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.