Letters To Glio

chazzw

16 March 2012

Another MRI today. They’re getting to know me. Really no change since the last one. No news is good news. Time marches on, but for me it seems to have stood still. Sometimes I imagine that when time starts up  again it will accelerate rapidly. There’s only so much time allocated for each of us, though we don’t know just how much that is. And when our time runs out, it’s done. Time will then truly stand still.

My scans remain steady, minor changes here or there but overall the picture – it really is a picture – is no worse from one scan to the next. It’s a holding pattern, like an arm wrestling match whereby one combatant can’t get the best of the other. A stalemate, a draw. One day at a time doesn’t quite catch the roller-coaster of drama, tension and relief. My life is lived in big gulps of 60-days.

So here’s to another big gulp before the glass is empty.

13 January 2012

My MRI showed mixed results: Not as good as the last time, but better than the time before that. Simply put, they can’t really read these things very well, which is one reason why they always ask “How are you feeling?” and perform a series of manual dexterity tests. They treat the patient they say, not the tests. Comforting? Not exactly.

06 January 2012

Had my bi-monthly treatment yesterday. No problems. At work this week I did fall up the stairs (my balance sux). Falling up the stairs is vastly preferable to falling down the stairs. Next Friday, another MRI.

24 December 2011

After quadrupling my Lisinopril dosage, it appears my high blood pressure (a side-effect) is finally under control.

18 November 2011

MRI today and the results were good. Major shrinkage in the new tumor. Mr. Head lives to fight another day. On the other hand I’m still in the High Blood Pressure Stage 1 range.

12 November 2011

Mr. Head Reports:

My 4th visit was yesterday. They don’t like the way my blood pressure is slightly elevated, so I’ve been prescribed a little pill to keep that in check. I’ve been hoping to avoid the vortex of side effects. Take this for that. This causes that. Take this for that. This causes that. And the little grasshopper picked up another little grain of sand. 

15 October 2011

Mr. Head Reports:

Yesterday I had my second Avastin treatment. I have no apparent ill-effects from the infusions. After a third round on the 28th and another on November 11th I’ll be going back through the Tunnel of Love for yet another MRI [oh oh oh it’s mag-neeeh-tic]. This will be to see what size the new visitor (Brazil Nut) to my left medial occipital lobe has become. The former guest (Acorn) in my left medial temporal lobe seems to have vacated the premises, leaving a bit of a mess, unpaid bills. If that squatter had signed a lease agreement she would have been liable for forfeiture of her security deposit.

24 September 2011

Mr. Head Reports:

I had my Lahey MRI yesterday and it confirmed that the new “mass” can now be called a tumor. It has doubled in size the last 3 weeks. New treatment plan calls for Avastin infusion at the clinic every 2 weeks. They’ll call me on Monday to set up a consult with this group (a different team – hospital politics) and a treatment schedule. This may or may not include Temodar in conjunction. Survival rate: 10 months. I suspect I’ll beat that, but if you’re living a life with terms like “survival rate” and “Quality of life” and “beating the odds”, then you’re in deep shit.

And let’s not forget “losing battle”. But Life itself is a losing battle anyway.

2 September 2011

Well I “officially” moved my future neurology care to the Lahey Clinic. I saw the Neurologist today and he reviewed my history and the May and August scans. He’s not convinced that we need to do anything at the moment, but would like an MRI done (with a new twist – too technical to go into). It may be a new tumor, and it may not be – it may be a series of brain farts related to the x-ray damage. At any rate, he wants to see what kind of progression this new “mass” (BIDMC term) makes – if any. The BIDMC people were all set to start filling me up with that poison again.

I know this much – if the disease don’t getcha’ then the cure will. There’s never been a doubt about that. So back on the 23d for another MRI.

1 September 2011

Notes on Mr. Head:

MR HEAD W AND W/O CONTRAST AT 1120 HOURS (Report)
BETH ISRAEL DEACONESS MEDICAL CENTER
Department of Radiology
WENDELL,CHARLES D M 66 (03/02/1945) 234-33-92
BARRON,LORETTA M. OP AUG 08,2011 10:28 A
MR HEAD W W/O CONTRAST Clip # 579-7491
Reason: rule out progression or new lesionsContrast: MAGNEVIST Amt: 17
66 year old man with left parietal glioblastoma, s/p resection, radiation and
chemo
rule out progression or new lesions
No contraindications for IV contrast
______________________________________________________________________________
FINAL REPORT
MR HEAD WITHOUT AND WITH CONTRAST, 08/08/2011HISTORY: Left parietal glioblastoma status post resection, radiation, and
chemotherapy.Sagittal and axial T1-weighted FLAIR imaging were performed. After
administration of 17 mL of Magnevist intravenous contrast, axial imaging was
performed with gradient echo, FLAIR, long TR, long TE fast spin echo,
diffusion technique, and T1 FLAIR. Sagittal MP-RAGE imaging was performed and
reformatted into axial and coronal orientations. Comparison to prior brain MR
studies of 05/04/200 and 01/28/2011 as well as 10/20/2010.FINDINGS: Again seen are postoperative changes in the left parietal and
frontal lobes with extensive white matter high-signal intensity on FLAIR,
presumably related to prior tumor, surgery, and radiation. This area appears
unchanged since the 05/04/2011 examination, and the earlier MR studies listed
above. However, there has been gradual enlargement of the region of
hyperintensity in the left medial temporal lobe, although this appears stable
since the May examination. New since the May examination is a focus of
hyperintensity on FLAIR images in the left medial occipital lobe. This area
enhances after contrast administration. The coronal images demonstrate the
abnormality to extend from the subcortical white matter to the surface of the
occipital horn of the left lateral ventricle. Given the history of
glioblastoma, this is worrisome for another tumor focus. However, a similar
finding could be produced by a treatment effect, particularly if there has
been radiation. Of note, the area is barely detectable on diffusion-weighted
images, and demonstrates no evidence of slow diffusion on the mean diffusivity
maps.CONCLUSION: New focus of enhancement and FLAIR hyperintensity in the left
medial occipital lobe. This is worrisome for tumor progression, although
treatment effect could present a similar appearance. Careful followup, and
perhaps perfusion imaging are recommended.DR. DAVID B. HACKNEY
Approved: MON AUG 8,2011 8:26 PM

31 August 2011

“I had a consult scheduled Tuesday with the Lahey Radiologist and he had nothing to consult on. No MRI’s. Just a 2-page assessment from the BIDMC Radiologist. What do I need to do to get my MRI’s?”

“Let me check [click, click, click]..they were ordered. They didn’t get them?”

“No, they did not. I have another team consult scheduled for Friday.”

“Where do you want them sent?”

“To my residence”

“I’ll have them sent out overnite”

we’ll see

30 August 2011

I had a brief consult with the radiologist today (at the Lahey Clinic). I say brief because he had virtually nothing from BIDMC. Another failure to play nice. I’ve had it with them. I’ll throw my lot in with the Clinic. Which means I’ll probably have to go in and ask for a CD of all my many MRI’s. I had thought that would be part of what Beth Israel would have sent over, but no. On the one hand, the radiologist mentioned something about my previous radiation which has the possibility of being the cause of what may be appearing on the recent MRI. On the other hand, he hasn’t seen the recent MRI’s. But it is interesting that he mentioned a possible byproduct of my early January 2009 treatment that BIDMC never even mentioned.

Plus, I was on hold for 27-minutes last night in attempting to get my chemo prescription filled. Now I’m not even going to get it filled. I’ll wait to see what will be my brand new team at Lahey says about the next steps. I’ll just start over with them.

9 August 2011

When my previous oncologist left her position for a better one in Rhode Island, I was assigned another one. Who I had never seen until yesterday. The NP saw something on the MRI that she “couldn’t interpret”, and had him come in. First time I’d ever layed eyes on the man. Well, seems Glio has invited her brother Toma over for a spell.

I don’t like the place he’s shown up. The word “operation” never even came up. Maybe it’s inoperable, I don’t know yet. On the other hand, maybe I’m overreacting. They’re gathering my radiology reports from the Lahey clinic (I opted to do the radiation there since it’s a great facility and it’s convenient for me). Much more convenient than going into Boston for radiation. They’re talking about the possibility of another round of radiation and chemo (the same regimen I had last time) since “I tolerated it” so well. I didn’t tolerate shit..

I didn’t quite make it to three years (a little over two months shy). I’ll have to go back in after they assess exactly where the radiation hit last time. This has something to do with how they’d approach the little white spot this time.

Fuck!

6 August 2011

Me and the Doc will be looking for you on Monday, G. Hide away somewheres, will ‘ya?

4 May 2011

It’s been another three months, and my brain still looks to be normal. Mostly. My RN was not pleased that I had stopped my daily anti-seizure meds cold turkey, but I’ve never had a seizure in the first place (in my opinion). I wanted to see if stopping would help with my balance issue. It doesn’t seem to hae, but the less crap you put in your body, the better off you are. Just sayin’.

29 January 2011

Yesterday was my three-month checkup and there has been no change. I wanted to ask if I’m defying the odds yet, but thought better of it. All is good except my balance still is terrible, especially moving from a prone position. Getting out of bed in the morning, I look like a drunk for a few seconds. After that things are ok, more or less, although I walk like a pigeon-toed sloth. If I were to give myself a pass-fail for all the neurological tests they give me after my exams, I’d pass everything except the one-foot-in-front-of-the-other test, which I would fail. No officer, I haven’t touched a drop.

We looked the meds up on-line (a generic Keppra): Levetiracetam. And there’s a fairly low percentage of balance issues with it. But even more with the alternatives.  I’ve already had my dosage reduced once, to no ill or any other effect. Really, I’d like to quit the drug altogether. If my original “seizure” was caused by a swelling in the brain due to the tumor, then why not quit the drug altogether? Seems to me the drug won’t prevent a return of the tumor, so won’t prevent swelling (if it got that far) so would not prevent a “seizure”.

I’m half of a mind (heh-heh) to quit it on my own. If I wasn’t still working and driving, then I would.

So, next visit: April. The cruelest month.

20 October 2010

Had a visit and an MRI. Everything still stable. My visits are now reduced to every 3-months! Aside from my right hand issues, there only remains the matter of my balance. Getting up from sitting or a prone position requires a few seconds of stabilization. And my balance is not great. I’m not sure if I’ll ever get back into running again. That is a bit depressing.

27 July 2010

NO MO’ CHEMO! I’m DONE with that shit! Whooo-hooo. And Whoo-hooo again!

CNS: GLIOBLASTOMA MULTIFORME As seen here by m...

Close to what my tumor looked like before surgery

13 June 2010

Dear Glio:

If you can believe it…I’m reading a book, a quite interesting book, that I had brought to the clinic yesterday to fill my wait time. I was taken completely by surprise by the following passage, because I had no idea this would crop up. Or you would crop up. Or one of your sisters would crop up in a work of fiction. But there it was. Out of the blue, and “it stoned me to my soul” as Van has said.

There I am, reading this before my visit with you (via MRI). The book: In Free Fall by Juli Zeh. The passage: Page 141. An investigating Superintendent has been diagnosed with cancer and given maybe two weeks to live. Longer if he’s lucky:

The following week the detective was shoved into a scanner like a loaf of bread into the oven, so that magnetic fields could throw the atomic nuclei in his head out of balance…[later] the doctor told him about the secret subtenant in his head. Name: Glioblastoma multiforme. Age: definitely a few months, perhaps even several years. Size: 3.5 centimeters. Place of birth: the frontal lobe, a little left of center. Function: causing memory loss, chronic headaches, and a loosening grip on reality.

The detective goes on to say that, he’s so fascinated by the scans that he’s considered getting them framed. I admit that I have as well. At a certain angle, the scan appears as the shell of a horseshoe crab.

Glioblastoma multiforme sounded like a rare tree or a deformed insect, so he gave his subtenant a new name: ovem avis – bird’s egg.

You were the size of a small pecan (since shrunken to a smudge on the scans). Residual damage:  the ring and pinky fingers of my right hand are constantly numb and tingly (my piano playing days are over). I named you Glio (rhymes with Cleo). You haven’t kill;ed me yet.

11 June 2010

Hey, G!

I was supposed to have you scoped out today, but the admins kinda screwed up. When I finally called, to see what was up , there was no  more MRI time today so they gave me a time tomorrow. Saturday afternoon. Jaysus! A brain scan  on the weekend? That’s just wrong.

So there ‘ya go. See ‘ya tomorrow. We gotta quit meeting like this, huh?

You do know that after July, we won’t be seeing each other as often. How can I say this? It won’t break my heart that we’ll be drifting apart.

8 May 2010

Glio-

On Friday, we had another clinic visit. Checking the vitals and all that. No MRI this time – that’ll be next month. But the real news is that I have only three more chemo cycles. I’m done in July. Oh, we won’t be strangers, I’ll continue to have MRI’s every other month for awhile. Even that may be cut back at some point.

So I won’t forget about ‘ya. But I’d have no problem is you forgot about me. All things being equal, no offense.

10 April 2010

Well, G…it seems you’re still among the missing. No sign of you. Gone. Kaput. But are you just hiding? Come out, come out wherever you are? Or maybe you really have been zapped dead. Finito. August will be the last round of chemo for you. After that, every other month will be picture taking time. After awhile even that will be reduced. After all, it the disease don’t kill ‘ya, the treatment probably will – eventually. Maybe it’s not about surviving the disease, but about surviving the treatment.

9 April 2010

Hey, G! After lunch today, we…we…HA!. They (the MRI staff and Big Bertha) will be probing the ole cranium in another edition of Where’s Waldo? – or in this case, Where’s Glio? To win the game, you have to hide, ok? Shrivel up, you little pea! Like George Costanza in the pool. It’s all about the shrinkage.

22 February 2010

Funny thing about the Reading Life. You’ll be going along, reading an entertaining book, no earth shattering philosophy, no deep thoughts, just good, engaging story-telling. And wham! A cold hand on your shoulder.

I was just finishing up William Boyd’s Ordinary Thunderstorms. I’m 24 pages from the end. A second tier character has been operated on. Rich man, though he’s just lost most of his fortune. Throughout the book he’s been substituting one word for another in a sentence here or there. Without realizing, until it’s pointed out to him. Puts it down to just a slip of the tongue.

Well, turns out he had a brain tumor. Ingram (the formerly rich man) is being visited in hospital by his accountant, Lachlam, who inquires if he’s had a final diagnosis:

“Did he give you a final diagnosis?”

“Glioblastoma multiforme,” Ingram pronounced the words carefully. “I think that’s what he said.”

“Ah…yes…Hmmmmm. Oh, dear…Yes…”

“You’re wonderfully reassuring, Lachlan. Mr. Shah said he wanted to wait for more biopsy results before he confirmed. But that was his provisional judgement.”

“It’s definitely something you don’t want to get, old son, is all I’ll say. Very nasty.”

“Well, I seem to have got it, by all accounts. I don’t have much choice.”

“Yes, I suppose so/”

“You’re my doctor, Lachlan – what’s your prognosis?”

Lachlan sipped his whiskey, thinking, sucking his teeth.

“Well…If you follow the usual pattern you’ll probably be dead in three months. Don’t give up all hope, though. Ten per cent of glioblastoma multiforme sufferers experience remission – some have lived five years. Who can say? You might be the exception. You might prove medical science wrong: live a long, fulfilled life. It is a rare and virulent cancer, though.” Lachlan reached forward and patted his hand. “Exceptionally. Still, I’ll put my money on you, Ingram. At least five years.”

Glio: not only are you a dreaded disease, but you are a literary device as well! Must be why your surname is “multiforme, eh?

21 January 2010

Ninety days, huh? Just a conincidence. Need to jot down here a quote from J.G. Ballard:

Chemotherapy was like continually eating bad oysters

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!)

P1000010

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.horscrab

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.fencing

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.

trepanation_crown_trepan

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:mitten

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?leech

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

Advertisements

13 responses to “Letters To Glio

  1. PatD

    I like this idea, Charlie. I’m sure you know it’s good therapy… for all of us.

  2. Judith Spencer

    Charlie, I am a friend of Pat’s….she shared this site with me because I have heard so many good things about you through her.

    I lost my 46 year old only child (son) last Friday to numerous strokes…when he was ten years old, he was not supposed to live past 6 months, if that, of experimental chemo and surgery for stage 4 Hodgkins, which obviously he did but with a time capsule in his head that resulted in last Friday, the worst day of my life.

    If you’d care to, feel free to write me. Good…or bad…things can come fron situations we find ourselves a part of…I’m hoping for those things to be good for you.

    Judith Spencer

  3. chazzw

    Thanks, Pat. I’ve found out that nurses are the best people in the world. I mean that. Docs are ok, too….but nurses? I gotta tell ‘ya…

  4. chazzw

    Judith, I am SO sorry. I can’t imagine how hard your loss was for you. I only know that the very worst moment in all of this for me was when I had to tell my father. He cried. Only the second time I had ever seen this. The first was when he got news that his mother had died. Parents should not lose their children, he said.

    And it’s true. That’s not the natural order of things.

  5. Kat Warren

    You’re a brave man, Charlie; and these “Letters to Glio” are lessons for me.

  6. Pingback: In Free Fall ~ Juli Zeh « Chazz W

  7. Congratulations on the end of chemo, Charlie. I know once you get out of the Boy Scouts they don’t give you medals for most things you get through in life — which is probably, ultimately, a good thing — but in my book you’re a hero.

  8. Oh, wow! Thanks, buddy!

  9. Linda Ryan

    Just read your blog…love the letters….thank you. And I am going to get and read Room. Keep writing Chazz this is great …and I am confident you will be writing for a very long time…see you soon.

  10. Somehow, I missed that Nov. 18th excellent update. Wonderful news, Charlie.

  11. PatD

    No news is good news.

  12. wydfop awrolyz nmgsqjjrc adeqsxogi qabjib fdnaaaieqok farhzwolyr gbwalorpsq rohwszjqyaz

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s