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12/12/07 10:04 - 28ºF - ID#42494

major rant/surgery/tumor update

yes, (e:paul), we saw one of the doctors that is part of the wnyneuro-oncology group, dr. pollina.

funny thing is, is that he also works at the same place as the first neurosurgeon dr. castaglia, who said we need to have the surgery right now because it's such an emergency.

so we meet with dr. pollina at roswell, and after reviewing the MRI's and reports and after examining my dad, he said that he's not even sure if it's a tumor!

how is it possible that there are 3 different doctors with three different opinions?!?!

the first says that it's a tumor and it has to be operated on right now.

the second says that it's a tumor and that it's inoperable.

the third says it might not be a tumor and let's take some drugs and do some more tests and repeat the MRI in two weeks and see what happens.

i was having major doubts about this surgery from the get go. the MRI report clearly stated that although it looked like it's a intramedullary tumor, other things, such as meylitis (inflamation of the spine) cannot be ruled out. after speaking with (e:jenks), i understood that radiologists often put that kind of stuff in reports to cover their own ass, however, i felt as if there was not enough information and too much doubt and much too much haste, to warrant such a huge and risky operation.

there needs to be more testing done, such as a spinal tap, to see what is possibly floating around in the fluid (such as viruses or cancer cells, which could give a clearer picture of what we're dealign with) and more scans, to see if there is a change in the size of the lesion and blood work to see if there is some kind of an infection going on. it just really baffles me as to how these other doctors (drs. castagllia and kowalski( the orthopedic surgeon, that was going to assist in the surgery by cutting the vertebrae)) rushed into this surgery without doing any of these things. i wonder what this doc will say to the other doc when he see's him at work. i often wonder if they like see each other in the hallway and are like, "dude, wtf were you thinking?" probably not.

apparently, he (dr. pollina) called the other doc (dr. kowalski) to tell him that the surgery is off. my mom called both, castagllia and kowalski, today to try to get this straightened out, and un-surprisingly, they did not even return her call.

(funny thing is that they called us 4 times yesterday and the day before to make sure that we don't stall on the surgery and to make sure that we it doesn't take too long to see the roswell guy because we don't have the luxury of time)

the roswell guy (dr. pollina) said , frankly, if it's a spinal tumor, whether we have the surgery this friday or three weeks from now, it doesn't matter, it's bad news either way. but to have such risky surgery for something that was not surgical or if surgery would be of no help, that would be much worse.

ugh, i just want to choke dr. castagllia and dr. kowalski . they are just dropping the ball on everything. dr. kowalski is the guy who initially said "oh this is not a back problem, you have bad hips and you need to have both of your hips replaced. that's why you're having all these issues" um....buddy....if this was a hip replacement problem, would my dad be having pissing issues and sudden onset of burning sensation in his thighs and numbness throughout his entire legs all of a sudden? if your hips were in such bad shape, wouldn't you kind of know that? wouldn't that happened gradually, over time? wouldn't you have increasing walking issues as opposed to a sudden onset? i mean, wtf, even i can figure this out, with a little bit of common sense and google.

his problem is that he's cocky and he doesn't listen. he didn't do a through examination when he saw my dad. he didn't even touch him. how do you skip something like that when you have a patient that has an acute onset of symptoms that are progressing so rapidly and is losing his ability to function? that cocky son of a bitch assumed what he thought the issue was, ignored what my father told him, and tried to bamboozle us into an operation that could possibly leave him paralyzed for life.

dr. castagllia, who is apparently a buddy of his, since they do these kinds of surgeries together, (one cuts the bone, the other cuts the spine) never even had the MRI report that was done on the spine when he met with us and told us we need the surgery. he never even had any blood results, never spoke to my father before making his diagnosis, never physically examined my dad, never requested any additional tests. he decided on the surgery before he walked into the examining room from just talking to dr. kowalski.

what is it? is it the novelty of the condition? do they just want to go in there to poke around because this is so rare and they want to explore? or is it the money they would get to bill the insurance for? i mean, this kind of operation must cost tens of thousands of dollars, right? or is it because their egos prevent them from seeing the bigger picture or prevents them from saying that they are not sure, or is it because they are lazy and don't want to take the time to see the big picture.

i feel like (e:paul) right now. i am so fucking fed up with this shit and these doctors and the whole medical system and i'm sure there is plenty more shit to come.

p.s. i know this post is so damn scattered and long i'll be surprised if anyone can make any sense of it, but i just want to get it down on paper, for my own sake.
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Location: Buffalo, NY


12/12/07 08:33 - 33ºF - ID#42484

depressing stuff

for those of you who don't want to read depressing stuff, it's probably a good idea to skip over this one (and many more to come).

there are some major issues going on. today we are going for our third opinion regarding my dad's cancer. apparently spinal cancer is very rare. much more rare than brain tumors. usually, when you have cancer of the spine, they are secondary cancers that have metastasized from somewhere else, like the lungs, prostate, or breast. the good news is that this is not the case for my dad. he does not have lung cancer that has spread everywhere, but rather a single tumor that stems from the spinal cord itself. this type of tumor is called a intramedullary tumor.

however, the problem is that the tumor is growing from the inside of the spinal cord, out. pushing the the healthy tissue of the cord against the spinal cavity. and the other problem is that we have two different opinions as to what can/should be done. the neurosurgeon that we saw, who works with the orthopedic surgeon (who initially misdiagnosed the condition saying this was an issue with his hips and he needed to have operations to replace both of his hips) says we have absolutely no time and need to get the surgery done this friday. the other opinion, coming from the neurologist, is saying that this is inoperable and will most likely leave him paralyzed.

i mean, how do you cut into the cord to get to a tumor that is growing on the inside? in addition, the tumor is so long, that they would have to break at least 6 vertebrae to get to it. the tumor stems from vertebra T8 all the way down to L1. think about your back and feel with your fingers the vertebra bulges on your back, start somewhere in the middle of your back and move down 1, 2, 3, 4, 5, 6 vertebra. that's how long the tumor is. so they would have to cut the cord length wise and that means that they will have to break all of those bones in order to get to the cord. that in it's self is major recovery time.

my dad has left the course of his treatment entirely up to my mom and me. whatever we decide to do is what he will do.

so today we are meeting with roswell to see what options he may have, and although i am sure surgery is unavoidable, i'm not sure i want him to go through all of that if the benefits will be minimal or he'd be much worse.





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Location: Buffalo, NY


12/05/07 05:11 - 18ºF - ID#42406

as if

it couldn't get any worse.

as you guys know i live with my mom...and dad. they're both relatively young. she's 59, he's 57. he's been having some issues with walking. major fast onset issues without any injury. all the doctors were like, oh it's a nerve problem, you have some herniated disks, etc etc etc.

well, today my mom came home and said that it's cancer of the spine.
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12/05/07 11:09 - 22ºF - ID#42402

so funny

omg, you guys have to watch this. it made me laugh my ass off today.


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Location: Buffalo, NY


12/04/07 09:26 - 24ºF - ID#42395

i wish the brakes on my car would fail

i just got a message on myspace from someone that i was once very close to. it was very sweet. lord knows i needed that right about now. i'm not sure if the last post was the reason or just a coincidence. whichever it is, thank you.




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Location: Buffalo, NY


12/04/07 12:36 - 27ºF - ID#42389

burden

This one is mine. i must admit it is terribly long. you don't have to bother reading it all, or at all. but it would be nice.

How can I illuminate the faded spark within you?
The task scares me to near death
Wish I could slip my hands inside your chest and rip apart the rooted scars
Your clumsy dance with life has left you with quite the injuries
Were you paying close attention during her brutal lessons?
Has she taught you anything worth knowing?

How far will we track before one steers off course?
I fear, someday, you will tearfully shift your eyes away when asked about this love and what remains of it
Or perhaps, lying still and motionless, you'll yearn for passion, reflecting how it once came so freely and generously

Quiet down now...I know things
No need for brutal honesty here my friend
Because I know the discomfort and uncertainty your words can bring about
They torment me without warning
And make my hands shake and my blood thin
I should have ran, I still whisper
But lessons learned late can still be lessons learned

I envision your evolution within me
And often play with infinity as it molds your existence into mine
I let it gently unfold
This is how I can protect you from your enemies, your self
I don't know your demons, we are not that close
I've only seen them on the rare occasions when you've looked the other way and forgot I was watching
And I fear that, as you approach, they'll engulf me as well

But somehow I want to carry that burden
Unsure of whether I now have a choice
I suppose I could blindly hurry forward, head down, without glances, so as to not acknowledge their sinister presence
But I don't know where to then discard their unbearable load!
Thoughts, of shivering aloneness on concrete floors form
Wishing I had never locked hearts with you

Look here, I found these pages crumpled at your feet
They are the endings you wish you could have written, for all your other loves
But you've never been taught their baffling tongue
So chapters were written for you and endings eventually discarded
And so, you remained passively cornered
How have you survived the self exile?
Holding your breath? Shifting your eyes? Sobbing inward? Sneering outward?

You stand engulfed by a stench so few can stand,
I watch as you sit at the edge of this swamp, hoping your innards spill forward, washing away the rot
Don't you have something to dispose of?
You must have the strength to drown it with your own bare hands
It has run its final course
And mangled you long enough
All the while throwing you nothing but tears as scraps
It is now time to say a quiet goodbye, exchange a quick kiss, and pry the claws out of your chest
I warn you; avoid its pleading glare at all cost
Do not forget how you've been fooled before

I cringe when faced with the thoughts of us becoming the mediocre and the insignificant, as our beginning comes to an end
Will we remain within this embrace while planting kisses on foreheads once the anticipation and lust begins to slip through our fingers?

I am worried
Because I see toxic potential in you,
The potential to be ruthless with idealisms and ideologies
Which are ALWAYS only successful at someone else's expense

Nevertheless,
my thoughts have dressed you in satin ribbons and bows and balloons,
like a solitary birthday gift awaiting its anticipated revelation
But I know that celebrations don't last forever
The uninvited hold grudges and others overstay their welcome, all the while someone is painfully vomiting some horrid bullshit they've been fed

I know eventually everyone flees
And I am left with only a cold and dirty mop in hand
It is then that I try to seek comfort beneath my flesh
Right where I've planted you to grow
Hoping you haven't left too
Will reality find only remnants of your warmth drifting through hollow canyons haphazardly carved by our misguided expectations?

Too late to flee, I suppose
My ankles have been severed by my eagerness
The fog of uncertainty has crept up within my throat

Yet, I don't want a promise for my future
That would shatter all that remains whole
My hope is not to foresee but to forgo

Just remember, my dear lover
That as you entertain your dark fiend,
And your days and nights fade into one another,
Rest will become nonexistent and peace will certainly abandon you

Please
Grasp the jaws of the monstrosities that are feasting on you
I can see how their voracious appetites have nearly devoured you
Yet, you plead; they are so precious to you
You stroke them so gently
Caress their silky hair
And insert them beneath your bruised skin
You must,
When you gaze at your distorted image in the muddy water,
Realize,
They do not define you

Please
Shift your eyes from that convoluted mirror and listen to these hurried words
I worry
Lost on your winding path, I try to keep pace with the blind man I met along the way
If he could only see his resemblance to your angelic face
But he knows how blessed he is
Ignorance IS bliss
And so he sends his deepest regards

I now know that I can't run through darkness while my soul is searing with your burning image
And still, I cannot escape my acidic thoughts of uncertainty
In the end, I hope and plead that the our sweetness does not fade into a bitter concoction of apathy as comfort takes its proper seat
I pray that your demons become nothing more than distant acquaintances, rarely invited, but tolerated and contained, unable to molest the good I want you to know

Nevertheless, the question remains
Once this crusade ends,
And all that could be said is said
And all that would be done is done
I wonder
Who will remain to carry MY heavy burden?
When I cannot lift, carry or hold
When even the strength to write you these poems eventually escapes me?

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Permalink: burden.html
Words: 1033
Location: Buffalo, NY


11/29/07 10:35 - 28ºF - ID#42334

i shall not care

i used to be obsessed with dead poets, especially ones who've killed themselves. i think my favorite was sara teasdale.
    
I Shall Not Care
    
When I am dead and over me bright April
Shakes out her rain-drenched hair,
Though you shall lean above me broken-hearted,
I shall not care.

I shall have peace, as leafy trees are peaceful
When rain bends down the bough;
And I shall be more silent and cold-hearted
Than you are now.

Sara Teasdale

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Words: 78
Location: Buffalo, NY


11/29/07 10:49 - 44ºF - ID#42328

secret santa reminder

there are still many of you who have not responded to the secret santa extravaganza!

this is a second plead for you to join in the merriment. i guarantee it is a load of fun. ask all of the participants from last year. even if you're not going to the party, it is still nice to get a present in the mail.

if i don't hear from you, i will start pestering you through email and may eventually stalk you and leave you orgasmic phone messages.

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Words: 86
Location: Buffalo, NY


11/26/07 10:25 - 39ºF - ID#42296

tonight

i'm going out drinking tonight...with a mission. wish me luck people!
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Words: 12
Location: Buffalo, NY


11/18/07 10:52 - 35ºF - ID#42190

boobies

i had a post written about little boobies, but i got distracted, closed out my browser and now it's gone. i wanted to talk about boobies, and how much i like little ones after i found this picture of a young janice dickinson. i hate big boobs. i would give anything to have little, tiny boobies. they're just so much more feminine to me; more delicate and sensual. to me, they seem to portray class and a clean, natural beauty. (probably two things i have the least of) i cannot understand for the life of me why women want bigger breasts. i have been plagued with big boobs from the age of 11 and hated it from the beginning. tiny boobie girls, be happy with what you have. less is more. less boob is more beauty.

image

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Permalink: boobies.html
Words: 137
Location: Buffalo, NY


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