BST16: well, not really - but close enough

Things are a bit muddled in my memory about the timeline of events today and tomorrow. For some reason they are melded into one in my head.

I know there were issues with my calling my wife at midnight one night, and 5am one morning. I know that the midnight call and the 5am call were the same night.

TO run down what I am positive of: This was the day before surgery. I was wired, tired, and on edge. I had developed a headache (more of the brain pain thing), and found out that the list of pain meds I could recieve was virtually no holds barred. I went the safe route and chose vicodan, which I knew how I reacted to having had them when my teeth were pulled. They did the trick.

Today I had no choice in meals, as they restricted me for the surgery in the morning. It was a lockdown kind of day. Docs in and out, constant monitoring of my vitals.

I was somewhat calm, or so I thought. But I did know that I was going to have a very hard time getting some sleep that night. I asked for some sort of sleep aid. Like Tylenol PM.

My likey Tylenol PM

I got one of those ones you see on TV. The ones the docs have to prescribe. I don't remember the name of it, or wether or not it worked. But lord, it did not mix well with the vicodan and the dilantin in my system. It was not a good night at all.

If Im right about this, then this was the night my room started changing on me. It no longer seemed like the stable, sanitary room that it was by day. At night, the shadows and lightpools seemed to define the room more than the walls. Almost as if the very shape of the room itself twisted at night. I had alot of rooms while I was at the hospital. Or at least I thought I did. My mother had a cot put in the room so she could stay the night rather than try and get back to the hospital before sunrise when I went into surgery.

As I said, the whole night is kinda fuzzy. I will have a clearer picture later when I have questioned my wife about what went on. But from my end - it was not a good night to be me. Or my nurses. Or one the phone with me.


To all you Health Care people out there who are reading this:

And I know your reading it, you folks at Carilion. The folks over at the VDH, and Trigon Blue Cross....

Read it, and take it to heart. This is more insight into a patient than most doctors ever receive, especially a patient going through something like this.

I was at CRMH today, having my PPD test checked. I get a funny feeling when I go into a hospital now. I get the feeling that Im sure hundreds of doctors get, thousands of nurses, millions of support staff: when they first walk through the doors in the morning. I can do some good here.

And thats kinda why Im writing this, as much for you as for me. I am writing it to illustrate the POV of a patient, what we go through. And how you help us. Well, all except the Vampire Squad.

This is as much of a thank you to the fine people at UVA, as it is a recounting of my life 3 years ago.

Many times patients don't get a chance to thank those who do so much for them, even rarer the nursing staff, after the fact. When they are healthy and as back to normal as possible, they never get a chance to thank the ones who dealt with them hour after hour. Who sat with them, listened and talked. Brought them a cup of what appeared to be coffee. (more on that later)

It's rare to ever see those faces again.

This is for them, this is for me, and most of all - this is for you.

BST15a: And Tom Waits

"I'm leavin' my fam'ly
Leavin' all my friends
My body's at home
But my heart's in the wind
Where the clouds are like headlines
On a new front page sky
My tears are salt water
And the moon's full and high

And I know Martin Eden's
Gonna be proud of me
And many before me
Who've been called by the sea
To be up in the crow's nest
Singin' my say
Shiver me Timbers
'Cause I'm a-sailin' away

And the fog's liftin'
And the sand's shiftin'
I'm driftin' on out
Ol' Captain Ahab
He ain't got nothin' on me, now.
So swallow me, don't follow me
I'm trav'lin' alone
Blue water's my daughter
'n I'm gonna skip like a stone

So please call my missus
Gotta tell her not to cry
'Cause my goodbye is written
By the moon in the sky
Hey and nobody knows me
I can't fathom my stayin'
Shiver me timbers
'Cause I'm a-sailin' away

And the fog's liftin'
And the sand's shiftin'
I'm driftin' on out
Ol' Captain Ahab
He ain't got nothin' on me
So come and swallow me, follow me
I'm trav'lin' alone
Blue water's my daughter
'n I'm gonna skip like a stone

And I'm leavin' my family
Leavin' all my friends
My body's at home
But my heart's in the wind
Where the clouds are like headlines
Upon a new front page sky
And shiver me timbers
'Cause I'm a-sailin' away"
Tom Waits - Shiver Me Timbers (Heart of Saturday Night 1974)

Its a metaphorical thing you see. We all have moments in life where we leave. We don't want to, but we leave. And wether we physically leave, or emotionally leave for a time - we are still not where we want to be. I had both. I was physically away from my girlfriend and assorted family, and I was emotionally gone from everywhere.

I existed only in this room, with the one big window I could not see out of. I could hear the long coal trains rumbling by down below, I could hear the Pegasus LifeFlight taking off and landing. But I couldn't see any of it. The window was like a tv with light but no picture. It was dry and hot these days in the hospital, no storms to light the window up with lightning. And except for the constant stream of medical staff and my parents, the outside world had ceased to exist.

The docs were always asking me the date and such - and I told them, if I havent read the paper, I dont know the date. And no, USA Today does not count.

I had never been to Charlottesville, I had no idea the layout of the city, or what might be 6 floors below me. My whole world consisted of that room, a few hallways, the MRI lab, and the bathroom.

And every evening, the outside world faded as far as the light in the window told me. Faded and went to black.

As this day closed, I was about 24 hours away from surgery. Which then led to the longest 3 days of my life, or the shortest stay in NeuroICU anyone has seen in a long time.

For those of you just joining us..

The story starts here: BST:the beginning

Feel free to skim if you like, or just pick up where you feel most comfortable.


BST15: Pleased to meet you, Hope you fix my brain

Have you noticed yet, none of the Tomorrow: BST**: whatevers actually appear as the next days title?

I swear when this is done, Im going to sit down and figure out the theme behind the titles.

Anyway, 15 days since my birthday. 15 days since I slammed my head into the change machine at Trump Taj Mahal. 15 days since the seizure-o-matic drive on my brain finally kicked over. And what am I doing?

Sitting in a hospital, being interviewed. Today was Monday, which meant all the staff and sundry were present and accounted for. Today was going to be a long day.

Now the poor nurses had to check my vitals every 2 hours or so through the night, so as much as I wanted to be asleep, I did not want them to have to wake me up - or worry about waking me up. I was getting real good at greeting them as they came through the door.

A quick word about my room. It was big, had a big single square window with the blinds between the panes. Had a bathroom to rival the ones in a penthouse suite. It also was directly attached to a nurses station. Not one that was monitored 24/7, but one of the satilite ones - where a nurse could gather more supplies as he/she needed.

I think it was up on the 6th floor. Wonderful view (for the 2 minutes I remember seeing it before I was confined to the bed.) The nursing staff could not have been more wonderful. If you know UVA Medical Center, you know the floors are laid out in triangles, precisely to confuse patients. I, to this day - could not tell you what room I was in if I was staring right at it. (and I think I was, during the Gamma Knife episode)

But anyway, there were two doors to my room. One into the nurses station, and a 2nd into my room. The doors had matching big square windows - but with no blinds. Not a big deal normally, as they dimmed the lights on the floor at the appropriate time. Except - the nurses station light was never turned off. It had no dimmer. Just that big square glass window straight into my room.

Not sleeping was very easy, especially when you would see a shadow or hear a noise in the hallway at night. I had no clock I could see easily when the lights were off in the room, I had no radio to lull me to sleep. I never thought of it till I was home allready.

So, as I would soon discover, like clockwork - the Vampire Squad came in at 5:00am to steal my blood. Then it was a wait, at 6am (or there abouts) the nurse came in to check my vitals and administer my meds. At 7:30ish am, it was time for breakfast. And at 8am, my parents were back in right on time to spend the day again. I give them much credit - they spent more time sitting there than I would want to.

Well, being the busy kind of day it was shaping up to be, I was totally in my right mind. Obviously.

Perfect time to send in the interviewers. First was Social Services, asking about my job and such. Somehow in my mangled description of my mangled job at Home Depot, I gave them the impression that I was a security guard. I believe I also said something about moving a 550lb cast iron tub by myself. Which actually was true. So on my SS forms I was classified as a Security Guard.

Then in came the man of my dreams. Tall, serious looking - but with a smile on his face a mile wide. A calm, easy going manner - but an intensity for getting things done right. Meet Dr. Shaffrey. My Neurosurgeon. The man inspires confidence, and heaven forbid anything similar happen to your loved ones, this is the man you want.

Well he gave my parents the run down, because lord knows I was barely keeping up counting my fingers. After he left, my mother went and called her cousin who is a bigshot nurse. Sure enough, after 2 seconds of checking around at her hospital, Shaffery was the MAN.

Next up on my hidden agenda, the Neuropsychologist. Why? Baseline testing of my brain functions and whatnot. Sure, I could make a ton of jokes here - but why bother. Several months after getting out of the hospital, on the occasion of one of my follow up MRI's, I had another run of neuro-functional/cognitive testing. Just an update kind of thing. The Doctor who ran me through the gauntlet then was the same one who put me through my paces before the surgery. Dr. Janie Irons. And I, feeling the fool - had no idea. Dr. Irons was the associate of the big muckety-muck Neuropsychologist, Dr. Farace. Both women have my undying gratitude for what they did for me. Dr. Farace would have done the test herself, but was tied up with another patient.

For some reason, in my head - I still envision the testing as follows: I was taken out of my room (not true) and brought to this big old library (not true). In this library I was seated in a window, on one of those nice window seats - where I could look out(not true). Dr. Irons sat with me on the windowseat (not true) and asked me questions, had me do puzzles, and talked with me about various things(true). The only thing I clearly remember is having a discussion about Star Trek (maybe true). Then when it was all over, I was back in my bed.

So theres the delusional "I HAVE NO BRAIN" moment for today.

I will have further updates later in the day.

BST14: Sunday Bloody Sunday

Allright, so maybe this title is a tad overdramatic.

Just a tad tho. Not much.

Sundays in the hospital were different, quieter. Time was spent watching TV, staring into space, watching some more tv. Managed to locate the NASCAR race, Watkins Glen at that. So bad enough I was slightly out of my head enough to think they (I HAVE NO BRAIN MOMENT) changed the body styling for the race (something chunkier and stockier than they normally run - for unknown reasons I was seeing the cars that way), they were also making both left and right turns.

Any wonder why my head was all screwy? Well, there was another factor.


(Q & A Time) "What are the possible side effects of Dilantin?
- an allergic reaction (difficulty breathing; closing of the throat; swelling of the lips, tongue, or face; or hives);
· hallucinations;
· slurred speech or staggering walk;
· a rash;
· changes in vision;
· agitation;
· low blood pressure;
· slow or irregular heartbeats;" (drugs.com)

So lets examine shall we? I was allready in the hospital for a tumor which causes gait issues, I allready had a rather calm blood pressure. My speech was slightly slurred due to the tumor. Agitation? No comment...

So really all the Dilantin did was add a rash and hallucinations.

Well, why the hell not?

When asked about it - the doctors called it "kinda like useful heroin - the benifits outweigh the drawbacks in most cases."

This is also around the time I stopped sleeping at night. Resting fitfully during the day, and as my mother put it "at all the wrong times." I'd be asleep every time the nurses and docs came in to check me, but awake when nothing was going on.

I was beginning to learn that the food at UVA was more than decent, it was actually good hospital food. Everything but the Turkey Tetrazinni. God what sludge, not to be rude. Im sure there are people out there who enjoy it - but Im not one of them.

And those days I would get something from the cafeteria downstairs. I had not seen it, but I was told it was huge - they had everything a person could want (including coffee.. and boy did I need it), all for low prices.

I was attempting to keep a journal while in the hospital - but only succeeded in making one entry. Todays: "Disoriented, delusional, and detatched. Dilantin. Welcome to lockdown."

For what its worth anyway...

Tomorrow: BST15: Stealing the baselines.


BST13: Good Morning, mind if I take your blood?

So I'm beginning to see a pattern developing here.

the 5am Vampire Squad wakeup call. Around 5am every day, the Vampire Squad comes rolling through, stealing blood as they go. They are awfully polite about it, and very gentle when they do it. But its 5am.

I was previously asleep.

And you want me to take a needle? Hmmm.. can we reschedule?

I do have to admit, this day was fairly easy. Basically testing, testing, and more testing. MRI's - I got these cheerio's for my head - helps the images to line up I understand.

Oh - and I was up to my 5th or 6th bag of saline. Little tip for all you age-obsessed women out there - want younger skin? Get hyper-hydrated with saline. I had the stuff in spades, to the point where my skin and nails looked as if I was just born.

That pink that only babies can get.

I was so full of saline I could taste and smell it. My skin felt damp all the time, it was seeping out of my pores. That was the nightmare of the day.... the saline. I kept asking if they could turn it off for a while. Oh wait, there was another nightmare - the blood-oxygen sensor cuff on my finger. Apparently when your finger is not perfectly level - the machine goes off annoyingly - to the point where even the nurses couldn't stand the noise of it.

They knew I was fine, as they had just checked me about 5 minutes prior, but the cuff was not level - so the machine got noisy.

They threated to tape my hand to my chest if I could not hold it. And lord know I tried. But it would not stay. So they made good on the threat. They taped my hand to my chest while I slept, it was probably the best sleep I had gotten since getting the stupid cuff put on.

All were happy.

Other than than - it was just more testing, more saline, more bad tv, and more meds.

Tomorrow: BST14:Dilantin iz teh SuX0r


BST12b: Just a little WHAT?

Allright, I'll admit it - I hate needles. I even broke out in a mini-cold sweat upon getting my PPD test today. (Got it for the new job, not for the WSLS Outbreak)

No, you don't understand - I really hate needles. It once took 3 nurses to calm me down just to get an immunization shot. One I had walked to, walked in, and walked out of 3 times prior.

Well, lets see.. Im being admitted to the hospital, and not for an overnight stay. Nope - Im being admitted for a stretch.

The docs want me hydrated. Apparently I was De-. The docs want me tested, bloodwise. The docs want alot of things, but most of all - they want in my veins apparently.

So I have to be outrigged with a gate-valve IV line. You know, those nifty things that you get so you don't have to continuously take new needles? Well, I was not thrilled with the thought of getting even the one to insert the darn thing.

But I was also out of my mind, remember? So somehow I changed the zoning regulations on my veins from a No Needle Zone, to Open for Needles.

I wish I had informed myself..

So I got the line-in. And they started me on the saline IV drip. Well, no, not drip - I had a push. If I recall correctly, the first day I went through 3 bags if saline.


But in nother news, I got to watch some interesting new shows. Like the West Virginia State Lottery show... Wow, was that a barn burner. God I'd love to see that again.

Of course, it might not have been as bizzare as I remember.

Thats a big might.

So tomorrow: Meet the Vampire Squad.

BST12: Welcome, won't you join us for a while?

It was a long drive to UVA. Long.. dull... drive. Plus, I was not looking forward to what they had to say. Still thinking it was nothing major, delusional as I always am.

We get there, park, go into the Neurosurgery offices and wait.

We are the only ones there. Kinda creepy. Fill out paperwork, hand over the films.

Now at this point, I don't remember anymore if it was Dr. Kassell or Dr. Jane Sr. that called us back into the office. I just remember there being a mood of expectant tension. He told us how he reviewed the films, then uttered the words no one was expecting.

Its a tumor.

A shockwave of stunned silence exploded into the room. The good Dr. broke it by mentioning that it was a particularly rare one, but by all indications - if it is the type he thought it was, it would be benign.

Central Neurocytoma. One of the rarest, and dangerous types.

From my studies on this little brainbastard, it is a slow growing tumor. Most likely I had it since birth, but until it hits a size where it causes problems, there is no knowing its there. It blocks the flow of Cerebro-Spinal Fluid causing the brain to crush under the pressure buildup. It is operable, due to location, and has a very good outcome for returning to normal life. Usually.

However, when you hear the doctor say (in terms of him admitting me for surgery and stablilzation) "You can either stay with us for the weekend, or you can go home and die suddenly," things have gotten a little out of hand.

We would know more after I had an MRI.

I HAVE NO BRAIN MOMENT: (another fine example of my dimwittedness) We go out to the car after figuring out the admissions thing. Im sitting there, smoking my brains out, and I call my wife (girlfriend at the time). Mind you Im sitting in the backseat of my parents car, they are sitting in the front.

I tell her that we found out what is going on with my head, and that I had "the Big C." To this day, echoing somewhere above C-Ville is my mothers voice yelling "It's not cancer, Its a tumor!" See, No brain..

I handed the phone to my mother who properly explained things. Thankfully.

So off to admitting we went.

And on that note, I must be off - more to come later today - I have things to accomplish.


It's done.

Testcast #1 is finished and ready to ship. Drop me a line @ forgotten.roanoke@gmail.com
and I'll pass it on. I've come up with a better way to ship than sending it as a file.


BST11: "So, uh, you watch the races?"

Well this is a big day. So Im not too sure of how to set out describing it.

If memory serves me....

I'm pretty sure my appointment was first thing in the morning. It was a Thursday, and we were headed from 616 in Moneta, to 122 - all the way to Rocky Mount. Carilion Franklin memorial or whatever. Nice looking place, although I was a tad bit concerned about the life-flight helicopter landing pad in the parking lot. Not so much for myself, but for the unwitting person who parked their larger sized car in the spaces surrounding.

I think we left before dawn, but things were pretty dark for me anyway at that time, so Im not sure. I remember seeing Rocky Mount and thinking what a nice small town it was. Then next thing I know, Im in the hospital, awaiting my first ever CT scan.

And waiting. Not long, but the wait was interminable. So this guy calls out my name, and leads me back to the CT area. Heres what I remember:

Sitting next to this massive computer, as he typed in my answers to the usual questions. Any allergies, history of blah-blah.. I guess I was looking visibly nervous, because suddenly he changed tack - "So, uh, you watch the races?"

Well there went another 20 minutes of prep, speeding by as we talked about NASCAR and all related things. I don't remember anything except how cool the guy was. Then it was time to lay down and take it. I was amused that they had to use lazers to target my head, make sure it was properly aligned. The usual admonisions about not moving, no sneezing - that stuff. Then he told me the plan - 15 mins of pics normal, 15 with contrast.

Ok - Ive owned many a camera and a tv or 2, I know contrast is something you twiddle with when your picture is not quite right. Right?


Boy was I wrong - after the first 15 mins he slides me out, and proceeds to play "Let's pick a vein." Again, I am non-plussed as I can visibly SEE this whole thing going on. He slides up a tray, and pulls out what I would think to be a sterilized, wrapped can of WD-40. Well it was big enough, but no - this was the contrast. Then he tells me he has 2 of them for me, I'll be taking 100cc's of contrast.

Lovely, had you told me this sooner I could have made alternate arrangements for someone to come stand in for me.

Slips the needle in, unlocks the hypo-side, locks in the contrast keg #1. He says it could burn a bit, tingle if you will. Nope, not me - nooo. I get immediate and total ice flowing through my veins. If you stabbed me with a penguin, I still wouldnt have this chill this deep inside me.

By the time he empties #2, Im tracing the path of ice water through my body. We wait, he has headed back to the monolith computer to time the progress - and then he announces that we are going back in.

Re-lined up, and I can hear the machine spinning inside the big donut. I can track it by the sound. Reminds me of a NIN concert, which was a good thing. It had a beat, it had a lead track. I could close my eyes and envision some electro-heavy band banging this out in the studio. I was happy - well, happy enough considering my arm had been brutally invaded by steel.

And yet to this day I have a dream of cybernetic implants. Tell me that makes sense.

Allright, this fun was over. I bid goodbye to the dude, and we headed back home. If I recall correctly - my appointment was for 9am, so we were back on the road. I think we stopped somewhere, maybe the Kroger in Rocky Mount for something - I dont know, I stayed in the car. Im pretty sure we stopped at DQ (the one infront of Lewis' office) before heading home.

So if you figure we hit the road home about 10:15, stopped twice, we probably got in around noon.

There was a message waiting. Dr. Lewis had the breakdown from the tech on what was on the CT films.

I was headed for UVA the following day. I had a meeting with the head (HEAD!) of the Neurosurgery Department. One Dr. Kassell (I believe).

Now, Rocky Mount was maybe an hour drive, UVA would be nearly 3 hours. There was no definitive answer as to why, but something on the CT had them concerned - although they wanted a specialist's opinion.

So my parents had to drive back to Rocky Mount and get the films, and prepare for a drive in the morning.

I packed my backpack again, tapes/cds/batteries/walkman.

What the hell was going on, I had no idea. But what was currently going on was ugly. The pain was beginning to ramp up to the same levels I had back in NY.

Not fully there yet, but getting there.

And this is where it begins to get really good. This is the part that you should keep your eye on. Welcome to the beginning of everything.

We're taking a short break today

Another day of waiting 3 years ago. Meh - even less to talk about with each day of waiting. But the wait wont be long - come tomorrow, everything kicks into overdrive.

So anyway, Welcome to October people! 69 degrees, overcast, drizzly nasty stuff. Yep - halloween must be right around the corner. Of course, I'd take this over the 90+ heat we were having. Then again, anything over 80 and I start getting cranky.

I just wanted to show you all something.

If anyone can tell me what this photo is of, I'll give you a brass filligree with bronze leaf.

And one more photo.

You know, maybe having the sign down is not the worst idea. It would be a hell of a conversation piece. If you could find a blank wall somewhere in town, or even maybe stick it in Elmwood Park, at ground level - and let it be lit. Be a novelty anyway.

So welcome to my day off from the BST, I'll be back with more later.