Friday, September 28, 2012

I'M PAINTING THE TOWN RED.... WHO'S IN?

I didn't know what I was going to say today... Today, my final post for the month when we are supposed to be throwing our support behind other cancers.  NOT breast cancer.

It is my sincere hope that October 2012 will not be yet one more year where we hear much, see much and after 31 days of Official pIN(k)SANITY, find ourselves standing at these very same crossroads having not really DONE much.

My #BCSM twitter group is cooking up plans to #RedefinePink.  There will be a hashtag for the metastatic community. Those on twitter will begin to see #MBCAware emerge in the tweet streams.  I liked the way one of the mets patients began to reply to some misinformed tweets using #GetReal ....  Hint.  Read yesterday's blog and you might figure out who was sending out the misinformation.

A suggestion to the twitterverse?  Let's all use the same hashtags.  I'm not going to stand on a bully pulpit and suggest what hashtags should be used but if we stay on point by promoting one hashtag for each "thing" that needs to be addressed, we will gain fair more visibility.  Just thinking out loud.  Feel free to use the comments to share.  ONE voice. We need one voice.  One very loud, extremely focused collective voice.  I may not be able to do the focus part so well, but loud?  Hell yeah, I can do loud.

Last year we did lots of talking.  We are in the same place with the pink ribbon nonsense.  Not okay.  Awareness?  Done. No need to turn Facebook pink or discuss bra colors.  Been there, done that, got the T-shirt, nicely filled compliments of a highly skilled surgeon.  thankyouverymuch.  I'll pass on that.  We all know about breast cancer.

The metastatic patients need #FearlessFriends.  They most assuredly deserve more than one damn day in the midst of the craziness.  I've said this in prior posts.  We triage.  Stage IV FIRST.  First, we insist that research to save lives, their lives becomes a huge priority.  I've watched too many die, I watch too many more suffering, I watch still others hoping they remain NED and their drug cocktails continue to keep the disease silent and the rest of us?  We should be watching over our shoulders knowing fully 30% of early stage cancers will turn.  Some of us will be betrayed again by our bodies.  One collective voice.

This year, the static and the noise and the distractions will be amplified.  In addition to the insanity of Pinktober we can pile the political rhetoric on to this heap.  Emotions are running high and they will be at a fever pitch five weeks from now.  Put on the blinders, tune in that station and lower the noise in the background.  Let's remember we are all on the same team. We will choose a president.  We will choose our religious path including the path of no religion.  We should choose to see that the money thrown at pink is spent wisely because we most certainly did NOT CHOOSE to be indoctrinated into this club.

Now, if you will excuse me.  I have to pack some clothing.  I was invited to a yoga retreat for cancer patients.  I will spend two days tuning out so I can return on Sunday evening recharged and ready for whatever gets thrown my way.

Huge thanks to the Foundation for Living Beauty in California for arranging this first ever East Coast weekend which is being co-sponsored by The Retreat Project.  Extra special thanks and huge hugs to my friend Deb who also volunteers with DSLRF for sending me the information about this weekend.

For Deb......I should have thanked you on the phone last night but alas, I couldn't hear you!  It should have been my big mouth that was muted on that call.... not yours!

The calm, centered breathing begins now.  Now to keep the damn iPad disconnected........  And no, I can not travel without my technology.  Or my chocolate, either.


8 comments:

  1. Have a fabulous, relaxing weekend, you deserve it!!

    ReplyDelete
  2. Agree with Christine on the weekend wishes! Also, what hashtag are you going to use? #Fearlessfriends or #MBC---I'd like to be on your page! Let me know :)

    ReplyDelete
  3. The yoga retreat sounds sooooo good! Enjoy yourself. Wish I was closer, I'd be right there with you!

    ReplyDelete
  4. I'd like to get involved with the tweeting too! I'll look for things on Twitter although I still don't know tweet chats very well! :) Get that Dove Dark with you. :)

    ReplyDelete
  5. Enjoying your blog! My 42 year old sister ,( 3 boys) was recently diagnosed with inflammatory breast cancer, triple negative, stage 3 and will undergo her second chemo treatment Monday. She is an esthetician and started a blog earlier this year, before her diagnosis. If you would breeze by her blog and offer her some support, I know it would mean allot to her. She just posted about her cancer on her blog and made it public to friends.
    Thank you so much for considering.....her blog is thefaceofforty.blogspot.com
    Sincerely
    Orba (Darla)

    ReplyDelete
  6. Thanks to all of you for the good thoughts. The retreat was wonderful and I will have plenty to say about it in a post later this week.

    Darla.... I just left a note for your sister on her blog. She can email me if she would like, too. Email is in the "Contact Me" box.

    Love to all....

    AM

    ReplyDelete