julian calendars . . . pshaw

September 30, 2012

It’s been a couple of weeks since my last treatment ended.  Usually, I come here on the heels of the month’s treatment to comment on the noxiousness of the event relative to previous rounds—relative, for that matter, to the noxiousness of any noxious event in my life to date.

But here I am, on the verge of October, having made no comment.  Most likely I am only here now because of an irrational obeisance to Gregorian delineation—as if the up-flip of my 2012 Tolkien calendar (fabulously illustrated by Cor Blok) augurs something beyond the ever-nearing bestowment of a 2013 Tolkien calendar, as if at midnight (hopefully while I’m asleep but most likely during infinite reprisals of some Nicki Minaj chorus or another) there will be a shift in the tectonics of my essential being which will create a cataclysm in the current self thereby Wile.-E.-Coyote-ing these comments I am presently typing if I do not type them today.

Irrational.

Regardless of the reason, I am here to state, for the record and in one uncertain term, that this month’s round suhhh-uh-uhhh-uh-uhhh-uh-uhcked.

Here is a list of things that have sucked more in my days (in ascending order of suckiness):

*Appendicitis

*ACL Reconstruction Physical Therapy

*Seizures

*Brain Surgery

*Infinite reprisals of some Nicki Minaj chorus or another  

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

*When I was a baby

So there you have it—barely under the wire of September.  Just think, tomorrow you can be anything you want to be.  At midnight, the earth itself will be annihilated and will rematerialize in a split-second.  I, for one, am glad October is October because I love October.  September 30^th, meh, November 1^st, okay, but October  . . . that’s what I’m talking about.

hie me yarkward

September 6, 2012

Yesterday was the dreaded MRI.  Dreaded not for the resulting image of excrescence but for its scariness—the encapsulation and the clamor, the entombment and synthesized loop of hell-harrowed souls.

Though to be honest, the MRI misery is not as horrible as it used to be because I have finally succeeded in scoring a supply of Ativan to be taken in advance of my scans.  For years, I played the tough-guy.  I took my dose of terror with a brave face, a face that hid the mortal fear of being swallowed whole and jettisoned into space to spend my remaining pitiable days caught in a hula of meteors needing, badly, to scratch my nose.

Let me back track a bit.  “Scoring a supply of Ativan” sounds criminal; I asked my nurse-practitioner for it and she readily wrote the script.  A little humility and a little benzodiazepine go a long way in this life.

Here's an anecdote toward conveying my long-standing love for Ativan aroused by the first instance of Its usage: 

Many years ago, in a simpler time, before Twitter and Justin Beiber, when Miley was in diapers and swinging from Billy Ray’s immaculate mullet, when Pluto was a planet and the Doritos taco-shell was just a twinkle in the eye of some stoner in Portland, I suffered a bodily shut-down that would effectively end my Thanksgiving-day backyard-football career.  It was within the first year or so of my fledgling tumor and I was still learning my limitations on the fly.

After the first half of play (determined by neither time nor score but when the smokers among us felt fixin’ to die), I began to experience faintness.  As I continued, the spells worsened and I detected the aura of what, in my as yet limited experience, would likely turn into a full-on seizure.

I sat down as calmly as possible and hoped for the attack to pass.  It did not.  Panic rose.  I was frozen.  I was certain that to move would be to collapse altogether.  I managed to explain my strange behavior to my brothers and father.  A few minutes passed and I could not or would not (at some point psychology and physiology become inextricable) move.  Another few minutes and my legs and back began to ache from the squatted posture I had assumed.  My father set a chair behind me and sat with his knees to my shoulders so I could lean back (slightly, slightly) and take some pressure off.  Fifteen minutes pass.  My brothers, my mother, and my wife stood around me as we contemplated our options.  The afternoon was fading and the fall chill was intensifying.

At last, the best we came up with was to transport me inside the house on a reclining deck-chair.  With some ado and no few comments respecting their heavy load, my brothers and father carried me inside—out of the cold but still frozen in a neuromuscular showdown.

I watched television out of the corner of my and waited for my body to recover or relax or anything in the form of progress.  A friend of the family, a nurse, came over to give her opinion.  She did her best to calm my mind and massage my body but without marked success.

And so . . . last resort.  The ambulance was called.  Another couple of hours in the hospital spent apologizing for spoiling Thanksgiving dinner and virtually paralyzed.

Close to midnight, after nine hours of utter tension, I was back at the house, slouched on a comfy couch and grinning wide as the moon.

Ativan.  All hail.

Anecdote all done.

The images showed continued improvement.  My doctor (who could beat up your doctor) compared scans from this time last year with the new scans.  The tumor-mass was noticeably diminished, albeit in tiny terms.  Perhaps the most telling feature of the image was the divot from the biopsy performed a few years ago.  In all previous images, the spot was detectable but blurred by an overgrowth of tumor cells.  Yesterday, the spot was virtually black, which is to say, unclouded by the contrast-dye uptake associated with tumor matter.

At any rate, it’s all systems go for round 9.  I’ve got my smoothie card re-upped and my whining voice ready.  Hie me yarkward!

nat geo wild!

August 27, 2012

Once in a blue moon, and there’s one in a few days so let’s pretend a serendipity, I can be spotted in the wild. 

For the most part, let’s call it 90% of the time, I am homebound.  There are factors: I’m sick a lot, I’m tired a lot, I’m grumpy a lot, I’m uninspired a lot—there’s a lot of things I am a lot that are not conducive to being socially interactive a lot.

At play in all of those factors is the fact that I cannot drive.  I haven’t driven an automobile since December of last year and even then I was pushing my luck.  After the event of late December/ early January*, it was made clear that I was not to drive until July—that is, six months distant from the rash of seizures I had at that time.  July it is, then.  Six months, no bigs.  A few years back, I spent nearly as much time in bed with a pee-bottle and Garrison Keillor CDs.

Yes, July it was.  As of right now, it’s February, 2013.  And if you believe that date is set in anything more than mud then I’ve got some property in mud I’d like to sell you.  I am stuck in this seemingly limitless Pez-dispenser of future dates because I continue to have seizures.  Roughly once a month, some piddling to middling jolt will trigger that most obnoxious symptom of the betumored brain.  (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.)

Back to society, my sightings in the wild.

Jonathan-watchers have spotted me in libraries.  These reports can be invalidated if the reporter claims to have seen me borrowing books.  I borrow DVDs—movies to watch in my shameful surfeit of downtime.  I buy books.  Because I must have them.  I must.  I must hoard them and stack them and sit atop them like Scrooge McDuck sits atop his constantly avalanching mountain of gold coins.

[Sidebar:  There is a used-book store in Birmingham, 2^nd and Charles, that facilitates the ungodly Babel-tower of words now being erected beside my bed.  They frequently run devil-in-the-desert sales like: buy five fiction books (fiction’s my addiction) and get five free.  When you figure the books are already going for halfsies that’s quite a bargain for the unemployed gimp with a book fetish.]

Jonathan-watchers have spotted me in 2^nd and Charles.

Jonathan-watchers have spotted me in grocery stores.  These are my most frequent haunts.  Short-distance trips.  Carts that double as walkers for hop-a-longs and woozy-listers.  An array of peoples who, with any luck, have babies I can make faces at.

Most recently, I was seen at a church function.  Rarest sighting of all!  A verifiable photo of which goes for thousands at auction. 

In a way, all of this isolation suits me.  My temperament is headquartered in melancholy.  This may come as surprise to those who know me only in instances of hospitality or may be met with incredulity by those who have witnessed the conviviality of my bacchanal days; nonetheless, the essential aspect of my character is introversion.  I have overcome my shyness by practice.  Practicing conversation.  Practicing argument.  Practicing party-going.  Practicing hugs.

For now, though, my predisposition is paying off.  All of those times intentionally getting lost in the woods and making no haste to find my bearings, all of those times in a lamp-lit nook reading Dickens, all of these times in front of a white screen—just me and a pulsing cursor.

So, as it turns out, solitude is me in the wild, in my natural state; sadly for Jonathan-watchers, this state precludes many-a-fine sightings.  They have to sneak up on me.  Approach downwind.  Build tree-stands and scatter books of fiction on the ground.

wait and weight

[Lookie here]

August 9, 2012

An interesting development over the months:  When I began taking my chemo back in January, I was under the impression (as a novice why wouldn’t I be under impressions?) that my schedule of rounds was set, if not in stone, in fast-drying cement.  And so, I followed the schedule with all ostensibly-due rigor. 

As with all rigor, from hydrogen fusion to the best laid schemes o’ mice, mine has begun to peter.  Unlike the sun, whose progeny of elements will eventually be the death of it, and the wee beastie, whose efforts are largely stymied by more massive creatures, my rigor has not so much gone awry as follow a predictable progression from stringent to relaxed.

A couple of months back, one of my nurse practitioners informed me that it wasn’t the farness of my previous round of chemo that concerned us, it was the nearness.  That is to say, the rule of schedule is that I cannot begin a round of chemo any sooner than 28 days after the start of the previous round.  This is to allow my body and blood counts to recover sufficiently before their next affront.  (A sufficiency I aft beg to differ with.)  On the other hand, there is no set date by which I must begin my round—within reason, of course.

I’ve got to say, the leeway afforded by this laxity was mighty alluring this month.  I didn’t get my pills until yesterday (8^th) and last night it was all I could do to pull the trigger on taking my first dose.  I began to run through a variety of equations that would be optimal for minimal misery.  Athletic events made their usual case:  I’d want to be feeling well for the first round of the PGA Championship, the first preseason game of the Redskins, and the gold medal match for women’s soccer wouldn’t I?  There was an unusual occasion to consider: the wife and child will be gone all day Saturday on a jaunt to Six Flags Over Jawja which is a long time for me to groan and moan to aught but the earless walls.  (Moaning and groaning remains a rigorously attended-to feature of my monthly rounds.  I like to think of this as keeping it real.)

At the end of the day, quite literally, I decided to start the inevitable.  Sooner started, sooner ended.  And since leaving my pills in the garbage bucket where they were immediately consigned after arrival to my doorstep is frowned upon by my support-team, the inevitable was met reluctantly.  (Reluctantly—because once in a while I like to put things mildly.)

Moral-esque-ness of the story?  No matter how dearly you’d love to, you cannot go to Seven Flags Over Jawja. Nor to as many over Georgia, for that matter.

August 17, 2012

In the beginning (of my journal, not the universe—though an argument can be made for the formlessness and vacuity of these proceedings), I anticipated a sharp decline of appetite that would result in weight-loss.  Which weight, by the way, would not be missed upon its disappearance.  

As it turns out, the yarkiness doesn’t really suppress my appetite.  Not in general.  Despite a net-diminishment since the outset of therapy, my weight has been making a steady resurgence in the last few months.  (At the outset, I clocked in at over two bills.  After two or three months, I was oscillating in the lower buck-nineties.  Today, the old digital read-out claims 198—though in all fairness to me, I had to have my glasses on to see the scale.  So let’s say somewhere in the upper thousandths of a bill-ninety-seven.)

First, let me confess.  I have recently become addicted to soda-pop.  Mostly Cola-d but sometimes Peppered—always empty-caloried.  Add this intake to chemo-week, smoothie consumption and we’re scarcely surprised by the re-piling of pounds.

But there’s more to it.  A phenomenon less damning of my will.  Back to the suppression of appetite.  I expected food, up and down its pyramid diagram, to be of equal repugnance.  To revolt my gullet summarily.  This has not been so.  So has been this: certain foods (and for some reason green salads top the list) make me gag a bit to even think of during chemo-week much less partake of.  Others (and for some reason grease-sopped cheese-burgers top this list) are wildly delicious—craved and consumed with relish. And mustard.

As any weight-watching points-counter could tell me, the numbers are against me.  Compound the problem with a largely sedentary lifestyle and I must either take charge of my wayward appetite or face my amassment of flesh with abandon.  And French-fries.

not anymore

August 2, 2012

I have my very own core-strengthening/ balance-training outsized bouncy ball.  I have my very own stretchy, flat-snaky resistance bands.  I have my very own tailor-made exercise program printed-out on stapled paper.  What I do not have is a physical therapist.  Not anymore.

Yesterday was my last day of physical therapy.  I didn’t so much graduate as I did hop from a plane with the above-mentioned tools for a parachute.

For seven months, three weeks out of four, twice a week, I readied myself for what often would be my only outing for the week.  It was as if I was a member of society, of a social club, if nothing else.  I had to do things like tame my beard on occasion and take care not to be wearing on Wednesday what I had been wearing on Monday.  Not anymore.

Granted, because of the relative success of my PT over the past 7 months, I am capable of getting out more often than I was, say, in January or February or March and so on due my steadily increasing mobility.  When I started therapy, I could not operate my ankle to move my foot up and down—muscular weakness and a disconnected neurology to blame.  I could not flex my left calf; it just flubbed about at the behest of gravity all volitional efforts be damned.  My general gait so exactly matched the disinterred zombies in Michael Jackson’s Thriller video (before, of course, they break into that death-defying, much imitated, never duplicated dance) that children watched in horror if ever they saw me in the light of day.

Now I can move my foot.  I can think of doing so and do it—piercing the brain-fog long enough to make demands of my pathetic physiology.  Now my left calf resembles more a left calf than a distended rooster wattle.  Now my hip and knee flexion is more Jim Nabors as Gomer Pyle in the Marine Corps and less Peter Boyle as young Frankenstein’s lumbering fiend.

I will miss the encouragement and admonishment of my therapist, Heather.  She is among that rare class of people who genuinely care for the well-being of others.  She cared enough to keep me on after my insurance decided I was done.  She cared enough to call if I missed a session to make sure I was okay.  She cared enough to make me wonder if I care enough.  Am I as concerned with my health as I should be?  Am I as concerned with the health of others as I should be?  Is life good enough to be well for it?  Beyond keeping up with my at-home exercise program, I hope I can keep up with my at-therapy, self-evaluation program.

I will also miss that angled trampoline against which one gets to throw weighted balls.  Of those, I do not have my very own.

there's that and there's this

July 15, 2012

The yarkiness lingered for an eighth day this round—a depressing little day it was.  Gone, it would seem, are the predictable yarks.  What’s interesting about the last couple days of chemical duress is that for all of their milder symptoms they are not more mildly annoying.  After five or six days of irrepressible sickness, you would think two or three days of lingering gripes would come as a relief to the bothered body.  And physically, it does.  The body feels its health encroaching like a slow tide to a parched shore.  The body reassembles its vitality like a storm-downed satellite reacquires its signal.  Yes, 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.

So now, today, 48 hours clear of my last real complaint, the body once again tells my mind that it told me so.  And I am glad for being wrong in this case.  In this case, I say, because I yield reluctantly, because I already know, know for certain something my body cannot yet know.  Next time will be the killer.  Next time I will not recover.  Just let’s wait and see you obdurate scaffold of bone, you importunate tangle of arteries, you pig-headed labyrinth of entrails.  Just let’s wait and see.

So  . . . there’s that and there’s this:

Rounds 7 and 8, July and August, the dog days of summer rounds, are being brought to you by the good people at Tropical Smoothie.  That’s right . . . a sponsorship.  Thanks in large part to the unrivalled sociability of the ever-considerate Andrea Powell (I do not have her permission to name her in this blog, I’m sure she’d rather her benefactoring to proceed in graceful anonymity; but this is me shooting first, apologizing later) who struck up a conversation with the owner of my local smoothie joint one day while having lunch with her equally generous husband, Kevin (oops, that was a misfire, sorry Kevin).  At some point in the conversation, she brought-up my situation and how on chemo-days my smoothie-sipping hour is greatly anticipated and often the only symptom-relief I’ll have all day.  (I believe I have mentioned this in my journal before.  If not, it’s true—deliciousness deliquesces distemper.)

Whether the owner was moved by my story or Andrea’s gregariousness or both, I’m not sure, I wasn’t there.  I am sure that my friend secured a 10-day supply (two-months) of smoothies in the form of a gift card.  As you may or may not know, smoothies don’t come none cheap so I count this one of those proverbial blessings.

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

for tommy and gina, keep rockin'

July 3, 2012

In the immortal words of the venerable Jon Bon Jovi: “Whoa! we’re halfway thay-yer!”

Six months down, six to go.  

My MRI yesterday showed continued progress.  If I say a “modicum” of progress, you won’t think me too pessimistic will you?  The problem with my flavor of tumor (oligodendroglioma) is (as I’ve said before but not like this) that it is a chameleo-contortionist.  By “chameleo-contortionist” I obviously do not mean that it lacks the ability to make-up terms in the blink of an eye.   I mean that the tumor is both gray and noodly—it mimics its host in both form and color so it is difficult to calculate its surface area.  There are distinctions, yes.  Mostly visible to the trained-eye.  The MRI contrast dye is useful in lightening the tumor as a few minutes heat will begin to make ashen the charcoal briquette.  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.

In addition to the chameleo-contortionality of the tumor itself, there is another gray area in the gray area that is the gray area of surface area.  Scars.  From my brain-burn.  Radiation left its mark.  What looks like (indistinguishably, I gather) tumor also looks like scarred tissue which means , in theory, some of what appears to be tumor on the scans could be scarring.  So, in theory, I’m relieved.  In practice . . . well . . . I could do without either.

Nonetheless . . . progress—jot, tittle, or not—it’s all I’ve got.  And as the venerable wisdom prescribes:

“We gotta hold on to what we’ve got ” yea, even “hold on, ready or not” for verily “you live for the fight when it’s all that you’ve got” so dearly beloved, believe me when I say unto you . . . [skin-cinching, hair-prickling key-change] “WHOA, WE’RE HALFWAY THAY-YER!”