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.

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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…

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Mostly random assimilated thoughts

Should we go into the sun? Even somebody with cancer? Trolling different web and facebook posts by people with skin cancer, it would seem SPF 2Billion, sun blotting hats and clothing, and generally adopting a vampire lifestyle is the rule of the day.  Yet the answer is more complicated than that. A recent study underscored the need for D, ‘Vitamin D deficiency (≤20 ng/mL) is associated with an increased incidence and worse prognosis of various types of cancer including melanoma.’ http://impactjournals.com/oncotarget/index.php?journal=oncotarget&page=article&op=view&path%5B%5D=14316 This is interesting considering that some older studies I have read suggested that something like 2/3 of the US is V-D deficient…so add this to list of cancer causes along with breathing, eating, drinking, reading this blog (so sorry) and 10,000 others.

But how much D do we need and how should we get it? I have had some naturiopaths say more is better (up to 20K IU/day) but it seems like the general consensus is between 1,000-4,000 IU/day. Which is interesting if you consider that 15 minutes in the sun delivers a much larger payload of 15K IU. Wouldn’t it seem like supplementing at higher levels make sense as our bodies are potentially wired for bigger doses? Perhaps the n-paths are right. Either way that four letter word ‘moderation’ seems to be in order, whether chugging vitamins and/or heading into the sun.  The latter is important for mental health (and if you are me you need all the help you can get in that later category).

Guess what? Exports predict melanoma death rates will fall by 2050. When I first saw that headline I thought, ah, DERP! I mean I should hope so. My next myopic thought was, “Lotta good that does me.” But when actually reading more than headlines there was a lot of interesting commentary here, again referring back to the sun. Medical advancement and newer treatments will lead to lower mortality rates but also a greater awareness and appreciation for the dangers of UV radiation. As I have said before, gone are the days when it was cool and even considered healthy to plop down with a mirror and baby oil for 10 hours of some serious human bbq’g by the pool.

While not mentioned as part of their skin cancer reducing equation/prediction,  technology as it applies to treatment and diagnosis will likely play a part in all this as well. A team of Stanford scientists are developing an artificially intelligent (AI) diagnosis algorithm for skin cancer that might change the way medicine operates.…hopefully eventually coming to smart phone near you…I know I could have used this, or at least my highly paid dermatologist with the awesome hair and surgically enhanced chin could have. I am not bitter, actually I am not, really I am not, not, no, just saying he really could have used it and while the algorithm and technology is obviously expensive to produce this is an example of how computing technology really could make a difference in the treatment of illness… as well as perhaps replacing human workers… leaving us more time for useful and meaningful pursuits such as hours of mindless playing of Call of Duty 2 on “the boys” Xbox.

I wonder what the Master Video Game Maker thinks about me playing a simulation (Call of Duty) within a simulation? That is if its true what Elon and some theoretical physicists say? http://www.collective-evolution.com/2017/01/02/its-a-legitimate-scientific-hypothesis-are-we-living-in-a-giant-computer-game-simulation/ “Elon Musk said that the odds are “a billion to one” against us living in “base reality.”

Or if not living in a simulation perhaps a different kind of artifice? That relatively “old” theory (you know like 10 or 15 years) that we are living in a holographic universe keeps popping up over the year. “A UK, Canadian and Italian study has provided what researchers believe is the first observational evidence that our universe could be a vast and complex hologram.” For whatever reason this creeps me out a bit more than the simulation idea. Are we on stage? https://www.sciencedaily.com/releases/2017/01/170130083231.htm If that is the case I am going to ask for the writer/director role. I convinced I won’t f it up too bad 0-;

Finally, this has nothing to do with the above other than the fact that it happened today (or did it? Or did it happen a few million different ways before or at the same time) but I got quite lost running @ palmer lake today for a few hours (around 2 more than planned) and leaping over fat mountain lion tracks and jumping over bear poo land mines (okay the whole leaping/jumping thing is a bit of stretch). This served as a reminder, in this list context, of the golden rule while hiking in Colorado.

 

 

ALWAYS ALWAYS STAY ON THE TRAIL DUDE.

 

 

At least I had Bassnectar along for the ride.

IMMERSIVE MUSIC MIXTAPE – SIDE ONE

 

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The Post-Truth Calculator 3000

 

Sorry, gonna break out my outer nerd here and propose something…

What happens if you get an email for instance with a subject like, “NYT Reports Hilary C Gave Birth to Siamese twin sister night after election,” but don’t feel like hitting politifact to determine if its “real” yellow news (eg fake news) or not. Derp.

The answer to these sort of questions got me pondering recently (not about the whole Siamese thing, I think I got my answer, thank you National Enquirer) and the answer is, of-course, that we need an app man!

Namely we need an application for any kind of thinking machine- smart phone, tablet, laptop, and, if we get really carried away, human implant (that last option planned for the 2.0 version, also known during development as code name “People of Earth”) that can essentially automate the fact checking process and remove the droll and so very ‘painful’ process of having to actually fact check data ourselves. So, without further ado let me introduce a concept for “The Post-Truth Calculator 3000.

Here’s how the Post-Truth Calculator 3000 would work.

The basic design, functionality, and usability would borrow heavily from virus scan engines. The application would look at incoming email, websites, application data (eg a Facebook plugin) and bounce that information off an FCD or Fact Check Definition library. The FCD would consist of an ever expanding universe of known information viruses– suspicious emails couched in inflammatory email subjects, yellow news, total bullshit sources etc. Business logic would also perform “heuristic” type reviews or scan for typical semantic and natural language patterns in reporting “BS “information such as word patterns. as well as look for more basic stuff such as if citing sources and/or if arising from certain websites of ill repute or report. In addition fact check experts (eg human researchers) would populate the database with the information they create. All of these various inputs would conspire to create a burgeoning, learning dictionary of fact checked information.

The information scanner would then indicate in the email or on the app that it found something that smells bad, perhaps on a scale of “relative factual smell” and indicate that fact with the display of corresponding icons; for instance show a “rose” if the facts seemed right or a dog terd if wrong; the user could then click for amplifying information if wanted or cared. But the point is that this application would eliminate the need to manually bridge the gap between reading an email or browsing news and hitting a fact check website. I would like to see added enhancements such as where the email originated from (as in the name of the author or originating location, eg “Macedonia” = bad).

So at 100K view the main components envisioned are:
1. plugins for different browsers and apps (such as facebook) would parse data and feed to a …
2. fact Check engine installed on laptop, tablet, smart phone etc which would do heuristic checks for common “information smell” and call an…
3. application programming interface with hooks into…
4. fact check database – populated by Fact Check sites like snopes, other. There could also be an api that allows different organizations like that to build applications for contributing to the database. The key here, IMO, is the…
5. fact check schema – which defines a standard way to representing and qualifying fact checked information such that different fact check experts can provide the information in a consistent manner. Side note: I think this could be VERY powerful if done right. A good schema for defining this problem space is a subtle but critical aspect of how different fact check systems agree on what essentially makes fact check information. An organization that could define, publish and demonstrate how to use this (as well as provide an open api for generating results and reusing facts which other development projects could use) could IMO quickly take ownership of this problem space.  Anyways, the fact check engine, based on call through api and underlining data would produce…
6.  fact check result  – I imagine some kind of fun iconography at the bottom of browser, facebook, email or wherever which indicates that the page or email someone is readying a) has been fact checked and b) visual indication (such as dog poop) indicating that information to be, um, dog poop (would also be good if there was a way for user to request a fact check on something if there data that has not yet or may appear to require fact check).
Inline image 2

Another key ingredient is obviously that you have an organization or group of people committed to the truth who, however tempting, resist the urge to take a political, ideological, social, religious etc position…computers are probably best at remaining neutral but are not (yet) rational beings. However I think you could probably create a ruleset that would help with that impartiality if that direction was chosen. For instance, any bit of information arising from former eastern block country “x” + american politics = suspicious dp (dog poop).

I think this kind of application could have utility in other areas… for instance for people researching cancer options.

Alright I’ll wrap this up.

Its nearly impossible to trust a lot of what we read anymore. So I think this idea has, as my Dad used to say, a nice pair of gams…it might have some legs.

Sure companies like Facebook might hate the the PTC-3 because it might drive down the number of shares driven by clickbait articles. But I believe there is, or at least should, a backlash coming for all post factual political and other crap out there. People want a return of or at least the appearance of journalistic integrity and objectivity; in the absence of that a fact check engine could be a useful gadget. And sure, perhaps people like me should be more disciplined and devote more time to checking and verifying sources of information make it easier and pull something like snopes right into those applications for one stop, no bs shopping?

So if you’ve got some 2017 $$$ cash you want to invest into this project let me know…or you can simply steal the idea from a stage iv cancer patient and pretend it was yours…at least the idea is out here now in the universe…perhaps this butterfly can flap its wings and cause a hurricane.

 

 

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Proof of Crazy

Hopefully not complaining here but this has not been an easy last few months. I am not going to talk about the doctors visits and procedures themselves (but if you want more info just holler and I will share my experience with you). That was grueling but not the hard part. By far the most difficult aspect of this experience remains the battle between my ears.

I would love to tell you about waltzing through Stereotactic Body Radiotherapy (SBRT) and a million doctors visits while skipping my way to happy destiny, girded by faith and quite certain of my future, confident that all was going to be A-okay. I certainly tried to tell myself those things on a daily basis. But there have been plenty of other internal conversations miles from cheerful.

Wait, did you feel that Leland? Is it even working? Oh its not working see? I told you. See you’re tired? See you have a headache. See you feel sick. Wait, I know what’s going on here. You are so screwed its not even funny dude. That’s not the radiation bugging you, that’s called progression man, PROGRESSION, you’re screwed, game over man, game over! 

Moments before getting the news about the CT results this last Monday, I was bracing myself for whatever came next…though if you had asked me to be honest (I know tall order) about probable outcomes, I likely would have gone the Bill Paxton route and told you I thought I was completely hosed.

So, all that being said, I am pleased to report that my recent adventures with sbrt appear to have been effective. CT scans showed that the tumor in question (located in hepatic lymph node next to liver) has shrunk and decreased in density.  In turn, CT and MRI scans show no progression of disease in other parts of body or addled brain.

Needless to say they are clocking winds in the 100 mile an hour range tonight in Colorado and some may very well be sighs of relief.

And all of this proves of course that I am not only a little bit nuts in the head but also very blessed.

Thank you all for your support, continued prayers and well wishes.

Lelan-derp

PS. One of my new years resolutions is to start hitting this blog again. There I said it, so I will see you likely in another 3 months 0-;. No, seriously or not so seriously (we won’t know until we see if I actually make good on this promise), this particular chapter of the battle knocked me down a bit and I haven’t really wanted to spend more time thinking about melanoma or brain tumors. Regardless, hope to be back next week. Peace.

 

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Thriller

Connor and I were chowing sandwiches at JJ’s the other day and I looked up to find this quote- cuz you know if you ever want sage advice you head to the temple of the #13 veggie with the extra hot peppers while living vicariously through your son’s roast beef sammy.

The words went something like, “When you don’t get what you expected its called an experience.”

Thank you for that Buddha, I mean JC, I mean JJ, you know Jimmy John, I think.

Anyways, this got me thinking about my most recent, significant, unexpected/unplanned ‘meal deal’ which arrived in the form of CT scan a month ago. Recall that the CT scan is where you drink the most disgusting beverage on the planet (likely brewed by Old B-bub himself in the bowls of H-E-double-L) and then doctors search your insides for old keys and razor blades, 4o year old chewing gum strangely shaped into the faces of Elvis and Barbara Walters (I don’t know why I wrote Barbara Walters there, I really don’t), gnarled nests of 300 foot parasites, undigested #13 sandwiches, and of course cancerous tumors (unless they are in your intestines in which case well, um, see one of my previous posts).

So we have all (like all ten of us here inside me) have been following a tumor in the hepatic or liver lymph node area for the last few years. It was shrinking since 2015 but as of this last scan had grown in size. The good news is that there was no other activity in the surrounding neighborhood and, according to some quality time with “The Google” when I got home, 40% of the time when someone is otherwise responding to immune therapy, growth in a single tumor is indicative of T-cell or good guy immune cell infiltration. Okay actually the stat was 39% if I recall, but I’m exercising my ‘constitutional’ right as an internet user to distort the facts.  The bad news is that 60%, not-61%-people-try-to-pay-attention, it can be indicative of progressive disease.

I took all of this incredibly well! Like, Oh-my-gosh, of-course!  Derp! I didn’t like lose my marbles for a little while over some drama surrounding one of my son’s hockey tryouts, fitting doctors visits around managing a $34M project and 60+ engineers, the possibility that this could be progressive disease etc etc…I didn’t like experience rage and despair and all that, cuz that wouldn’t be normal and I am as normal as a 3 dollar bill y’all.

The immediate  option presented was one of waiting and seeing. As you many of you know I am not really cut from the waiting and seeing clothe of psychopaths. I mean I am thinking lets get all medieval on this thing’s ass, just in case we are in that 60% zone. Luckily my trusty oncologist buddy in LA (Omid Hamid) concurred with that idea and so we decided to go with the cyber knife which is a non-invasive robotic based surgery that delivers relatively low dose radiation to precise points in the body. The whole low dose and precise part is important since radiation and the liver are not friends; in fact I don’t even think they like each other.

Here’s where it gets kind of interesting on a few levels. For one, current research is showing that low dose radiation can be stimulating to the immune system.  For two, sometimes immune therapy in combination with radiation treatment can be even more stimulating (in an immune system kind of way) and trigger what is called an ‘abscopal effect’ or tumor regression at distant sites from where the radiation occurred. There was after all this famous case: http://www.nejm.org/doi/full/10.1056/NEJMoa1112824?rss=searchAndBrowse&#t=article.

17 doctors visits, one surgery to insert fiducial markers (gold tags that help the physicist and doctor calibrate the position of the node; btw I asked if he could remove and melt that down for my grill/teeth after we were done but doc didn’t laugh and simply said ‘no’), another visit to get fitted with a man girdle so that I couldn’t breath much during procedures (I should really have brought that home and wore it around the house), 5 procedures, and few more JJ found quote experiences, 40 days later and here I am looking quite blinged out with gold tags up in my hepatic region, at least when next viewed through computerized tomography.

Stay tuned on the potential immune responses as well as treatment outcomes. I will let you know.

In the meantime and just in time for All Hallows’ Eve,  please enjoy what is quite possibly the greatest music video in the history of music videos.

All these unplanned experiences are, after all, thrilling.

PS. Not sure what the whole “Volga” word means and why @ half way through the video the “V” starts descending. I read Volga is a river in Russia and/or a girl’s name. Perhaps Volga is trying desperately to escape this video.

PSS.  I am definitely going to start a new health club fitness craze, drawing serious inspiration from them there dance moves.

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Normalized

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

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

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

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

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

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

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

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

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

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

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Hello Cleveland

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

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

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

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

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

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

Okay, everybody hug it out. Right now.

Or not…

 

 

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The escape before the escape

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

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

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

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

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

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

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

“Suspended in the air

Don’t you feel better

The words you didn’t hear are coming from friends

Take your little fantasy, mix enough audacity

Today you throw your head back in the wind.”

Astronaut – Disco Biscuits.

Image result for funny pictures of black holes

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I’m just saying…

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

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

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

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

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

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

Love,

Lelan-derp

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

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

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

My Dark Resume

Has a mangled neck and a broken skull

With a messy stomach

And hair falling out

Stretching the furthest reaches of more

with less and less.

I fear when fear is gone

I will grow afraid of my lack of fear.

Worse than some

Better than many

Trying to grasp

A dream of a hope of a dream

About hope

About kids

without compunction

or guile

or bile

or style

I care

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

Fever, itches, dumb stitches

rotten plumbs conceived on vines in caves made out of tubes

Scar the landscape

Like carpet bombs dropped indoors

Human headaches

Apocalyptic milkshakes

Down the hatch

So minute man doctors can scan

Internal horizons

Seeking coarse things in the lightning darkness

that usually are not there

or can’t be found

Ever to give up

what I surrender.

But know this

Write this down

Below my name and address

During the interview

And underline it twice with a red pen:

Cancer may be the diagnosis for now

but it’s not my sign man

never will be

I’m a Capricorn motherfucker.

 

 

 

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