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, December 20, 2003
12/20/03
So I can't be the only one that gets stoked by Bobby D. Bob Dylan to all you hipsters. The man can write a song.
Standing in the Doorway from Time Out of Mind
I'm walking through the summer nights
Jukebox playing low
Yesterday everything was going too fast
Today, it's moving too slow
I got no place left to turn
I got nothing left to burn
Don't know if I saw you, if I would kiss you or kill you
It probably wouldn't matter to you anyhow
You left me standing in the doorway, crying
I got nothing to go back to now
The light in this place is so bad
Making me sick in the head
All the laughter is just making me sad
The stars have turned cherry red
I'm strumming on my gay guitar
Smoking a cheap cigar
The ghost of our old love has not gone away
Don't look like it will anytime soon
You left me standing in the doorway crying
Under the midnight moon
Maybe they'll get me and maybe they won't
But not tonight and it won't be here
There are things I could say but I don't
I know the mercy of God must be near
I've been riding the midnight train
Got ice water in my veins
I would be crazy if I took you back
It would go up against every rule
You left me standing in the doorway, crying
Suffering like a fool
When the last rays of daylight go down
Buddy, you'll roll no more
I can hear the church bells ringing in the yard
I wonder who they're ringing for
I know I can't win
But my heart just won't give in
Last night I danced with a stranger
But she just reminded me you were the one
You left me standing in the doorway crying
In the dark land of the sun
I'll eat when I'm hungry, drink when I'm dry
And live my life on the square
And even if the flesh falls off of my face
I know someone will be there to care
It always means so much
Even the softest touch
I see nothing to be gained by any explanation
There are no words that need to be said
You left me standing in the doorway crying
Blues wrapped around my head
Aaaah according to Bobby D. he aint never been treated fair I guess.
Some people don't like his whiny voice or politics whatever. Read the man's words and they will hit you on some level.
It seems like the more time we have the more we waste. Ever notice that? Time and real estate are cast in stone you can't create more of it.
It sucks feeling like you are old. I mean there are crossroads in your life. When you are real young the older girls are better looking, well they develop sooner the boyish looking ones your age. And then you catch up with them. In High School the girls try to look college age, but they don't have the hips. So they go to college drink beer, and low and behold they finally get the curves. It's all down hill from there. So I think college time is the ultimate, that's your peek. That's why the military loves to get you at 18. Then you leave college, another landmark is one day you are out and then you say to yourself. Hey kid, mommies looking alright. That is a scary day, but you accept it, and move on. You have matured, you have no need to drive past a high school anymore, remember, no hips. I don't think colleges ever lose their appeal. But you have moved onto another phase. Then you wake up one day, you are not involved in current music, you don't get it, you are not changing with the times. You no longer buy the new CD's every year. You buy old standbys, Bob Dylans catalogue, etc. Man it sucks getting old. You realize that you are no longer in that loop you are out of it. You are the age that The Who sang about dying before you got old. Welcome to getting older. Hey The Who did it, but with a lot more money, and if they need to print more they just do another final tour and kill off a band member (that killing off a band member is going to shorten their career for sure). I have not enjoyed 30. I thought I hated 25, that was a picnic, at least I was still in the game then. I feel like the kid in the home alone movie. Here's where all my free time goes, this introspective crap.
Maybe it's just this crap I have gone through. I dunno. I have basically been dropped out all year. I haven't accomplished anything I should have been doing at age 30. I should have been working my ass off getting somewhere. When your health drops out, then it is all down hill. I haven't driven a car in a year. I have no personal freedom, just what friends and family drive me around for. It is a change of lifestyle bigtime. There are no close stores living on top of a mountain in Jersey. Most of the year I haven't had any money to go shopping anyway.
A point here, only that it sucks losing your freedom of driving. It's like, ok let's take your health your driving your job. Go have fun.
It's been a constant adjustment. I am not used to not having my freedom at all. Sometimes I have dreams of having a motorcycle again. The freedom I had when I had the bike and would go out alone riding was awesome. That might have been the most fun with my clothes on.
Funny it was great because it was all that existed you, the bike, the open road, no job, problems commitments etc.
The cool part is in your dream you can have the new bike you want, and not have to figure out how to pay for it.
In life it's like here's what you can and can't do. Cars, bikes on the list of can't do's indefinitely.
I have told people it is like I can become a random drunk driver at a moments notice with a seizure. I will always be on medication for them, and one can strike at anytime anywhere. So who knows, that bus that just drove past you might have jumped the curb and got you also. And the person that did a quick pick after you won the big one.
I finally started doing some mail stuff for kids that have brain tumors. It is a website where you can read about kids, their situations, you can send them, their brothers sisters, and parents cards saying I hope you are having a nice day. They recommend not putting in hope you feel better because a lot of the kids won't ever get better. The first kid I started writing to was an 11 year old boy with a brain tumor. He had been through leukemia when he was younger and now was near the end. This is the type of perspective crap. Well I may hate being this old but I made it this far, go ahead punch me out. Davin, only had 11 years and fought a lot of the time. It sucks, I used to see it at NYU because there were children there being treated. I may hate being this old, but I got this far. A lot of these kids never make it out of the gate. It really bummed me out. I had just sent 2 Christmas books out to Davin and his sister, and then I read the email that said he died. It was like I knew it was gonna happen. Well ok we knew it was gonna happen, but it doesn't make it any better. So Bob's big Christmas story goes to Davin I guess if you are older than 11 be happy. And to paraphrase South Park: If you are sad about something, you must have been happy about something once, so just be glad you had that happiness at one point in your life. If you got little ones, don't forget them, no matter how annoying they are. Dying at 11 sucks, he never got anywhere near the hey kid mommies looking alright phase (see stages in life above). Davin passed in his sleep, and I am glad he doesn't have to be tortured with any more treatments, that's no way to live either.
I mean I like living don't get me wrong. I just wish I didn't miss my life. I mean this whole year was a wash. It don't do much to boost you up. Yeah Ok some drugs kicked me down and propped me up. But is it as simple as a common cold being gone, no remember, the end can suck for me, but so can anyone who walks on a sidewalk as a bus drives by. I guess it is the not having control, you can always jump from a bus, but you can't run from the big C if this thing wants to kick my butt it will win. I just wish I could have a life back again and have a little fun once in a while.
Davin kid you missed out on a lot of fun crap.
8:57 PM
12/9/03 Melancholy shit…you just get to feeling that way sometimes. I figure I would decorate the house up with all the lights. A kind of F U to cancer for Christmas… But I have said that before. 30 has been the pits I don’t recommend it to anyone. Avoid turning this old at all costs… it’s just an over-rated year.
You know I speak from experience when I see people being treated for Cancer it just sucks. If the battle ends for them, at least they don’t have to be beat up anymore. The treatment will just kick your ass to the point where even if you complain a lot it doesn’t help. I complained a lot don’t let me fool you. I just know there are times in treatment when you are all shitted up that you just don’t want to fight anymore. Kind of like the morning after my first chemo. Throwing up on the floor I was not about to want to be involved in this treatment. If you know someone going through this realize they are in living hell. It is one thing to find out you are being eaten alive it’s another thing to be put through physical hell to try to fight it. People say you lose your battle with Cancer when you die. Be happy they are not suffering anymore. We are nicer to our pets, we let them go with some dignity sometimes and end their suffering. People we push on and on. If you have no chance to win, why go through all the suffering at the end of your life. Why do we insist on torturing people at the end. Let them live their time out.
I mean it seems I have come out the other side again and am stable, much to the happiness to a lot of people around me. Your body tends to suppress the hell out of all the bad stuff. I don’t want to let it all go. I want to stay aware of what I kicked through to stand here today. A little perspective. I started a new medication yesterday. Now I take 2 different medications to fight off my seizures. I am hoping this cocktail will fight off future events. It would be nice to stabilize those events.
Oligo-astrocytoma, low / intermediate grade, recurrent.
Another name for the hole in my head.
7:43 PM
Friday, December 05, 2003
Snow. One word. We are getting hit something silly. Need some I will send it to you. What is new? Well we will do the cliff notes version here. My platlets are still recovering. I had them checked on Wednesday and they were low. Had a big seizure on Wednesday night, it was just like the one 2 weeks ago in the car (see that previous note about the roller coaster analogy). I spoke with my neurologist and he has decided it is time to add a second medication in to try to help control the seizures. He has had good luck with this stuff. So he called the pharmacy. The pharmacy called me they will have it Monday. I can’t get it before then anyway I am snowed in!!! So if you are keeping score I am having a seizure about every 2 weeks, and they have gotten a little worse. I had a couple that were just facials now they are whole left sider’s. I have an appointment with my neuro-onc in the city on Thursday but I don’t think much is going to come out of that appointment. My platlet levels are not high enough to start the maintenance chemo yet. SO that is about it.
I had a feedback about the lyrics post. I guess it didn’t bore as many as you as I thought. So I will throw some in here and there as the mood hits me usually they are songs that are hitting me at that time. Here’s one you don’t know about: There’s this local blues guitarist named Billy Hector (go to www.billyhector.com – shameless plug) He kicks ass one of the most talented guitarists I have ever seen, ever, ever!! He has this record called Undertow and one song in particular that is called Fix me Babe. This was my damn mantra for my last surgery last January. Check it out:
Billy Hector
Fix Me Babe From The CD: Undertow
Fix Me Babe, I’m Broken
Gril I’m lost in a jealous rage
Fix Me Babe, I’m Broken
And I just can’t act my age
Hold me till you heal me baby
And I won’t break no more,
Fix me babe, I’m broken,
Like that handle on your back door.
Heal me with your laughter
Make me smile honey, it’s been days
Hold me in your arms now
Lock me in your gilded cage
Hold me till you heal me baby,
Fix my hearts gaping hole
Fix me babe I’m broken,
Like that screen on your back porch
Fix me babe, I’m broken
Now don’t let this thing run its course
I’ve been angry and I’ve been shouting
Oh, don’t you know I’m a little hoarse
Hold me till you heal me baby
And I won’t break no more
Fix me babe, I been shattered
Like that coffee cup on our floor
Now I guess after typing it up it seems he wants her to fix his temper, because he is mad at her. Now I never realized that angle. The temper sounds like the old grouchy me now. But the parts that hit me before were the lines at the end of the verses about the handle on the back door screen on the back porch, coffee cup on our floor stuff. As I was going under on the table that is what I was humming to myself. That and Sympathy for the devil, because that is what the surgery team was playing for my surgeon. My last question, is that song for me, am I the devil? Remember I always think everything is about me!!!
10:59 PM
Tuesday, December 02, 2003
I have always been really into music. A lot of times I throw pieces of songs that I am digging at a particular time into this blog. Lou Reed, Dylan, NIN, Springsteen, Prince, Ani Difranco I really dig songwriters. This coming from a guy that grew up on deeply philosophical groups like Kiss, Motley Crue, Van Halen. I should be an unemployed beach bum reading Playboy!! Well I am unemployed, and I am not allowed to have Playboy in the house, besides, too many blondes. So back to what I was saying, sometimes you just hear a song, and it hits you. Maybe it’s that moment in time, but I dig when that happens. I caught this one the other night:
Bobby Jean Bruce
Well I came by your house the other day, your mother said you went away
She said there was nothing that I could have done
There was nothing nobody could say
Me and you we’ve known each other ever since we were sixteen
I wished I would have known I wished I could have called you
Just to say goodbye bobby jean
Now you hung with me when all the others turned away turned up their noise
We liked the same music we liked the same bands we liked the same clothes
We told each other that we were the wildest, the wildest things we’d ever
Seen
Now I wished you would have told me I wished I could have talked to you
Just to say goodbye bobby jean
Now we went walking in the rain talking about the pain from the world we hid
Now there ain’t nobody nowhere nohow gonna ever understand me the way you did
Maybe you’ll be out there on that road somewhere
In some bus or train traveling along
In some motel room there’ll be a radio playing
And you’ll hear me sing this song
Well if you do you’ll know I’m thinking of you and all the miles in between
And I’m just calling one last time not to change your mind
But just to say I miss you baby, good luck goodbye, bobby jean
Now I had heard the song’s original version, and it didn’t really hit me but I heard an acoustic version that just kicked ass. There are hundreds of songs. I guess it is when you can relate to something in the song in some way. You know what every songwriter tries to do (insert sound byte of Kiss “Christine Sixteen”- you see they were way out ahead of Michael Jackson on that stuff!) Sometimes it’s not even the exact words, but an image or a feeling that they give you that rules.
Tell me this doesn’t rule:
Ani Difranco:
I know this bar
With a jukebox full of medicine
And Christmas lights blinking
Around a clouded mirror
It’s not that far
From old voelkers bowling alley
Just go up there and turn right
It’s about three blocks from here
You’ll probably find Grace
Her shift starts around happy hour
She’s got this sweet face
Easy as tea leaves to read
You gotta know what to look for
You gotta know what’s there to find
But then I guess you don’t really know her
So nevermind
I used to hang out a lot around there
In that part of town
Where all the white kids
Still have feathered hair
I know this song
With this one really killer line
I don’t remember it exactly
But it slays me every time
It’s on the jukebox there
I know it’s number 55403
Go put that song on for me won’t you
And make Gracie think of me
Another Ani one, sometimes it’s just so cool when you can picture the whole song:
the diner
i'm calling from the diner
the diner on the corner
i ordered two coffees
one is for you
i was hoping you'd join me
'cause i ain't go no money
and i really miss you
i should mention that too
yes i know what time it is
in fact, i just checked
i even know the date
and the month
and the year
i know i haven't been sleeping
and when i do
i just dream of you
dear
i miss watching you
drool on your pillow
i miss watching you
pull on your clothes
i miss listening
to you in the bathroom
flushing the toilet
blowing your nose
i'm calling from the diner
the diner on the corner
i ordered two coffees
one is for you
the cups are so close
the steam is rising
in one stream
how are you
i think you're the least fucked up
person i've ever met
and that may be as close to the real thing
as i'm ever gonna get
but my quarter's gonna run out now
or so i'm told
i guess i'd better go sit down
and wait for you
till my coffee gets cold
Dylan:
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.
Dylan again:
Just a minute before you leave, girl,
Just a minute before you touch the door.
What is it that you're trying to achieve, girl?
Do you think we can talk about it some more?
You know, the streets are filled with vipers
Who've lost all ray of hope,
You know, it ain't even safe no more
In the palace of the Pope.
Don't fall apart on me tonight,
I just don't think that I could handle it.
Don't fall apart on me tonight,
Yesterday's just a memory,
Tomorrow is never what it's supposed to be
And I need you, yeah.
Come over here from over there, girl,
Sit down here. You can have my chair.
I can't see us goin' anywhere, girl.
The only place open is a thousand miles away and I can't take you there.
I wish I'd have been a doctor,
Maybe I'd have saved some life that had been lost,
Maybe I'd have done some good in the world
'Stead of burning every bridge I crossed.
Don't fall apart on me tonight,
I just don't think that I could handle it.
Don't fall apart on me tonight,
Yesterday's just a memory,
Tomorrow is never what it's supposed to be
And I need you, oh, yeah.
I ain't too good at conversation, girl,
So you might not know exactly how I feel,
But if I could, I'd bring you to the mountaintop, girl,
And build you a house made out of stainless steel.
But it's like I'm stuck inside a painting
That's hanging in the Louvre,
My throat start to tickle and my nose itches
But I know that I can't move.
Don't fall apart on me tonight,
I just don't think that I could handle it.
Don't fall apart on me tonight,
Yesterday's gone but the past lives on,
Tomorrow's just one step beyond
And I need you, oh, yeah.
Who are these people who are walking towards you?
Do you know them or will there be a fight?
With their humorless smiles so easy to see through,
Can they tell you what's wrong from what's right?
Do you remember St. James Street
Where you blew Jackie P.'s mind?
You were so fine, Clark Gable would have fell at your feet
And laid his life on the line.
Let's try to get beneath the surface waste, girl,
No more booby traps and bombs,
No more decadence and charm,
No more affection that's misplaced, girl,
No more mudcake creatures lying in your arms.
What about that millionaire with the drumsticks in his pants?
He looked so baffled and so bewildered
When he played and we didn't dance.
Don't fall apart on me tonight,
I just don't think that I could handle it.
Don't fall apart on me tonight,
Yesterday's just a memory,
Tomorrow is never what it's supposed to be
And I need you, yeah.
Alright Dylan has a ton of ‘em
OK Enough!!! Dammit.. you are still awake? I will just continue to throw some in here when it strikes me.
9:23 PM
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