5 Years Revisited

Got the Call

Five years ago I was sitting in my office at work when I finally got The Call. I had been nervously anticipating the news for the last three or four days, worrying about the terrified look in the nurse’s eyes after she’d taken a scoop out of the coal-black, ulcerated spider spreading its spindly legs across my scalp; moments earlier, the doctor’s friendly albeit slightly rout and disinterested demeanor grew pensive and serious when he pushed back my hair and examined the mole that had morphed from a tiny black grain to the nuclear fallout, orangutan assassin on my head.

Melanoma (the worst, most deadly form of skin cancer) is known to be 95% curable if caught in its infancy. Unfortunately my doctor botched the job, badly. His partner, who subsequently called and delivered the news, trembled when he spoke, his voice quaking over the phone. I remember fragments of what he said. The words are like hot shrapnel in my brain. When I think about them too long I am reminded that forgiveness is a practice:

“Clark’s level 5 primary tumor| Breslow depth 13mm | 22 mitosis | Ulceration present with suspected vascular invasion to lymph nodes| It’s very deep Leland.”

That moment  was promptly planted with a small but powerful, mostly disturbing, undoubtedly life defining collection of flagpoles on my version of planet earth.  I would struggle to tell you what I had for dinner two nights ago.  But I can recall with perfect clarity where I was and what I was doing when I heard that Ronald Reagan had been shot, the Space Shuttle exploded, the Berlin wall was torn down or the World Trade Center buildings fell. The phrase ‘It’s very deep Leland’ feels no different.

My life had just changed for the rest of my life, however short that might prove to be.

Four or Five Days Earlier…

I sat nervously on the crinkled corner of an examination table in the dermatologist’s office.

“Probably nothing,” I said, hoping to bait the doctor into saying reassuring words,”Another false alarm in the life of the misguided hypochondriac, eh doc?”

There had been many frightful trips to the Dermatologist previously. I’d been going for years. Everything had been benign, chalked almost humorously to worrying. I wanted this time to be no different, another case of LVCR (Lacking Viable Cognitive Resources), microdeckia (not playing cards with a full deck), ineffective-copia, ridiculitis ginormous worryfromundus, symptomatic terminal whining also known as whinnoria, JHM (Just a Hot Mess), globus stupidicus maximus, or some other form of fictitious psychosomatic condition on my part. I wanted to blast from the office, past dolled photos of dermatologists arranged above the waiting room like lessor Greek Gods, exiting sparkling glass doors to the parking lot and the comforting arms of warm Colorado sunshine, happy to get the hay out of that place and sooo-sooo glad to have been positively mistaken, again, to call Sarah with gratitude in my voice and the Disco Biscuits pumping in the background.

Told you,” she’d tease, “it was nothing you Goof!”

None of that happened this time.

“Okay,” the doctor replied flatly, his thoughts suddenly somewhere else, “let’s see what the biopsy says in a few days and go from there okay Mr. Fay? I will call you as soon as I get the results.”

Gulp.

You don’t really want a Dr. addressing you formally. In my experience that’s an emotional stiff arm, signaling they don’t have time for niceties or need to a retreat into the comforting arms of emotionless, clinical jargon.

My nightmare was finally real.

Next…

After falling prostrate on my face, a frantic series of conversations with Sarah, family members, insurance representatives and receptions at doctor’s offices, I eventually found myself in full frontal, totally immersive, research mode. My tool of choice was of-course the internet and my surfboard was a laptop in bed (not with covers pulled over head but that provides a nice image and is in line with how I felt).

First the largest elephants in the room needed tackling.

How long do I likely have to live? What are my chances?

Let’s see, at the time, though no one had yet given me an official staging, I determined with the characteristics of the melanoma and the invasion into the lymph nodes, I was Stage IIIc. So that was like a 40 or 50% chance of survival. While terrifying at the time, 1:2 ain’t too bad in hindsight.  In a matter of a few short months I would stared directly down the hallow barrel of a Stage IV, terminal, diagnosis with less than 5% chance and 6 weeks to 6 months, the latter if I was lucky (like Powerball-winner lucky), to live.

So Wait, um, Why? 

Why relive this moment here? Why rehash the day I got the call from the teary voiced dermatologist describing the terrible misdiagnosis perpetrated, where a benign “fatty cyst” transformed into a highly virulent mega-monster melanoma-frankensaurus?

Well, it’s really a rather circuitous way to announce that we are now well past April 2017 which means that I am now well past the 5 year mark since my ‘pole in the ground’ moment.

I mentioned it last post but it was somewhat felt overshadowed by my letter to the boys. I thought such great news deserved a little more press for the 2-3 people reading this post here 0-; or for anyone who has stumbled across 98braintumors.com looking for some hope in whatever dark place they find themselves tonight.

I am now officially a 5 year cancer survivor!

5 years ago, 5 years felt like an awful long time. Got this quote in my inbox @ that time – last April 2017 – and thought it apropos in this context.

“Faith is taking the first step even when you don’t see the whole staircase,” MLK JR.

Secrets of 98braintumors.com Revealed

It’s been awhile since my last post. I could barely remember how to login.  Sad face.

Thankfully, I had 11,179 comments waiting patiently for my triumphant return. Though I have not yet had the pleasure to make an acquaintance with all the authors, they are apparently among my greatest friends and supporters, EVER!

Most of the comments are on the order of solicitations, eg spam bots. Among the tempting offers are MIND BLOWING deals for female Viagra (cheap), codeine and other narcotics without having to bother with those annoying prescriptions, Nuru massages in New York City, a herd of midget brides from Pakistan, enough Rogaine to turn a corpse into a gorilla and steroids for days. These happy and erstwhile spammers represent a veritable melting pot of countries, though a preponderance reached out from the ether from Russia and China. Huh.

Anyways, being a good catholic (or at least raised one while bending the laws of fluid mechanics with the term ‘good’) I found myself feeling more and more guilty by the day for not coming back here to blog sooner. Being a good thinker (raised by some, though in truth I believe I come by ‘overthinking’ quite naturally), I asked myself, ‘Why? Why do I feel guilty for not posting lately?’

The answer concerns 2 things. These are, if you will, the founding partners of www.98braintumors.com.

For one, there’s hope.

Namely that the story here gave/gives someone a bit of hope. Surviving 98 brain tumors, as well as malignant tumors in liver-lungs-stomach is not something you hear about every day.

Along those lines, I am pleased to report additional good news…Last April marked 5 years since my diagnosis!

I am now a five year, Stage IV terminal cancer survivor.

Miraculously topside despite a dismal 6 weeks to live and less than a 5% chance of survival (some would have said no chance of survival) prognosis. Scans/studies/examinations have all been quite good lately as well. Thank you God.

That’s a lot of anniversaries (16 years on the 23rd of June, Love you Sarah) birthdays, holidays, fun days, work days, every kinda days. The vast majority have been good, many have been great days. Some tough too. I know what it’s like to fear eating for years straight. To have pain = 11 on the 1-10 pain scale. Surgeries, needles, pills, hospital beds, doctors, nurses, assistants, clerks and administrators. Fevers, rashes, muscle aches, headaches, nausea, intestinal agony, other conditions. Perhaps my multinational friends upstairs (eg from the second paragraph above) could have helped me with some of these problems. Many of you reading this post unquestionably did. Thank you!

I also hope that even though we might not know each other directly, that 98braintumors.com helped you too. Love helping btw. Let me know if you have questions or need something. I mean it. It’s probably cuz I like talking about ‘Leland.’ Either way, let me know. I’ve learned how to listen (or at least do a passable job pretending).

Oh yeah, and now for “the two”…that is, the second reason I began this blog. Not “Number Two” by the way. That’s a well-timed conversation to have at the dinner table with the boys later. We will wait for Sarah to sit down so she can enjoy the conversation.

No, what I realize to be the second purpose of this blog.

Warning– this second reason is a bit more personal. Perhaps this doesn’t make sense to suggest that anything gets more personal than talking about one’s own survival.

But the personal nature of the second reason makes total sense to me. Problem is I get instantaneously nervous thinking about spilling the beans. My heart – pretty sure I have one – aches at the thought. Tears well. I squirm in my chair and start enumerating the ways to weasel. Never been one to say how I really feel and I am about to say what I feel very deeply.

Before we get there, read this. It’s my friend Polly’s latest post. http://speakingofhim.com/summer-solstice/ Polly’s got more natural writing chops in her little pinky than I have in my entirety. She flashes it sometimes on her blog and Facebook and in spoken words at meetings and at church…even if she doesn’t think so.

Reading her latest post while gnashing over my own “failure to communicate” lately, I put the puzzle pieces together today. I realized what I needed to say. It’s what I wanted 98braintumors.com to be…even if I did not know or admit to myself at the time when I started it.

So seriously, spit-it-out-dude, what’s the second reason for the fricking blog already?

For the boys. The second reason I wrote here was for the boys. I started this blog for my two boys, Connor and Derek Fay.

I wanted them to have something (however silly or fragmented) to know their Dad in the event that circumstances took me away (if hopefully only for while). I hoped that my thoughts and personality would come through in some small way. That we could have a kind of conversation, however faltering, on the pages here. While we might be deprived of more memories together, at least they could read a little and know me better. My unspoken hope was that this blog gave them something of myself when they got older.

So here’s my number 2, which is actually number one, my word to the boys:


Dear Connor and Derek,

It’s me. The goofy one, flaws and all. Perhaps not all of me landed here on these pages but some parts that hopefully matter.

First, I want you to know how much I love you.

If there has ever been or ever will be any doubt in your mind that I wasn’t desperate to be there for graduations, phone calls, goals, penalties, movies, books, laughs, practices, shows, whatever… or any I doubt I was sorry for any mistakes I made, knowingly or not (BTW you haven’t figured it out yet – I don’t think so anyways – but there will likely be a time when you think I made a lot of these 0-;)… if you have any doubts at all, feel free to forget them. 

I like to believe – though I don’t think any man or woman can claim this until it actually happens – that I would step in front of bullets for you. No questions asked. Push the papers across the table and hand me the bleeping pen and show me where to sign. I’m in.

And I want you to know too that I believe you can survive the most impossible situations. Doesn’t mean you will. Part of achieving victory is, paradoxically, accepting your likely defeat, first.

So when and if you get knocked to the ground, I suggest you stay for a minute and soak in the view, realizing that on your own you can’t do it, beat it, fight, handle it. But may be with a Power greater than yourself perhaps you can. Affirming this, stand and get back in the game. That’s what I like to believe I did for you a few times.

Guess what? Expect the same of you.

Do it.

Not just because I am your Dad and you are commanded to obey me (though that’s not a bad reason 0-;), but because that is the secret to life, to success and to victory over everything else, such as I understand it.

More than anything I wanted to share that secret with you.

Big Love to you – Connie-Boy and Big-D,

Dad


That was fun. Thanks for listening.

Now, let me see…where was that offer for wrinkle free underwear and the stain resistant socks…

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.

 

 

 

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?”

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.

IMG_1347 Family-Matters-Urkel-Greatest-Blerds-600-319 IMG_1349 nerd7IMG_1352

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

 

Size of Folder Matters

In one of the Facebook groups I am a part (Melahomies United) fellow melanoma survivor Kim Reynolds offered the following words of comfort to someone having trouble keeping the faith in her fight against cancer.

“…When I learned that yervoy (a cancer immunotherapy) wasn’t working, I felt like someone deflated my happy balloon. I’d tried to stay so strong and keep that “fighter” attitude … but I was TIRED. I cried in front of my oncologist and was explaining to her that ‘I’m tired’ … I’ve been in this fight for nearly 3 years of constant fighting, and I’m tired. Know what she did? She clapped, smiled, and held my shoulders to let me know that she understood being tired … but she also related that she had been treating melanoma long enough to know that a handful of years ago I wouldn’t have had the opportunity to have been fighting for 3 years. She told me about how her melanoma patient files had always been so thin … because her patients died so quickly. She smiled and said “I know you’re tired, but I’m happy to see that your file is fat because that means you’re still alive.”

Most profound sister!

After nearly four years I can relate to potbellied folders. While the University of Colorado health system is online, there are other doctors’ offices that have not implemented such modern measures. I remember Dr. Hamid’s office in LA, for instance, and the nurses lugging a binder of biblical sized proportions into the room as an army of angry Ents (trees) wailed and scratched their limbs on the windows outside…and that was just the accumulation of a few months of weekly visits. Imagine today how ginormous my folder would be, due to bulky numbers like these:

  • 50 PT/CT Scans
  • 60 flights to different cities for treatment /consultation
  • 10 radiation treatments
  • 12 gamma knife treatments
  • 60 MRIs
  • 70 infusions
  • 3 endoscopies
  • 1 colonoscopy
  • 4 major surgeries
  • 5 biopsies
  • 2 ER visits
  • 100 blood tests
  • 70 trips through Walgreen’s drive prescription windows
  • 60 doctor’s visits

That’s some potential paper.

I can also relate to the seemingly endless, ad nauseam doctors visits, scans, blood tests, phone calls, consultations, surgeries, meds and treatments…as well as getting/being TIRED.

Yet I’m reminded of a trip to Peru in high school in which we toured a hospital in one of the miserable, sprawling slums of northern Lima – a filthy, miserable hell on earth. They had a BYOM (bring your own meds) policy. Families had to first pay a visit to the pharmacy next door, if they could somehow afford the prices, to buy overpriced medicines that doctors would then use to treat patients down dirty, overcrowded corridors. I wonder how much paper someone with cancer got generated there? My guess is very, very little. If anything, the folders were like gossamer, as frail and anemic as hope in that place.

Got to remember I have the luxury of a thick “folder” today. Its filled with the scrawling words, test results, checklists and sticky notes of doctors, office staff, nurses, physicians assistants, and nurse practitioners, insurance folks, lab and radiology technicians…as well as the energies, efforts, prayers, directions, support and well wishes of family (especially my wife Sarah), friends, coworkers, Facebook homies, church members, they-who-will-not-be-named-anonymous members, strangers on the plane, in the elevator, and front desks of the world.

Thanks everybody! I will try to remember that the proverbial binder is no heavy anchor around my neck but a blessing…and to those struggling tonight, keep working on that paper man! Size matters.

PS. We just reached 10,000 visits to www.98brainturmors.com in three months. Adding that to the story.

PSS. Got CT/PET Scans today – stable to improved. Also folder worthy.

PSSS. Going on two weeks without Gluten. Quite awhile ago I “failed” the celiac test (absence of antibodies) so I didn’t think that was a thing. But have not had any major nausea and cramping flair-ups. So it may be a thing indeed. I will share more on this later if it proves out.

Unexpected Gifts

It’s not like when you hear “you have six weeks to live” you start thinking “oh man hope I get to see that Star Wars sequel someday” but when you do find yourself in that position three years later it does kinda feel like unwrapping an unexpected or forgotten present underneath the Christmas tree.

We saw ‘Force Awakens‘ last Tuesday morning, along with rest of the known universes.  While it wasn’t the near-religious experience of the first (okay the fourth) Star Wars at 7 or 8 years old (TOTALLY BLEW MY MIND), there were similarly strong feelings evoked.

Grateful was I. yoda

Grateful to be getting to see #7, sitting down with a full tub of popcorn with Sarah, Mom, and the boys at 9am as the first strains of the SW’s Overture fired up.

And hopeful (I was) too. I mean maybe its not too late to become a Jedi?

Here I’m a little confused though. There’s so many choices, choices, choices.

It seems in addition to the Church of the Jedi’s various motions to become an officially recognized religion around the world, there are a number of sects popping up. Go figure! A religion with different strains popping up!

Here’s a sampling of what’s out there:

  • Argenteum Astrum – Facilitate, encourage, and promote the Jedi Order as a spiritual path through life. Our way is primarily based upon Buddhism and Hermetic Traditions & Principles. As the belief in Jesus defines Christians; How, we see the Force defines us as Jedi.
  • Arkinnea Jedi Order – Jedi Order dedicated to the spiritual side of Jediism
  • Br1mmStone –Columbus Ohio U.S. based, I teach.
  • Gadian Society –The history of the Jedi from 8500 bc, their ways and teachings as sought after by George Lucas.
  • Jedi Path –Walking the Jedi Path without the mysticism. The Jedi Path is not a religion, it is an applied philosophy, not a collection of beliefs but a collection of attitudes.
  • Simon Dunn –Peace to all JEDI, let the Force flow free and true.
  • Trust In The Force –The “Force” Itself is the source and Creator of Life and it is Love (not sex) that makes it grow. The Force is a call to all Jedi’s and real men to stand up and fight for Good.

Fascinating. Hopefully they can all just agree to disagree; while agreeing on one common Force to rule them all.

The good news is that I can apparently remain Christian while pursuing a Jedi discipleship… if this choose I do.

From the Temple of the Jedi Order,

The Jedi Creed (Christian Jedi Orthodox Version),

I believe in the Living Force Of Creation and all that is seen and unseen. I am a Jedi, an instrument of peace; Where there is hatred I shall bring love; Where there is injury, pardon; Where there is doubt, faith; Where there is despair, hope; Where there is darkness, light; And where there is sadness, joy. I am a Jedi. I shall never seek so much to be consoled as to console; To be understood as to understand; To be loved as to love; For it is in giving that we receive; In pardoning that we are pardoned; And in dying that we are born to eternal life. The Living Force Of Creation is always with me; I am a Christian Jedi.

Sounds suspiciously like St. Francis of Assisi paid a visit to a Jedi temple during his travels…

Anyways, we enjoyed the movie. And there’s been a lot of other gratitude inducing events over the last few weeks:

  • Another Christmas Eve dinner with our good friends the Avery’s (a tradition now, a few years in the making…traditions, like unexpected surprises, are equally righteous)
  • I turned 45 years old last week. Whoa Grandpa. Get out the Depends and knee sock garters.
  • I spent 2 weeks away from the salt mines for a staycation with family; and, with the exception of one night of extreme barfing, was a relatively pain and treatment side effect free experience.
  • Got good results from MRI last week. Thank you God. Brain is “stable.” Queue the running joke about brain and stability.
  • Speaking of running, Derek has decided he is now a trail runner. Nothing like crashing through Colorado foothills with your son and dog in crisp 15 degree weather. We did 8 miles over two days. Complete fun. Glad I didn’t face plant while capturing video.


This met with Elsa’s approval as well:
IMG_1243 (1)

  • Played old school pond hockey ’til we dropped this week in Evergreen CO. Evergreen is ranked as one of the top 10 ice skating experiences (11 rinks + huge free skating rink) in the world. Seriously fun. Was every bit of a top 10 experience with boys.

hockey ev2

Led to a true Christmas miracle.

asleep

  • Finally, circling back to the original topic, there’s an invasion of gratitude inducing, Star Wars stories, media, and other related pop cultural artifacts crashing around the internet like prolific space debris tumbling through a Hoth asteroid field.

There’s this:

Reminded me of the classic:

And I desperately want a few of these for our dinning or living room (not sure if Sarah will go for it)

https://tookapic.com/dvader

What to wearI might be dyingOh well

 

Will frame next to these album cover makeover mashups:

http://mentalfloss.com/article/73051/15-amazing-star-warsclassic-album-cover-mashups

12196320 545041452315014 691746548174200559 n This Star Wars/Classic Rock Album Mash Up Series Is the Best Thing Since Anything

 

Bearded Wondering

shaggy

Last weekend I tried to play my part in the hirsute movement with a 5 or 6 o’clock shadow; okay, closer to 2 or 3 o’clock (a.m.).  Granted it was a weak showing with no hipster cool handle bar mustache, mouth brow, grass grin, flavor savor, chin curtain, goat tee, or fu manchu to be had… more like a scraggly, Shaggy outcropping and an altogether poor excuse for “beard.”

Yet, while my lame attempt may not have heralded a new epoch in men’s facial hair, make no mistake it was historic. You see last weekend somebody insinuated that I, Leland Fay 44 years old, old-but-not-that-old-at-least-I-thought-until-now, am a ‘Grandpa.’

Image result for old man shaggy of scooby doo

The exact words were, while out on a walk talking to a lady about my puppy dog Elsa, ‘Oh you’re grand kids must love her.’

I think my response was a wilting, “Err yeah.”

Inside hallow man screamed.

 

Okay not really, or whatever, um kind of, croaked.

Either way its the beard’s fault man. That stubble done-done me wrong.

Since starting on the various medications for cancer 3.5 years ago my facial hair has gone from dark to salt and pepper to white. Now I’m ‘paying’ for it. Gonna think twice, maybe, the next time I decide to forego a razor for a few days. Will say to myself, “Leland says I, snap out of it, you are not looking all George Clooney more like Col. Sanders.”

Then again, perhaps I can take comfort in knowing that clean shaven might be a better option, health-wise, in the long run. I’m thinking about this article I read in the NY Post awhile back entitled, Bearded men have poop on their faces.

Note: If you have been reading any of my posts for the last three months, it should not surprise you that somewhere in the back of my hairy brain I remembered reading this and a weird synapse fired.

Here’s the quote from feces on face article:

According to a group of microbiologists in New Mexico, the rancid bacteria that beards collect could be putting owners’ health at risk. Microbiologist John Golobic, of Quest Diagnostics, swabbed a number of beards searching for bacteria for the study and found that some of the bacteria “are the kind of things that you find in feces. I’m usually not surprised, and I was surprised by this,” he said. “There would be a degree of uncleanliness that would be somewhat disturbing.”

Ha! Take that beard masters of the universe, maybe, but wait…

Is a little bacteria necessarily a bad thing? Not enough microbes in the diet, on our hands, or in our hair a harbinger or perhaps another symptom, on a macrobiotic level, of possible environment crisis? This article is wild, “How the Western Diet Has Derailed Our Evolution.” Scientists were shocked to find that an isolated tribe in Africa harbored a far more diverse and complex set of intestinal bacteria than average modern man. In turn, that tribe had virtually no incidence of modern disease.

Many who study the microbiome suspect that we are experiencing an extinction spasm within that parallels the extinction crisis gripping the planet. Numerous factors are implicated in these disappearances. Antibiotics, available after World War II, can work like napalm, indiscriminately flattening our internal ecosystems. Modern sanitary amenities, which began in the late 19th century, may limit sharing of disease- and health-promoting microbes alike. Today’s houses in today’s cities seal us away from many of the soil, plant, and animal microbes that rained down on us during our evolution, possibly limiting an important source of novelty.

And you may recall, and as previously discussed a few weeks ago, that having the right microbes on board can potentially play a critical role in the success or failure of immunotherapies (the treatments I have been on).

From a recently published article in Science Daily

Introducing certain bacteria into the digestive tracts of mice with melanoma can help their immune systems attack tumor cells. The gains were comparable to treatment with anti-cancer drugs known as checkpoint inhibitors. The combination of bacteria and anti-PD-L1 nearly abolished tumor outgrowth, report scientists…Checkpoint inhibitors such as ipilimumab (Yervoy), nivolumab (Opdivo)  and pembrolizumab (Keytruda) have had a dramatic impact on treatment of several tumor types, including melanoma, lung cancer, head and neck cancers and others. But only a minority of patients — one-third or less — have a vigorous response. Cancer researchers have wondered why so few benefit…They found that introducing the bacteria was just as effective as treating them with anti-PD-L1 antibodies, resulting in significantly slower tumor growth. Combining the benefits associated with the bacteria with anti-PD-L1 treatment dramatically improved tumor control…

So, alright, I dunno.

Maybe I need to cultivate a facial fro, for health reasons. Never gone the distance, you know like more than a week without a straight edge, but perhaps its time…

Not sure how “tickled” Sarah will be with this; but hey if its for health and I can live with the Grandpa “bristles”, I should perhaps do it. And there’s that old saying about how ‘being old is a privilege, denied to many.’ So true.

This little excerpt from Frasier doesn’t really fit as a way to end this post, but’s its funny and better than my, um, balding “tickled” and “bristles” humor.

Occasionally you fool yourself into thinking you can do it. It never ends well.

Notes from Inc.com interview, ‘What 98 Brain Tumors Taught Me’

Amy Morin, author of 13 Things Mentally Strong People Don’t Do and I recently had a great discussion regarding some lessons learned, after hearing I had Stage IV Melanoma, including 98 brain tumors and a six weeks to live prognosis.  Thankfully its three years later and I’m still here. She wanted to know what I might have learned from the experience and the intervening years.

The result of our conversation was posted on Inc.com today.  You can check it out here: http://www.inc.com/amy-morin/5-life-lessons-a-terminal-diagnosis-taught-this-courageous-man-about-life.html?snmefr and thank you Amy for taking an interest in me and my story; as well as doing such a fantastic job summarizing some of the main points we discussed.

In addition to our conversation, I also had some notes. Not all made it into the above because a) there’s a word limit; b) yeah, I can be a little wordy.  However, I thought I would capture them below in case they are of use to someone facing or helping someone face a daunting health crisis like mine.

So, here goes…

“What 98 Brain Tumors Taught Me”

1. Forgiveness.

Melanoma is something like 95% curable if caught during early stages; and, conversely, deadly when it enters later stages. In my case, the dermatologist I was seeing misdiagnosed the bump on my scalp, thinking it was a fatty cyst. By failing to biopsy the mole, which in hindsight he should have done due to its characteristics (classic ABCDEs – asymmetrical, border, color, diameter, evolution, search for ‘Melanoma and ABCDEs) he catastrophically screwed up.

But, I know from my career as an engineer that everyone – especially yours truly – makes mistakes; especially when dealing with complex problems. Either way, I knew instantly if I was going to survive this terrible diagnosis that I had to forgive him. Otherwise it would consume me. I was not going to throw away what time I had left on hate. I forgave him.

The situation can still make me feel angry but I have spent close to 0 time stewing about it. When it does come up I remember to let him off the hook, think about my own imperfections, and remind myself that forgiveness is a practice; it is a conscience act of saying “I forgive this person” and then, if the temptation to spin off into some indignant, self-righteous anger comes up, kick it out.

2. My participation required.

Our society maintains a certain mystic around the medical profession; that doctors have all the answers and should, by virtue of training and position, make every call regarding health. For cancer at least (probably because no silver bullet exists yet), this is not the case. So I had to step up, get through the fear, look at the data, talk to friends and family, pray, and decide. This included deciding on surgeries, chemotherapies/immunotherapies, clinical trials, and even weekly trips, for six months, from Colorado to California.  It was on, or at least partly, on me.

3. Embrace the fearful internet.
There is a prolific amount of information out here. It drove me crazy but was a net gain. I read everything. I made bad decisions as a result; but also made some good ones.

Intel has stated that Moore’s Law is cooling off (the “law” that stated computing power would essentially double every two years while computing capacity growth slowed). A 2011 study in the Journal of Science, showed that the peak of the world’s capacity to compute information was in 1998. Since that time, technological growth has slowed. Post 1998 each new year allowed humans to carry out approx. 60% of the computations possibly executed by all existing general-purpose computers before that year. Fun stuff to think about…okay only if you are a nerd…I wonder why Amy chose not to use this…but continuing nerdeuphoric information…

While Moore’s Law cools, the amount of available information grows.

Buckminster Fuller created the “Knowledge Doubling Curve” when he noted that until 1900 human knowledge doubled approximately every century. By World War II knowledge was doubling every 25 years. Today things are not as simple as different types of knowledge have different rates of growth. For example, nanotechnology knowledge is doubling every two years and clinical knowledge every 18 months. But on average human knowledge (um average human knowledge) is doubling every 13 months.  According to IBM, the build out of  the “internet of things” will eventually lead to the doubling of knowledge every 12 hours (http://www.industrytap.com/knowledge-doubling-every-12-months-soon-to-be-every-12-hours/).

So what’s the point.  THE POINT IS that just because knowledge is doubling that does not necessarily imply or equate to quality. For example I just cut/pasted/plagiarized (some 0-;)  some information regarding statistics without citing my sources.  That is happening  everywhere.  So, again THE POINT IS search but be careful.

4. Lean on friends.

Advice from friends and family. My wife in particular, along with a few close friends, provided sounding boards for what I was reading on the internet and hearing from the doctors. There is also plenty of research “out there” that suggests cancer patients with a strong support group have, statistically, better outcomes.

5. What matters?
I will never “wish I would have spent more time in meetings.” I’ve lived that. The first thing I thought of when I got the news were my wife and kids. I was, ironically, at work when the doctor called. I went home to my family. That’s what is important when you get news like that.

6. Hamburger, shakes, fries. Whatever man.
I was a chronic cheeseburger obsessed aficionado-addict-aholic. But after reading anecdotal, personal experiences who radically changed their diet and received ‘spontaneous remission” (someone survives cancer without the medical explanation), I said “no” to meat and refined sugar three years ago. Every time I have been tempted I think about 98 brain tumors, my wife and kids, and how I never want to get told I have progressed or new cancer again. Doesn’t mean I won’t receive that news – I get that – but if I do I want to know that I punched back hard. This includes a near fanatical devotion to exercise every day as well diet. Here’s a little more detail on diet which I’ve followed for last three years (http://www.budwigcenter.com/the-budwig-diet/#.VmEXTHarTIU

7. I’m no terminal super hero.
What’s that Queen Latifa movie where she finds out she has a brain tumor and goes out and lives her life to the fullest? Pah! Or the myth (maybe its not a myth I don’t know) about how when people receive the news they are going to die, they suddenly start shooting rainbows out their fingertips (or, um, nether regions)? Yeah, I didn’t get struck perfect, knighted, or welcomed into the community of sainthood by virtue of a terminal diagnosis. Just ask my wife, kids or friends about my un-rainbows. Do I think about life a little more and appreciate it, yeah I think so. But its still life, I’m still me, and I’m still living in the middle of it.

8. Know thy life insurance.
It is very important, if I die, to make sure my family is covered. Fortunately, they will be as long as I am in the employ of my company. That’s the rub. I would advice anyone to do this now – find out what the terms of your life insurance are. I highly recommend getting a policy that is not tied to your job. Lesson learned.

9. Kind and Assertive.
Those kinds of principles should not be mutually exclusive, especially when dealing with insurance companies. You have to be ready to fight for treatment options and care. At the same time it does no good to do it with an angry voice or berating attitude. Its not that there is some master malevolent plan or the folks on the other end of the phone wanted to see me hurt. But, as with any large corporation or human system where policy and ultimately human frailty are involved, there’s gonna be trouble sometimes. I got great care from my insurance, but we had to work to get there.

This goes for treating medical staff and doctors as well. Its an art, even when in pain at times, to be kind yet assertive. I could also say something here about how we absolutely don’t want socialize medicine but, actually, should be working towards personalized medicine models (especially as it relates to hard to solve problems like mine); but that question of social medicine has become more a debate over emotionally over-charged, political views than good, reasonable discourse and logic.

10. Euphoria is the absence of pain.
I realized this recently having been in some acute, chronic pain from treatment, that euphoria = no pain. Euphoria translates to something like “to bear wellness” ((/juːˈfɔəriə/; from Ancient Greek εὐφορία, from εὖ eu, “well”, and φέρω pherō, “to bear”)…this is different than the more modern use of the term used to describe an all night “rave” under the blinking lights at a club in a back alley in Borneo. This train of thought leads me to wonder whether we are born euphoric, in a state of well being that is euphoric…just being our healthy selves is not only a privilege but actually a state of euphoria, we are just maybe too ‘caught up’ to realize it.

11. Death to death. 
I am a Christian, raised Catholic but now practicing Lutheran (God rest my Grandmother’s soul, and sorry Father S, Mom), but am also “blessed” with a constant cycling brain and engineering background. I know intellectually that believing this life is not the end is, ultimately, a matter of faith. We either choose to believe it or not and I choose to believe it today.

That said, what helped me was to read about near death experiences (http://www.nderf.org/) as well books like “Proof of Heaven” by Eben Alexander (neuroscientist who had profound near death experience) and Kubler-Ross’ “On Life after Death.” I found personal experiences more encouraging at times than remote or abstract statements about what happens next.

Love what Walter Murch, one of the mad geniuses behind The Godfather and Apocalypse Now, had to say in recent interview for Nautilus,

“…it’s very presumptuous of us to think that we are the end of it. Yes, we can perceive everything that we can perceive, and we can perceive downward pretty efficiently thanks to science…but constitutionally, I would say, it’s impossible for us to scientifically perceive upward. We have intuitions about that, which is the whole idea of religion…There is a kind of science in the Bible of, don’t eat pork, don’t eat shellfish, these things, behavioral stuff; but what are these based on? We now know what they’re based on and we can see the larger picture because we’re further down the road, so my hunch is that, I mean it’s a hunch, but a belief is that there are many levels beyond us and I don’t know what those levels are but I know that they are there…”

So the point is it is possible to not really understand something prior to believing or accepting it. That does not make it any less real, missing or not there.

12. Yeah, go figure, Einstein was right about relativity.
Einstein’s theory of relativity just celebrated its 100 birthday. Within the pantheon of his well weathered theories, is the statement that time is an illusion. I have, looking back, experienced that…I remember 6th grade Grammar class seeming to stretch on for back to back eternities, forever; then, when you watch your kids go from birth to 10 in a blink of an eye.

The experience of the relativity of time is my personal experience…and I realize that if I survive another 5-10-20-30-40-beam-my-consciousness-into-a-billion-cyber-years-God-forbid, at some point I will again, just as I did when I got the cancer news, look back and realize how quickly it went. Time stretches back but is gone, whoosh. This is a description of the human, emotional experience of time rather than the harder science in which Einstein proved relativity (sorry Newton). But either way, against this backdrop of time elasticity, there is the “moment” which was gone when I wrote “moment” (damn there it goes again), so I might as well try to enjoy it.

13. Kubler Ross was right too.
I spoke about Kubler-Ross above…she’s most famous for describing the five stages that all people go through when they are dying, according to her studies and work with terminal ill patients.  The stages are, as stolen from Wikepedia:

  • Denial — The first reaction is denial. In this stage individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.
  • Anger — When the individual recognizes that denial cannot continue, it becomes frustrated, especially at proximate individuals. Certain psychological responses of a person undergoing this phase would be: “Why me? It’s not fair!”; “How can this happen to me?”; ‘”Who is to blame?”; “Why would this happen?”.
  • Bargaining — The third stage involves the hope that the individual can avoid a cause of grief. Usually, the negotiation for an extended life is made in exchange for a reformed lifestyle. People facing less serious trauma can bargain or seek compromise.
  • Depression — “I’m so sad, why bother with anything?”; “I’m going to die soon so what’s the point?”; “I miss my loved one, why go on?” During the fourth stage, the individual becomes saddened by the mathematical probability of death. In this state, the individual may become silent, refuse visitors and spend much of the time mournful and sullen.
  • Acceptance — “It’s going to be okay.”; “I can’t fight it, I may as well prepare for it.”; “Nothing is impossible.” In this last stage, individuals embrace mortality or inevitable future, or that of a loved one, or other tragic event. People dying may precede the survivors in this state, which typically comes with a calm, retrospective view for the individual, and a stable condition of emotions.

Of-course this could be considered a bi-product of modern life. We can often see our mortality way in advance, know what is going to kill us, days-weeks-years before we die.  Either way, my experience is that I did not go through these stages just one time; rather over and over, sometimes many times a day…or at least I went through the first 4 stages this way many times until I reached acceptance. That acceptance was or, really is still today (because I sometimes repeat this spin cycle), the realization that whatever happens everything is okay, is to a certain degree out of my hands, and will be whatever it is meant to be.

So, I can and will try to the best of my ability to participate in my health, to lean on my friends and family, to have faith and do whatever I can in my power to be healthy, but at the same time I have to accept whatever will be, will be and is.

That’s it, that’s all folks, hope these notes from my convo with Amy helps someone. Peace and, as always, let me know if I can help or share any experience with you.  I will respond to each email personally, leland.fay@gmail.com

Opposite work

Today, I’m relatively okay with the prospect of dying from cancer. Yet I choose to believe that I’m going to live. Those two ideas make strange bedfellows. They don’t really make sense as a combo meal, kind of like broccoli and Cheetos. Yet somehow or another they work gastronomically and I’m okay with some or all of it not entirely making sense, just for today (thank you Stuart Smally).

There wasn’t always this truce in place. It wasn’t always this way – believe-you-me friends and fellow freaks. The biggest brawls I’ve had since being diagnosed with cancer have been with myself. This particular fight, between the dying and living camps, escalated to epic proportions some time ago. We’re talking a bloody cage match- Ricky Rude vs. The Ultimate Warrior at WWF Summer Slam 1990 or Hulk Hogan and Andre the Giant smashing folding chairs over heads- dimensions.

On the one hand I really wanted to believe that no matter what happened everything would be okay. I didn’t want to walk around pissed off, berating doctors, kicking puppies, punching babies, or pushing old ladies down stairwells, bitter and depressed to the bitter end. If anything I wanted to be an example to my boys and friends of how to comport oneself, even if I felt like the least qualified human to do so and even if things didn’t end up going my way.

Who knows, I told myself…Maybe dying would be the very thing that pushed Connor and Derek to become world famous musicians of the legendary band “Flux Capacitor,” in between stints as future NHL hall of famers, after graduating from MIT with doctorates in rocket brain science surgery and advanced metaphysical ministry? And Sarah, not to be left out, would fall madly in love and re-marry the next billionaire philanthropist, who’s fortune 100 company would simultaneously cure toe fungus and cancer (oh the irony!) with a wine derived entirely from polluted melted polar ice cap H2O which, in turn, would prove safe for hopeless alcoholics to guzzle responsibly (damn you cruel irony, damn you to Hades) while simultaneously removing those stubborn coffee and pets stains on carpets. 

Okay, so things maybe wouldn’t come to pass in such monumental ways – hey but maybe they would, ya never know – but you get the point. My passing would yield, despite the hardship sure to be in attendance, a net positive result.

Diametrically opposed to acceptance of dying was the insistent thought/desire/hope/belief in living.  As I tossed east, west, north and south in bed at 2 a.m. or screamed on the trail at 7 a.m. (much to the amusement and/or trepidation of my fellow runners/walkers who were likely thinking “Just smile and wave (and run away) boys, smile and wave (and run away)”), it had to be this way.  I had to be healed no matter what. Belief in healing has been well documented with a load of stats and studies that suggest positive attitudes are a key ingredient in any surviving cancer concoction; and beyond that, as far as I was concerned, it was also an intrinsic article of faith that I better try to cultivate.

So these two concepts waged war, using me as fertile punching grounds, leading to sleepless nights, unpleasant drives to work, surly, bad moods, near puppy kicking and people pushing incidents etc.  The best I could do was to try not to think about either one, dying or living, good or bad, right or wrong, pro or against, for either option. I had to wave “bye” to both for a time.

Here one of my favorite Seinfield episodes comes to mind. Its where George realizes that because absolutely none of his little plans and designs have ever worked, he should do the exact opposite of whatever his mind tells him to do.

@ 25 years ago this kind of approach to life began to make some serious sense. I was busted up pretty good at the time. Nothing was working right.

A friend used to like to say, whenever the subject of me and “brokenness” came up, “You know Lee the only thing that needs to change in your life is, EVERYTHING.” He’d follow that up with a good laugh, “”Har-har-har,” which I didn’t really find all that hilarious … 0-;

But I eventually realized that he and Costanza were actually onto the good stuff and I better start practicing the rule of opposites.

Doing it wasn’t easy or fun. In fact I found opposite work colossally hard; especially because it involved taking control of my thinking; or at least, continually redirecting it. As that same loving a-hole with the quote and the laugh above used to say, “Lee, you’re not responsible for the thoughts that come in your head, but you are responsible for what you do with them.” I wanted to quit everyday, a couple hundred-hundred times an day, hour, minute, second and do some serious binge thinking.

As it turns out, perceived suckiosity might actually have been a good sign. You know something along the lines of that old adage, “If it’s not hard it’s not worth doing.” Or as Dave Goggins in The 40% Rule: A Navy SEAL’s Secret to Mental Toughness says, “If it doesn’t suck we don’t do it.” Word.

The point is that sometimes a thing or things don’t really have to make sense, right now. Maybe they will later. That’s not a requirement for success or meaning or whatever.

Back to near present time frames, by letting go of the living or dying battle for awhile, I eventually came to accept them both, together, of being two sides of the same meal of whatever experience I was having.

Walter Murch, one of the mad geniuses behind The Godfather and Apocalypse Now, is not only a legendary film editor but a serious science nerd and meta physicist. I like what he had to say in recent article from Nautilus,

“…it’s very presumptuous of us to think that we are the end of it. Yes, we can perceive everything that we can perceive, and we can perceive downward pretty efficiently thanks to science…but constitutionally, I would say, it’s impossible for us to scientifically perceive upward. We have intuitions about that, which is the whole idea of religion…There is a kind of science in the Bible of, don’t eat pork, don’t eat shellfish, these things, behavioral stuff; but what are these based on? We now know what they’re based on and we can see the larger picture because we’re further down the road, so my hunch is that, I mean it’s a hunch, but a belief is that there are many levels beyond us and I don’t know what those levels are but I know that they are there…”  

So the point is it is possible to not really understand something prior to believing or accepting it. That does not make it any less real, missing or not there.

Today I’m okay with dying but I’m also believing I’m gonna live.

Okay. Done. Peace. Truce. May the schwartz be with you.

Back to dinner.

broccoli-cheetos2