Follow me down the rabbithole

Sunday, June 29, 2014

The biopsy of a biopsy - pre-op notes

So, today, Tuesday's biopsy news finally had a chance to percolate to the top of my head.  In one very key sense, that is a good thing, because it means that the terror tide caused by the terrible toe has subsided to let other thoughts intrude in their own churlish way.  Bah humbug I say.  Here I was feeling not too badly a'tall, foot comfortable (especially so since using Brilliant Brittney's wonder salve made with beeswax, herbs and cannabis extract) and the biopsy knocked on the door of my contentment.
     "Hi, there...remember me?  Don't know how you really could have forgotten me, y'know.  I am one of those life changing events you always read about on the Internet.  Let me in.  We need to talk."

Yeah.  Biopsy,  big, scary kind of word.  One of those "oh shit, it just got real" words.  Not that I was surprised...I have always done very badly on those physical kinds of tests...morbidly obese people have things others don't...and they are often in the wrong places, or covered over with layers of self.  So having a mammogram repeated was not a new thing.  But....


Processing.  Bio.  Easy one.  Life.  Psy.  Mind?  Ah.  AG (After Googling), I find that psych is mind, and short old psy isn't really anything.  But OPSY turns out to be associated with sight and vision.  So they are looking for life.  Well, shit.  That's exactly what I am all about right now.  Hot damn, there is something I can agree with!

Smiles are welcome, if warranted.  You aren't laughing at me, or my pain, or my affliction, you are donating to my medicine.  Thank you.  And humor has always been my weapon and retreat when dealing with nasty shit.  Years in the classroom taught me that making people genuinely laugh makes everything around all of you a little brighter, pushes back some of the gloom...I know.  Fuckin Mary Poppins and her spoonful of sugar... but laughter and merriment ARE healers.  If Hollywood got a hold of a good idea, and fucked it up for commercial reasons, well, it won't be the first time!

So part of this blog will lend itself to my rather dark sense of humor.  I have had one since I first laughed at one of those nasty jokes kids whisper to each other at slumber parties.  No, not the dirty ones, the dark ones.  "What kind of wood doesn't float?"  "Natalie".

Sorry if that slice offended you.  Fair warning, one outlet for my inner darkness WILL be those kind of remarks.  I have withheld them for decades, due to my 'position'.  High school teachers don't ask their students "What kind of shampoo did Princess Di use?"  "I'm not sure, but her head and shoulders were all over the dashboard"

Sorry if that slice offended you.  You had fair warning.  And I GOT the Princess Di joke from one of my students.  He grokked beneath the teacher to the anarchist, as did some others.  They rocked then.  I hope they are rocking now.  I miss all that.

Biopsy.  So what will we talk about?  Biopsy means, right now, today, unknown.  There is a question that needs an answer, and biopsy is the means to that answer.  OK.  Been dealing with that kind of thinking all my life.  NO problem.  Got it.

The fuckin abyss opens up at the next step.  Then what?  Oh Holy Powers that Influence Shit Around Here - Whatever you deem him/her/it/them/us/ or other to be...henceforth collectively referred, for convenience ONLY, as gawds (all typable with the left hand.  cool)

Then what?  Oh Gawds.  Who the fuck knows?  There are three possible outcomes.  The first is another inconclusive test, which means another session, more waiting, more... GAH.  Please gawds, not that option.  I NEED to know the simple answer - yes, or no.  Did I pull the black pebble or the white one?Does my square of paper have the deep black mark on it?  And are those stones in my breast or what?  Suspicious calcifications.  Hard words to type - harder to wrap around in my brain.  Calcifications.  To me - that means stones of some kind.  I have had stones before, gall stones.  Related?  Maybe I just tend to have the calcium crank stuck in overdrive, and the spare calcium winds up deposited all throughout the storehouse.  Which is a lot more cramped, now that I have downsized by more than half, so maybe all that crap stuck away over all those years is finally seeing the light of day - and is nothing more than another memory of twinkies at dawn, cheesesteaks that required two hands to squeeze shut...yeah.  Could be just that.

Or it could be cancer.  Type the word, Mel. Shit is now real.  And if it is cancer?

Praise gawds that I am in the absolute bestest place on earth to have this happen.  The Rogue valley grows the best cannabis in the world - naturally, organically, under just enough sun, cool nights and love and attention to thrive and spread their healing far beyond the valley floor.

The people of the Rogue Valley have hearts as big as those mountains that hold us in, and challenge us at the same time.  There is a special group of cannabis warriors who have been drawn together by something none of us can define, classify, cognify, delineate, categorize, or other wise codify - but it's as fuckin real as each of us is, and we feel it and know it.  Some of us refer to the Goddess, others have other names, some don't need a name, others have very formal relationships with this force, and if you feel this just went off the metaphysical end of things, have another hit.  You aren't stoned enough yet.

Anyway - the group of which I am humbled to be a part are the strongest, most committed cannabis warriors anyone could ever hope to meet.  They have endured calumny at the hands of the city council, criminal charges at the same behest, loss of income, inability to operate a non-profit, and the loss that means the most - the loss of our inability to easily and efficiently help patients - legal, registered, totally state legal patients - get the right cannabis medicine.

That sucks.  But this group fights on, and knowing how they have bulldogged their passion since they assembled beginning in 2010, I tell you three times that there could not be a better krew at my back than these people.  I love all of them, and if cancer is a part of my future, I know that they will be there.  After my first catastrophic illness in Bethel, where Roger was my sole support, rock, anchor, knight in snowy big alaskan teddy bear with the beard of frost and the heart of gold, knowing another friend is 10 minutes away is healing power I am truly grateful for.  Thank you my friends.  Knowing he no longer has to be the one and only prop is a relief I cannot find words for.  This year is challenging enough for him in his primary task, and letting him concentrate on that relieves me tremendously.  Thank you for that as well.

I also want to express my utter astonishment with the medical personnel I have encountered thus far in the process.  From everyone at La Clinica, to the staff at the radiology departments at RVMC and ACH, a most grateful thank you.  I never felt dismissed, demeaned, made to feel as though I was the consciously responsible entity who created these issues, and how dare I walk through their doors and expect them to fix something I had so obviously managed to break all on my own...

Yeah.  When you go to seek medical help and you weigh in at 337... that is what you get, that is how you are treated, that is the attitude, the help, the advice.  I was never a pain patient - I was that fat lady whose poor feet understandably hurt.

I need to make something clear.  The scenario I am describing in no way reflects anything done in 2014.  I am speaking to the people in Bethel - and the people I encountered at La Clinica back then -2009/2010.  Not all, but there were enough fat haters to leave a sour taste in my mind.

Now, at 160, I have had medical people congratulate me on medical progress, unrelated to my weight.  Amazing.  Now that is out of the way, I am being seen as a patient.  Not a fat person.  Way to make progress toward mellowing my hideously negative attitude toward the industry of Medicine as practiced in the West - practiced, I note, because many of them are STILL trying to get it right.  Keep practicing.  Ice it son!

Spent some time in the garden today - watered, cleaned out the butterfly bush...very reluctantly.  It is gorgeous and does draw wonderful butterflies, but the medical garden pests are drawn by it as well, and I had to make the obvious choice.  I will attempt to keep it alive at a very low bonsai level, as it is grandfathered in after that law against selling them was passed a couple of years ago - so these should not be lost - especially since I seem to have an unwarranted and unfounded skepticism about ANY law involving the prohibition of a plant.  Some of those laws are defensible.  Some aren't.  And without the time to research butterfly bushes and their environmental impact...I will try and maintain it until I DO have the time.  I can take it out if I find that is best, but I cannot restore it to life if I do that now, and discover this is another bad plant law.

Shoes were good about an hour today before the toe began being uncomfortable.  Just enough time to get the garden attended to and get set up for a lovely and healing afternoon on the porch - listening to great old folk and cross stitching just feet away from some of the prettiest and happiest ladies in the valley.  How can you NOT sit there and feel at ease?   Here was the view from the porch 2 weeks ago.
Here is where I am waiting out the sunniest, hottest hours of the afternoon.
The brown and beige thingie is actually an led fountain.  Led lights flicker under the water, which splashes down on rocks - which were lost when the fountain was stored.  Lo and behold, I was recently at a fantastic outdoor wedding and found myself wandering a creekbed, picking up small stones, idly, curiously, no real intent other than I was there, and so were the stones.  A couple of days later, Britt and I were discussing our enjoyment of fountains and I remembered this one.  There were no stones, until I remembered those I groundsourced from Humbug Creek.  They sound happy to be wet again.
The purple cup contains mint leaves.  It used to contain iced tea and mint leaves.  It was delicious.  First fresh mint tea of the year - and from my own mint.  The simplest things bring such joy.

I look to my right - and see the ladies stretching toward the sun.  Each day.  Blessed I am.  Yoda, home go.  

And the tour concludes with the view from my corner.  It's a nice quiet corner, where one can collect thoughts, play with quiet things, or just look around inside your own head for a while.  Nothing can hurt you there.  Feel free to stop by and sit a spell.  Anyone, anytime.  Please.  There is peace enough here for everyone.  BYOBeverage, we are down to tea, coffee and water.  Love to all who read this far, and those that did not.

Make today the best day yet.

Saturday, June 28, 2014

Bethel bits part 1

"9-1-1, What is your emergency?"  So started every memorable night as the only 9-1-1 dispatcher in an area the size of the state of Oregon.  As the Public Safety Dispatcher for the City of Bethel, Alaska, each phone call was another opportunity to learn something else.  All too often, those lessons were harsh, brutal realities.  What can one human do to another when shit hits the fan?  How fast can nature kill you in Alaska?  Sit at the 9-1-1 console at the end of the earth for a few days, and you will have some answers.

Bethel is just about the end of the earth.  To get to Bethel, you have to be very determined.  It is not somewhere you pass through to anywhere else, unless your ultimate destination is one of the Native Alaskan villages scattered across the Yukon Kuskokwim delta in Southwest Alaska.  There is nowhere to go from Bethel except back to Anchorage.  No roads lead to Bethel.  The only way in or out is by air.  No trucks haul goods to Bethel.  No power or phone lines go out there.  The town is self sufficient in ways that would make urban planners in the lower 48's mutter ceaselessly into their lattes before writing the entire affair off as insane.  A town where 70 percent of the homes have no water or sewer lines?  Where only one road is paved, and all the others get maintained by road graders?  Where taking your honeybucket down to the slough each morning is standard operating procedure?  Where there are three seasons, snow, mud and dust?  Nothing in Bethel works according to any rules you take up there with you.  The third day I was there, I muttered to Roger "This place makes its own rules."  The day I left Bethel, 5 years later, nothing had changed.  Only Bethel rules work in Bethel.  Anything else will probably get you killed.  Shit is real up there.

Imagine a town of 6,000 or so.  Most homes are fairly small, and every building is up on stilts.  The tundra is permafrost.  One does not build directly on permafrost, whether it is a bank, a house, a school, or a good road.  Permafrost melts.  (Oxymorons rule!)  But permafrost doesn't stay melted in Alaska.  It refreezes, but never in the same place from which it melted.  Everything shifts.  If the house is on stilts, these changes take place below the house, and it only needs to be adjusted ever few years.  Oh - how does one adjust a house?  One picks it up and resets it on the stilts.  Or, as often happens, the entire house is loaded on the back of a truck and driven across town, to be dumped off at another lot.   A new set of steps is nailed together, the front door is unlocked, and the family is resettled.  Since homes in Bethel often serve as family hubs, relatives coming in from the villages expect to stay with family while in town.  But they aren't always in the loop.

Cab drivers in Bethel are more than familiar with someone getting into their cab at the airport and saying "Take me to Tommy Joe's house.  It's green with a red roof and he lives down by the police station."  The driver then begins to cruise the area, looking for Tommy Joe's house.  Since this is Alaska, the odds are pretty good that this search is happening in at least dusk, if not full on night.  And if you are mentally ticking over cab fare as the search goes on - well, that's another one of Bethel's rules.  Cab fares are determined by zone, not mileage or time.  If you get a ride from the airport, your fare will be 7 dollars, regardless of where you go, or how long it takes you to get there.  And you will not have that cab to yourself.  Because of the zone system, a cab driver packs in as many passengers as will fit on each trip.  You will be squeezed in along with the stinkhead buckets, bingo bags, unrestrained children, guns, dead animals, etc. that get transported beside people in Alaska.   Tends to make first time visitors a bit unsettled.  You get used to it.  Or you don't.

I was a cab driver for 6 months in Bethel.  When I arrived there, it was with the intention of getting settled, then enduring the process to become certified to teach in Alaska.  (I am certified as a Teacher of English and as an Elementary Education teacher in New Jersey).  However, a month as a substitute disabused me of that notion.  Teaching to the test is job one and only, as far as I can see.  Each classroom was filled with the props that I recognized as corporate packages, designed to sell corporate packages to school systems struggling with problems that go far beyond "Johnny can't tell a verb from a noun."  Fuck real education - let's set up a system where we decide arbitrary measures of achievement, then demand those arbitrary numbers be realized by massive amounts of time and money spent in having kids color in bubbles with number 2 pencils.  And since we want to prove fiscal responsibility - let's grade those arbitrary measures with a machine that can only read well-colored bubbles.  So what we are REALLY testing here is someone's ability to color in bubbles.  But I digress.

Instead of a teaching license, I got a chauffeur's license.  I had to get an Alaskan Driver's License, then be road tested by the Cab Inspector (an employee of the Police Department, who were nominally in charge of the cab industry).  The road test would consist of being given 5 destinations in town, sequentially, and successfully arriving at each location undamaged and unlost.  I have a degree, summa cum laude.  I took many of the standardized tests necessary in this modern life.  That road test was the most difficult I have ever endured.  "Delta cottages", "Flagpole", "Blue door", etc.  I passed, and began driving the streets of Bethel.

I drove the evening shift, 4 to midnight or so.  I began driving in June, so midnight meant as much daylight as near evening down here.  I would often finish a shift by turning on my headlights to drive home.  Most cab drivers in Bethel work like maniacs all winter, frequently violating the maximum driving hours per day ordinance.  They would then "go home" for the summer, returning in the fall like ass backwards swallows to Capristrano.  Home was probably either Albania or Korea.  The Korean population in Bethel is significant.  Koreans own many of the cabs and most of the restaurants in town.  Albanians are fewer in number, but still represent a good part of the non-native population.  With 65 percent of the town listed as Native Alaskan, that meant that English was a decidedly second (if not 4th or 5th) language.  As a cab driver, this was amusing, frustrating, and ultimately just a nuisance.  When I left the streets to become a dispatcher, however...

Anyway, driving cab in Alaska was a joy during the summer nights.  The sky in Alaska is the most amazing thing I have ever been honored to see.  As a life long star gazer - the open sky overhead in Alaska was a dream come true - almost.  Out on the tundra, a little glance goes a LONG way.  On clear days, we could see to the mountains that walled us off from Anchorage and civilization - and they were 70 miles away!  (Of course, on the other side, there were another 300 air miles still to go...but who's counting?)  I saw eclipses, double and triple rainbows, a bolide that still hitches my breath when I recall watching it blaze overhead seemingly just out of reach, then exploding just above the horizon...sun dogs and the aurora borealis.  But again, even the weather makes its own rules.  Thunderstorms are rare in Alaska.  Thunder snow can, and does happen, and is absolutely mind-shattering when it does, but the usual summer evening grumbler is just not on...usually.

One evening, I was taking a grannyclutch to Bingo.  4 older Native ladies, in their kuspuks, clutching their bingo bags, chattering away in Yup'ik (a language best described as the verbal outpouring of 2 half-drunk pissed off cats- at least to this East coast ear).  Suddenly, thunder rolled and the grannies began to wail.  I don't speak a work of Yup'ik, but granny wails are translatable by anyone.  They were terrified!  One begged me to pull over.  I rolled to a stop on the side of the road, and the ladies cowered in the seats, trying everything that they could do to roll up into little granny balls on the floor.  They trembled and wailed while (at best) middling thunder rumbled off at a distance.  These women were survivors.  Their faces were chiseled with decades of life in the Arctic tundra.  They survived floods, blizzards, earthquakes, the loss of their way of life, the devastation of their traditions by the arrival of others, yet a thunderstorm that would not have disturbed a child back East had these ladies gibbering in their seats.  Looking back, I realize that they are a perfect metaphor for anyone trying to make their way in Bethel.  Even the most usual of things becomes outsized, grotesque and fearsome when seen so far from its familiar context.  A simple summer thunderstorm became a monster from the worst nightmares.  A night out becomes a tragedy that lasts through the following spring.  A kid playing games becomes frost food for wildlife, and gets top billing for a few days as "What's new and happening around Bethel?"

For more information on the Yup'ik people of Alaska - click here.  I deeply regret that my time there was not spent in closer personal contact with these amazing people.  There is much there to be learned, but the barriers to getting those stories were insurmountable.  Language was the first and foremost hurdle.  I love words, and languages usually come fairly easily to me, given enough exposure.  5 years was not enough to scratch the surface of Yup'ik.  It is a language shaped by the environment into which it is spoken.  To my ear, it is filled with harsh, bitter, snapping sounds, like the sounds of ice in the winter.  Lots of gurgling and back of the throat noises, the kind you make when you don't want to open your mouth wide (as is usually a good idea when it is minus whatever outside).  When stories are told, there are few common references.  Hearing stories of fish camps, whaling from kayaks, seal hunting and eating... the stuff of fantasy worlds to someone from southern New Jersey.  But the teller of these fantasy stories was right there in the room, demonstrating the paddling moves that brought him to the whale, or miming running an ulu though the salmon in preparation to hang it outside from the drying racks that graced each dooryard area.  Cognitive disconnect sets in early, and lingers far past its usefulness.  Nothing makes sense, and you quickly disabuse yourself of the notion that it should.  The Yup'ik language just adds aural emphasis to this.  Those are people, yes,  And their mouths are moving, and sound is coming out, so they must be speaking, but...what IS that noise?  Add to this the permanent sense of disorientation that you experience when the sun is no longer reliable, and you have the makings of a truly epic chemical free major mind fuck that lasts as long as you are in Alaska.

So, if you have gotten the impression that Bethel, Alaska is a place like no where else on earth, with its own unique challenges, tragedies, and victories, you got it right.  I am going to link a few shots that I did not take, and was not present for, but which I can affirm truly represent life as it was when I was there - FACE OF BETHEL CLICK HERE

Friday, June 27, 2014

What was it that I used to tell my writing students?  When you are staring at the blank page and seeing nothing useful, just start writing the parts that you DO know.  Sooner, rather than later, all those other bits and bobs will start appearing, and the hard stretches will start putting themselves together.  Still seems like good advice.  Besides, in media res story openings always intrigue and tickle me.  So...write what you know...

My absolute worst nightmare came true today.  Life changing event.  For 8 years, I have feared and dreaded the return of the Zeusbolt pain in my feet.  It came back this morning, at Bethel levels.  What is Zeuspain?

Zeuspain is my inhead term for the agonizing bolt of pain that is accompanied by a feeling of a hot iron rod being shoved through my foot.  The Zeuspain is the lightning that strikes that iron rod, and results in the fireworks moments - those random firings of pissed off nerves who resent being shaken out of their slumber by a fucking lightening bolt!

Bethel level of Zeuspain refers to the origins of my current medical migration ... one out of fear and pain into health and happiness.  This will be my journal, my journeyman's piece, the account of one woman's journey into the underground, to seek wisdom, and emerge on the other side, to share that knowledge.

At 5:045 this morning, Pacific Time, I was jolted from a sound sleep by a sudden searing pain from my great toe.  2 days ago, I was hurrying to close the driveway gate when it snagged, and I yanked, not mindful of where my feet were.  The gate only seemed to slam into my big toe, a pain I would best describe as a "jammed" joint.  But this pain lingered and intensified, and changed as I rode to work.  Stepping down from the high seat of the pickup, I felt a squish and knew what I would find when I removed that shoe.  I poured the blood from it, as I feared.  There was a puddle in the insole, and my big toe was streaked with it.  I had no idea where the blood was coming from, as that kind of detail would only be obvious when the toe was moved and no one was touching it.  I will upload pictures to a seperate file and offer links here.  They will be graphic.  They will be real.  I will only post those pictures which I have either taken myself, or was present when it was done.  Only click if you want to see nasty.

This meant I had an open wound on my foot - the first since my partial healing in 2007.  I have been terrified of this since the day that I first had relief from the last wounds.  I will not go back there.  I will not live with that pain again.  I will move through this and emerge from the other side, healed and stronger than ever.  This is the last time that this pain will dominate my life and mind.  This ends here and now.  Time to beat this thing once and for all, and put it to rest.  This blog is my mathomhouse -a place where all things related to this medical journey will be collected and made available to anyone interested in cannabis as medicine in actual real world practice.

In the Beforetime...