Normalized

Woke up @ 4am this morning thinking about the brain scan/MRI today at CU. Finally rolled out of bed @ 6. Quiet time. Work out. Took Elsa for short run. Made breakfast for the boys. Shower. Ate gruel. Had green drink and green tea along with tumeric concoction. Fought off a few dozen marauding crescendos of fear. Hit my knees a few times. Tried to get myself in a ‘whatever happens happens’ state of being and remain there. Sit. Stay boy stay. Did I mention they were checking my brain for any evidence of metastatic tumor progression today? Fffffreaking out. No. Stop. Hello knees, again.

Late to CU hospital in Denver. Blame Denver traffic. They (being front desk) should know better. Come to think of it, they likely do know better and so do I. And I will, ah, do better next time. But this time blaming Denver traffic is sooo much easier, perhaps.

Nurse has trouble finding a vein. I reach into my ‘small talk/humor with nurses bag’ and tell him ‘how I found it pretty hard to get a line in this morning too…when shooting heroin.’ He smirks. I wonder if I have tried that one on him before. He finally gets it (not the joke, that was kind of stupid, the vein) and apologizes for impending deforestation of hair follicles on my arm. I don the funny gown. Don’t tie pants very well. Butt likely hanging out. I’m not really that concerned. Should I be? I have other things on my, um, mind (hee hee). But I mean this isn’t prison…even though they are sliding me into a narrow cell. I fall asleep listening to whale calls and thinking about potential alternative therapies. Gripping subject matter, obviously. Wake up snoring/drooling/hoping they took some good pictures with a definite opinion about what might constitute ‘good’ in that context.

Took elevator to Breeze’s office. Couldn’t remember which floor at first. You would think we could get there on muscle memory alone, but no. Short wait. Surf inspirational stories and sayings on phone along with latest hockey news, tech updates, FB, outlook, word of the day. I think I probably used to sort through all that stuff and try to predict, as though reading tea leaves or palms or chicken bones or something, what the news might be based on a kind of wacked ‘Conspiracy Theory’ sort of logic. But, not this time, not going there, I’m kind of over that, maybe, till next time when I decide to sacrifice a goat in the waiting room.

Filled out the same, requisite paperwork with a pen taped to a white plastic spoon cuz you know, in case you didn’t know, we live in a digital age and this time when I get to the question, ‘Are you pregnant or currently nursing’ I might just fill in the black circle next to ‘Hell yes.’ They check my weight (um, really man?), blood pressure (high) but pulse is low cuz I’m gangsta with antifreeze for blood, or something like that. And then it hits me, somewhere between Sarah reassuring me that all is good and going to the bathroom to get one more plea from the parquet floor before they deliver the news, this is normal. To use an overused cliche (um isn’t overused the definition of cliche?), this is the new normal.

How many times have I lived the above, before, in some form or fashion over the last 4 plus years? By my estimates I’m converging on 50 MRIs, if I haven’t already summited that peak.  The thoughts, feelings and events described above, are basically the same, every time. Its groundhog day at CU hospital, again. Its groundhog day at CU hospital, again. Its groundhog day at CU….

Thankfully the results were “Normal” too or, let me clarify, fit the “New Normal” mold. In my case, having dozens of spots light up like Christmas lights on the MRI is normal. Normal also means those lights aren’t getting bigger or brighter. Normal is good.

Hopefully this doesn’t come off as too much insipidness and whining. Groundhog day, whaa whaa whaa. Poor me. There are friends and acquaintances right now dying in the hospital from abnormal scan results. I am, as far as I know, human and would like to be told, ‘holy cow dude you are all clear, no X-mas lights, that’s a fricking miracle’ instead ‘holy cow dude 4 years and you are still here, that’s a fricking miracle.’  There are more and more friends and acquaintances getting news like that too.

But in the meantime I will settle back, for the next few months hopefully, into the new normal because that’s pretty good.

PS. Thanks to those who have been wondering where the hay I have been. I picked up the ‘writing bug’ again while in the hospital in May and have been working on the next, probably quite crappy, American novel instead of ‘visiting’ this page here. In doing so I am reminded of that character in Camus’ “The Stranger” who is stuck writing the same page, day after day, of the book he never completes. I am also reminded of that late, great television show, ‘American Idol’ and all the cringe worthy moments in each season when intrepid guys and girls would swear on the blood of their mommies and daddies that they knew, without a shadow of doubt, they were most certainly the next great, american idol. Anyways if/when I get more than the couple of hundred pages I have written done I will likely post here and let the William Hung comparisons fly. Hey Stage IV cancer patients are still allowed to dream big right?

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Hello Cleveland

“Wherever you go there you are.” Dang it. Here I am. Even on vacation, at work, running up the mountain, lying in a hospital bed, reading a book, writing, whatever. There I am in that moment. I used to love an altered state because, though I’d sometimes spend lots of time trying to bend the people, places and things around me to various and often sordid views of ‘perfection,’ in the end it didn’t matter. A closed room, curtains drawn, okay, no problem. Sitting on hill, mountains in front me, blue skies overhead, same thing. Didn’t matter. The outer world was never so fundamentally important as an altered inner one.

Why do I bring this up? I don’t know. I guess I have been struck lately with beautiful Colorado. Its so green. Am I just now seeing this? Or snapping out of that? Maybe its the new glasses. No. It occurs to me how many times, having lived here 20 years, I have failed to notice the undeniable, almost unbearable at times truth about CO. Taking it for granted, driving underneath the shadow of the majestic Rockies I am often way, waay, waaaaay too preoccupied to notice. And in thinking about that I am struck with the truth, at least for me, that it matters only a little where I call home. Its where I’m “living” that’s important.

Growing up I had this idea that there were the beautiful places and then there were the hairy armpits, the spidery places. I remember hearing about a river in Cleveland that caught fire, like 20 times or something. Yeah a major tributary, you know with like water and maybe some fish. That stretch of unlovely was in fact so polluted there were no underwater citizens swimming in it. Only fires living on top of it.  Those two, fire and water, don’t make a great combo meal. Flaming h2o, scorching waves, and burning waters definitely constitute an armpit worthy designation. Pour me a glass. Not.

The irony is/was I wound up spending a year there as a freshmen in College. And you know Cleveland was a beautiful place. Been to Pittsburgh too. Steel mills and all, fricking gorgeous. Sitting in the backyard in Bracknell, UK (a place not known for being lovely) and paradise found. Turns out there are amazing places everywhere, even miles behind the enemy lines of an armpit. I am sure the same could be said of many other locales suffering the same perceptions- Baltimore, Detroit, Yo Momma (kidding), other.

A guy named Jimmy Hodges used to say in a meeting that he could live in a dumpster and be happy, that the ability to do so was his true freedom. He’d also say that he was a frequent flier to the most spectacular places imaginable by virtue of closing his eyes. I wanted him to break me off a piece of that particular kit-kat bar. But he couldn’t. What Jimmy claimed to have he got not by muttering the right incantation or even living in a dumpster in some sick, twisted turn/Vulcan mind trick on the nature of beauty. It was how he lived his life, paradoxically, on the outside that made his inside idyllic. That takes work and not the kind of involved with purchasing a plane ticket to go on vacation or, heaven forbid, the grave and inherently serious stresses involved in picking the right shade of paint for the study or right material for the kitchen counter top…

There was a documentary produced around four or five years ago called “Happy” that seemed to confirm these vary same kinds of assertions. The film discussed how outer conditions and circumstances only accounted for ten percent of a person’s total happiness.  Places, along with possessions, had little impact on happiness. In fact going after happiness made the thing that much harder to catch, like trying to lay hold of a big, bright fish only to have it squirm from your hands. At the same time a guy pulling a rickshaw from a slum in India, raw sewage flowing by his front door (likely not fireproof), could claim to be the luckiest man on earth. What the why? Truly happy people (and I think in general the US, the richest country in the world, was rated 27th on the happy populous scale) have people to love and be loved by. Instead of seeking the elusive Big Happy, guys like the rickshaw driver seek to help others, to get the hay out of the house and pack a little something into the stream of life. As the Roko Belic, the filmmaker behind the documentary said, “The greatest lesson I learned while making this film is that my pursuit of happiness is not about me. Its about our relationships and how we help each other. Its about us.”

Okay, everybody hug it out. Right now.

Or not…

 

 

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The escape before the escape

Everybody loves a great escape. It’s woven into our story telling fabric. Joseph Campbell talked about it in ‘Hero with a Thousand Faces.’  Looking at countless myths from an exhaustive list of cultures throughout recorded history, Campbell found a cadence and rhythm. The same blueprint sits stolidly behind westerns, romances, action flicks, comedies, crime dramas in Greek, Latin, English, Spanish. The pattern represents universal, eternal themes woven into our collective understanding of what makes a “great” story, whether we are blissfully unaware or not as we park it before the Saturday matinee with a bag full of popcorn.

So what about escapes? Where does Houdini fit into the hero’s journey? Let’s see stage 8, ‘THE ORDEAL’ …near the middle of story, the hero enters a central time and space to confront death and/or face fear.  Out of the death he or she emerges with new life. Think Luke Skywalker getting dragged under the water in the trash compactor (Lucas was a celebrated Joseph Campbell fan); or Snake Plisskin in “Escape from New York” forced to fight the super fat dude which seems sure to equal super fat dude death; or Sally telling Harry they can no longer be friends after a spontaneous late night tryst.  In each case we’re left wondering if our heroes are goners this time, if its indeed over for our fearless friends; only to have them return from the abyss, often possessed with new powers and abilities. There are, if you want to get metaphysical, some even deeper and more powerful stories. This is death/life/rebirth/escape story is some primal stuff that resonates with us.

Anyways, I got to thinking about this the other day when a friend of mine forwarded me an article about some of Stephen Hawkings latest work with black holes. B-holes have been one of the biggest, baddest boogie men of modern science, so big and mean that only analogies seemed capable of describing these cosmic prisons, deepest darkest pits, demons that swallow everything, neither light or thought can escape. The black hole problem – namely the impossibility for escape and the reality bending implications they had for the theory of general relativity – has been swallowing up scientists since Einstein proposed them.  There was, many concluded, indeed no hope and no escape…um until the news the other day when Hawking announced he had, that he and some fellow erudite dudes proved it was possible to climb out of the hole, at least from the relative comfort of their 2-D chalkboard, .http://www.nytimes.com/2016/06/07/science/stephen-hawking-black-holes.html

This got me thinking though about what it is that enables an escape to occur in the first place…What do you do when confronted with a doozy? Its sucking you down or perhaps has already swallowed you whole and your a-stewing in acerbic juices? Its probably clear what we shouldn’t do in these case, if we can help it, however tempting that may be.  I mean what if Luke says “That’s it I’m done;” or Snake lays down so Slog can beat him pulpless; or Harry decides its pointless to go find Sally…”forget it man I give up.” Not a great story in those cases unless you are like writing an “art film” and come to think of it that is probably still going to make for a pretty crappy story (sorry, I bow before the universal story telling pattern).

The first step to getting the hay out of a black hole seems to be willingness. The willingness to believe that perhaps-maybe-possibly-conceivably and despite the “evidence” (real, imagined or otherwise) that a problem can be solved. This the escape before the escape. If Hawking and Co never said “maybe” there would be no newly published solution.  And then there is this whole question about precedence. I mean did the solution not already exist before they proved it did? Just cause it is an equation on a whiteboard now, that doesn’t necessarily mean that it wasn’t  already on the chalkboard right?

I found this hopeful for reasons I can’t quite articulate or fully describe…and wore out my delete and backspace keys to prove it to myself here. Either way, back to metaphors. I mean what does a black hole really represent? When I read the article I thought of stage 8, the ORDEAL, as in death – perhaps the greatest black hole someone, anyone, has to face. Good/bad/right/wrong, atheist or believer or I-don’t-know-er, will men/women someday be able to mathematically show there is no death? The foundations seem, at least to my simple mind, already there. Thoughts never really die. Light never actually fades. They just go somewhere else. The universe is constantly recycling. Just because we have not ‘proven’ life goes on does not mean it does not already go on, whether we know it or not. I mean they just kicked a black hole’s ass right? What’s next man?

This applies to cancer as well. I have had 98 black holes in my head and many more in my lungs, liver, and stomach. Does this mean, when the doctors gave me the news there was no escape? Apparently not. I’d do well to be willing to maybe-possibly-conceivably believe that the next time I am faced with a cosmic dark spot in my universe. Hope you will as well.

“Suspended in the air

Don’t you feel better

The words you didn’t hear are coming from friends

Take your little fantasy, mix enough audacity

Today you throw your head back in the wind.”

Astronaut – Disco Biscuits.

Image result for funny pictures of black holes

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I’m just saying…

May 2 surgery went well. Started and ended with a minimalist, laparoscopic procedure. That was good. It meant they did not find a bunch of other junk which would have necessitated opening me up completely. Doc made small half inch incisions, inserted plastic tubes and then introduced camera. He found a plumb size tumor deep inside 23ft of small intestine and removed through a wider incision @ belly button. Scarring is minimal so I should be ready for that Siberian bikini competition I’m planning on crushin’ next month. You’re mine Viktor and Anatoly, gonna cry-cry-cry all the way back to the gulag.

Some of you have been asking for details – thanks – so here’s some additional trivia regarding the whole affair (probably more than you wanted in most cases):

  • They found the thing after doing capsule endoscopy. Swallowed a little satellite that took pictures during its epic journey through my small intestine with stops on the isle of Pharos, then Calypso and Scherie before getting ship wrecked on the Tumor island. Highly recommend one of those procedures if you are experiencing prolonged abdominal pain and have already had the joy that is endoscopies, colonoscopies, x-rays, ct/pet scans, ultrasounds, physical exams, suggestions you might just be insane or a wimp or both discussions, and/or cavity searches by green men in spacecraft with long, oddly curved implements of mass destruction procedures.
  • Surgeon told me that these things go undetected quite often. Comforting thought but at least its over.
  • Yeah they shaved my chest to get to the thing. Think “40 year old virgin” when Carrell decides he’s going to put the kibosh on the wax job prematurely. Thankfully I was not awake for this part else I too would have been screaming, ‘Kelly Clarkson’ along with other not-so-nice words. Then again I could have asked, “hey man do you do bikini wax jobs too? I mean I got that deal in Russian coming up and want to represent for the good old US of A.”
  • 40 year old virgin
  • The biopsy of the thing revealed that it was indeed melanoma. This was actually good because it meant there were no secondary cancer present. The chemo, which appears to be working on all other areas, will thus continue.
  • The thing did not look like melanoma- white instead of black. I’m choosing to believe this was also good. My “white” blood cells are in the game.
  • We suspect this thing was there for @ the last three years. That’s also good. Normally they incubate and infiltrate, rapidly pumping out mini-me-melanomas and conquering surrounding territories. Does not appear to be the case. He was all by his lonesome, evil fricking self.
  • The thing was partially obstructing the bowel which solves the mystery of emergency room episodes and extreme this-pain-goes-to-11 all night cramping sessions. Also explains why discovery of taking hydrocholoric acid instead of proton pump (acid blocking) inhibitors along with probiotics was helping me at the end; as well as why fiber and other hard to digest items were going all medieval. Food needed to get decompiled prior to choke point or my body was literally choking on it.
  • The thing was also perforated so there was acid and food junk getting into the rest of me. That explains some of the ulcer like symptoms I was having.
  • I was in the hospital for 3 night/4 days. Recovery time @ 4 weeks. Back to work/no more Bohemian lifestyling. That’s a good thing. I’m pretty sure Sarah will agree to this without even being tortured a little bit or, okay, like at all.
  • At my request they were able to attach 8 large breasts to my chest. Alas I have not found the strength, for some odd reason, to leave the house in weeks. Hope that custom bra with nipple rings arrives soon, along with case of Bengay to ease those tired, over worked hands.

Speaking of not leaving da house, I have been completely unmotivated to post anything here. For one, I felt the need – other than the requisite chemo and doctors’ visits – to forget about the word ‘cancer’ for the last few weeks. For two, I think I’m suffering from a mild case of Post Traumatic Cancer Syndrome, PTCS. That’s not really a thing, other than for me. I don’t mean to make light of the guys and gals who have PTSD either. Am merely attempting in my own lamish way to describe how I feel.

This has been a haul. We have been through a few knife fights. I have the scars and 8 boobies to prove it. Yet right now, despite the tiredness and recovery from being sausage on the cutting board, I feel GREAT. To eat, sleep, watch tv, shower, read, write lame posts, watch boy’s lacrosse, put on socks, breathe and blink like a BOSS without pain after going 900 days longer than I thought humanly possible I could go, well that’s nice.

Part of me is/was afraid to cop to that. To say, “oh man, I feel alright” because I’m afraid I’m gonna get my jinx on, gonna make that other shoe drop to the concrete, pow! Yes, not a very faith filled statement. But I seem capable of juggling only mustard seeds anyway. For now that’s enough.

Love,

Lelan-derp

Post Scriptum: If you would like to investigate real Poetry with a capital G then Google my brother, Gibson Fay-LeBlanc, the resident Poet Laureate of Maine. He is pretty much a bad ass – in a rich tradition of bad asses who write poetry- and his near recent poetic turn through the subject of hockey is proof of that undeniable fact of his cosmic bad-ass-inating-ishness. http://www.pressherald.com/2015/06/28/portlands-newest-poet-laureate-writes-about-playing-hockey/ Btw it’s his birthday today. May 23rd will forevermore be known as the day of The Bad Ass G. Happy birthday.

Anyways, here’s my first and likely last sophmoronish attempt to be like my brother Gib the Bad Ass from Badasserlandio. It was written while whacked on dilaudid and proves that morons who claim the greatest achievements in human thought are conceived while high are, well, high.

Some context: I had just been told I had to stay another night in the hospital due to a failure to poop. Sinking into my hospital bed I thought I might lose my marbles cuz I couldn’t lose a brownie. Though by the looks of this ‘crap’ I believe I may have, har-har-har.

My Dark Resume

Has a mangled neck and a broken skull

With a messy stomach

And hair falling out

Stretching the furthest reaches of more

with less and less.

I fear when fear is gone

I will grow afraid of my lack of fear.

Worse than some

Better than many

Trying to grasp

A dream of a hope of a dream

About hope

About kids

without compunction

or guile

or bile

or style

I care

that wearing black socks with shorts and sandals is a privilege.

Fever, itches, dumb stitches

rotten plumbs conceived on vines in caves made out of tubes

Scar the landscape

Like carpet bombs dropped indoors

Human headaches

Apocalyptic milkshakes

Down the hatch

So minute man doctors can scan

Internal horizons

Seeking coarse things in the lightning darkness

that usually are not there

or can’t be found

Ever to give up

what I surrender.

But know this

Write this down

Below my name and address

During the interview

And underline it twice with a red pen:

Cancer may be the diagnosis for now

but it’s not my sign man

never will be

I’m a Capricorn motherfucker.

 

 

 

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Something

I read this morning that the “-ISM” in words like alcoholism can be explained as an acronym for “Incredibly Short Memory.” This is the first time I’ve seen that one. I’ve heard others such as “I, Self, Me” seeking to explain how problems with alcohol or drugs or eating or whatever are rooted in self-centeredness; there’s also the definition of ism as  “I Sponsor Myself” suggesting that it’s not good to try to tackle one of those conditions alone. These are all good bits of information but I’d never heard it described as a problem with my prefrontal cortex or hippocampus before…

If you google “ism” you will find the suffix tagged onto 800+ words. It’s on dualism, Marxism, Buddhism, Catholicism, fatalism, monotheism or paganism which refer to a “philosophical, systematic or ideological movements.”

Nihilism is in this category too:

I was happy to see other uses boarding on the humorous: yahooism, quackism or ignorantism, or my new favorite, zombiism. And there’s what I was referring to above, denoting a “pathological condition” such as alcoholism. Incidentally its kind of interesting to combine the cutsy acronyms with that particular definition of an ism:

  • “Incredibly Short Memory” + “pathological condition”
  • “I, Self, Me” +   “pathological condition”
  • “I Sponsor Myself” + “pathological condition”

Anyways, last week I got a call from the gastroenterologist doctor telling me they had found a tumor down inside my small intestine. We had done what is called a “capsule endoscopy” the week before and he had called to share the results. I was alright on the phone – more in shock than anything else. This is a pattern. But then I got to thinking – which is also a pattern. Thinking led to Lebowski style nihilism or the belief that this world is heading nowhere and meaning nothing (although it didn’t feel that funny).

How many tests have we done over the last few years trying to find the source of this abdominal pain? How many times have I asked for help with this? How many times have people prayed about it? Have I prayed about it? Hundreds? Thousands of prayers all together?

And for what? Where were the answers? I mean I have had, in some cases, the same stupid endoscopy test (three times), blood tests, xrays, ER visits, pet/ct scans…all of them found nothing? Is this a joke? Is God real? Really? Are prayers BS? What’s the point? Was this “benign” loving Father just going to let my prayers go unanswered for years, meanwhile letting me lug around this pain for 6-8 hours a day? And for what? What have I learned? What’s the big mystery or lesson or whatever that I was supposed to discover? I don’t feel any different than I did when this crap started. 

And then there was the fear that maybe the pain was not related to the tumor, that maybe this was a fresh outcropping of cancer in my guts…And what the hell does that mean anyway? Thanks a lot/this blows/what’s the point…the game sometimes feels rigged for people that believe and that part of me seems to be missing and/or defective…if that is even the game we are playing…

This happens to me a lot. When faced with a crisis, everything I think I believe goes out the window and I’m in full free-fall. Eventually things come back around.

Why? How? What?

In my case I got comfortable, again, with the phrase I don’t know. I can add this to a litany of other “unanswered-isms.” Not knowing is part of life. I can either accept that or I can’t but not accepting it makes it hard; accepting it, easier. I remembered my incredibly short memory. The reality is, at least in my experience, that experience has taught me there is an underlining purpose to things. I can’t explain it well. I’m not in charge of it. But I have experienced it, over and over. I’m at peace with this today even if I chronically forget it.

Furthermore, “at the end of the day,” I can’t accept “nothing.” Not only because that doesn’t make sense literally (how do you accept nothing, isn’t that after all accepting something?), but because I can’t reasonably wrap my mind around the concept.

My head hurts imagining a beginning before a beginning. I mean what was before the beginning? Imagine nothing? I can’t. Perhaps a physicists could explain this to me properly…maybe something about the illusory nature of time. They would probably be wasting breaths on me.

Then again if Einstein’s concept of mass energy equivalence (eg e=mc2) is real and there is a finite amount of matter/energy in the universe, maybe I was never “nothing” to begin with either and will, therefore, never be/couldn’t be “nothing” again.

Now, I don’t know, but that might just be making something out of nothing. 0-;

PS. Surgery tomorrow. Will let you know results. There’s a phrase that goes something like “May your family treat you like friends and your friends, family.” Thank you friends and family for your help, concern and love. I’m happy to call you both friends and family.

 

 

 

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4 More Years

Four years can have significance in our lives. 4 years of high school. 4 in college. 4 for political office. There’s that chant when someone is vying for a second term in office, “4 more years, 4 more years.” In my case, at least lately, 4 more years is about surviving cancer.

It was April 17th, 2012 when I got a call at work from the dermatologist. The doctor’s voice trembled a bit as he read the pathology. I don’t know if that was because he thought I was going to sue his practice’s collective nose jobs, butt lifts and eyelid tucks off, or if he really cared…either way…I won’t easily forget the description he finally gave in human readable /non medical terminology, “It’s very thick and very deep.”

Never good when the doctor is upset and resorts to human understandable terminology instead of obfuscating words like “Breslow’s thickness, Clark’s level or mitotic state.” I basically translated all of it as, “You are pretty much-totally-completely-absolutely f-d Leland” and flew home in a tearful panic.

There have been lots of moments in the last few years when I contemplated death. What my funeral might be like. Who would be there. What pictures would they show. What the song list might be (gotta have some Garcia in the mix, I mean pa-lease). What would happen to Sarah and the boys? It was nearly impossible not to “go there” when they were sliding me into another MRI or pet/ct scan, drilling holes in my head for the requisite gamme knife cage, or putting a line in my arm for a fresh infusion or pull of blood for whatever. Discovering I had 43 brain tumors evoked certain dark thoughts. Those thoughts thickened an already bubbling stew of ruminations about tumors in my stomach, lungs, liver…later topped off by the news that there were actually 98 and not 43 tumors in my brain…a morbid-inspiration soupy mess, yummy yummy.

And I know I’ve been quiet online with www.98braintumors.com lately. I can rattle the reasons why I haven’t been writing much here: tempo and demands of work have increased; general disgruntlement about dealing with ongoing treatment side effects (translation – grumpy); boy’s hockey and lacrosse games involving protracted car-rides, usually equidistant to moon; getting up earlier, staying at work later; ‘Walking Dead’  and now ‘Fear the Walking Dead,’ soon to be ‘Game of Thrones’ (heck yes); iphone game binges; NHL playoffs; exploration of thoughts about starting start ups; resuscitation attempts at a long lost novel…

But at the “end of the day” what I want to say tonight to anyone trolling the internet looking for a hope is this:

I WAS HERE FOR FOUR YEARS

and

I AM STILL HERE.

So tell your fricking dark thoughts to piss off. Take a match to whatever statistics, disparaging words, or other bs you have rattling around in your head. Burn that cat shat up. Get off your proverbial couch or pity party or whatever has got you, and get moving doing something.

And if you are so inclined, hit your knees. Ask Whoever and Whatever you believe for the strength to get through whatever you are going through. This doesn’t have to be yet another end of your world, again. The “beauty” of this experiment (and I do believe, as counter intuitive as this sounds, faith is a scientific experiment) is this, “What choice do you have? And what exactly do you have to lose?”

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Inspiration

I have not been inspired to post anything for a few weeks and it was working on me a bit.

Where was my inspiration?

Didn’t think I was being particular choosy. But there was just a general lack of percolation going on; you know, no flow. Just nada, zero, empty, snake bit.  If I were a hockey player from Canada, I’d say I was “squeezing the old twig a little too hard / unable to put the biscuit in the basket/light the lamp and what not.” No beer and doughnuts and all that eh?

But then it occurred to me that being a bored, uninspired or whatever was a kind of luxury item, a “high class problem” worthy of my aspirations and attention. Boredom was also a likely bi-product of someone feeling a bit ungrateful. I mean really. Truth be told I should be grateful for ingratitude, happy to be dull, and inspired by my apparent lack of inspiration.

In a few weeks, if the good Lord’s willing and the creek don’t rise and I don’t flip off the wrong 400 lbs Hell’s Angel in traffic or decide to fulfill my life long ambition to become a cobra charmer in India and/or free climb a Denver sky rise while window cleaning, I will celebrate 4 years since the day of my melanoma diagnosis. I am still topside baby! A few months after that, I will likely stroll into a room full of idiots like me with some chalk flavored cake from a grocery store and announce my 25th anniversary of continuous sobriety, you know without any mood or mind altering substances.

Now, I know, some of you are thinking 25 years without any booze is not something to be bragging about…but believe me when I say that I, along with society, have been, are, and will be better for this fact.

Truth is there’s legions of packs of scores of swarms of regiments of crowds of clouds of armies of populations of multitudes of many other things to be grateful for, beyond just taking my customary ~20,000 daily breaths or hauling my ~7 octillion atoms (7 followed by 27 zeros: 7,000,000,000,000,000,000,000,000,000) out of bed, today.

There is, in no particular order: pizza, music, running, dogs/cats/living together, job, television remotes, news feeds, Walking Dead shows, smart phones, wrinkle free shirts, computer geek talk, Avs, boys, Sarah, car, house, pillows, air fresheners, clothes, 5 senses, brain waves (however slow) etc.

And then there’s this guy – the G, Gibster, the Giblet, the Gibbyatollah, G-String, G-man, G-spot, G-force.

My brother Gib came to visit with his two righteous progeny last week.

I have few memories of being a young-young kid. But one stands out. I distinctly remember G at 2, wobbling around in his diaper. He was quite possibly the cutest thing I’d ever seen in my life…and I then remember a near imperious urge to -I don’t know- squeeze, pinch, beat the crap out of or generally make him cry. Bam Bam! That didn’t change much growing up. I used to rub my hands together in anticipation of coming home after a long weekend, enumerating the many ways I could put the hurt on my bro. Brotherly love worked, at least for him, in often unpleasant and contradictory ways. Ah inspiration, move me brightly.

Anyways, it was good to see you bro and little nephew dudes. I have and will, as long as I have any say in the matter, love you always. Thanks for making the effort and braving the crazy Colorado blizzard to see us and for not kicking my well-deserving-to-be-kicked-ass (except may be while running up Spruce Mountain) while you were here.

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Speaking of enjoyable inspiration for me, but likely tortuous for him, there were the Grateful Dead show I dragged Gib to…not this one, but one like it many years ago…

Terrapin Station, Hunter/Garcia, Anaheim, CA July 26, 1987

“Inspiration, move me brightly
light the song with sense and color,
hold away despair
More than this I will not ask
faced with mysteries dark and vast
statements just seem vain at last
some rise, some fall, some climb
to get to…”

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Tanning bed restrictions

There’s a movement afoot at the American Academy of Dermatologists to petition the FDA for greater restrictions on sunlamps and tanning beds, especially for minors. I’m not a huge fan of extra legislation and believe ultimately that our problems are of our own making. Supporting a ban on x, or y or z seems to be more a matter of personal opinion and blurry reasoning at times- politicized, polarized and pulverized to the point where distinguishing real from fantasy, true or false, good and bad is nearly impossible.

If I were in charge of EVERYTHING, besides everything being really-really f-d, I would correct the causes and conditions to things we often ban in the first place (e.g. fix the low self-esteem rather than prohibit x, y, or z). But, okay, stepping off the soapbox and back to reality, that’s not the world we live in presently.

It is my opinion and experience, that tanning beds are dangerous. I mean a history of blistery sunburns followed by melanoma diagnosis, four surgeries, 60+ infusions, a trillion tests and doctors visits, 2 clinical trials, radiation, 10 gamma knife surgeries, 98 brain tumors, lung tumors, stomach tumors, liver tumors, excessive sweating, offensive body odors, and a bad sense of humor (okay those three may possibly have been pre-existing conditions)…that’l learn ya. And there is also this army of data suggesting that climbing inside a tanning bed a couple times a week is worse than making an addiction out of piles of smoking, Camel filter-less cigarettes.

So I think we should at least put some roadblocks in the trajectory of that 16 year kid who is too immature to make good decisions about his or her future and safety. If they want to circumvent or step around around barriers we put in place, if they think they can beat the odds or that the data is bunch of BS, that will ultimately be their choice. The initiative promises to make it harder for “smart guys or girls” to make stupid, potentially life threatening decisions…perhaps slowing them down long enough for some help/wisdom/clarity/whatever to seep in and save their lives.

So, if you are interested in this and agree, you can hit the link below and add your support:

https://www.votervoice.net/Shares/BAAAAATnACPyKATbseO7FAA

   

Besides there’s many other, better ways to let your light shine than getting irradiated in a tanning both.

Soul Glo for instance…that stuff, besides being able to peel paint, remove unwanted hair follicles, and fuel your car, probably isn’t toxic or anything, right Eddie?

 

 

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A new pair of glasses

When I was cleaning up my routine almost 25 years ago, some friends suggested that I get a “New Pair of Glasses.”

At the time, I was sporting some funky and I mean capital P-FUNK-EE spectacles. Picture them cloudy, desperate for a spray bottle, a soft cloth, and some applied pressure. They sat crookedly on my skinny 150-pounds-when-soaking-wet-frame, below months of uncut man-fro hair, and above my favorite, ratty Grateful Dead t-shirt. The piece de resistance though was the twisty paper clip shoved through one end of the horn rims because a screw had fallen out weeks before. I was too oblivious, scared, cool, or all of the above to walk three blocks down Tejon, by Colorado College, to the eyeglass shop and have them repaired. There may be a couple of metaphors in those previous sentences.

Either way, my friends weren’t referring to the lenses hanging precariously down the end of my nose, but the book, “A New Pair of Glasses” by Chuck Chamberlain. I eventually got or “borrowed it,” or whatever, and proceeded to read over and over and over. Its been a few 24 hours since I’ve actually cracked those pages but not too many days go by where I don’t think about the words and concepts that somehow navigated their way through a pair of smudged lenses to my addled soul.

Published in 1984, it’s essentially a transcript from a series of talks that “Chuck C” gave to a certain anonymous fellowship. He does a phenomenal job describing key concepts that underpin the fellowship and, at least in my opinion, some of the collective wisdom, grace, and understanding found by many (including me, though retention is highly suspect) there.

This post from a few years ago by Daniel Isonov summarizes well:

“First of all, Chuck proposed a vision of Christianity that wasn’t even, to my Catholic mind, Christianity. He said that he believed “the gift of God was made at the foundation of the world.” What he meant by that was that God wasn’t capricious and God wasn’t punishing. God could be counted on the way that gravity or electricity could be counted on….

To talk about love was like talking about humility,” he wrote…If you love somebody or something, you do something for them. You just do it and you don’t make a big deal out of it.”

For me, this concept revolutionized my approach to life. It gave me a way to behave. Love was an action. If you wanted to get along in the world, you had to help people. If you needed to know what God’s will was, that was easy, too: Do something for someone else.

There’s a mighty set piece near the end of A New Pair of Glasses. Chuck recounts for us, in his own words, the story of the Prodigal Son…

‘And so the father saw the kid a long ways off, and he came to meet him. And the kid started trying to tell him what a bum he was, what a failure he’d been in the business of living. But again, the father didn’t hear him. He didn’t argue with him at all. He didn’t say, “Look, I’ve got the record on you right here, and you sure are a bum, you’re no good. I’ve got it right down here. I know every time you turned right when you should have turned left. Get the grubbin’ hoe and get back on the back forty, and grub out some persimmon sprouts and sassafras bushes. And, maybe, if you do a good job, twenty-five years from now I’ll invite you in for lunch. He didn’t say that. He didn’t say anything. He fell on his neck and kissed him. And he called the servants, and he said, “Kill the fatted calf. We’re going to have a party. The boy was dead and now he’s alive. He was lost, and now he’s come back home.’

When I say that this story was absurdly pertinent, what I mean is this, ‘No condemnation, no reprimand, no argument. The love of the father for his child…’

I was wrong about the nature of myself. I had thought I was a victim of my depravity, but it turned out that my depravity was the gift that had forced me to come home. Chuck explained this to me better than anyone: God wasn’t angry. Worse than that: God didn’t even understand anger.

I had thought that I was a desperado, coming in from the fields, begging for a handout. It turned out that I was a prince, and my father saw me from a long way off.”

Nice.

Who wouldn’t want to feel and pour out some of that to their kids or spouse on a regular basis? Or, man, when asked to fill out the latest TPS report at work? Or at the ice rink with the parents of the other teams? In traffic? Looking in the mirror?

In the context of cancer, the ability to change my mind, to be open minded to whatever happens, and even to believe that there could be a happy ending, regardless of outcomes or perceived goods or bads…that’s not easy.

Chuck had it pretty simple and I’m sure if he were here, he’d tell me its pretty simple for me too. But if I want an attitude like that I have to change my perspective. That’s a conscious decision. Heaven is, as he says in his book, putting on a new pair of glasses.

………………………

…………………………Um…or you know you can always try to buy your way through as well. That’s a thing too right?

Got some new frames this week.

The first thing Derek said to me when I walked through the door was, “What’s up nerd!”

Feel the love.

I guess I am guilty as charged, channeling my outer nerd here.

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Yeah unfortunately its an inside job. I feel your pain Paulie: Paulie, Sopranos, Shoulda been covered by my donations

 

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Scanxiety

Had MRI and got results yesterday at the University of Colorado.  Great news! Tumors in brain are stable to improved.

We spent some time examining grey globs in my pea sized brain. Basically, nothing has changed in the last 3.5 years since they found them. Historically, they expect a fourth of the tumors to not respond to the treatment and require re-treatment and/or other measures (like surgery). With the exception of 1 tumor, all 98 of mine have responded so far. That’s basically a 99% response.

One study posted on NCBI looked at 51 patients over a 10 year period treated with GammaKnife stereotactic radiosurgery (GKSRS). It examined local and distant brain failure rates, overall survival, and likelihood of neurologic death.  Median survival time for the entire cohort was only 5.9 months. Local control rates at 1 and 2 years were 57% and 34%, respectively. Distant brain failure rates at 1 and 2 years were 58% and 75%. Fifty-three percent of patients ultimately died of neurologic death. On multivariate analysis, patients with extracranial disease (eg spread to distant organs or other areas) had worse overall survival than patients without evidence of ECD (extracranial disease).

Another study from 2014 examined morbidity of people with stage IV melanoma. Median overall survival was 5.3 months. Death probability of a patient with brain metastases was twice that of a patient with digestive metastasis, about 7 times higher than that of a patient with lung metastasis and 12 times higher than the death risk of a patient with extra-regional lymph nodes or subcutaneous metastasis.

Not sure what to say about ‘dem numbers…I’ve had brain, digestive, lung AND lymph node metastasis…thankfully, this is one of the few areas in my life where not living up to expectations is a resoundingly positive thing.

I also asked the PA if those monochromatic looking dudes in my head were metabolically dead and the answer was…inconclusive. Short of cracking my dome open and biopsying the best guess is that they are either “deet” or the  gamma knife treatments scrambled the DNA enough that the cells are no longer dividing. We dunno.

What I do know is that I can, hopefully, lay off the hypochondria for a few months, at least until the next scan. I think I have gotten more relaxed (easy to say now 24 hours later, but I do believe this is true) about the process. I was sawing serious logs during the 30 minutes in the tube yesterday, despite the rather alluring siren calls/whale mating shrill broadcast with deafening surround sound inside the MRI tunnel. But its almost impossible to avoid a certain amount of manic and panicked thinking prior to the day.

Somebody on FB recently referred to this as “SCANXIETY.” I like that. Its the beat I’m pretty much dancing to, starting @ a week prior to the big show. Benign, normal, everyday aches and pains become potential, life threatening indications. Anything  from a headache, eye twitch, or head rush from getting up too fast…on and on…whisper to me their deadly symptoms.

What can I do about them? Well…

  1. Talking helps. Lately this just saying to Sarah, “Thinking again. Got this headache and…” She is usually quick to remind I’ve had headaches before 0-;
  2. Pray. Pretty much, a lot. Not sure why that works but it does.
  3. Practice acceptance; attempting to remember that “at the end of day” I don’t have power over any of it anyhow/anyway. I can be miserable or get busy getting busy with whatever is in front of me.
  4. Sometimes I get pissed and sometimes I act out. I try to correct it as soon as possible and move on. As I’ve said before, have not  graduated to super hero. If sometime in the future I claim such a thing, just nod and wave, nod and wave.
  5. Work. I have the “luxury” here of perspective. While work is important, kinda, its if nothing else, full of worthwhile distractions. A Green Beret once told me, “Stress? This is not stress man. Stress is when people are shooting at you.” While I think the human brain is capable of making a “TPS” report as relatively stress worthy as taking fire from a gang of AK-47s, cancer, or whatever, I can relate more and more to what he was telling me today. There are no big deals except when I want big deals.
  6. Work out, everyday. Calms the brainwaves and smooths the turbulence between my ears.
  7. Boys. Hockey. Basement. Hanging out. Drive way. Footballs. Trampoline. Catch. Whatever we do – most of the time 0-; – is righteous.
  8. Sleep. Ah! Sleep.
  9. Elsa sleeping on our couch. The puppy dog is finally down. All praise Jesus.
  10. Mindless television…speaking of which iZombie is calling from the next room. Or should I feel guilty about not working on writing, reading something useful, or a thousand other more noble and productive callings…um…no…

Peace out!

PS. C-man’s team won a second tournament last weekend- their league championship. They are now 19-1 in the last 20 games. Next up is the state tourni. Love this dude.

After winning CCYWHL tournament

After winning CCYWHL tournament

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