Thursday, April 14, 2016

Melanoma does not discriminate! Here's proof:



You need only hang around a melanoma forum or Facebook group ever so briefly to see that the gang’s all here.  There are the cool, slightly uncomfortable guys.  They give out great, detailed, accurate information, but when thanked, shuffle their feet awkwardly and reference others....or do that weird armpit fart thing and zoom off!  There are the earth mothers.  You know those girls!  They give out the best hugs and warmest heartfelt wishes that you can literally FEEL...miles away...over the internet.  Their family would tell you, I’m sure, that they’ve been taking care of others from birth.  There are the nerdy nervous Nelly's who have lots to offer, but always remind us, “People, there are rules!!!”  Then there’s that set, who are ALWAYS late to class and NEVER have their homework but dash in yelling, “Somebody, help me!  What’s the answer to #4?”  Never noticing that the answer to #4 is on the board...literally....in a post....just two down from theirs!  But, we all help them anyway.  The slightly off kilter types who fly their freak flags with varying degrees of success and attention are here, too. They like to tell folks if they stand just so, with their toes in damp sand, and raise their beer bottle to a 45 degree angle, so that the sun glints through...you can cure your cancer...and they are NED, so there!!!  They just never bother to note that they were one lucky mother who got to take state of the art drugs (Oh, yes.  Real live medical pharmaceuticals!!) and had a great response.  There are the analytical types...I’m pretty confident they are all currently accountants and engineers.  They want a full scale map.  A game plan....that is sequential and perfected with odds and data nicely lined up...clear and concise.  Oh, if only melanoma worked that way!!!  And finally, my favorite:  the mean girls.  Oh, yeah.  They still travel in packs.  They attack with their pointed pink nails....kind of like hyenas....or gang bangers.  They listen to no one....except each other.  Remember them?  Assumptions and presumptions are just fine when they like the story....do NOT confuse them with the facts.  Don’t worry...you can’t really...confuse them with the facts...they won’t hear you.  And...as in high school...as long as they aren’t actively hurting someone...I stay as far away from them as humanly possible.  But, my years of work in melanoma world and the internet often brings them unhappily close to me!!!  As far as I’m concerned, they can believe whatever they want to believe and do whatever they want to do.  But, when they start acting as though fiction is truth, proof of effect is due to their beliefs...yeah, that’s a problem.  There are too many desperate, frightened, melanoma newbies out there who can fall for their dramatic, screechy barrage of misinformation and attitude presented as fact.

One of their favorite baubles is ‘alternative medicine’ and attacking those who have anything to say about it that doesn’t fit perfectly within their preconceived notions.  THEY can presume anything they like....and it is playing with fire to stand in their way!  Recently, one said, “Celeste... I realize that the views expressed in this series scare you.  But not all of us desire to be limited to only the conventional model of medicine.”  Damn!  She KNOWS what I am afraid of!!!  Cause she KNOWS me, right?  Hmmm.... I don’t presume to know how anybody truly feels....even those I live with and adore.  But....no matter, she KNOWS me.  Well....let’s just look at ME and ALTERNATIVE medicine....

Last night’s dinner was fish, beans and greens.  The night before:  a veggie burger.  This morning’s repast is a kefir smoothie with berries and honey and a cup of coffee...actually on cup number two just now.  The morning before - spelt with strawberries and blueberries. What did you eat?  How many miles do you put in each week?  I would love to run a race with some of these vicious vixens! I take a vitamin D supplement daily.  My husband takes cherry concentrate to deal with his occasional gout.  Now, here’s an interesting point.  We didn’t just pull that shit out of our ass.  We actually studied it.  Now, I realize the pack has us labeled as brain washed medical establishment automatons....but there you go.  The pack admitted they can offer up NO data to support their crazy claims.  Though they go on to tell us that they have the ability to shred all data with their sharp little claws.  Well, they better be wearing their big girl panties when looking at this blog....cause I can too!!!  I took not only all the master’s required statistics courses but (like a big dummy!!!) all the PhD required ones as well (while dealing with melanoma!!!) at UAB!!!  If you look at this blog for one millisecond, you see that I will rip the latest 'medical breakthrough' a new one if the data doesn’t hold up and I publish it!!!!  I will explore ANY finding regarding anything melanoma related.  I have posted real live DATA from studies that looked at eggplant and snake venom to coffee and curcumin and everything in between.  Can’t find data, my eye!!!  Not only that, I sometimes feel I’ve pushed things like Rose Bengal (A pretty nifty intralesional treatment for melanoma that comes from a dye!!!) almost too far!!! 

And....since I’ve come this far in my 12 step program embracing alternative medicine....check this out:  Yesterday, I took care of three different kids ranging from 9 months to 13 years with constipation.  Know how many handy dandy medical (Oh, the horror of the word!!!) prescriptions I wrote?  ZERO!!!  Not one.  It would have been a hell of a lot easier on me if I had.  “Oh, she’s constipated?  Sorry.  Take this, once a day and she’ll be fine!”  Had I done that, I would have been out the door in a flash.  My practice would have made the same amount of money (‘cause you know us medical types...that’s all we care about!!!) and that would be that.  But, that’s not how I roll.  Instead, I spent a great deal of time reviewing each child’s current diet, their ability based on age, etc., and helped the parents come up with a diet plan that will be more healthful than the one they were on and take care of their constipation at the same time.  WOW! Crazy, right?

That’s just three patients out of that particular day.  The nurses KNOW that folks will NOT be getting antibiotics out of me for a cold.  My favorite anti-snot remedy is saline nose spray....not the latest cold medicine de jure.  They look on with interest when drug reps try to detail me.  The nurses KNOW that I already KNOW all the medical prescriptive options, dosing, side effects, efficacy, etc.  Nope.  You won’t be selling this girl snake oil whether it is packaged up in a tirade by mean girls or BMS.

On the flip side, limp noodle of a medical patsy that I am, I participated (along with many other amazing ratties!!) in a Phase 1 Nivolumab/Opdivo trial...back when it was known as MDX1106...back when we didn’t know if it would help us or kill us.  I was incredibly lucky, both for the fact that I could afford participation and in that I remain NED today.  Others died.  So, mean girls, thanks to ratties, anti-PD1, BRAFi, and ipi are FDA approved and available for you and yours should you wish to partake.  You’re welcome.

I could go on...but I’m getting tired...  So, if the gang’s all here....who am I?  I am that fairly smart, crazy girl.  You know the one you couldn’t quite pin down?  Wore her DIY Pappagallo (Girl, you know I didn't have the money to buy the real shit!!) via pink grosgrain ribbon belt and khakis one day, French Parisian chic the next, only to follow it up with black wash skinnies.  The one who may be reading an historical tome one minute, interspersed with the trashiest novellas, and Shakespeare by the end of the day, but whose soul is really stolen by novels that won the Booker Prize and cause everyone else to cock their heads like confused pups or fail to finish reading at all. (Which makes her sad....cause she has no one to talk to about them!!!!) Whose playlist happily includes Fall Out Boy, Heart, Sia, Beethoven, Barbra Streisand, Tom Petty, Bey, and old stuff by crazy ass Kanye.  Yep....pretty much a psycho...with a liberal flare and a live and let live attitude...unless your actions could harm sick people or children.  Then, it’s balls to the wall, baby!!!!

Oh, one last thing!  I just snapped my fingers and there are NO ELEPHANTS in Chattanooga!  It is an indisputable, provable fact!!!  I really just snapped my fingers and elephants in Chattanooga do not exist!!!  I caused that, right? - c

PS....Pink and J Lo are in the rotation, too!  Check it...

"That's just me.  Nothin phony, don't hate on me. What you get is what you see..."  J Lo - Jenny from the Block

"Disease is growing, it's epidemic
I'm scared that there ain't a cure
The world believes it and I'm going crazy
I cannot take any more
I'm so glad that I'll never fit in
That will never be me
Outcasts and girls with ambition
That's what I wanna see...." 
PINK - Stupid Girls

4 comments:

  1. Wish I lived near you. Not only would I trust you with the health of my 5 children, I'd love to share a tea with you. Leave it at that.

    Allyson

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  2. You are a nut, but on point! :)

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  3. Hee hee!! Thanks to you both....for putting up with and understanding me! I think tea for the three of us would be AMAZING!!!! I may have to work on that!!!!

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  4. Dear Psycho,

    You rock!!!

    Love you. j

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