Wednesday, September 14, 2011

Hillbilly Handfishin' and Some Good News for Kate! Woo Hoo!

Kate, 9.13.2011, "Waiting to hear..."

Good news for the McRae family and their many friends and supporters (We're everywhere!):  Daughter Kate's MRI yesterday was unchanged from the one in July.  Her mom Holly explains in her journal post on CaringBridge how difficult it is to plan treatment in this type of cancer after remission.  They've decided to continue her current chemo regimen for a year, contingent on continued good scan results.  Her next scheduled scan is in November.

Her father Aaron tweeted yesterday, as they faced the anxious period of waiting for results:

Hoping  and I can watch another episode of 
'Hillbilly Handfishin' to distract ourselves tonight!

Say it ain't so, Aaron and Holly, say it ain't so!

This whole family is on a journey and so here's a shout out to Kate's Most Excellent Siblings -- Olivia and Will.  Maybe the three of you can influence your parents' television choices?!  As always, Kate, you are very special and much loved by everyone here at The Manor.  Keep up the great work in school and at therapy.  I so much admire your good attitude, too, about chemo and all the testing, appointments and stuff.  My dear friends Captain Haddock and La Bonne et Belle Bianca Castafiore are also big fans of you and your family, and want to send along their best wishes.  The Captain is thinking of naming his next miniature pink submarine The McRae, and Bianca loves to sing "Little Light" in the shower...

Uploaded to YouTube by Brian Wurzell on Jul 12, 2009
This song was written by Audrey Assad, a Nashville Singer-Songwriter, during an online Global Night of Prayer for Kate McRae. The lyrics came in one pass that night and the chords/melody came the following morning.

 Little Light

(Audrey Assad)
                                                                                                                                                 Look at all the angels watching you
They’re singing songs that we have never heard
Their voices ring like bells over the mountains
Oh, if only we could hear their words

God is near, little girl.
                                                                                                                                             Your eyes are brilliant, deep sky blue.
Your quiet wisdom is an evening song.
The angels must be breathless at your beauty
Like the world catches its breath before the dawn.

God is near, little one.
                                                                                                                                             And Jesus bends to hear you breathe;
His tender hands are holding you tonight.
His heart is ravished when you look at Him,
and oh, the endless mercy in His eyes;

God is here, little light.

Tuesday, September 13, 2011

a nod is as good as a wink

I have glaucoma that is advancing kind of fast -- and now cataracts in each eye -- so there are some unanticipated difficulties in day to day blog maintenance.  You may have noticed some odd things going on, font-wise, for instance!  Bizarre spacing strategies.  More than a few instances of original spellings!  After hours of messing around with formats and styles this morning, in a vain attempt to avoid doing anything of real consequence, I have hit on this font style as being easiest on the old eyeballs.  Even though a couple of people suggested color changes as well, probably because I've put together a pretty boring scheme, I am keeping a basic stark dark-on-white.  Still, the white background is a problem.  White and light are both my biggest visual challenges, really, and they only become more troublesome as the day progresses.  By the time I pack it in, usually in the wee hours, my vision fairly throbs from all the brightness.

I have built-in strobe!

For some reason, my ophthalmologist refuses to entertain any discussion of removing the cataracts.  You probably wouldn't believe me capable of tolerating obtuse and deflecting responses to my health questions, but you'd be surprised how fear can still the tongue.

The oft-mentioned MDVIP Go-To-Guy, a true Godsend, finally deciphered my frequent whine about the eye doctor, finally figured out how scary I find this ongoing loss of vision, and suggested a new specialist.

This change is not at all like yesterday's defection to a new cardiologist.  My former Heart Dude was and is simply outstanding;  It was his hospital affiliation that spooked me, not him.

Where does this guilt at changing doctors come from?  Why do I care what my ophthalmologist thinks of me, if he even does?  It's ridiculous, this ego-driven world view of mine.  We simply don't communicate well.

No, that's not true!

He ignores my complaints and will either talk over my questions or answer them with sarcasm that I just don't get.  Before every appointment, and Good Lord there have been enough of them, I would sternly tell Fred that "this time" I would not leave until I understood the "plan." About five years ago, the doctor made the only clear statement of intent that I can recall, saying that "[his] job is to preserve what vision [I] have."

Well, that battle has been lost!  I asked when he planned to remove the cataracts, and he answered with "Never, if I can help it."  That left me speechless but also finally motivated me to turn to Go-To-Guy.  In addition to refering me to a new dude, Go-To-Guy explained that glaucoma complicated the seemingly simple decision of how and when to remove a cloudy lens.

This is one area of my health concerns where I can be considered non-compliant and generally a rotten patient.  I had years to observe the stubbornness of my grandfather as he went completely blind from glaucoma.

One day, heh-heh, I should regale you with the stories of the Old Man firing a gun in the general vicinity of his brother-in-law, who had the unfortunate habit of belittling him.  People tended to allow his bullying, in large part because he was a wealthy old cuss, and without an heir.

I'm sure that, years later, when mean old James died, a lot of vague relations blamed their failure to inherit his millions on my blind gun-toting grandfather.

And it was something, too, to see him mow the lawn.  With a riding mower, without any discernible guide beyond his intimate knowledge of his own property.

He managed huge vegetable and flower gardens without apparent difficulty.  The only thing he clearly gave up was driving a car.

I am nowhere close to having his bravery or substance.

My failure to use the eyedrops designed to lower eye pressure is not a complicated behavior.  The whole issue scares me to death.  The drops may lower my pressures, but they also mess up my vision so much that I cannot function as a seeing adult -- can't read, can't write, can't watch television, play bridge, or make a discerning judgment based on the casting of one of Those Looks.  My eyes become red and irritated, the world shows up as a great big blur.  It's not even the kind of deficit where applying magnification has any effect whatsoever.  Granddad used to peer at the New York Times through binoculars.  That's not going to work for me.  I'd end up with magnified mess.


There is actually something else going on with these orbs but I cannot remember the term.  It has to do with the center part of my vision going to heck.  I take the stance of it-hardly-matters because I was told by Eye Guy that there was nothing to be done about it, sorry!  I was legally blind before being diagnosed with glaucoma and I guess that has given me a bit of fatalism over the whole business.




If anyone out there has any expertise in layout/design with an aim toward ease on the eyes, particularly how to  handle disturbances that come from "halos" and distortions due to cataracts, please lay your opinion and advice upon me! Also, Eye Guy told me not to pay for new glasses, as my vision will be unstable for a good while... Is that right?  Am I just supposed to break out the Braille?


Me, and Damien Walters; Damien Walters and I!

parkour:  The art of moving through your environment as swiftly and effectively as possible using only the human body.

You should have seen me. You would have cheered.

It was the perfect storm of good things:  I slept an incredible four hours straight, enjoyed a balanced, rich cup of coffee in the predawn, then relaxed and laughed with the flitting, fighting chickadees.  

And, if I do say so myself, I was quite nattily dressed.

Yes, there were the normal oddities.  La Bonne et Belle Bianca Castafiore was, inexplicably, curled up on the lower shelf of the kitchen block table, covered with an antique Point de Venise lace tablecloth.  Granted, she was sacked out in a kitchen that I don't normally use, as the replica of the Karaboudjan's galley is not my idea of the ideal place to prepare or consume food.  Still, for an early morning view of the cluster of spruce trees and the bud- and canker- worms so beloved by my beloved chickadees, nothing beats the view out of the galley's over-sized portholes.

Right. Well, anyway, things began well.  That's all I am saying.
I was feeling good; I was feeling lean and mean.

I had an early morning cardiology appointment and let's face it, early mornings are not exactly what we are known for around here.  Fred and I even retrained the circadian rhythms of all the livestock and domestic animals so that their days don't actually start until mid-afternoon.

Despite my penchant for equating left with west and north with straight ahead, we had an uneventful trip into Lone Alp. 

My MDVIP Go-To-Guy referred me to a new cardiologist this year.  It's not that the old one was in any way not a great doctor, he was.  Is.  No, it is more, for me, that I just cannot tolerate dealing with anyone or anything associated with the CrapAss Hospital that has so contributed to the demise of my earthly usefulness.  Not that I've given that much thought or anything!  

I remember, in fact, my Former Cardiologist with great affection, for he once told me that I would not die so long as he was taking care of me.  I loved that brash idiocy.

Unfortunately, ever since he actually had the chance to snatch me from the jaws of death, he has been caught up in the evil machinery of CrapAss Hospital.  Because of the great Shoulder Adventures of the last three years, I've only gone in to get an echo done, and only once, and did not deal with the doctor at all -- except to have one of his partners bless me out over the phone.  (When he was done blessing me out for having skipped a few echos, he told me not to worry about my aortic dilation blowing up, "because you will never see it coming...")

Oops!  Oh, well!

So we cruised into the Free Gimp Parking, gave Ruby the Honda CR-V a pat on the butt, and found the office with nary a wrong turn and not a bit of confusion.  [We don't do well in new office buildings.  Sometimes we duck into the first cozy looking waiting room and pretend we're in the right place.  It's usually the urologist's or the plastic surgeon's joint, though, and they catch on pretty quickly and toss us out.]

The New Cardiologist's place is incredibly well-organized.  I didn't realize how much I appreciated that until I was there, in the midst of streamlined forms and efficient people.  Everyone was so good at what they did, and they communicated!  Not just with me and Fred, but with each other.

Excuse my excitement.  Little things just send me!

Now... here is the part where it's all about me, and Damien Walters, Damien Walters and I!  That's this post's title, in case you've been distracted. 

I've long been a fan of parkour, then free running, free styling -- the martial arts, too.  As my body has crapped out and essentially imploded on itself, I've traveled beyond this body via the Internet and television, finally carving out for myself niches of the imagination.  

On one of my baseline days, I'll cue up the greatest of tennis matches, admire the most powerful and musical ballet dancers, and I let my body go.  It's enjoyment.  It's distraction.  For a few years, I could even pretend it was muscle memory!

On intolerable days, I might visit PopThatZit and replay Pete Popped a Pustulant Pimple ten times in a row... or I might not!  But I will *always* end up watching Damien Walters, usually his showreels, one right after the other.  I fly, jump, fall, push, pull, defy gravity and embrace gravity, all at the same time.  I feel no pain and my tendons never retract, my muscles never seize.  I'm lithe, light as air, fast as lightening.  Pliant, compliant, but steel, I am jiu-jitsu.

When I was escorted back to the echo room, this morning, the first thing that jumped out at me was the behemoth of an exam table.  It looked as tall as a freaking elephant.

The nurse asked me if I could change into the gown on my own.  "Sure!" I said.  She asked if I could walk to the exam table.  "You betcha!" I crowed, adding, "I brought my magic cane, even. But then you are out of luck, because there's no way I can get *on* it." 

"Not even with this stepladder?  How about if I hold you up?  How about if you hang onto me?"

Because of the instability, swelling, and pain in my ankles, knees, and hips, I cannot step up or down.  The last time I tried to use one of those stepladders was in a radiology department and the tech did not entirely believe my protests that I couldn't trust my legs.  I ended up on the floor that day, and pretty mad about it, too.  I have fallen quite enough in this lifetime, thankyouverymuch.

She picked up the phone to call for the nearest Big Guy, so that my own petard could be hoisted...

But something of the spirit of Damien Walters showed up in me, today, unexpectedly.  I told her that, no, we would not be needing assistance, and that, yes, I could do this if she wouldn't mind parking my wheelchair somewhere out of the way once I vaulted out of it, pirouetted in midair, onto the beastie table.

She looked a tad bit skeptical.  She was staring at my legs and wincing.

It might have been choreographed by Balanchine.  Danced by Edward Villella.  You'd easily imagine that I was inhabited by Martina, Chris, Monica, Hana, and Steffi, tour à tour.  

But it was in every way inspired by Damien Walters.

I planted one leg here, the other there, becoming my own source of symmetry.  I plumbed the potential energy of every surface.  Briefly, I was here, then there, now attracted, now repelled.  Once, twice, I was standing --sideways -- on a cabinet.  Thereafter, I was free of surfaces altogether.

I usually crane my neck and nervously watch the progress of the echo -- it's kind of neat to see your heart as it beats, to listen to the woosh-woosh.  The nurse, after verifying that I had survived my feats of athleticism with bones and internal organs intact, was all business.  She reminded me that talking, coughing, and such interfered with the test, so I stopped talking, never coughed, held my breath when instructed, but mostly just ran Damien Walters' videos in my head.

In a first, I managed to crack up both myself and the test operator, and did, I guess, disrupt things.  They record the sounds produced by various parts of the heart, concentrating, I think, on the valves.  I heard a series that were familiar from past tests... and then, out of the blue, came what can only be described as Island Music.  "They're having a party in there!" came out before I could stop myself from talking.  Seriously, we are talking ukuleles, tambours, maracas, and seven kinds of guitars.  

Go, mine heart, go!

There were a few abnormal results from the echo, but none of them were new, none of them were worse, and one of them was actually better.  I'm really happy with this new place.

The nurse was on the warpath as we left, threatening to quit if she wasn't given an adjustable table for her echocardiogram patients, going on and on about some "debilitated" people of her acquaintance.  Whoever they are, I hope they get better soon.

And I hope the cardiologists keep that massively tall, unwieldy table, maybe tucked away in some storage room for when I come back next year.  

I haven't had so much fun in I-don't-know-when.