PEOPLE BEFORE PINK

It's always about people.  People first.  Long before this blog was born, indeed long before I could have even DREAMED this is where I'd be at this point in my life, I realized something was not right.  With my brain, I mean.  Some might argue there was plenty wrong with my brain long before chemotherapy but I might respond to "some" with language befitting a truck driver.

My first validation and the beginning of my quest to understand what may have happened to my brain came from a book. Your Brain After Chemo is an invaluable source of information and as a result of this blogging adventure, I have become friends with one of its authors.  Idelle Davidson reached out to me almost a year ago.  She is a real writer.  I was and still am, the court jester in this chemobrain gig.

Life is filled with all sorts of "moments" and seeing the email from Idelle was among those thrilling life moments .  Not only had she validated my brain issues when I purchased her book in 2009 when it was FIRST published, she validated me, as a writer, in her email-in 2011.  Idelle is now my friend.  If you were to look through some of the comments on this blog, you will see the jokes about Abbott and Costello.  She's Bud.  I'm Lou.  There will be a chemobrain version of "Who's on First."

I AM going somewhere with this.  Last week, Idelle sent a message in the world that is twitter.  Someone left a comment on her blog.  I have LONG suspected that the number of people who struggle with cognitive issues and other types of impairment that prevents them from functioning at their pre-cancer levels is FAR greater than anyone will ever be able to accurately calculate.  The following is a comment that was left on Idelle's blog.  It was left there last week.  I'm going to reprint the comment here and if you are so inclined, maybe you can jump over to Idelle's blog if you want to leave some words of encouragement for this woman.  When you read it, you will understand why the person did not leave a name.

Below you will find a link to the post and the comment in case you want to reach out.  And speaking of reaching out, I deviated from my usual pattern.  I normally respond to the comments left here.  Individually.  The past three blog posts, nada.  No interaction.  I've read the comments and I have some acknowledgements that I will make.  Hopefully before I have to get out of Dodge on Wednesday morning.  Read:  I have an out of town meeting and I will be gone from Wednesday until Friday .

Suffice to say, I've been involved in a fairly "you are in over your head" project and I will see just how far over my head I am before the end of this week.  And then, life will go back to normal.  Until the next thing.  (If you must know, "the next thing" is preparing for the NYC Avon Walk and how I am going to take the Hilton by storm on October 19, single-handedly, if necessary--my volunteers aren't stepping up.... just my one, always there, go to person)

Back to PEOPLE First.......  This is the reality of chemobrain.  This is what I try to joke about.  This is why it's NOT funny. This is why we simply MUST change the course of this disease.  No one should feel like this woman.  A sister survivor. She could use some encouragement.

This link should take you right to the comment.  The blog post was written by Idelle two years ago.  The comment is reprinted here.....  Who among us can't relate?  I want to roam the streets of Southern California and find this woman to give her a giant hug.  Except, she is hiding.  In fear of losing her job. Like I said, the stuff extends far beyond what is reported.....

AnonymousOctober 4, 2012 10:25 PM

As I sit here, barely able to continue reading through tears, I am grateful for this blog and for your generous, I heartfelt writing, Idelle. And for all of you who've gone through this journey...thank you for sharing.

Currently struggling with long-term side effects including chemo brain, depression, fatigue, pain, GI upset, hot flashes, balance issues and more chemo brain - trying to address issues one at a time with my Onc team - I was dealt a heavy blow. Excited to begin a research study on Breast Cancer Survivor Cognitive Impairment, I was denied time off by my (physician!) bosses who find the one-morning-per-week x 5 week commitment "unacceptable" & feel they've been more than accommodating with my health issues. I was informed I must be in the office during business hours (even though 80% of my job as Practice Manager is HR, financials, credentialing, contracting, behind-the-scenes work that is easily done after hours or from home without interruption). I am working on a written reasonable accommodation request (for flexible hours, working from home if recovering or having bad day, etc.) as I have sleep interruption, neuropathy, hot flashes, nausea & diarrhea most mornings that prevent me from working early AM hours, plus I have more energy & concentration "spurts" in the afternoons (things move in slow motion & take 3-4 times as long for me to complete IF I am able to, but later in the day, I feel a bit "brighter" even though I could nap at an second). Oh, the JOYS of chemo that no one warned me about!!!!

I dread asking for accommodation as I know m bosses feel I should be "back to normal" by now, but the more I push myself, the more side effects are "triggered". Being told I must physically be present in the office (even if I am locked in my office, dizzy & laing on the floor!) during business hours - a point brought up at my review last year - "attendance has been a problem. You took too much time off for cancer treatment" - even though I worked through chemo, taking a few days off after each treatment (4 weeks off after surgery, 6 weeks off once cumulative effects of radiation knocked me out).

Sadly, I cannot change jobs as I have excellent medical insurance & a staff that protects me & tries to cover for me when I am forgetful or cannot concentrate. I cannot let my bosses know the extent of my brain dysfunction or I'll be fired....just have to say long term side effects (I've already been told "if you're too sick to work, we'll find someone who's not"). I am no longer the sharp, quick-thinking, proactive multi-tasker with one eye on the future & the big picture always in sight. I am now partially numb, irritable, forgetful, sloppy, leave 5 projects partially completed, have no off-the-cuff answers for anything without looking at my notes to see where I left off and I would rather stay in bed where my weaknesses won't be exposed.

Yes, Survivor Sisters, you are not alone. I am here suffering & struggling most of the day, every day. Trying to stay above water & under the radar so I don't get fired for being one big malfunction after 17 years in the field & 10 on the job. I want to scream "NO FAIR!!!!" but I feel selfish. I got to live...but it's someone elses's life as this is not me.

Praying for all of you & wishing you blessings.

SoCal Survivor