Letters To Glio

21 October 2009

Glio-san:

Tis the eve of your unrestricted growth. Tomorrow, a year ago, a $6,348 “Removal of Brain Lesion” (that’s you) was performed. Think of it as an eviction notice. This was followed by the necessary “Dura Repair” ($3,819). Entering the skull definitely fucks up the Dura. You know. The ole Gray Matter. Ah, but all’s well that ends well. But it doesn’t necessarily end. And probably not well. But I get ahead of myself.

Life continues apace. Apace. I work. I read. I sleep. The last not well, but I go through the motions each evening. One day at a time means exactly what it says. Do these things today. Arise. Do these things again. Sometimes I’d like to forego the ‘work’ part, but that’s not in the cards. Must remain a ‘productiove’ member of society. Must be able to pay for Heath Care. My personal wealth would not allow to many Dura repairs, dig? Which reminds me to check those lottery tickets.

Glio, I don’t know if you’re still there. They can no longer find you on the MRI. But I have a feeling you’re adept at hiding. At any rate, I sense your presence. Or maybe it’s just a shadow memory. I’d say, “give me a sign” but would I really want that? Better to keep me guessing, mon ami.

So, if I wasn’t in the middle of my 9th Chemo cycle, I’d pop open a bottle of something. Maybe next time. Ciao, bebe.

4 October 2009

Glio-

I oz’d myself. If I only had a brain. HAHAHAHA!

You can too! Click the self-portrait (goofy grin!)

 

 

 

 

 

 

 

25 September 2009

Dear G:

Checking in for September. We’ll becoming up on our first Anniversary (10/22) before you know it baby! I’ll getcha something special.

Big change in my life: I’m gonna have to start putting my keys in my left pocket. In my right pocket, I can no longer feel them. Strange sensation. I know they’re there, and I know I’m touching something. But without looking at them I can’t get them out. I’ve already taken to holding my coffee cup in my left hand. I can handle it with my right, but if I’m not looking at it as I walk, it tends to ‘drift’ a bit. Those coffee stains n the carpeted stairs at work.Those are mine.

26 August 2009

Dear G:

Last Saturday it was 10 months since most of you (not all, never all) was removed from my skull. Ted Kennedy died today) had one of your spawn in the same general area as I do, lasted some 14 months.

From the start, you and I  have  known we both are biding our time. Mine until the time reaches an end. Yours until ultimate victory. There’s only one winner in this. And we know who that is. Incurable is just that. The Terminator.

Le jeux  class=”hiddenSpellError” pre=”jeux “>sont faits.

In my favor is the fact that – all things considered – I’m in fairly good shape for my age. Certainly better than Ted was. Money can buy the best health care in the world, but thus far, I’ve no complaints on that score. I believe I’ve had the best and my two major events – the surgery and the six week radiation/chemo treatments did what they were supposed to do.

Now I’m on the maintenance phase for up to 18 months. After that, we’ll see what we shall see. I feel pretty good except for a short period of about three days per month when I finish my 5-Day dosage. Tired. But I bounce back after that. I continue to work. I continue to run (though having lost 30 seconds to a minute off my times pre diagnosis). I continue to function pretty much normally (though I type like crap now, with that right hand numbness). But you can’t have everythhing, huh?

 

Pay attention, G!

14 August 2009

Dear G:

Well, I had my every-other-month MRI, and you were still nowhere to be found. Hidden in the tendrils and scar tissue of surgery.  So I give myself a good 2-months more. I don’t take it one day at a time. I’m not there yet. I take it two months at a time, and I just banked two more.

C

7 August 2009
Glio:

See ‘ya Monday, G! Course,to “see” you is quite a process. Through the prism of a magnetic resonance image. What? An MRI. Another 12 Grand or whatever. Not exactly a polaroid, huh?

9 JULY 2009
Glio:

Wow! It’s been what… exactly4 months. Time flies when you’re…..But really, there’s been nothing new. No news is good….ummmm. One cliche after another. Like: Each new day is a gift…Well. Another MRI next month. Just to chuck up on ‘ya. I mean check up on ‘ya. The last few have shown nothing new happening. Let’s keep it that way. Back to sleep with you.

8 MARCH 2009
Glio:

This songs for you

I had a dream
Crispy crispy Benjamin Franklin came over
Baby-sat all four of my kids

Then in my dream
I told the doctor off
He said if you don’t want to do it
then you don’t have to do it
He said the truth is
You’ll be okay, anyway

Then in my dream
Crispy crispy Benjamin Franklin and the doctor
Went and had a talk with my boss

Something about insurance policies
They kept the door closed at all times
I couldnt hear or see

When they came out they said
You’ll be okay, anyway
And I smiled cause I’d known it all the while.

No thank you no thank you no thank you no thank you
I don’t have to pay for this shit
I couldn’t afford chemo like I couldn’t afford a limo
and on any given day I’d rather ride a limousine

No thank you no thank you no thank you no thank you
I ain’t about to to die like this
I couldn’t afford chemo like I couldn’t afford a limo
And besides this shit is making me tired
it’s making me tired
it’s making me tired
You know I plan to retire some day,
And I’m gonna go out in style
go out in style
This shit it’s making me tired
it’s making me tired
it’s making me tired
I’m-a gonna go out in style go out in style

When I woke up
My kids were being quiet
I knew it was a dream right away
I called the limousine company

Then I got dressed
I dressed the kids as well
The limousine pulled in
And we piled in

The doctor he asked which way we were headed
I said, Sir, let’s just go west and he listened obediently,
Sophie only wants to listen to radio BBC
Michael sat on my knees and whispered to me
All about the meanies
Jacqueline was being such a big girl
with her cup of tea looking out of the window
And Barbara
She looks just like my mom
Oh my god, Barbara
She looks so much like my mom

No thank you no thank you no thank you no thank you
I don’t have to pay for this shit
I couldn’t afford chemo like I couldn’t afford a limo
and on any given day I’d rather ride a limousine

No thank you no thank you no thank you no thank you
I ain’t about to die like this
I couldn’t afford chemo like I couldn’t afford a limo
And besides this shit is making me tired
it’s making me tired
it’smaking me die
You know I plan to retire some day,
and I’m-a gonna go out in style
go out in style
This shit it’s making me tired
it’s making me tired
it’s making me tired
I’m-a gonna go out in style go out in style

Style
Style
Style?
Style.
Style..?
Style
Style..??
Style.

I had a dream
Crispy crispy Benjamin Franklin came over and
Baby-sat all four of my kids

I had a dream
Crispy crispy Benjamin Franklin came over and
Baby-sat all four of my kids

Sophie only want to tune us into radio BBC
Michael sat on my knees and whispered to me
All about the meanies
Jacqueline was being such a big girl
with her cup of tea looking out of the window
And Barbara
She looks just like my mom
Oh my god, Barbara
She looks so much like my mom

Oh my god, Barbara
She looks so much just like my mom…

I’ve had this Regina Spektor (Chemo Limo from 2004’s Soviet Kitsch) on my PMD/MP3 for a few years. Well, before I knew you, in other words. What does this mean do you think? Probably nothing, like much else most likely.

3 MARCH 2009
Hey Glio,

Are you ready for this? MGH (I’ve not taken you there), has a good idea: Using genetics as the key to cancer treatments. Right. Let’s face it. Treatment now is really hit or miss. Might work. Might not. There’s a lot more we don’t know than there is that we do know. The idea is to – as far as possible tailor treatment to the individuals and their wacky out-of-control cells. Sounds like a plan to me.

Brain Cancer? We do this. Breast Cancer? We do this. And so on. Makes no difference what specific possibly mutated genes in specific cells may require as a best case treatment. Makes sense, doesn’t it? Of course, it may not make (monetary) sense to the insurers. There’s the rub.

Just keepin’ you up to speed!

28 FEBRUARY 2009
Hey Glio,

Miss me? It’s been quite some time. We haven’t been bombarding you with chemo and rads for a month now.  Are you glad? But back to work. We took some serious photos of you on Monday (MRI) and you’re the same shriveled little presence that you’ve been for some time now. In other words, your growth has been stunted. Sorry about that! Have you been smoking on the sly?

Get ready for more chemo, little one. And 300 mg too. I know you’re used to only 140, but here’s the deal. Only 5 days in a row each month. Then nada until the next month. We’ll see how that goes , huh?

I’ll say one thing, though.Those MRI’s are sure weird. The brain looks like nothing so much as a horse-shoe crab when looking at the images. Very creepy.

Chazz

20 JANUARY 2009
Dearest Glio,

I am so sorry for letting my correspondence lapse. But you know I’m thinking of you. Like this morning for instance. I had a routine dental appointment (cleaning) and they told me it was about time for some x-rays. "No way", I said. I’ve got rays A-Z coming out my arse, and don’t need any more. Thank you very much. Neither does Glio. See? I stood up for ‘ya!

Congrats, Glio. As of today your bombardments are over. No chemo either. Just a little sumpin’ to keep you from seizing. Like Ted Kennedy today. In the back of my mind I monitor him to see one version of the future. Well, they axed me ifn I wanted the mask. I had been thinking of taking it and practicing my ballestra, but ultimately I decided against it. Too late in the game for a new hobby, dontcha’ think? So… into the trash it went. I ain’t sentimental thata way.

So be good, Glio. You’re on vacation for 30 days. Don’t do anything I wouldn’t do.

Your host,
Chazz

12 JANUARY 2009
Glio, you know I can hardly see now where the experts cut a piece of my skull and flapped it over to go in an getcha! It’s healed up so well. Are you still there? yeah…..I can still feel ‘ya. I’ve been thinking how Doctors (especially surgeons) are like highly skilled technicians. The care givers – and isn’t this what medicine is all about? – are really the nurses. This is true.

But highly skilled they are. The surgeons, I mean. Of course,  their tools get better and better. Here’s what my operation might of looked like back in the day.

Gruesome, huh?
Chazz

 

10 JANUARY 2009
Dearest Glio,

I have just read that last year MLB granted 108 waivers for banned substances for reasons of ADHD. That’s 8% of MLB players. Seems like a lot, don’t it? I’m  assuming this means Ritalin, which in kids is a downer and in adults is an upper. Go figure. A nice performance enhancing drug. Legal and everything.

How’s your performance doing? Poorly, I hope. I bring this up because I have a scrip for Ritalin, which I have never filled and do not intend to. So, don’t get your hopes up. I won’t be sending stimuli your way anytime soon. The more dormant you are the better, right? Least that’s the way I see it.

You’ll need to get your fix elsewhere. By the way, who IS your man, huh? Huh?
C

9 JANUARY 2009
Dear Glio,

I shaved down my head the other day. Do you like the look? Since all the tanning bed sessions (I look like I fell asleep in the sun lying on my right side) are on the left side of my head, that’s where I had some hair loss. I was looking a bit lopsided. Not to say demented. So off it came!

Now I wear a beret outside. Tres chic (pic above). I discovered a slit at the base of my skull that I never knew was there. Must be a word for that. Like that thing centered between your lips and nose. Wonder what it’s called? Everything has a name, right Glio? Some things have more than one. Like I have several  for you, which I’ll keep to myself at the moment.
C

7 JANUARY 2009
Hey Glio!

Enough is enough. Ease up already. By squeezing your way into my brain, you’ve effed up my right hand. Well, a few of the fingers at least. Well, you knew that, didn’t you, ‘ya bastid! This kinda pisses me off, ‘ya know? This morning I got the bright idea to wear the one shirt I have that has french cuffs. La de da, you say. Well, I like the shirt, allright? Only problem is it took me about a freakin’ half hour to work that cuff link into my left sleeve. Kinda aggravating I say. One if life’s little obstacles you say.

Don’t talk to me!
Chazz

5 JANUARY 2009
Dear Glio,

Today I had a follow-up with my Sri Lankan Radical-Feminist Neuro-Oncologist. Don’t get me wrong. She’s the best. Once again, I remembered my name, where I was and the date. These seem to be key indicators of adequate brain activity. I passed with flying colors. When she lightly snaps her fingers beside my ears and says "do you hear this" I’m always tempted to say, "What?"

Then there are three words that I’m asked to remember and repeat back later when asked. Today its was 33, red chair, and cat. I think it would be  more challenging if  I had to come up with a short comedy sketch based on these three words. But I do not suggest this.

I”m at 23 radiation treatments after today. I think I’m in for 36. I’ll need to confirm tomorrow. After the 36, I go off everything for a month: no chemo, no radiation. I will want to take a vacation during that tine. Preferably somewhere warm, with a beach right outside my door, with several books to read. This will be my own therapy.

Glio, you will love this.
Fondly, as always,
Chazz

3 JANUARY 2009
Ok, Glio…. Let me ask you this: Are we human, or are we dancers? Yeah….I didn’t think so. What can you tell me? Here’s one thing I do know:

My sign is vital
My hands are cold

Which brings me to this. I’m having a helluva time putting gloves on. Oh, the left ones ok. It’s the right one that is a bitch. How hard could it be? Five fingers, five finger holes. But invariably one finger or another wants to share, leaving a lonely and limp glove finger dangling. At this stage of the game do I really need to revert to mittens. With strings attached? Jaysus and glory be…

2 JANUARY 2009
Dearest Glio,
Well, as you know (better than anyone) I had my rads this morning (my 22d, at 3 blasts each). I go to about January 22d or thereabouts. Ya know, I been thinkin’. Radiation treatments just seem so medieval. It’s like guess work. Maybe it’ll work and maybe it won’t. Maybe we’ll zap a few other innocent adjacent cells while we’re at it. No reflection on the technicians, of course. They’re great people. But like most medicine, it’s all a work in process it seems to me. Wonder if  I can just get the leech treatment please? Some good ole’ fashioned blood letting,  perhaps? This should work just about as well, no? Whaddya think, Glio?

Yer fren,
Chazz

 

1 JANUARY 2009 #2
Hey, WTF? I have herpes of the brain? Human cytomegalovirus (CMV)? What a mind-fuck that is! So I started working out today. Doesn’t everyone do this on January 1st. It’s been about 10 weeks (although I ran prematurely on 2 consecutive days several weeks ago). What a disaster. Then and now. I’ve got to keep at it this time though. I’m sluggish on the weekend and at night. OK, during the week at work, though. So I guess I need to remain active.

Fun Stats for Glio: The 2 year survival rate is about 9%, 5 year: 3% and 10 years around 1.7%.

Ciao,
Charlie

1 JANUARY 2009
In October I was diagnosed with a brain tumor, although this word was never used. The euphemism varied from "spot" to "lesion" to "mass". I asked for the "spot", but what I got was Glioblastoma multiforme. Like, I really didn’t care what form it was or took (or should I tip my pinky into the air and say forme?

Thing is, I can’t really control my right pinky too much any  more. It has a mind of its own. Or really, the part of the mind that controlled it has gone missing…that bastid!

Whatever. Size of an acorn. I didn’t feel much like a chipmunk. Removed the following week. No biopsy was done prior. Had to come out. I looked it up. Some call it The Terminator. Does this mean I should now say I’ll be back?

I was supposed to start a journal back in October. I didn’t. But here it is now. This is not what they had in mind.

Oobladi ooblada
Yours truly, Charlie