"greet the dawn with a breath of fire..."

this is pre-op week, and that means weirdness.  

scads of odd little details that are the world to me, yet barely fluff to the world, crowd my mind.

it's hard to know how to prepare for this surgery, so i wait for the lights to be safely out and i cry.  for five or ten minutes, then i stop and stare in the dark for a bit.  there is something wrong with the brain but i care less and less.

the anti-seizure properties or the anti-anxiety components of clonazepam are helping a lot with the spasticity, for which i am profoundly grateful.  if i can manage to get the doctors and nurses at the hospital to understand how it works together with baclofen and yes, even with tizanidine, then maybe there will be no stints in icu or trips to funky nursing homes this time.

pre-op week is always full of fun dialog, too.  this morning, i called one of the myriad assistants to my super surgeon, trying to track down the $2000 she wheedled out of me back in mid-january.  that was to have satisfied my deductible, and yadda.  except that it never was reported to my insurance company.  and, being odd and very touchy about funds, i have yelled, on several occasions, at other "providers" who seemed to be claiming the right to a piece of my delectable deductible pie.  anyway, the conversation boiled down to this:

ME:  i am trying to locate the $2000 i gave you back in january -- you know, find out how it's doing, is it happy, having fun..  i thought for sure it would write but i've not heard a word.
ASST:  we probably used it to pay something.
ME:  probably so!  i'd just like to know what, and when, and all that stuff, as i cannot locate the EOBs that usually go hand-in-hand with all that glee...
ASST:  o! you know what?
ME:  no!  what?
ASST:  we only needed $170 of that money and then they said you was covered at 100%
ME:  super cool!  so where is the $1830 that was left over?
ASST:  well, now, we just found that out in february.
ME:  and it's now mid-may... your point?
ASST:  can i get back to you on that?
ME:  you may, indeed  and i really, really want you to feel free to leave a voice message.


pre-op week is just fun, and foolish, for whatever reason.  it's hard to whip up the frenzy necessary for good reportage, so i'm gonna ask that you reread Dr. Hackenbush! Calling Dr. Hackenbush!  in that post i recorded one of  my favorite conversations from the medical intake process that makes it such a favorite activity for nurses and patients alike:

Here is a sample of our stellar communication, verbatim:

The Nurse: When did you last have an EKG?

Me: In August, the last time I was here. 

The Nurse: And when was that? 

Me: In August. 

The Nurse: And where can we get a record of that? 

Me: Ummm, here? In my medical records? (See? She managed to get to me -- my "intonation ascendante" is a dead give-away. Ar! I used to get hit on the head with a ruler whenever my "intonation ascendante" gave way. What was that dear old teacher's name? I can't remember, but I loved him...) 

[Choo choo! Train of thought! Choo... Back to the scene of the crime... ] 

Me: Ummm, here? In my medical records?

The Nurse: Hmmm. Maybe in your medical records.

so, yes, i am here begging indulgences.  your indulgence.  i find it hard to remember the day of the week, i am unsure whether the 12-hour clock is a good idea, and i am sort of shaking in my non-existent boots.

i will lose my left shoulder and the upper part of my left arm next week,

i still look to the amazing young hannah for inspiration and to stir the cauldron of my shame.  she is doing great with her physical therapy, and just prior to starting a new round of chemotherapy last week, she began the process of getting her fancy-schmancy new prosthetic leg. i love looking at this picture: she makes me smile, she makes me have hope for the future, her own, and everyone in her general proximity.

what super surgeon's plan will be should he open me up and find more infection (as unlikely as *that* would be, SNORT!).  he confessed to not having a clue but opined strongly against tossing in a third prosthesis... although the situation might cry out for yet another antibiotic-laced spacer.  and another surgery.

i am downright stupid.  for some reason, i thought making this brave decision to opt for the flail arm meant that the infection and inflammation would stop.  duh. no, i get to be brave and fight a good fight within the confines and confections of the identical situation.  the up-side is that should we ever get a handle on those wile e. pathogens, there's an improved chance of annihilating the suckers using some box of combustible supplies forwarded by acme corporation.

me and my deals with god.  harrumph.

today?  today i took a pre-dawn shower, and cooked up what can only be called "a mess" of brown rice.  it is destined to be a homey, comforting rice pudding for fred and the militant existentialist lesbian feminists pot luck wednesday night supper.  for some reason, they think it becomes health food if made with brown rice. whatever.  militant existentialist lesbian feminists -- and fred -- become all cute and stuff when their pupils dilate at the sights and sounds of comfort food.

the felines are fine.  okay, well, buddy has been a bit traumatized.  first fred dropped a heavy ceramic bowl full of kibble on his fine head.  and then i did it the next day.  so the poor little guy, who is always hungry, looks skyward with both fear and hope.  we tried to explain and apologize but we don't speak cat.

i need some pain meds and for my legs to be elevated, and to weep a little.  (oy!)  so i will write at you later, dear reader.

Alacrity of Crab and No Fear of Death

Set your sound system to mute.  I was thinking more of what Holly Near once looked like, on the steps of Sproul Plaza, than of the song, which I now realize that I hate.  It's a facile, good-for-nothing song.  And I'm just lazy enough not to want to spend five minutes reformatting this award-winning little vid so as to get rid of it.  

Plus, I have Cajun Blend Trail Mix seasoning stuck all over my fingertips, making them sticky, orange, and tangy.  I don't want to touch too much stuff, leaving cajun traces every which where.

Why don't I just wash my hands, spend the few minutes fixing the sound, and apologize to Holy Holly Near?  Well, who died and left you in charge?

There has been something potentially wonderful going on.  It's called clonazepam, and depending upon whom you ask, it is used to treat dystonia, anxiety, seizures, panic attacks, and insatiable lusting after good garlicky pickle juice.  I began noticing it being mentioned in articles about CRPS spasms/dystonia, mostly articles originating in the U.K.  Being at that "well, why the hell not?" stage of life, I emailed my good and faithful MDVIP physician, asking whether he thought it worth a try.  In lieu of a discussion, he called in a prescription to the Lone Alp Apothecary.

The first change of note was blubbery.  Babalushka bablubbery.  Sleeping as if it were le dernier cri and all the babalushka bablubbery surrounding it were refined messes worthy of literary awards.  I decided this was how I wished to die -- asleep, or contemplating sleep.  I kept all my other meds the same -- maxed out on Baclofen, even adding the odd tizanidine to the usual pain meds of methadone and endocet.  "Did I want to die?" you unsufferables are muttering, shaking your locks to-and-fro.

Why, yes, you unsufferables (and mutterers, too) -- I did hope to traipse off to death land.  I couldn't take it anymore.  The time awake was spent in rocking, tendon-splitting spasm, uncontrollable sobs that bored even the Feline Remnant.  The time asleep ordered itself around oneiric alphabetizing of what I could expect upon waking.  And upon waking?  Well, I was made to know that I was... "overwhelming." 

I put a lot of hope in an appointment chez Dr. PainManagementDood.  I know, I am stupid.  My previous appointment, to my recollection, had ended with the promise that the next one would entail a shift away from methadone, which, frankly, frightens me, and toward a better management of my baseline pain.  But -- AGAIN -- I was met with a Nurse Practitioner's big round eyeballs, and a "Uh, did we say we were going to do that?  Did you tell us your pain was out of control?  Can we take that up next month?"  I went home and vomited

So slipping away into babalushka bablubbery was a smiling, gently smiling thing, though lonely, and scary.

Then my spasms decreased in frequency.  Not in severity, ugliness, painfulness, no -- just stopped happening as much, as often.  I pushed the dosage of the clonazepam to the most recommended by good MDVIP go-to-guy, and cut back some on the baclofen.  

I started to be able to predict the babalushka bablubbery, so that a warm quilt could be at the ready, other important maintenance drugs could be taken on schedule, the room could be darkened, there was a semblance of... intent.  Occasionally, I risked thinking beyond the impending babalushka bablubbery, and plan to cook dinner for Fred, myself, and Bianca, because if I had to listen to that god-forsaken *ding* of the microwave one more time, I was going to revive Mengele's most promising experiments.  The secret lore of the Haddock clan includes the updated names and addresses of Auschwitz twins.  Sometimes, Reader, looking the good captain Archibald in the eye is a soul-sucking trauma.

It's been about a week now, I think.  I am not sure, at all.  I am not sure what day it is, not sure whether I believe the sources that yearn to ease my mind about it.  Is it 2:07 PM 5/18/2012 or is that just what you all want me to believe?  Hmm?  My pain level is very, very, very high -- I'd rank it around a nine, and it's distracting, it's evil.  I know I took my breakthrough pain medication and so cannot have more until roughly 7 PM.

The spasms are lasting only about 3-4 hours per day.  That is PER DAY.  TOTAL.  I am afraid to type it, afraid to publish it, afraid to believe it.

So God bless MDVIP Go-To-Guy, God bless him as he has never blessed a soul before.  You see, he believed me, he believed my desperation, he found merit, apparently, in my suggestion, and above all, Sweet Reader, he tried.  

He even heard me when I said I'd had it with Dr. PainManagementDood, and suggested another doctor, by name.  Unfortunately, that doctor has gone the route of ka-ching::ka-ching procedure land, and so only treats CRPS with sympathetic and regional blocks.  Oh, and SCS -- which would fly in the face of my recent decision to rip from my body all extraneous implants.  

Here is the kicker, though:  when he found that his referral was actually no referral at all, MDVIP Go-To-Guy offered to take over my pain management himself.  I probably should have said "Yes, and yay!" but a smarter self intervened to thank him but decline.  It's beyond unfair, to dump everything on him.  The current climate of looking over prescriber's shoulders and second-guessing their pain management decisions is not what I want to wish on him -- though there is little doubt my treatment would raise more than an odd and poorly tweezed eyebrow.

But here is a "Yay" for the man, anyway, because the combination of tizanidine, baclofen, endocet, methadone, and CLONAZEPAM seem to have quelled the spasticity enough that I must reconsider life.

Um, it also seems to have triggered something that I will call "automatic eating," which results in finding half empty yogurt containers in bed, and bowls of popcorn with kernels all hither, all yon.

There are increasing deficits, too, and these are the reasons for cutting back on dosages in the hope of finding a happy medium.  Legs not working too well, hands not grabbing with the alacrity of crabs. An absolute absence of the fear of death.

Someone asked for a visual update of hands and feet, so I pieced together the video below.  Again, I had fun with favorite things in juxtaposition.  

Which brings me back to Holly Near and her glorious red hair back in the mid-eighties, being all troubleshooting troubadour-ish on Sproul Plaza.  But really, what a shit of a song.

You know it and I know it -- were we really singing for our lives, it wouldn't be such a whine.  It'd be glorious.  It'd be red hair glinting in a setting sun.

gratuitous east coker: wanna know what i'm doing?

want to know what i am doing... right now, this very minute?

this:

addendum:  mdvip go-to-guy added clonazepam to my drug arsenal but it's too soon to say whether it's helping. yesterday (sunday) was the first full dose day.  due to constant clinching/declenching, my hips are sources of agony, and my knees, totally unreliable, and reluctant to bend. hard as it is for *me* to understand, i cannot expect for you to get it... but the cries and curses are a surprise -- the pain, a shock.

note that even dear dobby and dim buddy no longer respond to my whimpers. why should they? do i whine and give them a treat?  no.  do i yelp and offer a wunnerful wunnerful ear scratch?  no.  in all terms of feline / human interchange, i am a big nada zero zilch, the big nil.




So here I am, in the middle way, having had twenty years—

Twenty years largely wasted, the years of l'entre deux guerres
Trying to learn to use words, and every attempt 
Is a wholly new start, and a different kind of failure
Because one has only learnt to get the better of words
For the thing one no longer has to say, or the way in which
One is no longer disposed to say it. And so each venture
Is a new beginning, a raid on the inarticulate
With shabby equipment always deteriorating
In the general mess of imprecision of feeling,
Undisciplined squads of emotion. And what there is to conquer
By strength and submission, has already been discovered
Once or twice, or several times, by men whom one cannot hope
To emulate—but there is no competition—
There is only the fight to recover what has been lost
And found and lost again and again: and now, under conditions
That seem unpropitious. But perhaps neither gain nor loss.
For us, there is only the trying. The rest is not our business.

  Home is where one starts from. As we grow older
The world becomes stranger, the pattern more complicated
Of dead and living. Not the intense moment 
Isolated, with no before and after,
But a lifetime burning in every moment
And not the lifetime of one man only
But of old stones that cannot be deciphered.
There is a time for the evening under starlight,
A time for the evening under lamplight
(The evening with the photograph album).
Love is most nearly itself
When here and now cease to matter.

Old men ought to be explorers
Here and there does not matter
We must be still and still moving
Into another intensity
For a further union, a deeper communion
Through the dark cold and empty desolation,
The wave cry, the wind cry, the vast waters
Of the petrel and the porpoise. In my end is my beginning.