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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Friday, January 16, 2004
1/16/04
So it’s been a year since I left work. Tomorrow will be a year since my surgery. Where did the year go? I mean I have made it out of this therapy, but the disease is still winning in a way. I don’t have my freedom still. I feel like I have been hovering over the airport for a year. I had a friend that is doing well tell me that these are the most productive years of our lives, where we should be raking it in and climbing up the ladder. Oh, I somehow missed that memo. I got sidetracked is all. The up part is I am still above ground. I guess it is just frustrating to be young and not in control of what’s going on. Hell I have accomplished a hell of a lot of doctor appointments. I told them that they should have frequent patient programs. What can I say in reflection that I haven’t babbled on about before? I guess I can bang out the newest update. I had an MRI and a couple doctor appointments already this year. I have one more on next Monday. I haven’t been getting sick from my maintenance chemo program. That’s a bonus. I saw my seizure doctor last week. It was kind of a routine appointment. I asked him about additional treatments in case of a third round. He was against the thought of a stem-cell rescue program. He personally doesn’t see enough results from them. I am not a big fan. I mean put me in the hospital try to shut down my whole body then jump start it with some frozen stem cells? And I thought the food was un-appealing in a hospital. So this doctor said he didn’t really see too a lot of results from this treatment. It don’t take much to convince me not to volunteer for torture. He did bring up that the future of treatment is finding a way to just target the actual gene or tumor that is acting up and knocking that out. Right now the chemo I take attacks my whole body as well as the tumor. The trouble is we are not at the point where we can go right after what we need to yet. The moral of the story is everyday above ground is another day advanced in medicine. So take this lesson with you:
The longer you live, the longer the doctors can make you live. If you die, they can’t help you. That is the moral here.
Can we make it a little friggin colder out? I had to get that out. Screw all you southern people where it’s hot!!!
Where I am at in a song today:
Lou Reed Trade In From Set the twighlight reeling
I met a new me at 8 am, the other one got lost
This was not a trade in, although I wouldn’t believe the cost
I woke up crying as we said goodbye
Me an my old self, each day he vanished more and more
As I became someone else
He actually was murdered I had taken him apart
But when I put him back together, I couldn’t find his heart
It was resting underneath a chair, in a bed of bright tin foil
If I pulled back the flaps, I could still see it beat
I could still hear his voice uncoil, as I said :
I want a trade in, a 14th chance at this life
I’ve met a woman with a thousand faces
And I want to make her my wife
How could I have been so mistaken, how could I think that it was true
A child that is raised by an idiot, and that idiot then becomes you
How could I believe in a movie, how could I believe in a book
But most of all how could I listen to you, such an obvious schmuck
A life spent listening to assholes, it’s funny but it’s true
So get rid of them I said to myself
But first I’m getting rid of you
I want a trade in, a 14th chance at this life
I’ve met a woman with a thousand faces
And I want to make her my wife
Take me over to the window, my heart said to my head
Please set me on fine, so we can start again
I was so wrong that it’s funny, and I can’t apologize
But instead you can be everything that I’m not, the second that I die
Ooohhh, I want a trade in, the second chance at this life
I’ve met a woman with a thousand faces
And I want to make her my wife
Ha!
A 14th chance at this life, I want a trade in ...
... I said ... uuuhhh, 14th, 14th chance at this life
Lou Reed kicks ass, as if I never told you that either….
You get to points where you always think the grass is greener on the other side.
Well it never is, you know that. I look at my crap I went through and at the end of the day it really isn’t a big deal. I go to sleep, and get up in the morning everything in between is a void really. I made it to 30, I mean 30 has sucked, don’t get me wrong. But when I went to the clinic in the city to see little kids all messed up sucked. So it’s all perspective, and I hate that, well there’s always someone worse off than you crap. At the end of the day, I can’t help that person and they can’t help me so we are worthless to each other.
But you do get to the point where you want a trade in sometimes, like hey I bought this new high tech gadget and it’s a friggin lemon. What are you gonna do I should have gotten the extended warranty on my head and my life.
No it aint that bad, heat is on food in my tummy all that good stuff. I guess the void I have put myself in sucks. I had very social jobs previously and now, I don’t have that anymore. I feel a lot of times even friends are off in their lives and it sucks for them to be there sometimes, no they don’t think that but it just sucks not being able to have my freedom I guess.
That’s why I think of trade in a lot of times. I just want to start over. Pick up and start over with a clean slate. I would love to shave 10 years off also, but so would anyone over 28 I think.
I guess you get used to a lifestyle. Since 17 I was able to basically get around on my own, come and go as I wanted / needed to. I have spent 13 months now having to be driven around. Trust me those around me aren’t enjoying the fact that when they drop me off I don’t tip.
I guess the independence is hard to lose. Chemo sick is throwing up without the party. I lost my driving like I caught with like 3 first time DWI’s. 18 months minimum without driving. I don’t miss the car payments anymore that’s for sure. I miss my car though driving and New Jersey, our whole state is set up to drive.
The whole damn experience is friggin emancipating. I mean I have managed to keep the house afloat all the bills, but I can’t really do much for myself.
OK I know the self-loathing. Hey you logged onto MY page!!!
So what would you change if you could change anything? Like you could answer, I mean the brain thing, I guess, a lot stems from that. But that is something that I kind of deal with at this point. I just really want my life back. I mean throw me a bunch of cash, I mean a bunch and I will figure out how to deal with things a lot better. At the end of the day money makes money. Hell if I could buy and sell real estate I could turn money especially in this overpriced area. I wouldn’t mind breaking out and totally starting over, I have this bad instinct of wanting to split and start somewhere else like my demons won’t follow me, but they always do. There is no distance you can travel to get away from your own demons. I would still wake up and be me.
7:46 PM
Wednesday, January 07, 2004
So it’s a new year. On 1/1 I experienced my first “event” since 12/19. It was weird because it was very light if I can use that term. Simply a little facial activity and maybe 45 seconds long. So I am still keeping up with my bi-weekly seizure activity. I go see that dr. tomorrow. Every time I try to get out, they pull me back in!! If you don’t get the movie reference, forget it. I also started on the first my chemo maintenance regimine that my neuro-oncologist outlined for me:
Impression and Recommendations:
Clearly, any further therapy must await complete resolution of his pancytopenias. (getting my blood counts back) However, after his next brain MRI in 2 months’ (the end of October) time I would recommend his starting up the following “maintenance” chemotherapy regimen, which should be extremely well tolerated: (a) Temozolomide at 75mg / m2 / day x 42 consecutive days at bedtime followed by a 14 day break. (b) calcitriol 0.5ugm daily continuously.
So the first night SUCKED. Imagine just getting a hangover and no partying. I awoke about 2am knew I was nauseous, and going to be sick. From about 2:30 am to 4:30 am I puked my brains out. Or possibly just a bunch of bile. I was pissed the next day and not a fan of this treatment. I have pre-medicated each night since and done pretty well. I haven’t gotten sick since. I still hate taking the chemo. I hate taking it every night. But they say this is a preventive maintenance measure. Again they give you 2 choices: fight it take the abuse from drugs or don’t. Didn’t they used to say drugs were bad for you….. look what they did to Elvis!! I am not going out in the bathroom… At least not without a good book, wait Elvis had a book with him…. Never mind….
I Went to the Jacob Javits Center for the bike show this past Sunday. Did I ever tell you I hate crowds? Well I do. Orange County Choppers, last year I heard that no one cared they were there. This year you couldn’t get near their location none the less see the bikes. When I knew the entire contour of the guys butt in front of me, and I was pretty sure we were intimate, I had had it. I did get to see Indian Larry, If I have to explain you wouldn’t understand. I hate to break this news Larry don’t shower. There were some really tricked out bikes. And all the manufacturers were there, most of them I am not too interested in. BMW Suzuki, Yamaha, etc they don’t do much for me.
8:07 PM
12/31/02
Ever been here?
Ani Difranco You Had Time From: Out Of Range
how can i go home
with nothing to say
i know you're going to look at me that way
and say what did you do out there
and what did you decide
you said you needed time
and you had time
you are a china shop
and i am a bull
you are really good food
and i am full
i guess everything is timing
i guess everything's been said
so i am coming home with an empty head
you'll say did they love you or what
i'll say they love what i do
the only one who really loves me is you
and you'll say girl did you kick some butt
and i'll say i don't really remember
but my fingers are sore
and my voice is too
you'll say it's really good to see you
you'll say i missed you horribly
you'll say let me carry that
give that to me
and you will take the heavy stuff
and you will drive the car
and i'll look out the window and make jokes
about the way things are
how can i go home
with nothing to say
i know you're going to look at me that way
and say what did you do out there
and what did you decide
you said you needed time
and you had time
I mean eat this verse up:
you are a china shop
and i am a bull
you are really good food
and i am full
i guess everything is timing
i guess everything's been said
so i am coming home with an empty head
Kicks ass! I mean if you aint been through that where you got nothing left to say. Well don’t worry I have been there for you.
Well for a year end wrap up what do we put in this thing?
I had surgery and got sick a bunch of times.
I guess it comes down to that.
The rest of the package has met Mr. Meat Grinder also it seems. After the full year of being sick, laid off, the every two week seizures. The new med’s are still holding off the “events”.
Man when you pile all the shit up it aint worth it. At the end of the day, I want to go out on my own terms. Is that to much to ask? OK maybe it is.
Lou Reed – What’s Good – Magic and Loss
What’s good? (what’s good? )
What’s good? (life’s good)
Life’s good (life’s good)
What’s good? (life’s good) but not fair at all
To me if they could tell me in a crystal ball I got x months to ride the ride. I would dump my stuff immediately where I wanted it. How cool would it be to be able to hand out your estate to the people you want to have the stuff. The books, the cd’s, computer, tools etc.. Then again there isn’t much more than that.
But I want to go out on top and not lying all laid up with tubes and crap. OK survey says everyone else agrees, not much of a stretch here. But here’s my plan of attack, a happy ending for me.
Dump the house to get some “going away money”. Buy the bike I always wanted in CASH. Throw a little around where I want to. Then take the bike and whatever fits on it with me and hit the road. Where doesn’t matter as much as just having that final freedom of just going out there like I experienced before. Jut hit the road and go. The US is huge, and has a lot of blacktop to wander on. Just hit the road and go town to town. The freedom of just clearing my head literally!!! That’s it, the whole script, empty out the house, sell it for traveling money and hit the road. That’s it. If I am to write the end that’s what I would want to just go. It would be like I was going on a trip versus just waiting for the recurrence problems to happen. That is how I want to punch out.
Man that would be the friggin best to have my freedom back again and to just go. I dream about that sometimes and it is the best. I am out on the road just me and a bike riding and riding.
Johnny Cash
The Man Comes Around from the album of the same name
And I heard as it were the noise of thunder
One of the four beasts saying come and see and I saw
And behold a white horse
There's a man going around taking names and he decides
Who to free and who to blame every body won't be treated
Quite the same there will be a golden ladder reaching down
When the man comes around
The hairs on your arm will stand up at the terror in each
Sip and each sup will you partake of that last offered cup
Or disappear into the potter's ground
When the man comes around
CHORUS
Hear the trumpets hear the pipers one hundred million angels singing
Multitudes are marching to a big kettledrum
Voices calling and voices crying
Some are born and some are dying
Its alpha and omegas kingdom come
And the whirlwind is in the thorn trees
The virgins are all trimming their wicks
The whirlwind is in the thorn trees
It's hard for thee to kick against the pricks
Till Armageddon no shalom no shalom
Then the father hen will call his chicken's home
The wise man will bow down before the thorn and at his feet
They will cast the golden crowns
When the man comes around
Whoever is unjust let him be unjust still
Whoever is righteous let him be righteous still
Whoever is filthy let him be filthy still
Listen to the words long written down
When the man comes around
CHORUS
Hear the trumpets hear the pipers one hundred million angels singing
Multitudes are marching to a big kettledrum
Voices calling and voices crying
Some are born and some are dying
Its alpha and omegas kingdom come
And the whirlwind is in the thorn trees
The virgins are all trimming their wicks
The whirlwind is in the thorn trees
It's hard for thee to kick against the pricks
In measured hundred weight and penny pound
When the man comes around
And I heard a voice in the midst of the four beasts
And I looked and behold, a pale horse
And it's name it said on him was Death
And Hell followed with him.
It would be a one way ticket, like the old permanent vacation. No I don’t want to go out now. I don’t even have the bike.
7:51 PM
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