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.

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?”

Unexpected Gifts

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

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

Grateful was I. yoda

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

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

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

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

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

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

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

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

From the Temple of the Jedi Order,

The Jedi Creed (Christian Jedi Orthodox Version),

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

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

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

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


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

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

hockey ev2

Led to a true Christmas miracle.

asleep

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

There’s this:

Reminded me of the classic:

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

https://tookapic.com/dvader

What to wearI might be dyingOh well

 

Will frame next to these album cover makeover mashups:

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

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