Tuesday, November 1, 2011

"ONE" DAY

If there is anyone who doesn't realize I changed my life because chemobrain forced me to do something.... the blog title should be a good hint.  My twitter name, too.

Chemobrain took me away to embark in Anew Direction because I could no longer perform in my inherited profession. If you have not been following along and are choosing to pop in and say hi, well, back at ya and:

"I'm glad you found me and welcome to the party in my head."

Today is 11/1/11.  The day after my birthday, it will be 11/11/11.  This is the stuff that amuses me.  Why?  No clue. Today, however is The Day Of Ones.  By the time this is posted (and yes, it will be scheduled for 1:11AM just because), I'm sure there will be a blurb on every news outlet.  It's cute.

Today, as we begin the month of November and only for this very first day of November.... except for Groundhog Day, I am making a proclamation.  11/1/11 (and 11/11/11) are hereby under authority of one messed up rearranged brain officially:
One Day We Will Be In Anew Direction

(Listen up.  I can claim the days......If someone, somewhere was able to get November to be National Blog Post Month, WTF-are you kidding me..... seriously, you can't make this shit up and why do bloggers need an awareness month...... what nonsense, what stupidity and WHO comes about doing this anyway???)  Before I lose you by getting off topic, or by stating that in ten days, it WILL be a Groundhog Day thing, I want to make my point. Then, you can get lost (hopefully, here in some of my silliness) or somewhere far more entertaining.

In these past three months, although I had every reason to suspect that chemobrain is a BIG deal to MANY people, I think I understated its reach.  I can't back up my theory with scientific facts.  I can just see, as I already noted in a prior entry, how many places this blog is being read.  And, every time I "meet" a new person, I hear the same challenges.  And now, I'm hearing about people ten years past treatment still dealing with Chemotherapy Fallout.  I was "righter" than I thought when I was asked if there was an "audience" for a blog about chemobrain.

THIS is why prevention is the cure.  No one should have to be faced with choices to "mutilate."  No one should have to "burn."  And certainly, no one should have to choose to be "poisoned."  Most importantly, NO ONE should have to die.

HOW will we get where we need to be?  Now, that's a great question.  And, I have an even greater answer.  HOW is how.  HOW is a study that was launched by Army of Women.  HOW=Health Of Women.  HOW is an online study, a survey that will track participants over time.  You can click the link to the AOW page or you can read the "HOW?" page in the banner at the top of this blog.

I hope this blurb will encourage you to read about the study.  I know this study is being "relaunched"in the spring.  "HOW?" you ask.....  "HOW do you know this??"  Oh, the doubters..... it's that crystal ball and the mind reading thing.... old entries but yes, I see the future.  I just know.  I have a toothache....  If you are new to this party, no, I'm not crazy..... that may be worth a read if you want a laugh at my expense.

Back to the point that I didn't want to stray from.... So much for THAT goal.....THIS is the really really REALLY important part.  Note to all:  This is me with a blatant bribe.  You will have to join the Army of Women in order to get the "Call to Action" when this is ready to launch in order to participate.

In the spirit of "fair play" there is a catch.  By joining you WILL get the emails on the current studies that need to be filled.  In the spirit of "why aren't we already at a million women" the studies are ALWAYS VOLUNTARY to join.  There aren't more than a two or three emails a month and the studies ARE NOT DRUG STUDIES.  I can't emphasize that enough.  Actually, either of those points.  Really, any of those points.

You read the email and decide if you are interested.  Your inbox is not going to be inundated NOR is your personal information going to be given to ANYONE.  AOW guards their data base as closely as Coke guards their recipe especially from Pepsi (FYI, I'm a coke person in case anyone cares).  And they are not "clinical trials."  They are research studies.  Those are two completely different things.  They are "quality of life" studies on survivors (does yoga help sleep, does guided imagery help chemobrain) and "information studies" on healthy women (does breast milk contain anything that may provide a clue).

Want in on the HOW study when it launches?  Do it now so you don't forget.  And one last thing.  Those seemingly "personal" questions like age and ethnicity?  A good database is only useful if it represents the ENTIRE population.  Can't only have a bunch of middle aged white women.  (Group chosen as a joke because I'm poking fun at ME.....quintessentially middle aged and obviously in need of a birth certificate check to remind me to act my age). We may SEEM to be everywhere you turn, but we are not a representative sampling of the population.

NOTE TO ANY AUSSIES:  You have a similar group in Australia.  They are just starting out.  I met one of the women involved in this initiative at the Avon Pre Event.  Send the word out down under!

If you don't want to click the links, humor me and read the highlights??  Now I aks ya, HOW can you turn this down.  If I convinced ANYONE to join, please tell them "chemobrain sent me" .......

The highlights:

The HOW Study is the first ever online "cohort" study of an anticipated one million women. A “cohort” is a study that looks at a group of people over time, collecting data that can be analyzed to find the common risk factors or characteristics. The HOW Study will be looking at breast cancer risk factors in order to understand the cause of the disease and ways to prevent it.
and this is the really good part:
what, beyond treatment, leads to long term survival as well as what the real long term side effects of current treatments are. Finally, this will be the study that addresses the questions you've been asking: is there an environmental cause of breast cancer? Are fertility drugs and bio-identical hormones safe? And what about deodorant and underwire bras?
and typical of the philosophy of Army of Women, the control is YOURS:
Each module will be dedicated to a specific topic,  The modules will eliminate the need to ask every single question at once, which can be overwhelming for the user. Instead, the researchers plan to release a new module every two to three months. Each module should take about 15-20 minutes to complete.
Participants can choose to skip a module or to participate in all module

4 comments:

  1. Blissfully Ignorant BarbNovember 1, 2011 at 10:31 AM

    Good morning AnneMarie. Today, 11/1/11 is my 49th birthday. The last birthday in my forties...
    My first stop every day as I log onto my computer is your blog. The strength you have given me, the laughter you have brought me and of course, sometimes tears have all helped me along my way through the chemofog. Just wanted you to know that I sent an email out to all my girlfriends and let them know that if they want to do something for me on my birthday, they should sign up for AOW. I think I can add a few more volunteers!

    You are an important part of my day. Keep doin' what you're doin'!

    Your cyberfan, Barb (aka blissfully ignorant)

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  2. Dear Barb,
    HAPPY HAPPY Birthday!! We are both November babies!!! (can we still be babies? I vote yes!)I hate(d) those "9" birthdays until I realized I'll take the b'days over the alternative. And then, I got to the "it's only a number" .... a point truly driven home when I wound up in that bar with the Jersey Shore guys which still has me shaking my head in a "what the hell are you thinking" kind of way. And then, I know what I'm thinking. Life is about FUN and that was just a fun and funny anecdote!

    To get totally serious, I don't even know HOW to tell you what your words mean to me. To know you are reading along and laughing (and sometimes crying) with me as I stumble & tumble through this lifts me in ways I can't begin to describe. This blog has taken me in directions I could never have dreamed possible. It's changed my life and your words amaze me.

    xoxo
    AnneMarie

    and thanks for AOW shout out.... that is how change will happen. I need to believe everything I got involved with is tied together.

    And again, Hope your birthday is wonderful and this year brings you only joy and happiness!

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  3. AM,how do you manage to blog every day? And blog about GREAT TOPICS every day? You amaze me!!!!!

    xoxo

    Renn

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  4. Renn....

    I could turn this blog into a sordid tale worthy of Jackie Collins, Harlequin (complete with Adonis on the cover) Romance with a bit (or maybe a bit TOO much) of John Grisham thrown in for good measure and I can "write that tune in a NY Minute!"

    Thanks for making me smile ..... and for the little extra smile when I see your comment posted on Nov 2 @ 2:22 ..... Guess I have to figure out something to do with "threes" next......

    xoxoxo

    ReplyDelete

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