LIAR LIAR PANTS ON FIRE

I'm a bit irritated and I don't know if I want to head to Tampa to converse with a few researchers or if I should head to the offices of the Wiley Online Library to bitch slap the person who wrote the headline for the story.

Chemobrain.  It's where this all began.  It's how I came to this place in my life.  Because I KNOW that chemobrain is real and it can be severely limiting and it can have a long term detrimental impact on those who live with this, I'm pissed off. I've been validated by many of your comments.  I've been validated by many more of the personal email messages sent to me because some were fearful of sharing their issues in a public space.  EVEN anonymously.

For years, chemobrain been little more than a punchline in a joke.  We have clawed our way out of obscurity and into REAL science.  Researchers are studying.  They see physiological damage.  Drugs previously thought to stay out of our brains are now believed to be crossing the blood brain barrier.  The first long term results of the cognitive issues experienced by those whose cocktail of choice was CMF were recently published.  They observed problems TWENTY years post treatment. Others observed shrinking gray matter.  And that matter, matters.

They saw deterioration of the the myelin sheath due to the destruction of the cells needed to regenerate that sheath. That "sheath" is necessary to keep things moving smoothly in our brains.  I wrote a long post about this wherein I likened the myelin damage to a ski mountain.  It's mostly silly but if you scroll down to the part in italics, you will get a sense of what is happening. It's a physiological explanation as to why our brains sometimes feel like they have stalled or are in need of a reboot.....

Did you ever wonder about the color scheme for this blog?  Why red?  When I see a headline like this, I see RED:

"Cognitive Deficits Are Usually Mild In Patients With Breast Cancer After Chemotherapy"

in case it's not clickable, cut and paste:  http://onlinelibrary.wiley.com/doi/10.3322/caac.21164/abstract

I didn't get that memo.  Did you?  Yeah.  Didn't think so.  Really??  REALLY????  WTF?  We are just getting to the point of some sort of quasi-acceptance in the medical community and we have begun scratching the surface with the crowd who infamously says: "I didn't have cancer, what's my excuse" and THIS appears in a medical journal.  I'm calling bullshit.

This is a prime example of why it is so essential to dig beyond the headlines and the soundbites.  Most of us rarely get past that headline.....at which point, the parroting begins.  The better headline was in Oncology Times:

"Chemobrain:  Persistent Deficits Documented Post-Chemotherapy"

This should serve as a lesson to each and every one of us.  This is the exact same study and in many places, the exact same article.  In each case it IS essential to understand that this was an analysis using data from existing studies.  But still, doesn't the first title sound a bit dismissive? Yes.It.Does.

The second title is not only more accurate, but it doesn't allow the nay-sayers to quote the title and start minimizing our struggles while their breath is still hanging in the air.  That second title says, "You got issues, maybe you want to read further" and I did.  Some issues are not accounted for and there is an editorial which was written to "clarify" some of the observations.  The editorial is a nice way of saying, "There's far more to this than meets the eye."  

Here are a few of my replies.  Written by others.  Researched by the best and the brightest.  There are some names you should know.  Those would be the researchers who have been at this the longest, who have dedicated their careers to investigating the causation and thus, hoping to find ways to repair the damage.

Post Chemotherapy Cognition Issues......  I'm going medical with the official sounding name.  Just for today I'm afflicted with PCCI.  Bearing in mind I DO suffer from "PCCI" and it is FAR from "mild" I'm throwing out the information that jumps into my head ....  Anything that mentions ANY of the following people is fair game for "quotable with minimal fact checking."  And, anyone Idelle Davidson chooses to add to this list because she is my go-to expert falls in that same category with the fact checking.  In no particular order, not ladies first, not alphabetical, just the way they fell from my brain:

Christina Meyers
Tim Ahles
Mark Noble
Patricia Ganz
Dan Silverman

That's a terribly short list and I know it needs to be expanded upon but if I distract myself hunting down names, I'll never finish this post.  Ditto, if I try to find the best links with the latest information.  Feel free to add.

Start at Idelle's:  http://yourbrainafterchemo.blogspot.com/p/how-to-use-this-blog.html

From the Cancer Connect website:  http://news.cancerconnect.com/chemo-brain/

From The Mesothelioma Center:     http://www.asbestos.com/news/2012/10/09/mesothelioma-chemo-brain/

You can even try some of the info links on this blog:  http://chemo-brain.blogspot.com/p/information-links.html
(One caveat: I've not been very diligent in keeping that page updated....)

If you remember nothing else, remember what is important:  Sound bites and story titles can be twisted to suit the agenda of the person telling the story.  Read the story.  If you don't understand the information, hell, bring it here.... I may understand it less but I promise, I'll try to find out what it means....  Just don't be a title reading page turning parrot and for that matter, don't you EVER let anyone else try to do that to you, either.....

Hell, you can bring THEM here, too. Being bullied into "It's a load of BS land?"  I'll gather a posse and get right on that, too.