Educated guesses and desperate decisions.....

I've always loved science and the whole idea of the scientific process.

When I was a little girl, somewhere around 10-12 years old, I guess, we had a flock of chickens.  Big white fluffy chickens, that I would swear my daddy told me were Rhode Island Reds, but perhaps that was another batch and time has muddled the memory, since those are picture book style, red chickens with smooth, glossy feathers.  The ones I did my study on looked more like Leghorns. They had chunky white bodies and roosters as mean as snakes, though they produced a good number of brown eggs. Yes, that's right....my study.  I would sit for hours observing and recording data on the behavior of our chickens, just like a miniature Jane Goodall!  I still have the notebook somewhere!  There was Bandie.  She was cuter and more feminine than some of the others, a little shorter, chubbier and a bit more delicate, who just loved sitting on her eggs.  We used her to hatch several sets of chicks since she was dedicated to her job.  We marked her by putting a band on her leg, hence the name - but I knew her anyway.  There was Harry Reasoner.  She was a big, ugly (sorry, Harry) chicken that looked EXACTLY like that particular newsman, bushy eyebrows and all!  More importantly, she had a special feature that none of the other hens possessed....SPURS!  I tried and tried to determine if she ever laid an egg....I think not, but could never prove it.  There was Blackie, poor thing.  A scroungy, little, hen-pecked black chicken that Daddy had been given from somebody he worked with.  Let me tell you, racism and prejudice were alive and well in the chicken run and all observed infractions against sad, tortured Blackie were duly documented.

In school, at all levels, I loved the idea that you could study something enough to figure it out.  You need only gain the prerequisite knowledge for the subject, work really hard, and apply the scientific principles.  Then, I discovered something hard to swallow...EDUCATED GUESSES! Oh, I get it. I understand the necessity.  I use them daily in my practice as I delve what I can from the history, apply  what I know of medicine, and narrow my differential diagnosis.  I know!!  But, it's still a galling pass...  Especially when it comes to research and all the things we don't know....  Especially when you're a lab rat.

My heart hurts for all the incredibly smart people from all sorts of backgrounds...who are working so hard to figure out what path to take, what treatment to seek, how to make it available (often out of thin air) for themselves or their loved ones dealing with melanoma.  There is often little rhyme nor reason to what folks end up with. With Brent in my corner I have had no limitations regarding comprehension of the most technical papers nor in access to them.  Medical and research journals are something he understands and has easy access to.  If they are not easily found, he purchases them on-line with a click of a button, something that I painfully realize is not an option for so many.  He has absolutely no hesitation in picking up the phone and calling up any doctor of renown in melanoma world, anywhere on the planet.  Because of that, pieces of my tumors have been examined in Germany.  He's spoken with folks at Vandy (Nashville), Duke (North Carolina), Emory (Atlanta), UAB (Birmingham), and many others.  He's read EVERYTHING related to melanoma that has come out of John Hopkins, MD Anderson, Sloan Kettering, Moffitt, Yale...not to mention papers out of Brazil, Germany, and Australia. And he can run with the big dogs!  There is no conversation regarding the vicissitudes of melanoma in which he cannot participate and contribute.  In fact, sometimes he and Weber appear to be a bit like squirrels as I watch them chatter away!!  He has read and followed hundreds of trial options and findings.  It is truly to his sole credit that I am on the Anti-PD1/Peptide trial at Moffitt.  BUT...here's the crazy, sad, hair raising part...with all that...I am on the ONLY trial that was open to me at the time.  Now, that doesn't mean if the trial had been...oh, I don't know: drink 13 glasses of juice prepared hourly in my own home along with three vegetarian meals with a handful of vitamins and other substances including thyroid hormone and stick coffee enemas up my A@#..... WAIT A MINUTE!!!!  That's the Gerson Therapy crap that people are still falling for in their utter desperation. But I digress.... Yes, we had talked about some options...that had they been available...I still would not have participated in.  So many 'treatments' out there do not have data to back them up.  Or, yes, they've been used in the past....but to no avail....and it just seems bizarre and futile to continue their use at this time.  But.....with all of that.....what did all this educated guessing get us?  Well, perhaps a great deal.  It seems that I, along with the rest of my lab rats are doing well.  Most of us are still here, and in a group of lab rats with Stage IV melanoma, that's saying a lot....a year and more down the road! But....what does that mean for all the other educated guessers out there?  Working so hard to procure a spot on a trial of anti-PD1?  They have either failed ipi, or can't afford it, or are in too bad a place to wait on it's hoped for, but slow (if at all) amelioration of their tumors.  Is my anti-PD1 drug going to prove to be truly effective?  Are any of the other anti-PD1 facsimiles going to do as well?  Better?  Worse?  We don't know.  If there are those who do, they aren't telling.  All of us with studied, carefully planned and manicured educated guesses, still end up with desperate decisions.  c