Osa

A small tale from 2000 | DRAFT in progress...

NOTE: I started this project mid-November last year (2012) during an online writing workshop with the wonderfully talented and lovely Melissa Febos. She managed a small group or writers from Brooklyn in the wake of Superstorm Sandy's massive flooding. A trooper for sure and very encouraging.

My thanks go out to her again.

But now I must muster the will to continue alone and complete what I started. It seems the right thing to do. It seems like a beating.

Time to take my lumps.

What follows is intended as an introduction to a larger story, a series of vignettes strung together by the narrator dipping in-and-out of a journal. I'm starting with 40 hand-written pages from a 7-day trip—many gaps to fill, details to embellish, research to do. Far more difficult to make sense of than I imagined when starting. I thought, hey, most of the writing is already done :)

It is also my intention to illustrate (from bad photo reference and memory) this small tale in any way that strikes my fancy. I'm comfortable in graphite and ink, but have started teaching myself to paint with oils. Should be interesting.

If you've not seen my illustration style, check out seteleven.com

If you've not sampled my writing style, check out a bit more of this blog.

If anyone actually reads this—now or further along the way—feedback, critiques or encouragement would be greatly appreciated. Please comment, +1 and share at will if it seems worthy.

If I can get enough personal momentum and generate some interest, I may consider launching a Kickstarter campaign to fund the production and promotion of a hardcover illustrated novel. Just a blog for now, but maybe, just maybe...

Playa Colibri | 11:30am, Wednesday

     Well, I'm here. Marga's Playa Colibri, La Palma, Peninsula de Osa, Costa Rica. Not my intended destination; not on my itinerary; not a more wonderful chance encounter in recent memory.

     Bored with lying on my cot against the lone south wall and in far too much pain to stand for long, I'm sitting now—painfully—in a plastic chair at a plastic table, looking out across the Gulf from the center of an open 40-by-40-ft platform, itself the middle level of a squat, three-story concrete and stucco structure set into the trees 150 meters from the beach. Overcast and still, the morning is in perfect sympathy with my mood. The salt air works with an all-pervading mix of warm decay and cool growth; I can smell dead fish and fresh flowers, wet tree bark and living cedar—it's wonderful. Even with mosquito nets raised, I've seen no insects, but their presence is nearly overwhelming; millions upon millions of staccato chirps and clicks gather in waves that swell around me, dip low and flow through me—deeply soothing. Bug sounds, birdsong, a persistent crashing that seems to circle my position as old limbs give out and make way to the forest floor in random directions. Toss in the frogs and monkeys and somehow it all inexplicably refuses to drive me insane. I would stay here.
     Located along the inner north-eastern coast of the Osa on Golfo Dulce, Playa Colibri is the home and fledgling business venture of Marga, a wiry white-haired 71-year-old former teacher from San Francisco. Although not yet operational, she intends to open as a yoga retreat next Spring. The property is owned by her son and sat "unused" for years until her arrival in '97. With a kitchen on the ground floor, two interior living/sleeping areas, a covered exterior space—now sheltering my 60-lb backpack and miserable body—and an upper deck with seating, solar panels and rainwater collection ducts, the salmon- and rust-colored building was constructed offset between a beautifully swampy mangrove estuary 30 meters to the west and a thriving campesino family estate 200 meters to the east.
     Costa Rica's land laws offer significant protection for squatters putting disused land to good use, e.g. living and farming. After three months, occupants gain some rights to a plot without regard to any title holder. A year makes such peasant farmers extremely difficult to evict, even through the courts; after 10 years, a squatter can register the property as their own. I have no idea how long this family of 6 has worked their tiny farm, but the impressively hand-crafted house and outbuildings with nearly flat, shingled rooftops are all driftwood and odd angles; maybe 7-ft at the dramatically extended eaves, could be a hundred years old. Easy. Unable to discern from this distance what grows in the gardens, the grounds crawl with activity indicating they've harvested few chickens recently.
     Understanding this situation might distress a property owner, it nevertheless warms my contrary-inclined, live-and-let-live heart. Still, righteously aggravated, Marga has done little more than ask the campesinos to politely move and file a request for attention through appropriate official channels. In return, the family house and chickens are forever tended by at least one semiautonomous child. Tit-for-tat, I suppose, but Marga doesn't actually have bulldozers lined up to level the place. Thus, this simple life goes on.

     Referred to as la costa rica—the rich coast—by Spanish conquistador Gil González Dávila in 1522 due to the prominent gold jewelry popular with the friendly natives, Costa Rica was first contacted by Christopher Columbus twenty years earlier during his fourth and final voyage of 1502. Prior to choosing his familiar Latin name, Columbus went by the adopted Spanish name of Cristóbal Colón. In addition to branding Costa Rica's national currency, the colón, his legacy is repeatedly invoked in the place-names of schools, streets and cafes. For example, my room last night in the capital city of San Jose was at the Hotel Meson del Angel, near the intersection of Calle 20 (20th Street) and Avenida Paseo Colón, the main east-west thoroughfare used for travel, festivals, parades and demonstrations. My first authentic Costa Rican meal was devoured in a bustling, blindingly lit, spiced and humid open cul-de-sac set into the side of a battered brick building at street level and grandly labeled Soda Colón. The meat was good. The proprietor was unceremonious but affable. The nine-year-old cashier was serious but helpful from her high perch behind the raised counter. The local crowd was largely ambivalent.
     Ticos, as the locals call themselves (short for hermanitico, "little brother"), have so far struck me as generally friendly and mostly tolerant of my presence. Given their mixed heritage of indigenous tribes, Spanish conquerors, imported African slave labor and white European immigrants, race relations are good. And while I surely stand out as a gringo, I also blend in with a respectable contingent of hardy tourists and wayward expats. Recognizing the former only from a distance, I've already become quite familiar with the latter. It seems the expatriate "community" in Costa Rica is a potpourri (literal French translation, "rotten pot") of the determined and the displaced.

     If my host, Marga, is the determined, as she seems to be, then her resident chef and handyman, James—my impromptu guide and traveling companion during yesterday's unscripted 51-km hike down from Servicentro Chacarita, the abrupt endpoint of my truncated bus ride from San Jose, south into the mountains and up over the clouds—is certainly the displaced.

     But this is getting a bit ahead. And I need a long nap. If things go as they did last night, after an early dinner, Marga will be anxious to "toke up" and discuss my chakras; James, a 65-year-old ex-Jesuit priest, will be repelled by the weed and grump downstairs to get drunk in the kitchen; Marga will fall asleep in her chair. I'll crack open my journal, locate a pen, burn a few candles and begin near a beginning.

Stay tuned for the next exciting entry...


I REPEAT: If anyone actually reads this—now or further along the way—feedback, critiques or encouragement would be greatly appreciated. Please comment, +1 and share at will if it seems worthy.

If I can get enough personal momentum and generate some interest, I may consider launching a Kickstarter campaign to fund the production and promotion of a hardcover illustrated novel. Just a blog for now, but maybe, just maybe...

My Family?

In the end, we are self-perceiving, self-inventing, locked-in mirages that are little miracles of self-reference. 

—Douglas Hofstadter, I Am a Strange Loop (p.363)

Mom at top with oils on display during our
beach house stay on Padre Island when I was maybe 3;
Dad at bottom on a pee break with Eric, me and little Lori K. in the old bus.

  Q: Now tell me, in single words, only the good things that come into your mind when you think about... your family? 

A: My family?

Q: Yes... 

  A: Let me tell you about my family [BANG]

* * *

This is likely to be a long-running work-in-progress post as I currently don't know what to say except that I love them all in spite of the frustrating traits we share. 

* * * 

MOM

DAD

MOM + ME

FAT KID IN A TREE

LITTLE LORI K + UGGY

SIBS + ME

BOY

Words & Works of a Savage Passenger: Prologue

Being; this familiar, unfailing stutter of existence.
Why How Are we here? Yes.
Should you disagree, I will concede,
Perhaps you are somewhere else.
Why How Are you there? Yes.
Hi! So, ‘here’ we are.
Let’s, you and I, relax,
Clear our heads of complexity and conflict
And agree to disagree.
We are simply different
At our cores; opposed.
Poised in rigid relation to one another
As we are to every other,
Each unique among all things
In our structure and evolution;
We stand alone and perfect.

—savage passenger

A critique by @AnonymePlusCritiq (2003)
Republished here without permission.

A singular word is art. One of the smallest in the book with the most expansive of definitions. That single syllable embodies the shining brilliance of individuals, of whole cultures on every continent of this Earth. From breathless mountains down uncertain slopes; through hopeful hills, plains give way to desert. And that’s a lot of ground to cover. 

To get moving, let’s just say, I’ve been around. And I’ve been lucky to see so much. I’ve been driven to seek ever more. Then, when sufficiently moved, I write. I write about the things that move me. Those things that catch my eye, that snag my mind and draw me close against my will or without my notice then propel me forward in awe. 

It’s a revelatory journey between peaks. 

I’ve been blessed to summit more than my share. I’ve had the distinct pleasure of recounting the thrill, often right here on these very pages, as best I can, to you, the overwhelming majority of high-functioning, productive, reasonably inquisitive individuals with a shared appreciation for the finest examples of human expression. 

Those melodic displays of poetic imagination: they jar the senses and elevate the soul; they demonstrate beauty, illuminate truth. They defy explanation. They refuse replication. 

I’ve had the humbling honor to herald the Best. 

I’ve had the humble duty to tread the worst, to wade ever on. 

You see, the peaks are distanced by valleys of varied depth and deposit. I swear I’m knee-deep in crap more often than not. However, until recently, I was proud to say I’d never lost my footing. I’d never stubbed into a log of such offensive size and fibrous consistency as to deflect my forward momentum and lever me face-forward into the surrounding muck. 

Frankly, I’m not yet prepared to speak of it at length. To those who would heed my warning: step around.

To the rest: sandals are a bad idea; don’t bother brushing.

@AnonymePlusCritiq is a veteran arts critic and contributing editor at Barrelmonkey Press. His opinions are his own and not necessarily those of this publication.

The End of Time? Or Soothing Creams.

I suggest that the brain in any instant
Always contains as it were
Several stills of a movie

They correspond to different positions
Of objects we think we see moving

The idea is that
It is this collection of stills
All present in any one instant
That stands in psychophysical parallel
With the motion we actually see

—Julian Barbour, The End of Time (1999)






This collection of stills. 
I'm making an effort to fill my mandatory downtime with uplifting personal productivity. It ain't easy. My previous post (still unfinished) was cathartic until boredom set in. I long ago learned to harness my attention deficit by noodling with several projects in parallel; as soon as one becomes too important/ too near to completion/ too boring, my work-avoidance system kicks in and almost any other task can strike me as fascinating. Rather than shave or clean the kitchen, I indulge tangents and let myself fiddle with something previously left in stasis until it becomes too important/ too near to completion/ too boring. This may not be the work ethic of prolific artists past and present, but I enjoy it. Being an underachiever—possessing no drive to be seen achieving—everything I do is for personal gratification. This means finishing something always takes a backseat to working on something. I may never cross a finish line, but I am never idle. I keep myself occupied and that makes me happy. All of this being said, I'll admit to appreciating the satisfaction inherent in "completing" a creative project. I just haven't experienced it often.

This brings me back to the subject of my previous post: terminal illness—brain tumors. Even I would've expected some profound driving kick in the pants. Approximately half of those given my diagnosis are dead within 5 months. From where the fuck else should I expect motivation to spring? I'm cruising through 11 now. People talk about "bucket lists" but I don't have one. This shit should be feet-to-the-fire compelling, but my feet are still cool and a bit moist in my woolen socks—what's that about? Even so, something is going on. I wouldn't be rubbing my writing gland raw against the chafing of these blog posts if not attempting to heat something up, cause a little swelling, a rush of oxygen-rich blood to my functional parts, a light fever maybe leading to a creative swoon. But still, almost nothing. Almost... It's possible I smell something. It could be my imagination, but there may be a tiny ember dimly aglow. ...Or it could be a rash.

Now I'm digging through old notebooks and hard drives for kindling (and soothing creams). I don't necessarily expect anything to actually burn, to blaze up and fuel me through some opus. It's a warm, obvious fantasy, but impossible to indulge for long due to its almost total lack of cogency. I see no clear bright horizon beyond which glory must wait. And I see no particular vehicle as suitable transport to carry me through a quest for one. But I won't be idle. I might do donuts or veer into curbs and through ditches and barricades and police tape, but I'll keep moving. Maybe I'll bump into something useful, something to inspire...

Like this old fanboy email written to one of my favorite mathematical physicists, Julian Barbour.

FirstName: geoff

LastName: gibson

Country: us

Sent: Sunday, May 2, 2004

Message: Dear Dr. Barbour,

My name is Geoff Gibson. When pressed, and with growing frequency and confidence, I claim to be an artist. Though I have no formal science or mathematics education (beyond high school was art school), I am fascinated by fundamental physics. I've read countless books of increasing depth and detail and have gained a satisfying grasp (for my own purposes) of many key concepts. Several authors have managed to lead me through explanations and leave me grinning when I get it. That elusive surge of comprehension, however fleeting, powers me past abstract math and migraines.

Not being familiar with your name or work, I was put off by the article in Discover Magazine, Dec. 2000. Your assertions seemed novel, if a little silly (my deepest apologies). After hearing you speak on NPR, I decided to give The End of Time a try based on your apparent sanity, obvious intelligence and pleasant personality. I was sure you were wrong through the first half. By the two-thirds mark I was in awe. Far more than self-consistent, your theory was somehow consistent with the intuitive images and impressions I'd been collecting through years of reading and years more of living. Once it popped into place, it was obviously, beautifully, simply right. 

This recognition and subsequent adjustment to my worldview are sources of joy, increasing comfort and ongoing frustration. My brain seems just big enough to accommodate intuitive images without the whys and hows and words required to relate them to others. Not being a physicist, or more, being an artist, my attempts to discuss these new ideas and implications with friends have not made me any new ones. Luckily, the few I have are good and tolerant. Enthusiastic, inarticulate musing on the fundamental, counter-intuitive static nature of reality is a quaint affectation they've decided to accept as long as I just shut up occasionally. 

On that note, I began this message to gush gratitude and lob questions. Restraining the former (somewhat), I'll forgo the latter. Though I have many, I fear they are not yet well formed (read: stupid). They have, regardless, led me to further reading on topics emerging since Alpha: game theory, evolutionary biology, consciousness, human nature. All equally impossible for me to relate in conversation, but exhilarating in the richness they add to the structure of me. It's this thrill that has motivated me to actively exercise my creativity for the first time in years. I now (think I) understand the act of creation to be a manifest iteration of that first deviation and an irrevocable addition to whatever comes next. 

Pretty cool. 

I humbly offer my thanks for your insight and the kind gift of abutting your Now to mine.

Sincerely, 

Geoff Gibson

And the kind and genial great man's reply.

From: Julian Barbour

Sent: Friday, February 13, 2004

To: geoff gibson

Subject: Re: Feedback

Thank you for your very kind words. I am sure there are lots of things we could discuss together. If ever you are over in England, do consider a visit. I am in the process of creating The Leibniz Institute and hope to welcome a few paying guests to help pay for the research activities. In the meanwhile I wish you the very best of success with your creative work. Personally, I think the intuitive insights of artists are often very close to the physical bedrock of the world. 

Best wishes, 

Julian Barbour

Just a few days ago I checked his site again for recent publications and was pleased to find several I hadn't noticed before. I'm currently bouncing between the following four papers:

• The definition of Mach's Principle | Abstract: Two definitions of Mach’s principle are proposed. Both are related to gauge theory, are universal in scope and amount to formulations of causality that take into account the relational nature of position, time, and size. One of them leads directly to general relativity and may have relevance to the problem of creating a quantum theory of gravity. >> http://arxiv.org/pdf/1007.3368v1.pdf

• Conformal superspace: the configuration space of general relativity |  Abstract: It has long been considered that conformal superspace is the natural configuration space for canonical general relativity. However, this was never definitively demonstrated. We have found that the standard conformal method of solving the Einstein constraints has an unexpected extra symmetry. This allows us to complete the project. We show that given a point and a velocity in conformal superspace, the Einstein equations generate a unique curve in conformal superspace. >> http://arxiv.org/pdf/1009.3559v1.pdf

• Einstein gravity as a 3D conformally invariant theory | Abstract: We give an alternative description of the physical content of general relativity that does not require a Lorentz invariant spacetime. Instead, we find that gravity admits a dual description in terms of a theory where local size is irrelevant. The dual theory is invariant under foliation preserving 3–diffeomorphisms and 3D conformal transformations that preserve the 3–volume (for the spatially compact case). Locally, this symmetry is identical to that of Hoˇrava–Lifshitz gravity in the high energy limit but our theory is equivalent to Einstein gravity. Specifically, we find that the solutions of general relativity, in a gauge where the spatial hypersurfaces have constant mean extrinsic curvature, can be mapped to solutions of a particular gauge fixing of the dual theory. Moreover, this duality is not accidental. We provide a general geometric picture for our procedure that allows us to trade foliation invariance for conformal invariance. The dual theory provides a new proposal for the theory space of quantum gravity. >> http://arxiv.org/pdf/1010.2481v2.pdf

• The link between general relativity and shape dynamics | Abstract: We define the concept of a linking theory and show how two equivalent gauge theories possessing different gauge symmetries generically arise from a linking theory. We show that under special circumstances a linking theory can be constructed from a given gauge theory through “Kretchmannization” of a given gauge theory, which becomes one of the two theories related by the linking theory. The other, so-called “dual” gauge theory, is then a gauge theory of the symmetry underlying the “Kretschmannization”. We then prove the equivalence of General Relativity and Shape Dynamics, a theory with fixed foliation but spatial conformal invariance. This streamlines the rather complicated construction of this equivalence performed in. We use this streamlined argument to extend the result to General Relativity with asymptotically flat boundary conditions. The improved understanding of linking theories naturally leads to the Lagrangian formulation of Shape Dynamics, which allows us to partially relate the degrees of freedom. >> http://arxiv.org/pdf/1101.5974v3.pdf

Once through these papaers, I plan to finish my second pass through Benjamin Solomon's An Introduction to Gravity Modification (2012). Then I'll gleefully give Barbour's The End of TIme its fourth read. While pushing through such material, I may not be playing my guitar, writing my novel or painting a masterpiece—or base jumping or helping poor people or stray animals—but I find it impossible to conceive of the time as anything other than well-spent. It's good for the melon and my melon is in dire need.

Expediting Progression Free Survival

I woke to a chilly day in Dallas — 27° w/constant freezing drizzle, ice on everything.
Zhora and the boy in hibernation.
Now I'll try to finish this toss-off-turned-beat-down of a blog post started yesterday. 



FINISHED OUT THE STORY OF MY HOSPITAL STAY

2nd DRAFT DONE AS IT'S GONNA BE (SUN DEC 8)

"The being whose analysis my task is, is always I myself. The being of this being is always mine. In the being of this being it is related to its being. As the being of this being, it is entrusted to its own being. It is being about which this being is concerned."  

—Martin Heidegger, Being and Time (1927)

Being is my concern. 
As all healthy children, I was born a natural scientist, pre-wired to suss out the rules governing my environment, the behavior of others around me, and eventually myself and what odd place I occupied in the chaos. My good luck was being born to a family where such stuff was not unexpected, misunderstood or misdirected. I was always allowed to play and explore and experiment with dirt and water and fire and sharp things and bugs. I never liked or did well in school, but I never stopped the initial program of learning. When something old starts making sense because I learn something new, I get a pleasant little body-buzz of that’s how it works! Or an occasional great WTF. Both feel good.

Since the brain tumor diagnosis last January, I’ve naturally turned my attention to learning new things in the service of making sense of the old problem called getting-sick-and-dying-young. I’ve studied cancer in general and my specific melanoma (w/BRAF V600E mutation) closely enough to get the gist. Nasty little beasts. I understand how and why I have cancer in my brain. It’s unfortunate, but it makes sense. It’s unpleasant news to all concerned, but it’s not unacceptable; it’s not a punishment or cruel twist of fate. It’s a fact among many comprising my current state-of-being. My Da-sein (German for "being there") according to Heidegger’s Being and Time, which I’ve only just begun reading:


We must analyze a fundamental structure of Da-sein: being-in-the-world. Da-sein is not a structure which is pieced together, but rather a structure which is primordially and constantly whole. It grants various perspectives on the factors which constitute it. These factors are to be kept constantly in view, bearing in mind the preceding whole of this structure. Thus, we have as the object of our analysis: the world in its worldliness, being-in-the-world as being a self and being with others, being-in as such—etc., he lost me here...

[blink-blink] Where was I? Oh,

Just as anyone who’s lived a reasonably active life, I’ve had ups-and-downs and profound turn-arounds; I’ve bottomed-out a few times and bounced back. With each change of trajectory, the previous path remains accessible only via sketchy memories of things learned up to the point of redirection; the rest is all undifferentiated gray fuzz. The new path ahead is usually a shiny blank inviting further exploration while offering almost no guidance. Life. It is only this wonky assemblage of discontinuous fragments hot-glued with good sense into a self-supporting structure recognized each time I wake from a dream that makes the madness enjoyable—if all things weren’t so fascinating it might be a huge bummer.

BREAKING NEWS:

Nelson Mandela (1918-2013) died today at the age of 95.

Lucky bastard…

Where was I?

The science behind our latest understanding of cancer and various approaches to treatment is nearly overwhelming in scope. Progress comes from all directions across disciplines, built on over 50 years of rigid research, record keeping, trial and error. Current information technology and data mining/analysis techniques allow researchers to do “meta studies” of past studies, comparing histories, clinical results and previously unrecognized useful minutiae. New findings are so quickly reviewed, published and shared that notable progress seems to pop up monthly. There are well-identified genetic factors contributing both to cause and cure; there are environmental factors from the time of your birth; possibly factors contingent on the quality and location of your birth, definitely the quality of your development, activity, diet and outlook. There are proven physiological and psychological factors constantly contributing to the balance of our health, either boosting or crashing our immune systems; building or crushing our will.

This is a very interesting time to be a cancer patient in the First World. The speed of discovery is driving a flurry of treatment breakthroughs being vetted in successful trials and fast-tracked for review and approval by the FDA. When my treatment options were weighed 10 months ago, I was fortunate to count among a subset of melanoma patients distinguished by a well-studied mutation to the BRAF gene located on a long arm of chromosome 7 (one of 23 pairs of chromosomes in the human genome housed in each cell of the body, cancerous and otherwise… it’s a long story. See below if interested[1]). The BRAF gene is responsible for expressing the B-Raf protein used within cells for signaling and directing cell growth. This mutated signaling is precisely targeted and disrupted by the latest and greatest of a class of drugs called B-Raf inhibitors. The FDA approved the very promising Vemurafenib (the name cleverly cobbled from V600E Mutated BRAF Inhibition) for late-stage melanoma in late 2011, about one year prior to my diagnosis. However, at the time it was not approved for brain metastasis such as mine, so not covered by insurance. The brain is a tricky place for drug therapies due to the very resilient blood-brain barrier keeping most chemicals out in misguided defense of the brain. Luckily, my oncologist had observed anecdotal evidence of Vemurafenib penetrating the blood-brain barrier and benefiting patients like me. My very prominent and easily observed brain tumors combined with my otherwise freakish good health made me a model study candidate. Thus, I got access to a cutting-edge therapy, all bills payed. And the data collected, if positive, would contribute to future FDA approval and access for others in my situation under coverage of their insurance. And it worked for about six months. After that, observed tumor shrinkage became stability, then slight growth, then a population of resistant cells formed a new lesion next to an old one. Then we bailed on the study in favor of some quick radiation to zap all the old spots and the new resistant one at the same time. This route could have been taken from the beginning, but irradiating the brain, even with today’s Stereotactic Radiosurgical state-of-the-art, is undesirable if a good drug might kill the tumors with less peripheral cell damage. Unfortunately, during the few weeks between getting off the study drug and starting the radiation treatment, all hell broke loose. A hires pre-zap MRI showed an additional scattering of new small lesions. Fuck this. Time for scorched earth. We zapped everything with three sessions over the course of two weeks. I felt unwell and spent a week lying on my sofa renting movies on my laptop. Then I got brain swelling due to my robust immune system rushing to the surgical sites in my skull where it really had no room to work. This caused nerve pain from the top of my head down through my spinal cord to the once stretchy bundles in my legs as if a great connecting rubber band was suddenly half its length and brittle to the point of snapping. Then a new right temporal lesion in conjunction with a seeping hemorrhage spent the weekend shorting out control of my left leg, starting at my toes and progressing up past my ankle to my quads. By Sunday night my foot was completely dropped at the ankle and I felt weakness increasing in my knee. Monday morning, with no motor control below the hip, I loaded my backpack with devices, books, clothes and snacks, woke my son and had him drive me to Baylor where I limped into the ER and spent a week under observation trying to head off further functional collapse, such as breathing, heartbeat or consciousness. I had nurses, doctors and pastors stopping by at regular intervals encouraging me very tactfully to complete the "advanced directive" paperwork. This would save everyone the hassle of struggling with conflicting emotional interests by officially stating my personal preference for extended life support in the event that a creeping brain bleed blew my master fuse. This is not a DNR (Do Not Resuscitate)—if my heart stops, please restart my heart; if I stop breathing, put me on a respirator. However, if my brain fries to the point of voluntary and involuntary systems shutdown; if I suddenly can't tell you what I want and two doctors say they can't fix me, you can trust that my advanced directive is "pull the plug", chop-chop.

That was the week before Thanksgiving—the week I was supposed to spend in Jamaica with friends. Ouch. Once again, I recalibrated for the unexpected new trajectory and actually had a pleasantly relaxing time with the wonderful staff of nurses and doctors at Baylor Hospital. They are badasses of care-giving, ninjas of positive attitude. Accepting the situation and focusing on survival, I felt no weight of daily responsibility. They enjoyed my music and good humor and I enjoyed letting them fix me. If I must spend time in a hospital, Baylor is the place for me.

By Tuesday the pain was reduced to almost nothing with the use of dexamethasone, a corticosteroid to suppress my immune response and reduce inflammation. The worst discomfort beyond that point was my lame back getting achey from lying so still. Under normal circumstances, at home, I don't often sleep late because my body begins to ache after six hours in bed. I always get up and get active, go for a bike ride. Twelve to twenty-four hours with only minor pee breaks is a recipe for stiff and grumpy. But they gave me dilaudid on request, so my nights were restful. On Wednesday, one of the rotating internal medicine doctors came by and got my story. She agreed that a fresh CT scan was probably a good idea (I'm constantly asking for additional scans to track activity of the front line battles in my head). The transporter showed up in about an hour, browsing through then stowing my chart as he rolled through the door. I sat up and transferred myself from the edge of my bed to the lowered gurney. He smiled and said, "I'm impressed." "Thank you," I replied, "I'm looking forward to this little field trip." My chauffeur rolled us down a dozen hallways, down two elevators, up another, then through a few quick turns to reach the lab. He matched the height of the gurney to the CT bed and locked the wheels as the tech came out from his control room to help. He began reaching across the bed to drag me over, but the transporter said, "He's got it." I laughed, rose on my elbows, hooked my good right foot under by bad left calf and in one, two, three awkward squirmy side-shuffles got across and up to get the back of my head positioned in the little clamp. The tech said, "I'm impressed."

I enjoy telling my story to the various hospital staff I encounter. They're usually outwardly relaxed and always helpful, but all they ever have to go on is the staccato history laid out in a metal-bound flipchart. My situation was an alarming read in January. The current draft seemed to give people a jolt. When my scan was complete, the tech strolled out and began to unbolt the upper portion of the clamp to free my face, asking how I felt as he did. I smiled and transferred myself back to the locked gurney. The tech asked when all of this started, so I launched into a condensed version covering everything from my 2012 skin cancer excision, all-clear follow-up scans, January's cycling seizure, brain surgery, eight months of experimental chemo, the recent tumor shitstorm, radiation, swelling and my new floppy leg and trip to the ER. He shook his head and shook my hand. I gave him a sly nod-n-wink and asked how my scan looked. I knew the techs never offered up info, that was for doctors. But I'd already engaged this one in a technology discussion as he strapped me down earlier. He was a twenty-year veteran at this job and got to see things advancing so quickly it was hard to follow. He sat in front of monitors and got real-time views of everything inside me. "Did you see the bleed? How big is it?" He grinned, "I'm not supposed to discuss this stuff with you," holding both hands in front of his face, thumb-to-thumb, middle fingertips together indicating a rough circle the diameter of a softball. "I don't see people like you conscious, up and talking, moving around." The transporter chuckled, waggled his head and kicked the wheel locks loose. I nodded as we rolled out the door, "I keep hearing that."

Good news came Wednesday afternoon. My oncologist was sure he'd deciphered and organized the mess we were in: 1) The new big lesion on my right temporal lobe gave the appearance of being radiation resistant (mentioning this to my friend Patrick evoked a quick That's a thing?!—apparently so). It seemed to have grown a few millimeters since the last zap and was at least partly directly responsible for my creeping loss of function. Then, due to its filthy, weepy nature and added pressure from post-zap swelling, the surrounding bleed was wreaking havoc across the surface of my brain; 2) The study drug, Vemurafenib, stopped three weeks earlier in order to promptly deal with a new population of resistant cells, was apparently working a lot better than we'd realized. The surge of new tumor sites was likely due to the environment in my skull suddenly being less hostile to the little bleeding meanies; 3) He had a new drug for me, Dabrafenib (brand name Tafinlar from GlaxoSmithKline). The cutting edge in B-Raf inhibitors, unavailable when things began in January, it received FDA approval as a single agent therapy for melanoma brain metastasis just five months earlier in May. The possible side effects were roughly equivalent to Vemurafenib (which I'd handled with little trouble), the dosage was lower—two little 75mg capsules an hour before my first meal and two more two hours after my last meal for a total dosage of 300mg daily (Vemurafenib was four 240mg pink Centrum-sized horse pills twice daily for a whopping total of 1920mg)—and the objective response rate (OOR) was significantly better. Unfortunately, the drug was still hard to come by and it could take a few weeks for the order he'd placed to come through, complicated by the approaching holiday weekend. In the interim he had a few samples in a personal stash that should cover the gap. He handed me a little bottle with 28 capsules (14 doses, one week's supply) and said he had one more in reserve if I needed it before delivery of the big batch. He was confident, given my positive reaction to the older drug, that we'd see improvement within just a few days, indicating tumor shrinkage and observed as a return of motor function. Science, fuck yeah!

Thursday through the weekend and following Tuesday were considerably more upbeat. By Friday, after only two-and-a-half days with Dabrafenib (5 doses), the drifting weakness that had progressed to my left shoulder and elbow, requiring me to summon assistance for potty breaks, reversed. Before sunup Saturday morning I detected sketchy voluntary control at my hip and some at my knee with concentration. Of course I didn't sleep much after that. I spent hours in bed focusing on the leg, trying to move it at different joints—I think I was doing it wrong, but it's hard to keep focus from turning to frustration turning to straining to being the closest I'd come to shitting myself during the entire ordeal. But it moved (the leg, not the bowel). The recovery didn't come as quickly as the onset, but it felt like I might get back the ankle and toes in just three or four days (that hasn't actually occurred yet, but I'm still hopeful—home health physical and occupational therapy starts next week in earnest, two visits a week from each). Regardless, the mood was such that I forgot to turn in my advanced directive and wasn't bothered for it again.

My oncologist and the great PT/OT staff conspired to get me cleared for release by Tuesday afternoon in time for a much anticipated Thanksgiving weekend with family at my brother's place in Tyler, TX. After nine days in the hospital and several days of progress, no apparent side effects from my magical new drug, a handful of successful cane-assisted trips up-and-down the halls and up-and-down a flight of concrete stairs (iffy at best), I got my walkin' papers. My buddy Cecil picked me up at 5pm and ran us by the neighborhood Walgreens to put in my impressive list of new prescriptions. Taking an hour to fill, we bolted down the street to Burger House for chicken-fried steak sandwiches, sodas and more french fries than we could choke down. Bloated on system-shocking fast food and happy, it was back to the drug store for meds and provisions. I cheerfully flopped my way around the store behind a little grocery cart, impulsively selecting random crap from every isle; miscellaneous art supplies, snacks, light bulbs, tissues, batteries. Cecil helped me get into the house, get the snacks up the stairs and left me to settle in. Three hours later I was comfortable on my upstairs studio sofa with Zhora and a fine tequila. My father would pick me up in the morning for an extended week in the country. The end.

mostly unfinished crap below—maybe more later, maybe not 

...

This is still a half-ass work in progress—for anyone interested, I'll finish later. Some friends are swinging by on their snow mobile to give me a lift to the pub. Wish me luck with a floppy leg, cane and ice-covered sidewalks. 

mission accomplished

DRINK ON!   OFF

- - - - - - - - - - -

What I’ve most enjoyed in my personal research are the recent leaps in genetics and the emergent biochemistry of metabolism, cell growth and mutation. My melanoma is a variety occurring in approximately 50% of the those diagnosed. It’s distinguished by a mutation at V600E,   ???    The BRAF gene is located on the long arm of chromosome 7 and is responsible for expressing the B-Raf protein used within cells for signaling and directing cell growth.

???

     ?????  

___________

[1] There are 46 total chromosomes in the nucleus of each human cell. Proper chromosomes occur in 2 sets (autosomes and allosomes) of pattern-matched pairs: there are 22 different autosomes, each paired with its twin in a duplicate set of 22 for a subtotal of 44 chromosomes occurring equally in both males and females; there is one cross-matched set of two allosomes, or sex chromosomes (known as X and Y), which occur in 2 combinations to determine gender with a set of Xs (X+X) for little girls and a mixed set of one X and one Y (X+Y) for little boys. Individual chromosomes are the larger emergent structure formed by tightly packed, intricately wound single strands of DNA
23,000 human genes  ???

...

Every human cell consists of an outer boundary membrane filled with cytoplasmic jelly (80% water). Within this tiny, cloistered jelly domain buzzes a team of specialized machines called organelles—they smuggle material through the membrane, juggle proteins around inside, translate, sort, fold, package and transport. Organelles labor tirelessly in the shadow of the alpha organelle, the nucleus. The    ???    inner sanctum of every cell, the nucleus contains, protects and utilizes our genetic material’s inherited code for the expression of proteins and a few functional micro machines used for reading, writing, repairing and copying. Every nucleus contains   ?????

This article posted 09/30/2013 at 9:13 am offers encouraging news.



The Next Showdown in BRAF-Mutant Melanoma



"Not only are both GSK agents already approved in the U.S., but GSK has already received FDA priority review for accelerated approval of its combination based on the randomized Phase II data, with a Prescription Drug User Fee Act (PDUFA)* target date of January 8, 2014."



Link — http://www.obroncology.com/blog/2013/09/the-next-showdown-in-braf-mutant-melanoma/



*PDUFA Legislation and Background"Since the passage of PDUFA, user fees have played an important role in expediting the drug approval process."



Link — http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm144411.htm