I have not been inspired to post anything for a few weeks and it was working on me a bit.
Where was my inspiration?
Didn’t think I was being particular choosy. But there was just a general lack of percolation going on; you know, no flow. Just nada, zero, empty, snake bit. If I were a hockey player from Canada, I’d say I was “squeezing the old twig a little too hard / unable to put the biscuit in the basket/light the lamp and what not.” No beer and doughnuts and all that eh?
But then it occurred to me that being a bored, uninspired or whatever was a kind of luxury item, a “high class problem” worthy of my aspirations and attention. Boredom was also a likely bi-product of someone feeling a bit ungrateful. I mean really. Truth be told I should be grateful for ingratitude, happy to be dull, and inspired by my apparent lack of inspiration.
In a few weeks, if the good Lord’s willing and the creek don’t rise and I don’t flip off the wrong 400 lbs Hell’s Angel in traffic or decide to fulfill my life long ambition to become a cobra charmer in India and/or free climb a Denver sky rise while window cleaning, I will celebrate 4 years since the day of my melanoma diagnosis. I am still topside baby! A few months after that, I will likely stroll into a room full of idiots like me with some chalk flavored cake from a grocery store and announce my 25th anniversary of continuous sobriety, you know without any mood or mind altering substances.
Now, I know, some of you are thinking 25 years without any booze is not something to be bragging about…but believe me when I say that I, along with society, have been, are, and will be better for this fact.
Truth is there’s legions of packs of scores of swarms of regiments of crowds of clouds of armies of populations of multitudes of many other things to be grateful for, beyond just taking my customary ~20,000 daily breaths or hauling my ~7 octillion atoms (7 followed by 27 zeros: 7,000,000,000,000,000,000,000,000,000) out of bed, today.
There is, in no particular order: pizza, music, running, dogs/cats/living together, job, television remotes, news feeds, Walking Dead shows, smart phones, wrinkle free shirts, computer geek talk, Avs, boys, Sarah, car, house, pillows, air fresheners, clothes, 5 senses, brain waves (however slow) etc.
And then there’s this guy – the G, Gibster, the Giblet, the Gibbyatollah, G-String, G-man, G-spot, G-force.
My brother Gib came to visit with his two righteous progeny last week.
I have few memories of being a young-young kid. But one stands out. I distinctly remember G at 2, wobbling around in his diaper. He was quite possibly the cutest thing I’d ever seen in my life…and I then remember a near imperious urge to -I don’t know- squeeze, pinch, beat the crap out of or generally make him cry. Bam Bam! That didn’t change much growing up. I used to rub my hands together in anticipation of coming home after a long weekend, enumerating the many ways I could put the hurt on my bro. Brotherly love worked, at least for him, in often unpleasant and contradictory ways. Ah inspiration, move me brightly.
Anyways, it was good to see you bro and little nephew dudes. I have and will, as long as I have any say in the matter, love you always. Thanks for making the effort and braving the crazy Colorado blizzard to see us and for not kicking my well-deserving-to-be-kicked-ass (except may be while running up Spruce Mountain) while you were here.
Speaking of enjoyable inspiration for me, but likely tortuous for him, there were the Grateful Dead show I dragged Gib to…not this one, but one like it many years ago…
Terrapin Station, Hunter/Garcia, Anaheim, CA July 26, 1987
“Inspiration, move me brightly light the song with sense and color, hold away despair More than this I will not ask faced with mysteries dark and vast statements just seem vain at last some rise, some fall, some climb to get to…”
There’s a movement afoot at the American Academy of Dermatologists to petition the FDA for greater restrictions on sunlamps and tanning beds, especially for minors. I’m not a huge fan of extra legislation and believe ultimately that our problems are of our own making. Supporting a ban on x, or y or z seems to be more a matter of personal opinion and blurry reasoning at times- politicized, polarized and pulverized to the point where distinguishing real from fantasy, true or false, good and bad is nearly impossible.
If I were in charge of EVERYTHING, besides everything being really-really f-d, I would correct the causes and conditions to things we often ban in the first place (e.g. fix the low self-esteem rather than prohibit x, y, or z). But, okay, stepping off the soapbox and back to reality, that’s not the world we live in presently.
It is my opinion and experience, that tanning beds are dangerous. I mean a history of blistery sunburns followed by melanoma diagnosis, four surgeries, 60+ infusions, a trillion tests and doctors visits, 2 clinical trials, radiation, 10 gamma knife surgeries, 98 brain tumors, lung tumors, stomach tumors, liver tumors, excessive sweating, offensive body odors, and a bad sense of humor (okay those three may possibly have been pre-existing conditions)…that’l learn ya. And there is also this army of data suggesting that climbing inside a tanning bed a couple times a week is worse than making an addiction out of piles of smoking, Camel filter-less cigarettes.
So I think we should at least put some roadblocks in the trajectory of that 16 year kid who is too immature to make good decisions about his or her future and safety. If they want to circumvent or step around around barriers we put in place, if they think they can beat the odds or that the data is bunch of BS, that will ultimately be their choice. The initiative promises to make it harder for “smart guys or girls” to make stupid, potentially life threatening decisions…perhaps slowing them down long enough for some help/wisdom/clarity/whatever to seep in and save their lives.
So, if you are interested in this and agree, you can hit the link below and add your support:
When I was cleaning up my routine almost 25 years ago, some friends suggested that I get a “New Pair of Glasses.”
At the time, I was sporting some funky and I mean capital P-FUNK-EE spectacles. Picture them cloudy, desperate for a spray bottle, a soft cloth, and some applied pressure. They sat crookedly on my skinny 150-pounds-when-soaking-wet-frame, below months of uncut man-fro hair, and above my favorite, ratty Grateful Dead t-shirt. The piece de resistance though was the twisty paper clip shoved through one end of the horn rims because a screw had fallen out weeks before. I was too oblivious, scared, cool, or all of the above to walk three blocks down Tejon, by Colorado College, to the eyeglass shop and have them repaired. There may be a couple of metaphors in those previous sentences.
Either way, my friends weren’t referring to the lenses hanging precariously down the end of my nose, but the book, “A New Pair of Glasses” by Chuck Chamberlain. I eventually got or “borrowed it,” or whatever, and proceeded to read over and over and over. Its been a few 24 hours since I’ve actually cracked those pages but not too many days go by where I don’t think about the words and concepts that somehow navigated their way through a pair of smudged lenses to my addled soul.
Published in 1984, it’s essentially a transcript from a series of talks that “Chuck C” gave to a certain anonymous fellowship. He does a phenomenal job describing key concepts that underpin the fellowship and, at least in my opinion, some of the collective wisdom, grace, and understanding found by many (including me, though retention is highly suspect) there.
“First of all, Chuck proposed a vision of Christianity that wasn’t even, to my Catholic mind, Christianity. He said that he believed “the gift of God was made at the foundation of the world.” What he meant by that was that God wasn’t capricious and God wasn’t punishing. God could be counted on the way that gravity or electricity could be counted on….
To talk about love was like talking about humility,” he wrote…If you love somebody or something, you do something for them. You just do it and you don’t make a big deal out of it.”
For me, this concept revolutionized my approach to life. It gave me a way to behave. Love was an action. If you wanted to get along in the world, you had to help people. If you needed to know what God’s will was, that was easy, too: Do something for someone else.
There’s a mighty set piece near the end of A New Pair of Glasses. Chuck recounts for us, in his own words, the story of the Prodigal Son…
‘And so the father saw the kid a long ways off, and he came to meet him. And the kid started trying to tell him what a bum he was, what a failure he’d been in the business of living. But again, the father didn’t hear him. He didn’t argue with him at all. He didn’t say, “Look, I’ve got the record on you right here, and you sure are a bum, you’re no good. I’ve got it right down here. I know every time you turned right when you should have turned left. Get the grubbin’ hoe and get back on the back forty, and grub out some persimmon sprouts and sassafras bushes. And, maybe, if you do a good job, twenty-five years from now I’ll invite you in for lunch. He didn’t say that. He didn’t say anything. He fell on his neck and kissed him. And he called the servants, and he said, “Kill the fatted calf. We’re going to have a party. The boy was dead and now he’s alive. He was lost, and now he’s come back home.’
When I say that this story was absurdly pertinent, what I mean is this, ‘No condemnation, no reprimand, no argument. The love of the father for his child…’
I was wrong about the nature of myself. I had thought I was a victim of my depravity, but it turned out that my depravity was the gift that had forced me to come home. Chuck explained this to me better than anyone: God wasn’t angry. Worse than that: God didn’t even understand anger.
I had thought that I was a desperado, coming in from the fields, begging for a handout. It turned out that I was a prince, and my father saw me from a long way off.”
Who wouldn’t want to feel and pour out some of that to their kids or spouse on a regular basis? Or, man, when asked to fill out the latest TPS report at work? Or at the ice rink with the parents of the other teams? In traffic? Looking in the mirror?
In the context of cancer, the ability to change my mind, to be open minded to whatever happens, and even to believe that there could be a happy ending, regardless of outcomes or perceived goods or bads…that’s not easy.
Chuck had it pretty simple and I’m sure if he were here, he’d tell me its pretty simple for me too. But if I want an attitude like that I have to change my perspective. That’s a conscious decision. Heaven is, as he says in his book, putting on a new pair of glasses.
…………………………Um…or you know you can always try to buy your way through as well. That’s a thing too right?
Got some new frames this week.
The first thing Derek said to me when I walked through the door was, “What’s up nerd!”
Feel the love.
I guess I am guilty as charged, channeling my outer nerd here.
Had MRI and got results yesterday at the University of Colorado. Great news! Tumors in brain are stable to improved.
We spent some time examining grey globs in my pea sized brain. Basically, nothing has changed in the last 3.5 years since they found them. Historically, they expect a fourth of the tumors to not respond to the treatment and require re-treatment and/or other measures (like surgery). With the exception of 1 tumor, all 98 of mine have responded so far. That’s basically a 99% response.
One study posted on NCBI looked at 51 patients over a 10 year period treated with GammaKnife stereotactic radiosurgery (GKSRS). It examined local and distant brain failure rates, overall survival, and likelihood of neurologic death. Median survival time for the entire cohort was only 5.9 months. Local control rates at 1 and 2 years were 57% and 34%, respectively. Distant brain failure rates at 1 and 2 years were 58% and 75%. Fifty-three percent of patients ultimately died of neurologic death. On multivariate analysis, patients with extracranial disease (eg spread to distant organs or other areas) had worse overall survival than patients without evidence of ECD (extracranial disease).
Another study from 2014 examined morbidity of people with stage IV melanoma. Median overall survival was 5.3 months. Death probability of a patient with brain metastases was twice that of a patient with digestive metastasis, about 7 times higher than that of a patient with lung metastasis and 12 times higher than the death risk of a patient with extra-regional lymph nodes or subcutaneous metastasis.
Not sure what to say about ‘dem numbers…I’ve had brain, digestive, lung AND lymph node metastasis…thankfully, this is one of the few areas in my life where not living up to expectations is a resoundingly positive thing.
I also asked the PA if those monochromatic looking dudes in my head were metabolically dead and the answer was…inconclusive. Short of cracking my dome open and biopsying the best guess is that they are either “deet” or the gamma knife treatments scrambled the DNA enough that the cells are no longer dividing. We dunno.
What I do know is that I can, hopefully, lay off the hypochondria for a few months, at least until the next scan. I think I have gotten more relaxed (easy to say now 24 hours later, but I do believe this is true) about the process. I was sawing serious logs during the 30 minutes in the tube yesterday, despite the rather alluring siren calls/whale mating shrill broadcast with deafening surround sound inside the MRI tunnel. But its almost impossible to avoid a certain amount of manic and panicked thinking prior to the day.
Somebody on FB recently referred to this as “SCANXIETY.” I like that. Its the beat I’m pretty much dancing to, starting @ a week prior to the big show. Benign, normal, everyday aches and pains become potential, life threatening indications. Anything from a headache, eye twitch, or head rush from getting up too fast…on and on…whisper to me their deadly symptoms.
What can I do about them? Well…
Talking helps. Lately this just saying to Sarah, “Thinking again. Got this headache and…” She is usually quick to remind I’ve had headaches before 0-;
Pray. Pretty much, a lot. Not sure why that works but it does.
Practice acceptance; attempting to remember that “at the end of day” I don’t have power over any of it anyhow/anyway. I can be miserable or get busy getting busy with whatever is in front of me.
Sometimes I get pissed and sometimes I act out. I try to correct it as soon as possible and move on. As I’ve said before, have not graduated to super hero. If sometime in the future I claim such a thing, just nod and wave, nod and wave.
Work. I have the “luxury” here of perspective. While work is important, kinda, its if nothing else, full of worthwhile distractions. A Green Beret once told me, “Stress? This is not stress man. Stress is when people are shooting at you.” While I think the human brain is capable of making a “TPS” report as relatively stress worthy as taking fire from a gang of AK-47s, cancer, or whatever, I can relate more and more to what he was telling me today. There are no big deals except when I want big deals.
Work out, everyday. Calms the brainwaves and smooths the turbulence between my ears.
Boys. Hockey. Basement. Hanging out. Drive way. Footballs. Trampoline. Catch. Whatever we do – most of the time 0-; – is righteous.
Sleep. Ah! Sleep.
Elsa sleeping on our couch. The puppy dog is finally down. All praise Jesus.
Mindless television…speaking of which iZombie is calling from the next room. Or should I feel guilty about not working on writing, reading something useful, or a thousand other more noble and productive callings…um…no…
PS. C-man’s team won a second tournament last weekend- their league championship. They are now 19-1 in the last 20 games. Next up is the state tourni. Love this dude.
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.
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
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.
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
4 major surgeries
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.
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.
Originally the title of this post was “34.25 Signs You Might Be an A-hole.” I was, quite unselfishly and humbly I might add, going to provide a quick and easy way for people to recognize those a-holes living among us. What a guy! What a noble calling! What a rubric for negotiating modern life! What an…
But then I got to thinking (which is usually not a great idea but in this case it worked out okay)…
What an a-hole.
I mean how is it that I can lay claim to even a modest degree of proficiency in the subject matter; and so smugly produce a list?
Make no mistake the first sign, as in #1 in the list below, is there for a reason.
So, anyways, I changed the title temporarily of this post to “34.25 Signs I might be an A-hole.”
That seemed a better title for awhile…
But, needless to say, I changed the title back.
I’ll give you 34.25 chances to guess the reason why.
34.25 Signs You Might Be an A-hole
Whenever you are thinking you are not really an a-hole, then you probably are one, so sorry
If you are convinced that somebody else is an a-hole, then its possible you could be one too (also sorry about this)
Whenever you are overly sorry, that’s a perhaps a good indication you are a sorry a-hole
If you are speaking ‘passionately’ and it has suddenly gotten very quiet in the room, you might be tangling with a-hole-ish behavior
When you get done speaking and no one is looking at you, chances are good that you are an a-hole
If somebody just whispered, ‘What a total a-hole’ under their breath, that’s probably not a good sign either
Whenever you feel compelled to prove how much you know or how right your opinion is, then hot-dang, get yourself a ‘I might be an a-hole’ t-shirt son
If you are driven to talk about something you have little or no knowledge about, then you might want to convince yourself you are an a-hole first
If somebody just texted their friends while you are speaking, ‘can you believe this a-hole??? lol’, then the prognosis is likely “un-good” as far as you and the title of a-hole are concerned
If you go to the DMV to get your custom license plates and the clerk says ‘How about ‘A.H.O.L.E’ instead? That could indicate you might want to have A.H.O.L.E. stamped on your forehead
If you just got done calling someone else an a-hole, you might want to check your own nether regions
When education, name, birth place, place of residence, team, employment status or position, relative wealth/poverty, race, political opinions, suffering or success, religious or spiritual opinions make you better or “righter” than some other a-hole, you may be displaying classic a-hole symptoms
When you use words like “truly” or “sincerely”, that could be a bad sign of a possible a-hole outbreak
When you feel like you have been waiting ‘long enough’, you might not have to wait much longer to prove you are an a-hole
When you find yourself judging a-holes for being too judgmental, that’s can be a sure sign of a real a-hole move
Whenever you are 110% correct, you are usually 100% a-hole
If those a-holes are 110% wrong, you are probably not 100% non-a-hole
When you passed a lie detector test, even though you were lying, congratulations! You may have passed the a-hole detection test
If you take another lie detector test in which they ask if you were lying on the first lie detector test, and you pass, you may have just been proven ‘guilty’ a-hole
When you insist on being called a doctor even if you have a PHD and that’s not really the cultural norm, this could be considered pseudo-a-hole-ish behavior
When you feel its your mission to change a cultural norm, however insignificant or popular and/or benign, you might want to check your nether regions
When you just have to say something even if its going to shatter someone else’s feelings/stature/pride/position, just because you know ‘its the right thing to do (for them of-course)’, then you are probably about to be wrong and they will probably be right later when they call you an a-hole
If your wife prints out this list, laminates, and sticks a copy in your wallet, then you are probably, literally a card carrying member of the a-hole fan club
When you discover your laminated, a-hole card in your wallet and ask yourself, ‘Now why did she stick that in here?’ then, ladies and gentleman, the a-hole may have just entered the building
When acting like an a-hole, you pull out this card and can’t find a single thing to relate to, rip the card up and swallow, digestion might be your only chance at uncovering your true a-hole self
If your wife gives you a glass belt buckle for Christmas and says, ‘Here now you can see where you are going,’ you might possibly get accused someday of being an a-hole
When you write a heated email and use lots of these and those and them or even this, thiscould suggest you are in an a-hole state of mind
If you are wondering if you should send the aforementioned e-mail, you might want to wrap yellow ‘Caution – A-Hole Line – Do Not Cross’ around your work space
If you send it anyway, um, you may have just crossed the border into A-hole-ico-land
When you use too many “you”s in sentence, YOU might be an a-hole
When you use too many “I”s in a sentence, that can be a measure of a-hole-itis
If you use the term ‘a-hole’ instead of asshole in a list like ‘34.25 Signs You Might Be an A-hole’ because you want people to think you never actually use the term asshole cuz like you are too evolved a person to swear anymore, then your a-hole certification has probably not expired
If you can’t think of anything nice to say but you say it anyway, well…c’mon man what would your Mother say man?
If somebody calls you a ‘Mass-hole’ because A-hole is not a big enough term to describe you, then you might-could-possible-be a real a-hole of the real a-hole variety
.25 If you tack on .25 to a “34.25 Signs You Might Be an A-hole” list to try to be “cute” or get attention or who knows why, they might soon be welcoming you to A.A. (A-holes Anonymous) club
Of-course, there is a difference I think between ‘being’ and ‘acting’ like an a-hole. And of-course, anyone that uses ‘of-course’ in a sentence might be accused of a-hole-holic behavior (I can’t stop; this could of-course be #35) someday. But anyways…is that really true? Are being and acting a true distinction? There was a time in my life when I thought intentions mattered. There was later a time in my life when I realized intentions didn’t matter; it was the actions that counted. But now I think its somewhere in between. At least I had those good intentions, like a seed. They were however un-realized, at least, present. Though perhaps the longer intentions went un-realized the bigger the a-hole becomes. Anyways, I have diverged a little here from something somewhat comical and truthful or maybe tragic (all maybe the same?), to a more serious subject.
This means there has to be time for one more…
#36 When you are that guy that takes something relatively fun and light and makes it kind of morbid or self-reflective, that may be a sign you have stepped into yonder a-hole territory.
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.
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!
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.’