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.

 

 

 

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.

 

 

 

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?”

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.

IMG_1394 IMG_1395 IMG_1393 IMG_1384 IMG_1380IMG_1387IMG_1371

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…”

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?

 

 

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

 

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

String together

What do a diarrhea medicine, melanoma, the planet Mercury, planetary sized acne, and a hockey trophy have in common?

You know I’m going to gravitate towards the first topic like a fly to, um, stuff because a) its loosely about “stuff,” b) I’m just that immature and c) its regarding melanoma. Study results were published in the last few weeks involving an oral nitrofuran antibiotic used to treat colitis, diarrhea and dysentery in Europe and North Africa. Its all pretty interesting. Besides being touted as a miracle drug for the squirts and drippy tummies, “Nifuroxazide’ has recently demonstrated powerfully curative powers over cancers like myeloma, breast cancer, lung cancer, and melanoma. You can read the study here if ya want: “Nifuroxazide exerts potent anti-tumor and anti-metastasis activity in melanoma.” Sounds intriguing right?

Except that it won’t cost a billion dollars to develop cuz it already exists as anti-bum gravy drug and so probably won’t justify charging consumers the equivalent of $10B to “recoup marketing and research development costs” and so probably won’t be coming to an oncologist’s arsenal anytime soon. Oh and its not available over the counter or by prescription in the good ol’ USA 0-; However if you want to give it a try against cancer or even if you plan to travel abroad and wanna pound a couple dozen mystery tacos from “Gaucho’s Street Meat” cart, you can purchase “N” on Amazon. Its sold under the commercial name Antinal.

Either way, Nifuroxazide is going in my catalog of potential, last ditch efforts, should I wind up in precarious straits with this cancer business. I keep a laundry list of these type of things squirreled away. Its full of completely and/or partially baked ideas falling under the category of “at that point why the heck not!?”  You can google some of the items on my list if you want…nisin, apricot seeds, essaic tea, pv10, ketonic diet, frankincense, braf and mek1 inhibitors, hemp oil, other, and don’t forget ground meteorite crystals from the planet Ork (nanu nanu).

Speaking of planets here’s Derek’s school report about Mercury. The extra-terrestrial dialogue is astronomically priceless (to me). Where did the kid get the stuff? What a character. Love the delivery and ad-lib! Could not have predicted or conceived of this…

And then there is this other, far grosser planet that Sarah shared with me last week. Prepare to barf in your mouth if you haven’t already seen this…

Am outing my wife here and may pay a price later, but it has to be one of the great ironies of life as well as proof in the absolute certainty of a Power Greater than myself, that Sarah is obsessed with pimples. Like addicted-obsessed is she. Its true. If given the choice to go to an exotic, month long, far away vacation mecca OR spend 2 minutes popping an elephant baby like in the video, she’d pick the latter- all day long.

Growing up I thought that what I looked like, wore, or had or didn’t have growing on my face was most important. This led to hitting the tanning bed and more than likely my current circumstances. Meanwhile, in the end, I married someone who, un-unbeknownst for awhile, would have enjoyed squirting every single one of those adolescent whiteheads onto the mirror. Later tonight she may, in fact, fall into in a deep REM state and dream about Mt. Saint Helen erupting on my forehead. Who knew or could have predicted that trajectory? That’s irony dog.

Finally there this “amazement” from last weekend. Connor’s team crushed the competition in his President’s Day tournament. In six games they out shot the other teams by @ 150 pucks (that’s a lot of rubber), scored over 50 goals and only let in 1, and, though there was plenty of drama and nail biting, generally used their opponents as chew toys. Sounds like I’m bragging and I am, profusely and unabashedly…but the cool part about it is how far they have come since the beginning of the season. Just a few months ago, the team was struggling. Yet to a boy (and one girl) everybody worked extremely hard and improved exponentially. It wasn’t always obvious this was happening. But now the proof is in the teams that beat or tied them at the beginning of the year are having trouble matching up, seemingly over night.

So congrats Connor! There is no more enjoyable thing in the world for me than to watch you and your brother “get after it” on the ice. Amazing.

Rampage win Pres Day Tournament

And for me, perhaps cuz I’m a little nuts or something I dunno, this is the thread that ties these seemingly disparate things together tonight. Amazing, sometimes hard in places, tough even, but interesting nevertheless, often pointing to an unexpected, ironic and funny, incredible, big, and un-scripted (at least by me) life.

“Once in a while
you get shown the light
in the strangest of places
if you look at it right.”

-“Scarlet Begonias” composed and written by Jerry Garcia and Robert Hunter

Importance of regularly changing mind

So…was in ER Saturday morning after @ the 25th or 30th episode of all night stomach cramps and vomiting. Joy! Around 8 am that morning Sarah gently nudged me in the right direction and I was “glad” I howled my way to a hospital bed. That being said this situation can be cosmically frustrating. As mentioned in my last post I thought I was figuring out the problem (eg gluten) but it was back to the drawing board Friday night. No gluten and yet I still had an attack, and that kinda-totally-sucked-completely.

Can’t – well I prob could but won’t – count the doctor visits, specialists, blood tests, scans, procedures…etc…etc…etc invested in solving ‘Leland Fay and the Mystery of the Episodic Barfing Adventures.’ It’s one of those situations where, if you had told me a few years ago I was going to get to experience nearly a month (in toto) of grueling 1:1 sessions with my pal the toilet bowl I don’t know how willing I would have been to submit.

What a minute, that’s not true. I mean what’s the alternative? Maybe its that I’m too stupid or Irish or ‘something’ to give up. Dunno. I’m too stupid to answer the question tonight. But I do know that I don’t have to stay in the dumps about this situation…that is if I choose to get out of it and change my thinking or attitude…but…how?

That’s what I’m thinking about tonight. How do you crawl out from under tough situations like these? I think everyone knows that staying low is not a great idea, on so many levels, especially if you have a tough medical condition. You know you gotta be positive and all that happy, um, talk…and nobody wants to wallow in it; and in this case “it” rhymes with a word that sounds like goop…um, no wait a minute, I mean sit, the it rhymes with sit.

The importance of changing attitudes/minds has surfaced a few times over the last few days. I was reminded after reading a Facebook friend’s recent post. She was struggling with the grinding treatments/scans and, more than anything, the fear. I could relate to that condition.

When I got booted from the clinical trial 3 years ago and, simultaneously, doctors discovered a redonkeylous number of brain tumors, and a medical professional advised us to shop for hospice, I visited a dark place. It wasn’t – crazy as this sounds – the darkest (that’s a story for other days). Regardless, it was hard to believe in anything for awhile; though I did come out eventually.

The process was/is never easy. Burning bushes resemble soppy messes. More than anything, the experience always directs me back to a lesson someone taught me years ago. If I’m having trouble believing in <whatever>, I can attempt to become willing to believe in <whatever>. Willingness to believe is, most of the time, all it takes to come to believe.

The other trick is gratitude.

However there’s a “trick” with the trick. When I’m not feeling particularly grateful, then gratitude has a tendency to piss me off…especially when some unfortunate soul suggests that I might want to attempt it (so cancer/melanohomies if you are struggling tonight, um, I would suggest you try some gratitude, but won’t, if you know what I mean 0-;). 

Returning to the scene of the crime, last Saturday morning I did manage to squeeze some belief as well as a little gratitude out of those thin, pale white hospital sheets. Namely as I lay there, the thought occurred to me that, sucky as it was, at least it was me and not the Sarah or the boys.

This hit particularly close to home as we were at the ER for Derek just 2 days before, after he fractured his arm playing hockey. Tough as that little guy is, he was crying his eyes out and that broke our hearts.

And so I was and am grateful tonight that we are not trying to solve “Derek Fay and the Mystery of Episodic Barfing Adventures.”

In turn, I’m at least willing to believe that my mystery will eventually be solved too. Let’s hope that’s a good start.

Image result for burning bush picture

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.