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.

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

Your Mission Should You Choose to Accept…

I mentioned during my last post that I’m grateful for the advice Susan Steel provided when I was first diagnosed with Stage IV melanoma. As I was running and thinking about this the other day, I realized that the way in which she delivered the information, in hindsight, was also quite exceptional.

For one, Susan never told me what to do. This, as some of my friends and family might surmise, was probably a wise decision. 0-; Instead she gave me a mission which I could either choose to accept or deny; but in either case the phone would self destruct in 5-4-3-2-1.

Image result for top secret briefcase picture

In this manner Susan led me gently in the right direction and taught some lessons which I still use to this day. I thought sharing some of these ideas might be valuable to my fellow melahomies reading here; or to a anyone facing medical spaghetti junctions in the road.

It was all kind of black hat-ish in hindsight. Susan practically whispered about a paper she’d recently obtained from a prestigious and well attended summit of melanoma researchers and oncologists in Chicago, fall of 2012. I admired her pluck – inserting herself in conferences and conversations where only doctors and phd’s feared to tread. She told me how, in many of these meetings, she was the only patient advocate, sometimes wanted and sometimes not.

I imagine her stepping up the microphone amidst a room full of cold shoulders in white jackets.

“And your name is?”

“Steel, Susan Steel,” she’d say and then lay down a heady dose of common sense or irony designed to make people think…which isn’t necessarily practiced in any professional organization, let alone medicine.

Anyways I had just finished describing my plan which included enrolling in the combinatorial BRAF and Mek inhibitor clinical trial. Susan, in so many words, suggested I might want to reconsider my position.

I thought it was odd how un-enthused she received my plan.

“I’ll send you the pdf, and we will talk on Monday,” she said, “oh and please don’t tell anyone I gave this to you” and hung up.

That was a Friday, the end of our conversation, and though I didn’t know at the time, it was a test.

The paper turned out to be a fat paper of papers, boiling over with a couple hundred pages (at least) of medical jargon… enough jargon to inflict eye-roll-back-disorder and a coma like state of duh, within seconds of reading. But I was “in”, committed, and otherwise motivated. Besides if I could get through Heidegger, Joyce or Foucault or those thousand page engineering books without blowing my brains out (yet), I could do the medical foo too.

There was actually, I found, a certain amount of treasure hunting involved once I got started. As a newbie to that world I didn’t understand all the terminology but wanted to unlock its secrets nevertheless. That meant wading through stuff like this:

…9x11mm ill-defined and spiculated nodule with surrounding ground glass density (aprox 1mm larger than previous scan) in the superior segment of the right lower lobe. Primary differential consideration is primary lung neoplasm although active fungal disease could have the same appearance. Biopsy should be considered. (air bronchograms extend near the margin of the nodule but definitely do not extend through it)…ad infinitum…Cha-Chink-BOOM!

pulling hair out

Luckily, most papers in this collection had introductions and conclusions and the conclusion I eventually arrived at was that doing the BRAF and Mek1 targeted therapies was not advised, yet. The melanoma megla-maniac-minds recommended instead, as in my case, that a “low tumor load” (my condition at time) was a better fit for immune therapy. In such cases there was some measure of time to see if the intervention would work. The targeted therapies such as BRAF and MEK1 could, in turn, be kept in reserve as a last ditch effort should the immune therapy fail. As I recall, @ 70% of people experience good results with targeted therapy.

However, after 6-12 months almost all (the paper discussed) patients develop a resistance to the treatment. Even though my original plan was novel, in the sense that they were combining BRAF and MEK1, the collective wisdom was that patients doing this would eventually develop resistance. So perhaps the best course, they suggested, was to go for an immune therapy. These carried a much lower success rate but, when they do work, can result in longer lasting or “clinical” outcomes. If these fail, I could then go with the original plan which had a higher short term success rate but more morbid long term prognosis (Note: new studies have shown that even when somebody develops a resistance to a targeted therapy, sometimes they can be reapplied or re-tried with success; if interested, google “re-challenge” and “braf inhibitor”).

Okay, so if you are still reading and that last paragraph did not cause eye-roll-back-disorder or a catatonic state of duh, what’s my point? The point is being informed was my job. Despite a strong desire to have somebody of authority (Susan, the doctors, Somebody dammit) tell me what to do, I had to make a decision on my own. As I’ve shared/whined in the past it can be agonizing how little doctors actually participate in the decision making process. This seems in direct proportion to the severity of the diagnosis. Anyone that is hoping for a authoritative direction when it comes to dealing with advanced stages of Melanoma may be in for the same comedy of disappointments (kind of ironic or maybe pathetic though that I whine about this when all but stated above I don’t like being told what to do). So, either I could educate myself and try to make the best decision…or not.

But, as Susan guided me and lived her life by example, it was my job alone to do this, 1 billion pages of medical highfalutin lingo be damned;or even the doctors and clinical trial process be double damned for that matter. I mean, some of the same doctors that had signed/contributed/read/reviewed the aforementioned super duper topic secret paper of papers and attended the all mighty seminar, were the same ones who with a straight face recommended that I do the first clinical trial. Sure, do the targeted therapy Monseigneur Guinea Pig, even though we think that immune therapy is probably your better long term option…alright, alright this is getting a little carried away…don’t think there was some mass conspiracy, a plan by the man to keep a poor melanoma patient down. True there are a few idiots and a-holes out there (have had a few appointments with some of them…as someone intimately familiar with idiocy and a-hole-ness, I feel qualified to recognize one…hmmm…feel the topic of my next blog coming on). All rambling aside, there are indeed some serious flaws in the clinical trial process (great blog post on this subject here, see chaotically precise, The Problem with Clinical Trials) and, okay dead horse being beat um deader here, my job is to be in the know bro.

Lesson two came next. I got a list of doctors across the continental US to go see. I didn’t have to see all of them, but at least some were, um, highly recommended. Why? First off, and as I’ve said before as if it were my own (now you know even more that I have no original thoughts), these were melanoma doctors that specialize in melanoma patients using melanoma medicine. Nothing against the vanilla oncologist, but this makes more sense. They are in the game, every day, taking lay-ups, practicing free throws, and hopefully getting in a few slam dunks on melanoma.

What’s more, as Susan taught me, I was building my network of contacts. I might need the full team if I was in the this fight for a long time. And I since found, just as she taught me, that not only was it important to find the right, specialized doctors; but I might need to call or email all those doctors on the list with questions or additional treatment options. Making an appointment and showing up on their doorstep at least once, makes it a lot easier to get a hold of them, down the road, with questions, again. These are some good dudes too and they get back right away; this because all the good melanoma doctors are on major pharmaceutical grade methamphetamines and they don’t sleep (but its okay because, um, their doctors and these specific meds are non addictive, really).

Wonder if I should crank call one of them now?

Or maybe offer a joke?

Joke about NASA, Full Of Bright People

Three men were in a NASA conference room to decide how to spend $10 billion.
“I think we should put our men on Mars!” said the first man.
“Ooh, good idea,” said the other two.
“I think we should put our men on Venus!” said the second man.
“Ooh, good idea,” said the other two.
“I think we should put our men on the Sun!”
“How are you going to do that?”
“Easy. We go at night.”

Anyways, when it comes to medical decisions your mission, or Susan will come back and haunt you up, should you choose to accept is:

  • Never tell me what to do… or call me Francis for that matter…or I kill ya. I suspect Susan would have too.

  • Be informed, read stuff, even if you are scared or feel inadequate to do so; or, as they advise in other circles, if you can’t do it find a friend who can for you
  • Realize I know something about a-holes and might blog about this next, you might want to skip my next post
  • Seek out the good doctors and build a relationship or team of them to call on…never know when you need a good post up guy or three point shooter
  • Remember that the good doctors take lots of uppers and don’t sleep at night so its okay to email or call them and don’t worry because they are doctors and they won’t get addicted but you will man so like cut that crap out and like ‘Just do it’ …ah, that is, I mean be like Nancy not Mike and ‘Just Say No.’

98 Brain Tumors Later…

Here’s the cliff notes of what I want to say with this post to my friends with cancer, melanoma, brain tumors, myself (which is close to the number of people reading this blog), et al of you tonight, right now:

Don’t give up.

  • Even after cancer spreads through lymph nodes to liver, lungs and stomach in a few short months after diagnosis
  • Even when you get told you have 43 brain tumors and likely 6 weeks to 6 months to live
  • Even after you get unceremoniously kicked out of the clinical trial you’ve been doing, once a week, 1000 miles away, for the last six months
  • Even after 9 months of stereo-tactic surgery and immune therapy side effects gone wild
  • Even after you discover you actually had 98 brain tumors all along (not 43 tumors, this is an extreme version of a cranial “clerical error” 0-;) and “get to do” six more months of cranium drilling, tube riding radiation – yeehaw
  • Even after you to do brain surgery to remove one particularly nasty necrotic mother-bugger

Why? Because there is still a chance. There is man. Even if you are not feeling or believing that. There is a chance today. So don’t give up!

I know-I know-believe me I know- this is easier said than done. When you are in the middle of The Shat, it’s just not that easy.  In fact I drove myself all up in and around crazy town, getting confused by all the crazy town street signs, all the crazy town people and crazy words and crazy arse music, worrying about the 1098 crazy things I couldn’t control. Eventually I had to give it up. Somehow or another the lesson of worrying or getting fearful and pissed wasn’t going to make anything better.

So maybe the message is: Give up don’t give up? I guess that’s right.  Doesn’t really make a lot of sense at face value but whatever. But if we can live with other vaguely inept statements in the English language like “exact estimate”, “pretty ugly”, “only choice”, “seriously funny” or “clearly misunderstood” we should be able to accommodate “give up don’t give up” (however clunky the statement sounds).

There’s always the serenity prayer which does a pretty good job of summarizing the sentiment involved:

Lord, Grant me the serenity to
accept the things I cannot change,
Courage, to change the things I can, and
Wisdom to hide the bodies of those people
I had to kill because they pissed me off.

What a tic, that’s not it, please don’t mention that faux pas to my parole officer, case worker, psychiatrist, parents, psychologist, psychic, sponsor, friends, priest, minister, wife, kids, employer, cats, dog (especially the dog, she thinks so highly of me), here we go, sorry:

Lord, Grant me the Serenity to
accept the things I cannot change,
Courage, to change the things I can, and
Wisdom to know the difference.

And in the words of some immortal friends from another bunch of beloved crazy-pantsed people I know…’C’monnnnn Wisdom!’

PS. Am back to work after the holidays which gave me occasion – while waiting for code to compile or listening (attentively of-course) in meetings – to catch up on what’s happening in the world of melanoma research. Anyways this fairly recent summation of previous published research made me think of the above. I was reminded today of how low down I felt looking at the numbers, stats and treatment options three years ago. There was no encouraging kinds of research like this available. But, the interventions discussed in this article are in fact what I ended up pursuing:

Brain metastases, melanoma, stereotactic radiation, and nivolumab

If I can help, encourage or assist you my friends please let me know and peas be with you always.

Image result for peas be with you

Image result for peas be with you

 

 

And not huge a fan of profanity in print but, while on the subject of peas, this is funny, don’t care who you are:

Image result for peas be with you

On Melanoma, Weed, Jimmy Carter, and Zombie Beavers

Some interesting news this week regarding melanoma and weed…okay, actually, this is a little bit of false advertising…I know-I know because like I live in Colorado, and I think Jerry Garcia should have run for president (dunno maybe he still could, might be better, cryogenics or Randal Koene save us), and like, um, I live in Colorado (oh wait I said that already, ahuh, ahuh), that you thought I was talking about the art supplies, the sticky icky, the wacky tobacky, the weed man, Jeff Spicoli’s perpetual homework assignment from Mr. Hand man.

The news was actually regarding melanoma and seaweed; or more specifically a sugar called L-fucose which is found in seaweed (especially) brown kelp, mushrooms and some seeds. L-fucose was demonstrated to slow down cell metastasis (division) and spread in melanoma cells (Melanoma and L-fucose). I’ll likely be adding more kelp to the rotation in the pantry; or, maybe next time in the area, I’ll go for a swim at Downtown Aquarium in Denver and do some grazing at the bottom of the tank. That won’t scare any kids off or anything.

Of-course these results with seaweed and melanoma were demonstrated in mice; who knows if that will translate into positive results for humans. To verify that we will likely have to wait ten years and for a major pharmaceutical company to spend a billion dollars on research and development and for the FDA to approve…unless of-course you are Jimmy Carter and/or a possible member of the american aristocracy and little things like FDA approvals do not necessarily apply to you.

In the last six months he announced that he had melanoma and it had spread to various parts of his body, including his brain.  In turn, it was noted that he would be receiving gamma knife and Keytruda.

It’s the Keytruda part that got lodged under my craw, a little.

Why?

Keytruda is not yet FDA approved for first line treatment for patients diagnosed with advanced, Stage IV melanoma. They are working on that and it should happen soon, but not yet. Keytruda is only approved as a second line treatment. In other words its supposed to be given to people only after they have received other interventions such as yervoy or chemotherapy first. If and when they don’t respond, then they are allowed to get it. That’s not just a nice-to-have, its the law. Wonder what any of those families who have ever petitioned the pharmaceutical companies and/or the FDA to get a medicine before approved (and were denied) for themselves or their loved ones would say?

Okay, this is may be unfair. Dunno. Dunno the whole story. These are things conspiracies are made. That’s always-always-always possible.

For the record, I have nothing against former President Carter. Think he’s in a good place, as elder statesman, to make truthful statements in the media and he certainly has availed himself of this…referring here to his recent quip about US politics becoming an oligarchy controlled by private interest groups and unlimited political bribery (Carter and Oligarchy). Probably some truth to that.

And its cool how much he appears to be doing with his charity and humanitarian work in the world, and has been for a long time. Probably has done more in a few hours more than I will ever do in a lifetime. Don’t know what he’s had to put up with or go through to accomplish this, never walked in his shoes.

And its cool he received the same treatment I did and is doing great (.Washington Post: Jimmy Carter tells Sunday school class that he has no signs of cancer).

All good man.

But…

How did he get Keytruda before FDA approval? Did he receive yervoy or chemo first? Or was there a special dispensation? If the answer is yes does this maybe seem a little inconsistent or, perhaps, oligarchical. Ish?

It occurred to me after getting a little hot under the collar that the reality to cut it out.

In case hadn’t noticed lately, I’m not the alpha and omega of the universe. I don’t know all the rhymes and reasons for why things roll they way they do. I mean really Jerry, why did you have to die in 1995, four years after I got sober and was still too crazy to once again enjoy your music? And why is there only one word for the word ‘thesaurus’ or ‘abbreviation’ such a long word? Why does sour cream have an expiration date? Why doesn’t Tarzan have a beard? Why don’t fish get cramps after eating? These are mysteries I will never be able to solve. I could try but they might, in turn, only create useless and futile conspiracy theories.

So the best option seems to be gratitude today. Gonna remember this while I’m chowing on my seaweed, sipping on some turmeric tea, or popping some bifidobacterium (The Atlantic: 11/2015 – Immunotherapy cancer drugs depend on gut microbes), FDA approvals, inconsistencies and frailties of people and life, or whatever, be damned.

Finally, I will take solace in knowing that none of this really matters anyway.  In case you didn’t know the world ended last year. In some kind of bizarre, mass Jacob’s Ladder scenario, we haven’t realized it yet.

Here’s proof that Nostradamus was right, that the world did end last year, as  heralded by the release Zombeavers trailer in 2014.

Now perhaps we can only be saved now by a Fast Times sequel: WeWantAFastimesAtRidgemontHighSequel

It just doesn’t matter

Had an endoscopy on Thursday due to acute-bordering-on-chronic abdominal pain.  When I woke from general anesthesia I met with the doctor and he let me know that I was the proud Poppa of inflammation in my stomach and a bouncing baby ulcer.  Should have known better and been expecting this surprise- namely because I wasn’t expecting this surprise.

This is one of the near constant lessons of the entire experience, something along the lines of “just when you thought it was safe to go back in the water…”  There are so many twists and turns.  Whenever I’m convinced that I know what the next turn is going to be, there’s a twist in the turn.  Prior to the procedure I was pretty certain that the issue was going to be gallstones.  Those still may be in play, more tests are needed.  But for now we need to address the ulcer.

Needless to say, my reaction to the news was crappy. Like epic crappy.

“Normally,” the doctor said, “ulcerations in the stomach are pink.  You’re particular ulcer, Mr. Fay, is pigmented and due to your medical history this could be melanoma.”  That was all I needed to hear.  Felt like I was pinned to the bed. Next came my typical reaction to this sort of news. I don’t cry or talk or whatever.  I get mad.  And I was hurricane Katrina mad.

Now, we don’t know if it is a melanoma ulceration.  Won’t have biopsy for another couple of days.  What’s more, previous non cancerous ulcers in my gut have been pigmented.  So there is hope and reason to believe that this one will be the same.  Even if it is not something we want, we aren’t talking hundreds of tumors.  There may be more steps we can take.  But I wasn’t having any of that puerile hope stuff.

I know part of it is I am exhausted. Tired of butt kicking.  Didn’t eat for 4 days last week.  Can’t enjoy food – even my crappy sugar free, non-bacon and juicy burger eating, vegetarian diet, such as it is. Tired of trying to maintain some semblance of normalcy.  It’s a lot of pressure to be working, being a dad, hitting all these appointments, trying to be positive along with kind, patient, helpful yeah yeah yeah…  I guess these kinds reactions are to be expected.

But, got to say I’m sick of that too.  Maybe more sick of the sucky attitude than anything else.

The reason I’m bringing it up is because I woke up Friday morning and realized I had to at least try (emphasis on try) to snap out of it. That meant getting up a half hour early in the morning and spending some quiet time and attempting (emphasis on attempting) to get myself right.  It meant trying to attempt (equal emphasis on both trying and attempting) to be helpful to somebody even when I don’t feel like it.  None of that makes sense to me.

But I can tell you, three days later, it works.  I don’t know how or why but it does. Its better. I feel a little better. Have some acceptance going and realized that it doesn’t matter what happens if I insist on an ulcerous outlook.  The attitude is what will make or break whatever comes next and today I choose to believe that whatever comes next is good, thy will be done.

Dunno where these dorky references to “old” movies arise but Bill Murray has taken up a chant in my head.

 

Me Medicine

No, I am not regressing to cave man, going all Tarzan, or trying a new paleo diet for English language.  If only things were this simple:

Me medicine.  Me medicine good.  Me want cure medicine Jane now.  

Some might say that “neanderthal speak” or the like would be a definite upgrade for 98braintumors.com.  I’ll grok on that later…

In the meantime, the more popular terminology for “Me Medicine” is “Pharmacogenomics” or the more palatable sounding “Precision” or “Personalized Medicine,” or PM. It’s something I’m enthusiastic about, at least from a user perspective. In my opinion PM is the future of cancer therapy as long as we don’t screw it up too badly.

Imagine you have recently been diagnosed with cancer.  You’re freaked.  You’ve done a bit of research on the internet, just enough to freak you out more.    The “fight or flight” response kicks into full gear. In a lot of ways you are reduced to a primal, ‘Me Medicine Now Jane’ state.  You’re thinking is on par with ‘Ug’ the caveman and you wonder how long until he clubs you over the head and you melt into a simpering puddle of shivering goo.  What about your wife and kids?  Is it gonna hurt?  How long do you have? Wait, does your stomach hurt?  Your elbow?  What is that in your foot?  Have you felt that feeling in your big toe before?   

In walks the oncologist.  You soon start wondering if he’s framed in an angelic white light or if its just the long coat.  That’s because he tells you how extremely lucky you are, that five or ten years ago, he would not have known the exact chemotherapy or immunotherapy, along with the right supporting medicines, to “cure” your cancer.  Sure it might hurt a tad when they stick the needle in your arm once a week (poor baby) but man, you are home free.  You suddenly find yourself in a world restored to “ah yes” instead of “oh, sh, um, shoot.”  

Needless to say, this was NOT my experience.  During my visit to the doctor’s office we started with statistics, jumped into disease processes, talked staging info for malignant melanoma, and I honestly can’t remember what the heck happened next.  I recall the medical “nerdery” was vaguely interesting in a nice and sterile/non emotional kind of way.  But it was by no means the central goal of the conversation as far as I was concerned.

Soon the doctor started pinning treatment options on the statistics- radiation, chemo, surgery, wait and see, clinical trials, immunotherapy, targeted therapy. These things were prioritized and, probably because of my cave man status, moved through my ears in dizzying and confusing sequence.  Each course had its positives, negatives and associated risks. Some were more provocative than others.  But none were a slam dunk solution. I realized that the doctor was not going to tell me what to do.  As much as my paltry research had indicated this would happen, I was still clinging to a #2 pencil sized glimmer of hope that he’d have magic bullets loaded in his anti-cancer Gatling gun.  

But wait Doc, so you are telling me that the medicine you are recommending can cause life threatening colitis, hepatitis, dermatitis even toxic epidermal necrolysis, neuropathy, endocrinopathy, and anal-leakage-itis (I added that last one, seems like every rapidly-spoken-disclaimer-on-TV-talks-about-anal-leakage-itis-don’t- you-think?) and, yet, it has a 15-20% response rate.  In other words, I might get the privilege of a couple weeks of pure insomnia, fevers, and hives only to find out that the stuff didn’t work and/or my immune system was completely trashed and now cancer could have his/her proverbial way with me?  In fact there is a darn good chance (as in a 8 out of 10 person chance) that the stuff ain’t gonna work?  Sphincter says what? And this makes sense why?

You know this wasn’t the doctor’s fault.  It’s indicative of the state of the fight against cancer.  The answers are not yet clear.  There is no small box equivalent inoculation. You can’t knock out a tumor with a mouth full or a month full of antibiotics and bed rest (dammit).  “It is what it is” and “ain’t what it ain’t.”

But what about, “what shall or could be?”

In the software industry we have a process called “test driven development.”  Rather than writing code first, the developer begins by writing the test case (usually automated) which is, at least initially, doomed to failure.  But by doing so he/she essentially creates the success criteria for what shall or could be; then writes the code to pass the test. In this sense when you fail you pass.  What if there was a similar methodology, “Test Driven Oncology,” that could applied to cancer treatment? Test and “fail” first, then code the prescription, based on the definition of success criteria.

I’ve read somewhere that there are over 1300 different genetic tests on the medical horizon (for cancer and other diseases).  Many of these tests- even ones for a full genomic profiling- will be south of $500 dollars (which is BTW, @ 25% less than one of my quarterly scans).  There are also companies and clinical trials offering molecular profiling and tumor testing.  And companies offering to grow your cancer in surrogate mice (mouse avatars), such that a barrage of drugs can be tested against it, before testing it on you, Mr. Guinea Pig.

I got real close to doing that last one.  Had the initial interview.  Talked logistics.  At the end of the day, I did not want to talk about the money.  Thank God I had other options.  However, it remains in the category of “last ditch efforts” if I need it.

So what is the point of telling you about all this?  Its to provide an outlet by which this data can be shared. I think its important information that people need to know. Personalized medicine is potentially a far more effective medical practice.  It is out there and it is growing.  Perhaps most importantly, it’s possible that the potential could be realized for you right now. If you have cancer and can afford it, there may be a better way to understand and treat your disease as of yesterday, tomorrow, next week – things are moving that fast around these here parts.  If you are taking care of someone with cancer, ditto.  Google “precision medicine” or “personalized medicine” + “<insert your cancer type here>.”

If you are running a hospital or are an insurance provider, PM holds cosmic possibilities. I think I read that the average cancer patient costs @ $1M.  Just think if you could prescribe a test for $500 which led to a prescription of a $100K medicine and the story stopped there; instead of paying thousands of dollars in scans, followed by successive series of $100K treatments, hospital visits, oncologist visits, specialists and surgeries and hospice as your patients tumble down to the bitter end.  Stopping with the one test and the one treatment is not only good for the patients and their families but the bottom line. And what a new, more powerful bottom line that could be!  It is the stuff of which Vice Presidents and CEOs are made.

The pharmaceutical companies are already hip to the potential cost savings.  Customizing trials to specific genetic defects or vulnerabilities promises to save them years and take big $$$ off the average billion dollar (yes Dr. Evil, that’s “$1 Billion dollars”) price tag of bringing a new medicine to market. In turn, many of the therapies emerging might not cure but instead transform an illness to a “chronic” vs fatal one.  Imagine the residual income that could create over the lifetime of a patient population.  There are of-course social, political and regulatory hurdles that pharmacogenomics must first jump past.

Finally, if you are thinking about voting in the next weeks, months and years to come, I don’t know what to tell you; nor will I!  www.98braintumors.com is not about that, nor will it ever be as long as I’m writing here (and last time I checked, I’m the only one writing here).  This site is about sharing my experience, strength and hope to try to help somebody. That said, what I think we should each consider and decide, in light of our own conscience and reasoning abilities, is whether “personalized” and “socialized” belong in the same sentence. I don’t know the answer nor, as I said, am I going to pull the pin on an opinion and toss one out here.  If the concepts can play together nicely, great.  If they don’t let’s deal with it.  Either way, let’s try not to act like cave men when discussing ‘Me Medicine.’

caveman 1cave man 3cave man 2

 

The elephants in the room are under my skin

Since being diagnosed with Stage IV Melanoma in 2012 more than a few, well-meaning friends and family have suggested that “it isn’t your fault you got cancer.”

While there is no way to determine with absolute certainty, and I hope I’m open minded enough to consider other possibilities, I believe they are wrong.

Okay, ladies and gentleman, the elephants have entered the room. Let me begin introducing this herd of pachyderms by saying that I believe they are from Asia and not Africa.

One way to tell the difference between Africana & Cyclotis Maximus (African subspecies) and Indicus, Borneenis and Sumatranus (Asian subspecies) is by complexion.  African elephants are typically dark gray or grayish brown while those from Asia are gray, tan, red or even pink.

Anyone that knew me “back in the day” would have seen a variously tan, red or pink complexion (e.g. Asian subspecies), premiering on my skin sometime around my sophomore year of high school.

pink elephant

And some or all of you asked,

“How is that you are able to maintain such a curious, daresay un-natural (not necessarily in a good way) glow when Chicago can go 70+ monotone days with nary a sun’s ray in sight? I mean it’s nearly February what’s up with your red face boy? Opportunities for Christmas vacations in Florida have passed and Spring Break and its attendant sunshine, bottles of baby oil, other bubbly stuff, and potentially bad life choices is still weeks away?”

When the questions arose about my rutabaga complexion I evaded, deflected or ignored, drawing spiritual inspiration from Ollie North and the Iran-Contra congressional hearings,

“Mr. Senator, I have no recollection of the events in question Mr. Senator.”

And not that anyone – least of all my friends – would have whispered behind my back, but I think, if I listen carefully, I can hear faint, thirty year old echoes reverberating out of St. Ignatius College Prep’s hallowed halls…

I-know-I-know- he must be going to the, The, THE TAN…

But you were gracious enough not to call the elephant by name, to my face, and risk shattering the wooly mammoth sized ego.

Please don’t feel bad or take that last statement the wrong way.  That was neither meant to be a slight or accusation. It’s straight fact, at least from where I sit.  I had a nasty, near fatal as it turns out, case of ME and I wouldn’t have listened to you regardless.

Who knows maybe somebody did speak up, I didn’t hear it, and I don’t remember…this would only serve as further evidence of the mastodon sized “impediments to listening” of which I am speaking.

For the record and to the point, the “lobster look” I sported in high school was not due to sunshine; nor was my personalized global warming plan the result of dark-complected ancestry (unless Ireland, England and Scotland are closer to the equator than we think) or some errant and freakish genetic aberration.

I hit the tanning bed man, as you suspected. You know the fat guy with the big nose I have been alluding to here, capable of shining Spring Break up – I mean – through my window all winter long…and I invited him/tanning salons into my life willingly and with near religious zeal!

During spring break of my freshman year, after “suffering” through six months of “serious acne” on my face I discovered the power of The Tan; okay more like The Burn.  A good somewhat painful sizzling was hot enough, I found, to scorch the anchovies right off my face and I thought a pizza-topping-free complexion was note- worthy and admirable. The tanning bed, by extension, became the obvious conclusion next fall.

I mean this was the 80s right.   Billy Crystal’s Fernando Lamas impersonation on Saturday Night Live was supposed to be good comedy, but I took it as gospel, it was truly “better to look good than to feel good.” (BTW you all look marvelous out there, from where I sit tonight).

Here, we parade out the second elephant.

Some equally well-meaning people might say,“Don’t feel bad.  We didn’t really understand the potential dangers of artificial tanning back then.” 

Um, excuse me while I step over the amalgamation of bovine fecal matter (my new favorite phrase).

Whether or not “we knew” as a society, I knew.  I knew in the same way that I knew <fill in your favorite thing a teenager probably shouldn’t be doing> was wrong.  I had many internal dialogs about it in fact.  Something along the lines of and to paraphrase,

You know Leland, this tanning stuff is probably bad for you and you might get cancer.

Right now I’m picturing the responder as an elephant, Babar-like but sinister, sitting on the corner of State and Goethe, black beret tipped sideways on his wide hairless scalp, as he speaks out the side of his gaping mouth over a fistful of smoking cigarettes and wickedly sharpened tusks,

…Yeah but that won’t be until you are really old – like forty or something – and you need to look good now so who cares, we’ll deal with that later, c’mon Leland everybody’s doing it. Moohoohahaha.

Don’t be fooled by this guy.  Don’t think that we didn’t know about skin cancer in the 80s.  This was pre-internet but not pre-stupid.  I don’t know how we knew, but we, I should say, I knew.

“Okay yeah,” the final elephant of this story says, “but lots of people went to tanning beds and fried their epidermal layers in the sun back then.  I mean remember those ridiculous contraptions in the 80s…you know the ones made of silvery space blanket material in order to achieve maximum UV radiation? And what about the gang of leather skinned, alligator ladies who sat by the pool, 12 hours a day/7 days a week at the club? Not all of them wound up with skin cancer.”

These are arguments are silly and akin to wondering why our Nana, God rest her soul, never got lung cancer after seventy years and a trillion Marlboro’s. The reality is people who spend too much time in the sun or doing any other “at risk behaviors” are likely to suffer the consequences, eventually.  My guess is if Nana had smoked 70 more years eventually she would have developed lung cancer.  As a friend of mine used to say, in reference to sobriety and staying out of bars,

“If ya go to a barber shop long enough chances are you are gonna get a haircut.” 

There’s plenty of damning information out there.  Here’s some from the first site that came up while searching on the subject (www.skincancer.org):

  • Sustaining five or more sunburns in youth increases lifetime melanoma risk by 80 percent.
  • The skin of teens is thought to be more vulnerable than adults’. Teens may be especially susceptible to skin cancer because their cells are dividing and changing more rapidly than those of adults. Changes or mutations to the DNA with cells can occur as a result of damaging UAV exposure.
  • Indoor ultraviolet (UV) tanners are 74 percent more likely to develop melanoma than those who have never tanned indoors.
  • Finally, and Nana might be smiling here, studies have shown there are more skin cancer cases due to indoor tanning than lung cancer cases due to smoking (420k cases of skin cancer /year in US; 6K of which are melanoma).

In ‘The Elephant’s Child,’ Kipling retells the folktale about how elephants got their trunks.  A young elephant, bursting with curiosity, asks,

“Excuse me, please can you tell me what the crocodile eats for dinner?”

And to make a short story shorter, the nearby croc tells her,

“Sure, I’ll tell you, come closer.”

An epic tug-a-war ensues, with the lizard pulling on the elephant’s nose, stretching his snoz into a trunk and the rest is, as you can tell, history.

Perhaps this elephant analogy has stretched on long enough as well.  Either way, it’s out there now.

I hit the tanning bed as a teenager. I knew the risks.  I did it anyway.  I caused or at least put myself at risk for cancer and I get to face the full consequences, 98braintumors.com later.

If this serves as cautionary tale for someone, great.  Purpose served.

That being said, and I’ve kind of hinted around this above, I don’t think the “tanning bed” was the real problem.  I will talk about that in the future posts, more than anything because I hope my two boys will read about and understand what I’m saying later.  But for now it’s time to hit the bed- shades down of course.

Oh and in case I’ve given the impression that I’m sitting here wallowing in self-pity about any of the above, I am pasting this disturbing but somehow apropos (tangentially at least) and strangely hilarious picture of Santa catching some rays on the beach. Merry X-mas!

bad santa

Kind of makes you wish the mind had an backspace button that worked, doesn’t it?

Top 8 Reasons Why Guys Who Pick their Noses Really are Smarter

So I was talking – okay whining – at the end of my post yesterday about my desire to write some Top Ten Lists so I could be cool and rightly join the other 2M bloggers on the internet.  Included was the suggestion that I had to wait until ‘everything works out’ or melanoma or ulcers or toe fungus or whatever was completely eradicated to accomplish such airy goals.

It occurred to me this morning  that was pretty lame, fueled by an insipid dose of self-pity, and well, we will just have no more of that today.  I realized too that, in the same breath, I had unknowingly provided a ‘tantalizing’ view at the end of yesterday’s post into the kinds of erudite indexes I might able to bestow upon the world.

Without further ado, the blogroll that all 28 of you who subscribed to www.98braintumors.com (potentially less after this)  have been waiting on the edge of your keyboards for…

Top 8 Reasons Why Guys Who Pick their Noses Really are Smarter

  1. Because we are already married or have girlfriends
  2. Because it relieves the pressure on our huge brains
  3. Because we don’t just talk the rhinotillexomania talk, we walk the walk
  4. Because stop lights are way too long man
  5. Because we would rather pick our own than somebody else’s
  6. Because, let’s face it, you just look more intelligent when picking a winner
  7. Because their could be gold in dem there hills
  8. Because it tastes better than licking off sleeves, under sofas, bottom of elementary school desks or back of church pews

Runner Ups:

Okay that last one is more about snot consumption rather than extraction but I couldn’t resist.

Speaking of which, I openly admit to at least giving the thought of drinking my own urine some possibly intense consideration.  Ah, cancer, what wicked webs you weave!

You will be happy to know, I hope, that I decided against it.  Did not want to risk giving that viscid secretion in my nose, consisting of mucin, epithelial cells, leukocytes, and various inorganic salts, a bad taste.  0-;

Before things get any more third grade-ish (or worse), I’ll stop now and go to bed.  And all the (28ish and falling) people said, “Yeah good idea moron.”

But first I need to take care of something…

picking nose

 

Incline on Friday, Barfing on Saturday, Clueless on Sunday

If you research how to write blogs, you will find that almost invariably one author or another recommends the use of “Top 10 Lists.” This particular medium on the internet is prolific. Inventories of things can be useful, grab your attention, and are easier to read/write. They exists for everything from “Things to do with a Glass of Water” to “Places to use when you can’t find a restroom…” Two things that are not by the way, necessarily, mutually exclusive.

Anyways, I’m itching to pen these kinds of posts and, frankly, feeling a little resentful at the moment that I don’t seem capable.

IMG_1062The first one I’d write would be something along the lines of “Top 10 Things You Should do to Defeat Ulcers” or “Seven Simple Steps for Curing Melanoma…So Simple in fact Even Your Cat Can Do It!” These speak to me. I might even pay money for the e-books; or if feeling particularly cheap and/or lazy have our cat Leo buy them and fill me later.

Like I said though, it’s not happening.  Life doesn’t seem to be fitting cleanly into the paradigm.  Case in point has been the last few days. Friday I hit the Manitou Incline with Alan (aka ‘Grandma’ aka long time running buddy and chief weekend excursion and concert conspirator).  We haven’t done something like this in a while and it was great.

For the uninitiated, the Incline is an old railway above Manitou Springs that was washed out @ 35 years ago and has since become a popular hiking destination.  It’s got something like a 70% grade in places and you climb 2000 feet in less than a mileLooking down the Manitou Springs Incline from Barr Trail Bailout.jpg…Bad-ass…if you are slightly touched in the head or looking for a unique challenge, or, maybe in my case, both.  It’s one of the few exercises I’ve done where I consistently see stars (ah like not the sky) and, at about the half way mark, I’m usually reminded of the time I told someone I was going for a run and he responded, dumbfounded, “From what Dude?”

Either way, I’m grateful to be able to do stuff, even slightly touched stuff, and despite being @ 20 minutes slower than the last time I did it 10 years ago (we reached the top on Friday in 45 minutes), it was still awesome to be out there suffering on the side of the mountain.

Yet, on the way down something was bothering me.  I’ve had ulcers along with inflammation in the stomach for the last several years. Ulcers are basically open soars in the stomach or in my case duodenum (first part of small intestine leading to jejunum, um before the ileum) and, to use more medical terms, they can really suck. I happen to have the sucky ones. They were starting to turn on full sucky power during the meandering, three or four mile run back to the car.

Thought I had handle on these, I keep/kept thinking.

If you query on the subject you will find that @ 90% of ulcers of the duodenal variety are caused by H. Pylori bacteria.  However, a biopsy of my ulcers did not demonstrate any hp.  The doctors surmised it was treatment /chemotherapy induced.  Wish it was the bacteria.  There is a clearer path to victory in that case (heavy duty antibiotics for a few weeks and antacids).

After a few ER visits, endoscopes and barrage of tests ad nauseum, supplements, Dr visits, prescriptions yah dee ya dee ya, we really thought we had this licked.  In my case, we believed, the issue was a combination of a newly developed lactose intolerance and, strangely, a lack of stomach acid.  Taking digestive enzymes for lactose along with hydrochloric acid did the trick.

Unfortunately a couple of weeks ago the pain returned.   I realized I’d slacked on the remedy described above and got back on the wagon so to speak. However, the thing is, it does not seem to be working. And the really lousy thing is, the burning almost always leads to full blown brush fire…thus the visits to the ER.  I had one of those a week ago and within the last twenty four hours.

Yesterday it started at Connor’s hockey tryouts with the imperious urge to projectile vomit in the bathroom, timed between his shifts on the ice of-course.

I guess that’s the definition of slightly obsessed, when you are slugging it out at the ice rink to watch your son play rather than home gyrating in pain.  Either way, it was worth it to have him look up at me when he was heading off the ice and nod when I gave him the thumbs up for this performance. I’m not biased or anything but what a great kid! The effort alone was worth price of admission.

Anyways, barfing turned to copious barfing at home and severe abdominal pain.  The next six to eight hours were, as mentioned, kind of sucky.  Thanks to some prescription nausea meds (again, thanks Alan) things finally calmed down and I did not have to go the hospital.  We were to down the wire though…I was giving it a another hour before limping to the ER.

So, here I am, Sunday evening, typing this blog, feeling slightly shell shocked, wondering what to say while scrapping the rusty, dried up bottom of the barrel of faith…wishing I could summarize “it all” cleanly into a neat, attention grabbing and snappy list.

The only thing that comes to mind is that I’ve been through other ups and downs before; and, as much as the temptation is to think otherwise, there’s always an up.

What Grandma said on Friday during our slow ramble up the incline seems perhaps most appropriate,

“Everything works out in the end…so if it hasn’t worked out yet, it isn’t the end.”  

When it does you’ll find it here, next to “Top 8 Reasons Why Guys Who Pick their Noses Really are Smarter.”