Friday, May 11, 2012


This is somewhat loosely tied to yesterday's post.  One week ago, I left for Washington DC to attend the NBCC Annual Advocate Summit.  I am still poring through the material and information I received during my four days in DC.  Much to share from the brilliant minds who spoke at the workshops in which I participated, those who sat on the plenary panels, the congressional representatives who stopped in to speak to the group and those we visited on lobby day, and finally, the presentation to which I was invited by the Cancer Support Community.

There is much MORE to share about the relationships that were rooted in a virtual world and suddenly spilled into real hugs and school-girl squeals of delight.  New friendships were forged from across the country, across the globe and from around the block.  I had to go to DC to meet some of the most wonderful women who've been working tirelessly beside NBCC since it's inception and one person with whom I'd been trying to connect for several months.  Those were the around-the-blockers.

I literally, bumped into a woman from NYC while I was at the Army of Women table in the reception hall as she was introducing herself to the girl at the table.  I looked up after hearing her name.  I didn't know she would be there.  An unexpected surprise.  I had face to face meetings with the other Army of Women volunteers and staff for the first time. Bumped into some of the blog/twitter crowd.  The last person I met was a young woman from South Africa.  I was winding down in the hotel lobby before heading to the airport.  She has a story to tell and it will be on the blog in the upcoming days.  Let's just say I've been assigned the job of seeing if she can get a copy of Pink Ribbons Inc.  Suffice to say, there was no winding down.  I was getting amp'd up.  For now, I'll leave that right there.  I better.  Or there will be a rant.

I would be sharing a room with someone whom I never met, had only spoken to once and with whom I did lots of tweeting and messaging.  I arrived first and when Lori knocked on the door, it was a moment of pure pandemonium.  Within about five minutes, it was clear we will be lifelong friends.  We shared stories and traded wisecracks and there are at least 100 unfinished conversations.  Lori is brilliant.  Lori is a mets patient.  Lori is my friend and we will be friends forever.  And I intend to make sure I do whatever I must to ensure our "forever" means a good long time.

The following morning, we met CJ from METAvivor.  I fell in love.  CJ may be the sweetest and kindest person I have every met.  Bar none.  Another instant connect.  Warm and pure.  And then Debbi, my California counterpart in the Army of Women.  I guess we anchor the coasts.  Debbi and I have some rather uncanny similarities in our stories including our enrollment in the initial group of just over 1000 wo(men) in The Breast Cancer M.A.P. Project.  Stay tuned.  I connected the dots backwards on that one but it's quite blog worthy and it's an initiative of the Cancer Support Community.

Things are starting to get a bit odd.... I'm not going to get all Poltergeist or go Zen.  I'm just sayin....  Deb and I BOTH in DC, both of us included in the initial results of the MAP Project which was published in October, an invitation to the luncheon from that very same Cancer Support Community.  Things were about to get a bit odder.  (Yes, a "bit more odd" reads better, but odder is a word and I just felt like being odd.)

That first day, I was primarily with Lori and CJ and I believe I sent a tweet that went along the lines of:  "Sitting between Lori and CJ. It doesn't get much better than this."  I was being what we, in this corner of the blog world, have come to refer to as a #FearlessFriend.  I didn't feel like a fearless anything.  I just felt like I was sitting between two spectacular women and I wanted to know what I could do to assist either of them individually or as a collective group.  I was perfectly positioned.  I just wanted to listen.  I didn't want to ask what I could do.  I just wanted to listen.  Formulate my own thoughts and then open up a conversation with an idea rather than a question.  It's a better starting point.  There will be much much much more on that in the coming weeks.

Wait... didn't I say things were about to get odder.  CJ left for the evening.  Lori and I went back to the room to figure out what to do about dinner.  I flipped open my iPad and opened up my browser and had to blink a couple of times.  I called Lori.  Maybe we were looking at the page before we left the room?  I've been known to lose entire pieces of conversation or chunks of an "episode" ......  Lori simply shook her head.  No, neither of us touched that iPad.  The two of us just stood there staring at the screen and staring at each other.

It was a post written exactly one year ago today, May 11, 2011.  It was written by Rachel.  Right after she attended NBCC. All about her meeting with the other mets patients.  Rachel's meeting in 2011 seemed to go a bit better than Lori's did in 2012 (but Lori wasn't a mets patient in 2011, either...... Lori had her life turned upside down just months ago).  She talked about how she and Susan were the youngest in the room.  She talked about the need for those of us who are well enough to step up because those with mets are generally not in the greatest shape to advocate for themselves.  Rachel is gone. Susan died the same day.

I don't know why Rachel's blog, THIS entry most especially, bounced up to greet me as I flipped over the iPad cover.  I'll stay out of the twilight zone and claim that it's one of those chunks of time that I dropped out of my mind.  Or not.  I'll say it was Rachel, reminding me that her words will live on forever, reminding me we can use those words as a roadmap for how to be #FearlessFriends, reminding me that there are people for whom the pink bell tolls, reminding me to stare right down the barrel of the gun if that is what it takes to push change, to be fearless in apologizing to someone whose very actions were those she used her own words to criticize, to be fearless in the face of pinkpocrisy, to just BE.

Go ahead, click the link  and then, bookmark the blog.  Many of you knew Rachel but if you didn't, visit her blog.  Say hi to Anthony.  Give Newman a shout out.  Wish her family and friends well.  Make sure she is never forgotten.  That Susan is never forgotten.  That we push for the research to FIRST help those who need it the most.  Those whose lives are in the balance.  Too late for Rachel, too late for Susan, but it doesn't have to continue.  We need to make it clear.  Deadline 2020 IS a priority.  Sign the petition to the president.  Most importantly, we simply must find a way to save 300,000 lives between today and the goal.  They count.  They count the most.  They count more than anything else.  They are counting on US.  Are you with us?  Be a #FearlessFriend.  First.


  1. I really wanted to go to NBBC...I'm so glad you did. I'm grateful that I have learned so much from all of you in #BCSM. I am grateful I met Rachel and Susan virtually. I am grateful for all the #FearlessFriends I am meeting and I am grateful for you.

    1. Kathleen,

      Thank you so much for those words. I'm on emotional overload and it's been a roller coaster. Highs very high and the lows.... just heartbreaking. Sometimes, holding someone's hand can be rough. Seems I've had a few rough moments since I got home from NBCC. It's ME time this weekend.... I'll start the new week refreshed and reenergized!

      And I'm grateful for you.... and hcsm!


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