again with the goo?!

Again With the Goo?!

8/ 29/ 14

[As I’ve mentioned several times lately, I am in the process of tidying my writing for posterity and personal satisfaction -- to the extent that either are necessary. Here I’ve plucked a few kernels from my previous blog which focused on first go-round with chemo. It was interesting (sort of)  that 2012  ran approximately parallel to 2014 – experience-wise. The blog is called Swallow, Socrates – go to find now-revised poetry and redacted sentiments; go to scan for  additional kernels, stay for the ‘visuals’ pages. Unfortunately, the chronology of posts runs counter of the dates on your 2012 Calvin and Hobbes calendar.So there's scrolling to do.]

March 3, 2012

Is it odd to not to feel sick enough? I don’t feel as if I have gotten my money’s worth of chemo today because I don’t feel sick enough.

I want my chemicals to make haste.

Tomorrow, I’ll regret this bravado. Today, this trifling nausea is a waste of my time.


***

March 5, 2012

I crack my egg and see what lies beyond my ego’s goo. Beyond my goo, I see you. You with your tower of unpaid bills. You beneath the overpass, starving and cold. You in the shower, your ablution for rape, for a false shame. You serving life for the crimes of a free man. As far as I can see, I can see you.

 . . . then you’ll go through it all over again -- all of you. All of us. Trading in our minor peeves for crippling tumors now and then and sometimes swapping our fathomless pain for hilarious mirth.

It's tough luck being sick.  A once healthy self-awareness becomes self-obsession -- the ego awash with egotism. There’s not  much you can do about it.  Get your binkie and your saltines and your PowerAde, and brace yourself for a sense of solitude.  

***

3/24/ 12

I have two nieces and a nephew in Mobile for whom my zombified gait has been explained away as a hurt leg.  Better than if I was just too lazy to play freeze tag -- which would be an avuncular faux pas . . .

After witnessing a seizure, my oldest niece came to me later and asked, “So you have a hurt leg that sometimes makes your body shake?”  I smiled and said, “Yes.”

Tell kids you have a brain tumor and they imagine themselves dressed up as you for Halloween.  Tell them you have a neurological impediment to your motor functions and they imagine you’re a jerk for using words too big for them.  Tell them you have a hurt leg and at worst they’ll examine the area for boo boos and look at you skeptically before resuming their game of freeze tag.

The good thing, the great thing rather, is that kids know you will be just fine.  You’re big, you’re strong, you’re an Uncle, by golly, and best of all, you’re silly . . . just so silly.


***

April 8, 2012

My wife and I were the sole waiters in the paint-flecked waiting room.  After a few minutes we were joined by a young girl and her mother.  The girl wore the tell-tale bandanna of the cancer-bald patient.  Her face was fraught with worry and fear beyond her years.  Sallow and gaunt, she sank into a musty couch.

. . . I awaited my chance to offer the girl a smile.  Smiles, I knew, were therapeutic in their own right.  Yes, I would give her a smile.  But she never looked my way . . .
Then the door opened.  A woman entered.  I scanned her for tell tale signs of disease.  There were none.  Not quite at the lady’s heels, a dog followed.  It was obviously old—a hitch in its giddy up, wiry fur beginning to thin.  What breed of dog it was, I can’t remember  It was medium sized and cute for being ugly.
 I wouldn’t mind a cold ward now and then if there was the prospect of an ugly dog to pet.  Smiles are therapeutic. Animals make me smile.



***

Let dreams be goofy and waking life be normal and out of body sensations be anomalous. Above all, let Jonathan be sensible.

***

. . . that harrowing moment or string of moments when you find it hard to believe that the life you’re living is the life you’re living.  This can be a good feeling—a dramatic change in your circumstances for the better, be it a lottery won, or a sublime view of the ocean.  Or a bad feeling—a dramatic change in your circumstances for the worse, be it a fortune lost, or an impending tsunami.

***

My state mind does not match my state of brain.



***
. . . so I have to be vigilant.  It’s hard not to live in fear. It’s hard to play.  It’s easy to lose hope.  It’s easy not to play.

***
I am on drugs that divert my attention from anxiety, depression, despair, and the impenetrable darkness of reality to the prettiness of that butterfly over there, all float and flap, flower to flower, flying on felicitous sky.

***

6/30/ 12

Laughter, medicine-wise, doesn’t even make a great placebo.  Merriment has all the relief value of a donut without the deliciousness. Aspirin can mask a headache with the help of a frown just as well as it can with a smile.  Smile too hard and your headache will get worse; dare to laugh and the throb will turn to daggers.

***

July 3, 2012

. . . but the perimeter of the tumor is smudged into the darker grays in much the same manner as Bob Ross gently drags his brush from a cozy rock into a happy stream -- you know the difference between stone and water, but the closer you look, the more you’re not so sure.

***

July 15, 2012

The body is notoriously smarter than the mind.  The mind takes that gnawing burn in the stomach to be the clutches of satanic claws.  The mind assumes that the least wooze is the largest war ever waged on the flesh of man.

In summation of today’s post, I am still a whiny baby and I am still a fortunate man.

. . . I continue to have seizures  (Think: charley-horse combined with a tongue in the power-outlet accompanied by a fearful disembodiment and an abjection in relation to your own will.)



***

9/ 30/ 12

Here is a list of times when I’ve been more of a baby:

1) When I was a baby.


***

12/  22/ 12

Have a happier new year, everyone.  I’ve got to say, I like its chances.

in lieu of flowers . . . koi

In Lieu Of Flowers . . . Koi

8/ 19/ 14

I have a sophisticated folder of last will and wishes The folder itself is of the vanilla Manila variety,in need of TLC, is all, its original purposes in thick permanent ink -- scratched through ineffectually in school-grading red.  Honestly, I have no real idea what my folder looks  like these days; I'm just guessing that it's one of the two kinds I’m most familiar with -- pristine for finally replacing the standard, type, as the one above. Whether for shame or dilapidation, I'm sure there have been improvements to the articles concerning my demise -- at least in their spruce condition, if not in their perfect legality.

In the early of hours of preoperative procedure (Biopsy 1 ca.2007), the decaffeinated, unPop-Tarted, hours, we are called-back to an available admissions desk shortly to be joined by an understandably foot-dragging lady blowing and sipping on a piping (standard issue Styrofoam) coffee cup, her jonesing right hand jiggling the red stir straw to many feasible points of departure. The coffee was probably the dregs of yesterday's. I did not begrudge her (much) her morning beverage; although, I did envy her option.

In this fog, came the now all-too familiar rigmarole. But at the time, I was not prepared for the barrage of questions, much less delivered with a nonchalant rapidity which I found incommensurate with the matter at hand. Had I had anything to eat or drink (here I expected a McMuffin to appear from her sleeve) after midnight? Did I smoke (and here expected, could she bum one)?

In no particular order or foreseeable limit:  Allergies? History of seizure? Accept blood? Any ports, stents, catheters, prior surgery detritus, history of hurt feelings? Sexual activity? Religious preference in case God forbid . . . ? etc. etc, increasingly including words like stool and cancer, etc., etc.

Still nonchalant, she asked if I had an advance directive or a living will. She asked through the diminishing steam from her buckling cup peering over glasses a la Huck's Aunt Polly; she asked, it seemed to me, in a tone of presumptive disappointment. But it was true, we had neither such stuff on hand. She recommended remedying that fact. She stacked my admission papers -- stapling  some, clipping others -- affixed that mundane talisman to my wrist in case, God forbid, there be confusion between me (right parietal resection) and some McMurphy (frontal lobotomy) getting jumpy in the next bed.

She excused us back to the waiting area.  I stood feeling oddly ashamed for not having a living will or advance directive. They say of casinos that you should only go with what you're prepared  to lose. I walked into the brightening waiting area on my way to play blackjack with death -- lamentably unprepared to die.

I lived to procrastinate another day.

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It wasn't long before my papers and folder were in order. Proper forms have been kept current -- signed and dated by someone not in my immediate family. This is a taller order than you might think. You find out who your real / inebriate friends are come moving day; you find out who your extraordinary/ morbid friends are come signing and dating day.

After the GBM diagnosis, we've been at clinics and hospitals often enough but for forgetfulness or extenuating circumstances , it took us until recently to deliver the material to an appropriate receptor of such -- preferably one situated at a computer but I suspect any smiling person in scrubs in the proximity of your department would get the job done.

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What's value of mourning? The cost of grief? The price tag on that arrangement of lily and iris, it's beautiful, right? Whoa! not that beautiful, am I right? Anything cheaper . . . say that little crimson and white football . . . right beside you . . . looks like a piñata? Pricier? No way! Back to Target for us, Virgil. They had that one card, remember, with the sad-eyed basset hound and on the inside that said "I be so sad too." What do you mean chintzy? We'll put a gift card in it.  I don't know . . . Outback. No more than a dead man needs flowers. He was your father, you tell me.

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Ah, to be on file! Letting it be known: Keep an eye on the vitals screen and a hand on the plug. Divvy my organs and distribute them expeditiously.  Don't bury me, burn me to ashes, feel free to distribute those at your leisure with or without sentiment; conversely, carry me quick to ol' Virginny  and scatter my body there from the banks of King James River, out into the Chesapeake . . .  whatever suits you as long as you gyp the worms.

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What is the cost of bereavement after taxes? The value of tears as soon as they leave the the lot? Who keeps the change, heaven or earth, when the tab is tallied and set on your table?

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In lieu of flowers . . . cash. Antemortem, if you please, posthumously if you must. Some suggest a donation to your favorite charity in the amount of what you were willing to spend on daisies and a spray of lesser known flora. If that's the case, may I further suggest that you had your eye on the crimson and white football all the while and you were only waiting for Virgil to turn his back, and that your favorite charity is me? Against your not being comfortable with an arrangement so crass . . . we are registered at the UAB Hospital’s gift shop, Bed, Bath, and Beyond ("Beyond" department) and Target. Outback is fine; Ruth's Chris is better.

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The Penny

Imagine my shock when I discovered
The cost of koi, one lone, piebald koi
Was in the hundreds.
Did you see the look on my face
In that moment, that one, blurred moment
When I thought, In such a world I can ill-afford
To fall in the pond retrieving my wish-wasted penny.

so rare, so rare

 So Rare, So Rare

11/ 14/ 14

A day after last week's doctor's appointment, one of my NPs called to let us know that my blood platelets were low by about half -- a nearly inevitable case after chemotherapy. New rules while my platelet count rebounds (and good ones of thumb, for that matter): 1. Don't get stabbed -- platelets help stop the bleeding. 2. Don't go the ER in the case of stab wound -- the place is pernicious with cooties -- platelets are integral to the immune system's efficacy.

Luckily, lately, my cautiousness has been up by about double . . . as in doubled -up on the kitchen floor clutching your hurt back, as in double-down on your incautiousness and you'll be bound to an ER rife with airborne cooties.

Luckily, last week, my shiny burgundy four-wheel walker arrived. Believe me, for an emblem of misfortune, this gal is a beaut. She shimmers, she rolls. She has brakes on her ergonomic handles. She sports . . . wait for it . . . a  fold-down seat if pushing wheels becomes too exhausting. Under which seat . . . wait for . . . can't wait storagecompartment! Need to tote a turkey sammich? Stash! Bag of crunchy Cheetos and a fistful Oreos? Stash, stash.

8/ 12/ 14 

Sorry. It's not like me to get sidetracked.

During last Friday's Avastin infusion, the man in the chair next to me began to have an allergic reaction to some new drug he had dripping into his arm. He became alarmed and alerted the nurses, trying to explain the matter as one by one they tuned-in, recognizing the potential gravity of the situation.

I love nurses. There's a wide and well-oiled sidetrack here, but I'll trundle on.

The man said he felt on fire, he felt he was going pee himself, if he hadn't already. The nurses hurriedly attached new IV bags in an effort to reverse the new drug’s the ill-effects.  Things got worse.  A headache joined the fray. His composure began to slip. His vitals went haywire; his heart sped. The nurses hustled, communicating their expertise with calmness.

The man went blind.

As he went blind, I cannot say to what degree of severity or even truth, the blindness came on; I do not need to know exactly, but I know well enough the blended timbre of panic -- the blue-jay's worried call from branch to branch, the goose's hyperventilated hiss, the dolor of the abandoned dove, the ten-octave descant of a maniac hawk.

Crows calling for doom, sparrows for mercy.

I cannot say for sure how already dead the man thought that certainly he was as the soothing voices of the nurses became disassociated with the calmness in their faces.  However,  I can speak to death's mission accomplished as being preferred over its loitering terrors.

Dead or not --  he lived. At least throughout our acquaintance. He panicked was all. I know I would if I came-to blind.  Just to think about it makes me wish I hadn't written about it.

Rest in peace tonight, man no longer beside me, seeing and undecaying. Pills for crows, crust for sparrows.

8/ 11/ 14

Here is our lullaby . . . 

So hush now lah-lolly
Lailai lailai lah-lolly
Lah-lolly-loo

My gal will tote you
Compartment so rare
She’ll stash you then eat you
So rare, so rare

So hush now lah-lolly
Lailai lailai lah-lolly
Lah-lolly-loo

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8/ 13/ 14

I did not get sidetracked. I got tired.

To get back on track and hopefully to stay awhile . . . the depletion of platelets is inevitable in whom there has been a long-fought battle of cells, I was told as much by my team of white coats, learned as much from their complementary glossy pamphlets; and, I know as much by now.

However, I have discovered that inevitability is harder to take in stride than eventuality by ambush is to plan for. The given is taken for granted -- especially as time wears on and slowly-but-surely becomes the order of the day. The inevitable pales in your rearview, ducks out of sight; it reappears in no real hurry to catch you up,  just keeping tabs. Memento mori, it seems to wink. Memento sanguis.

"You're gonna die, Bud, and it might just be your own blood that kills you or . . .   a transfused understudy or . . . some other eventuality. But as you were told, as you learned, as you know for certain -- inevitability will catch you up and emerge from you're blind-spot -- all high beams and tooting horn.

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Wait. How did I get so already dead all of a sudden? I hate it but I'll have to backtrack.

Here I am.

There I was, considering platelets -- their betrayal, my pathetic reliance on their allegiance. Because I need roughly 100,000 parts per micro-liter more than I currently have which puts a damper on my cataract surgery hopes; then, not four paragraphs into this journal post, I got on the fast track to here. Here I am, surely going blind, no surgery in sight.
 
There I was . . .

a car on my tail, some unimpressive Latin, a meaty lecture held forth regarding what will and what might, it struck you as presumptuous but sensible enough, brief comment on platelet depletion, of all things -- a lullaby, there was uncertainty and indeed presumptuousness, a few point-of-view swaps which struck you as art for art's sake,  a strong, I mean strong, exhibition of prose poetry resonating with the music-lover and bird-enthusiast alike, there was a shout-out to nurses, description of my new walker -- its beauty and capacity, the man beside me in the in the infusion room who went from afire to wet to blind before I could catch-up with the plot on Divorce Court . . .

Here I am again. Practically dead to hear me talk. Virtually living the life opaque.

The Go or No Option

i spy with my little eye something but barely

I Spy With My Little Eye Something But Barely

8/ 4/ 14

Today . . . MRI, labs, doctor . . . as scheduled. The plan . . . chemo no more, Avastin three more, back to 4 mg of steroid up from 2mg, some new arrangement of MRIs, labs, and doctor visits.  And then back to Great Monitoring Project in which I am perennially engaged ; although I’d prefer an engagement with a great monitor lizard. Poisonous-ness moot.

8/ 5/ 14

For the first time ever, as I always do, it seemed I did my research online, this time on the déjà vu phenomenon -- a phenomenon I am familiar with, these days, or at least was cognizant of in days gone by.

As I suspected, there is a link between Google and the answers I sought; more to the purpose, a link between brain diseases and déjà vu.

I’ve been walking under clouds of diaphanous recall -- vast clouds -- not the sort of cloud one walks under and catches a drizzle-drop on the ear --vast clouds -- the sort of cloud that burgeons, darkens, threatens but never culminates in storm. Déjà vu clouds. Recall with no purpose, recall with no end.

Lately, I’ve been walking through not just under these clouds -- diaphanous clouds, a sight barely seen, sheer yet clearly bulging with ado about the surreal. My disease walks me under and through these accumulations of faux import at every fifth or sixth turn, it seemed. Fascinating, no doubt, but for my part, give me Edna waking or scootching tiles any day. Hallucinations are bogus . . . illusory images born of suggestions from the real world -- creepy but actual. That is to say, when hallucinating, I am actually seeing what I’m seeing, out joint with my personal understanding of dynamics, sure, but not out-of-bounds in terms of possibility, or even what I take to be rational.

I know about movement and I recognize it when I see it . . .  in hummingbirds, in Janjiis. I know about cause and effect . . . in theory, in practice. I know about perception . . . its reliance on synapses, its relation to pre- existing cognitive footholds.

However, I am infinitely  nonplussed by déjà vu. Is it a realm with amorphous borders that one walks into  benightedly like into an child's very recent divestment of pee in the shallow end at the Y?

Is it a time?  A multidimensional, non-delineated, omni-absence situated neverywhere? If so . . . will it consume me, can I escape it's event horizon? To shake it off will I need a DeLorean? A musty wardrobe?

Could it be I took left when I should have taken a right?

A right into family in front of the TV watching, as ever, brand new houses being rejuvenated or laughing at last night's Letterman on the DVR.  A left into family in front of the TV, as forever and forevermore, watching Leno (it can't be) and laughing (nope no way, not on my watch!); a right to arrive at a corridor
of glass conjoining the parking deck and the clinic proper.

A left, to arrive at a corridor's glass, my corridor, my glass and its view of my town and its populace hastening to a dream I had just now about smudged handprints, about cars and what all they're missing down there, and the warmth in diagonal sun-rays.  That one ray I'm always drawn to, drawn into just now, only to emerge mid-turn, at a corridor (mine or that dude's in the wheelchair shimmying towards the sun, watching the town as one might a cloud he expects to dissipate anytime now or then . . . whichever when turns him (us?) loose.

Nope, you can keep the voodoo confabulations; I’ll take my too-tall man and periphery faeries.

After the great seizure event of 2012, I needed to have physical therapy to learn how to walk again which included balance exercises one of which involved standing upright on a ball  with a rubber ring around it for my feet.  Once situated and balanced, my therapist would lightly prod my back and shoulders to test my stability -- she called these prods “perturbations” and I instantly fell in love with the term as it related my improvement, and eventually I fell in love with the notion -- remembrance as a function of re-learning, or memory as a light-speed portal to the past or even, speculatively speaking, to the future or an unmoving now. The stuff of déjà vu and old pictures.


Perturbations in Photograph

I am the ghost of the child who is

In sepia tones unwrapping gifts
Beside his young-again mother

Tiny against the Alamo
Blue-striped socks hiked knee-high

The trailing of the two climbers
Halfway up the blazing white hill

In tuxedo tails bearing a ring
Bashful beside the flower girl

Horrified in the batter’s box
Jealous of Danny’s base-on-balls

A friend among celebrant friends
On some auspicious day or other

Hunched-over the gray cul-de-sac
Astride a gravelly football

The monkey topsy-turvy
Deep in the lead-based jungle-gym

I am the man of the ghost who was
The specter of double exposure

Angel in vigil for bone-dust dogs.

and just like that

And Just Like That

7/ 28/ 14

Upon the Lapse of My CPR Certification 


And just like that, I’m sure to crack your ribs,
To leave you short of breath
Both now and later.

I’ll suck instead and puff, implode your chest,
Flatten your heart and lungs
While bystanders expect better of me.

It’s probably for the best; they change the rules
A lot—add compressions,
Subtract respirations, hone-in

On infant pressure points.  The Heimlich
Is the same as ever—squeeze
The bejeesus out of the wide-eyed,

Asphyxiant; still, the bystanders expect an expert
Launch, a near-comic vector to feel safe
With their own maraschinos and steaks.

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And just like that my wife, Adrienne, hitherto a superbly qualified caretaker in matters of my oligodendroglioma (seizures, for instance -- easing me into the terror, calming me throughout,easing me out of the terror. During aftershocks and persistent tremors . . . abiding, patient, faithful with a cool rag and quick to dim lights), got promoted to GBM responsibilities without corresponding compensation. What she lost in bargain . . . a sous chef with a decade of experience, a fair-to-middlin house-cleaner, a hoister who knew to bend at the knees, a co-converser specializing in articulation and audibility . . . the list goes on but I’m already blushing. Yep, what a guy I was yesteryears when our only worries were my drinking, my gambling, my intermittent ability to keep Hamburger Helper on the table . . . oh and my oligodendroglioma. Yes, a regular, regularly neck-bearded, gentleman.

Hello, my name is Jonathan, and yesteryears, I was a liability.

Hi, Jonathan.

[whisper from the chips and dip] Poor SOB, don’t he know . . . once a liability, always a liability . . . [crunch-dip-fingerlick-crunch-dip-fingerlick-thumblick-smack]

[whisper from the chips] Poor SOBs don’t know they’re almost out of dip [finger-swipe-suck] yessir, that’s liable to do it.

Let there be no mistake about it, she is the sacrificer-in-chief. When I get tired, I take a nap. When she gets tired, she goes about her business baking pies, knitting baby otter sweaters, watering foliage . . . honestly, I don’t know, I’M taking a nap. She is the contributor-at-large -- making the bacon, bringing home the bacon, cooking the bacon as God intended (who would I be to argue?) -- floppy in the middle with a  minimum yet absolutely necessary salty crispiness along the way to fatty, practically raw lobes at the end of each dripping slice.

She is CFO. She keeps the ledger, the receipts, the positive outlook; I keep the smile upside down.

She is the COO and I require increasingly cumbersome move-about machines. Bear in mind that someone needing move-about machines in the first place is usually not fit to assist with their  most cumbersome aspects -- their stowage and assemblage and general moving-about of the move-about machines.

Of course, I am CEO. I wear the pajama pants in this family.

Beyond my dependency, there’s that of the teenager who needs rides hither and yon, and just like that, thither and back. To places like death-defying locales to climb mossy rocks with teenaged friends and then, on the spur of of the moment, to an alternate locale at the request-via-text of a girl whose own mother does not want drive so far as all that, could they re-route mallward to loiter among random punks. ;), give momma a chance to rest ;p?

She, Adrienne, I mean, (I have no real idea what tired momma does in her spare time but I suspect she  has an impressive cache of toenail polish and is running perilously low on cotton balls, could her daughter stop by Walgreens on the way home?) is my pinch-voice when pills run low and Walgreens needs to be made aware, my designated distributor of pills into their respective cases, and my search captain when the time comes, as it invariably does, to comb through the carpet in an effort to recover invariably camouflaged pills.

So here I am, in the nictatation of a frog’s eye, before you can “say mallward to loiter”, just like that, feeling (in some far less ridiculous ratio, of course) like this:


On the Intergalactic Distribution of Talents

Light echoes star to star.
Time groans deeply in worm-
Holes like a tuba.
Five years to tie my first laces.

Hydrogen huddles and breaks
Into everything.  Particles fox-
Trot, waltz and tango.
Six months and I manage a two-step.

Perennial Maypole of spiraling
Suns. Earth wobbles but never
Falls Down.
Yet my jogging days are over.