonight
Slip away.
So we can re set the calendar. Who am I kidding throw them out. The good news is, if I keep this up the roads will always be safe. I got woken up Friday morning by a facial seizure. I knew it was coming all the random ticks. The relief after one is knowing that I have never had 2 in one day. And the ticks seem to subside for a while. Almost like it builds up, happens and then it is done for a while. I keep a record of them, that way when I go see my doctor I just hand it to him to update him with the exact gory details. I don?t know, maybe living on the mountain in isolation is getting to me. I am not getting any younger all that crap. But I haven?t been driving, working, getting around. Hey I just gave my last holiday present yesterday. It?s been months since I saw this guy so I was able to give them their gift. I guess being 30 which I guess is supposed to be a productive time, to feel like you are in a freeze frame is frustrating. I have been trying to fight this mind set I have been trying to think more positive and try to focus on figuring out a future, but I guess I have stumbled a bit. I guess I hate set-backs. OK we all do, some of us make our own set-backs. I have just had no control for like 15 months. I mean back in 12/02 when I had a seizure at work, afterwards I was laying on the ground, and all I could think about, the thing that upset me most was that I wouldn?t be able to drive. By having the seizure it screwed everything up. My situation was out of my control again. It had come back to own me. Yeah I know I am only owned by it if I let myself be.
I was supposed to restart my maintenance chemo again tonight, but this past Wednesday when I went to get my blood check up, my platlets were low again. So my doctor put off me restarting the chemo again to see where my levels were going. So I am going back next Wednesday to get checked again to see if I am going back up, or if we have to check again the following week. Let me tell you it takes nothing to get used to only seeing a doctor once a month. I mean don?t get me wrong I have 3 different doctors so I still see someone at least every other week, but when you have to go back on once a week appointments, it is frustrating. I mean it still beats 3 times a week. But that is the crappy part of this stuff, all your life you get a cold you break a bone, you get better and you are done with it. This thing doesn?t let go. In a sense it does own my body.
6:24 PM
Saturday, February 14, 2004
To all you people celebrating Valentines day. Keep your bragging to yourself. Oh and St. Hallmark says thanks for buying into the whole scam.
If you need something gushy at least make it a cool tune:
Alice Cooper
Be With You Awhile
From - The Eyes Of Alice Cooper
I wish I could tell you something you didn't know
I wish I could give you something you didn't owe
I wish I could tell you a joke to make you smile
And I could be with you awhile
Just wanna be that someone you weren't looking for
Some nameless fascination that showed up at your door
And when you're sad and blue my jokes still make you smile
And I could be with you awhile
I just want to take you somewhere you haven't been
Find an old time movie where we don't know the end
Lost in the radio, drive another mile
So I could be with you awhile
Just wanna be that someone you weren't looking for
Some nameless fascination that showed up at your door
And when you're sad and blue my jokes still make you smile
And I could be with you awhile
Tired of serious conversation
Tangled up in situations
I feel so free 'cause you want nothing from me
Just wanna be that someone you weren't looking for
Some hopeless vagabond asleep there on your floor
And when you're old and gray my jokes still make you smile
And I could be with you awhile
Just wanna be that someone you weren't looking for
Some nameless fascination that showed up at your door
And when you're old and gray my jokes still make you smile
And I could be with you awhile
I just want to be with you awhile
I just want to be with you awhile
I just want to be with you...
So here I am 45 days clean with no “events”, I finished my first 6 week chemo maintenance regimen, I get 2 weeks off for good behavior now. I went to the doctor this past Thursday my last MRI was clean, nothing growing up there in my head. It pays to have that hole in my head stay just the way it is, empty.
My doctor said that 5 years is the big mark, if you make it 5 years clean without a re-occurrence you should be good. Well I got one of them years down I guess. I still haven’t gotten that warm confident feeling from this doctor so now I have to try to hunt down another doctor. I probably have to look into another facility. But meanwhile my other doctor is in the same office as this doctor, so if and when I dump him I will still see him sometimes. Is that like running into an ex? Well I don’t know him that long, so if it is, it can’t be one that I have too much history with.
If I make 6 months without an event they let me drive. I don’t miss car payments or insurance at all. I hate not having my freedom (I know you have all read that already). I don’t even concentrate on having 1 and ½ months down, I still have facial ticks which usually precede getting a random event. And the minute one does happen we re set the clock, so when and if I ever get 6 months clear I will worry about it then. For now it is something that is hard to see coming, so I keep it out of my mind, in fact I tuck it in that little hole in my head.
There is not much else to report. I don’t have to go to the doctors as often any more, so that is a relief, especially to the people that had to drive me around.
I was always independent and I would just assume go without before I ask people for help. But if asking people for help is the only way I can accomplish what I have to then so be it. It has been a humbling year. Well if I pull a favor or a ride off people once a month I can just chalk it up to the fact it is an excuse to see each other as friends. Think about how many weeks and months we let go by because we get so self-caught up that we don’t see the people that really matter to us. Phone calls / emails are cool too, but hell waste a Saturday and spend it with someone.
7:26 PM
Sunday, February 01, 2004
2/1/04
Ani Difranco First CD:
the slant
the slant
a building settling around me
my figure female framed crookedly
in the threshold
of the room
door scraping floorboards
with every opening
carving a rough history
of bedroom scenes
the plot hard to follow
the text obscured
in the folds of sheets
slowly gathering the stains
of seasons spent lying there
red and brown
like leaves fallen
the colors of an eternal cycle
fading with the
wash cycle
and the rinse cycle
again an unfamiliar smell
like my name misspelled
or misspoken
a cycle broken
the sound of them strong
stalking talking about their prey
like the way hammer meets nail
pounding, they say
pounding out the rhythms of attraction
like a woman was a drum like a body was a weapon
like there was something more they wanted
than the journey
like it was owed to them
steel toed they walk
and i'm wondering why this fear of men
maybe it's because i'm hungry
and like a baby i'm dependent on them
to feed me
i am a work in progress
dressed in the fabric of a world unfolding
offering me intricate patterns of questions
rhythms that never come clean
and strengths that you still haven't seen
OK no I am not trying to estrogen this page up. Sometimes you gotta appreciate writing. And besides I don’t need to explain it all…. So I have been slacking off and haven’t written in awhile. New stuff? Ok we can say I am one month “event” free. But every time I try to get out “they pull me back in” (had to quote the godfather). So everytime I seem to get cocky about things BANG I get another. But I have increased my med’s again in mid-January so, so far the cocktail of drugs seem to be holding off the storm. I have had a good amount of “ticks” usually they indicate I have something coming up. So if I think one is coming yeah, I am not out of this thing. The non-driving thing is real old in the winter. Cabin fever like I have a rash sometimes it seems.
So the lack of entries I guess comes from mostly lack of information. I had a clear MRI a couple weeks ago, so that is positive. It took like 2 weeks to get the news about that. I have to figure out how to dump this doctor, and get a new one. I have an appointment with him one more time on the 12th. It might just be my last one. All my last appointments it was like I couldn’t get any answers I needed or wanted. So a couple of weeks ago I brought a transfer of records request to my old doctors old office to get the records brought over. Now he has no excuse my records will all be in my folder.
So I will see. The doctor thing is really more glamorous than it seems. I picked a weird hobby going to see doctors so much. I should have stuck to motorcycles.
Sometimes I feel like I am haunted by ghosts of my life. And I mean that figuratively not literally, well hopefully at least. I mean the past year has given me a lot of reflection time. I grew up 30 miles east of here. A lot of times when I am out and I drive by an area where something happened it makes me think of those times and places. Some of this is compounded I guess by the whole sickness and life reflecting thing I guess. Also I haven’t really had a social life in a year.
So I have a lot of reflecting time. It seems that life gets so different when you let it. I mean you can’t like all the new music forever. So what happens? You become musically old. I mean the older I get the older my music tastes get it seems. You don’t really move forward with the times.
I mean it is all about what you do for yourself. So I try to keep myself busy, and I am trying to guide this year into getting back to a life.
6:57 PM
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