WOW

Much to the dismay of close friends and Brent...I started following the happenings on the Melanoma Research Foundation board a few months ago.  They were dismayed because I would get upset when I read skewed or slightly mis-informed data posted there and because of  my tears when reading so many sad stories of families and patients dealing with the ravages of melanoma. Stories that make my small adversities seem like a walk in the park. Brent was rather undone, telling me...."I've followed those boards for years and I was thankful you didn't because I didn't want them to hurt you!"  But, I kept reading. People on the boards would argue among themselves over who spoke badly to whom....over who understood this or that better...or become completely unglued if anyone said anything critical of a particular treatment.  Part of me understood this.  People this close to death and functioning at this level of desperation are very sensitive.  On the other hand, part of me wanted to say..."Folks!  Really????  This is how you choose to spend your time?  Of which we haven't much????  ALL the treatments suck!  Seriously?!" Only in Sept did I actually join, so as to answer a couple of questions from folks asking about anti-PD1. As a lab rat in a closed environment, it would have been nice to know a bit more about what I was getting into when I started my trial.  But, pharma and hospital regulations and general pussy footing, makes finding out anything about what is really going on in studies very difficult. 

(By the way....did you know that there is a site that you can check to see what is happening with the research and the marketing of drugs?  It is technically an investment site. BOLT International.com.  There you can get a few tidbits of intel for free, but for several thousand dollars you can (supposedly) purchase more details about how the research is going...so you can invest your dollars to their greatest effect. WOW!  But...I digress...)

So...I answered a few questions...and maybe I was of some help. I think I made at least one friend.  But....sure enough...today....when trying to help answer one person...another slammed me in the most bitter and sarcastic manner..."I...love it when the people who progressed to stage IV come on and tell us why they didn't do interferon..."  Nice, huh?  People can go on a board like that...while still in stage III and say something like that????? Funny how you never know which statement will cut to the bone.  But....I think I'm done.  Who needs that?

Shellebrownies, nicmack56, jillneric, NicOz....your stories and your love touched my heart.  Jerry from Fauq and Charlie S...you two are characters that made me laugh...and think.  Boot2boot...I wish you peace and much luck.  Jim Breitfeller...you work very hard.  Frank from Australia/formercaregiver....you give calm, competent, accurate advice in a very clear way...most kind of you to keep doing so.

So....WOW...to the good and the bad.  The world is filled with some amazing folks. - c