Tuesday, February 7, 2012

KEEP THEM CLOSE

We are a solid group. The breast cancer social media gang. The bloggers who are listed here (and if you are missing from the blogroll, identify yourself, please!) and those of us who chat on twitter.

On twitter, that hashtag, #bcsm is now known as The Bat Signal. If anyone throws a #bcsm on the end of a tweet, there is a guarantee, someone will respond in a flash. Yes, a bat signal. THE Bat Signal.

Yesterday, that signal was flying off fingers like wildfire. It was an AWFUL day for a group that just celebrated its six month anniversary. I am so thrilled to spend an hour each week with these brilliant women exchanging thoughts and ideas. Supporting each other.

Yesterday, every one of us participated in that chat with heavy hearts. Hearing about Rachel's death early in the day brought the community to tears. For hours, there were messages going back and forth among many people. When I saw Toddler Planet jump to the top of my blog roll indicating a new post, I immediately clicked the link to the familiar page, saw Susan's smiling face and the word, Goodbye. I stared at the screen------stunned------shocked--------in utter disbelief....

This is going to be a week of reflection for me. Yesterday, there were THREE posts written. The first one said I had nothing. Little did I know what was to come in the hours ahead. Now, I really have nothing.

I call #BCSM Officially A No Pink Zone and now the twitter home of a group of Fearless Friends known as Rachel's Rebels and Susan's InSurgents. We are all determined to keep their voices strong and make sure those voices are heard by many. We will mourn and we will be sad and then we will become a determined group of women who will not be turned away. We will continue to bang on doors and we will make noise and raise the decibel level as high as we must.

We will NOT be okay with the same old same old. The status quo sucks. It's just. that. simple.

Take time to poke around their blogs. They are truly brilliant, remarkable women. A funeral one week ago and two more deaths yesterday. It's overwhelming. I need to regroup. This shattered my world.

Monday, February 6, 2012

AND THE SAME LOVE FOR SUSAN JUST HOURS LATER

I can't wrap my brain around this. CAN NOT. Talk about BLINDSIDED?? Coincidentally, Susan left a comment on a post in this blog titled Blindsided. I was worrying over nothing.

The world is huge and Susan Niebur would be the best person with whom to have that discussion. She was, you see, an astrophysicist. She had a gentle voice. Her kindness.... You can HEAR it in her beautiful voice.

That video is Susan, reading a post from her blog and it is compelling to watch. When it was posted, boy, did she get a HUGE response. This particular entry was read by over 35,000 people and contains close to 400 comments. Here was Susan's response to all those who asked, "What can we do?"

Pick one of her suggestions...... and do it.

The world is slightly less bright again...... in less than twelve hours. ANOTHER life taken by this dread disease. ANOTHER husband and two very small children whose lives will never never ever be the same. This is tragic on so many levels. My heart is heavy.

I am truly overwhelmed today. This was more than any community should have to bear. Two beautiful, strong, intelligent women. Gone. Keep Susan in your thoughts. And her broken-hearted family. Rest easy and peacefully sweet Susan and know you were loved by so many.

Again, I am leaving the comments closed. Anyone who reads my blog and did not know Susan, this isn't about me. If you would like to say something, please take a moment to offer some words of support to her husband and those two little boys.

FOR RACHEL WITH UNENDING LOVE

Just when you think there's nothing to say, LIFE blindsides you. I am overwhelmed with grief as I just learned about the death of a blogger buddy and twitter pal.

Rachel was 42 years old. She had "advanced disease," "metastatic breast cancer," or in layman terms, her cancer spread beyond her breast. Her blog is on the blogroll: Cancer Culture Chronicles

Rachel was quite vocal in her feelings about Komen and led the charge into exposing the sheer stupidity of so much of the pink washing and the LACK of funding for research. She was witty and wise. Snarky. And her blog was filled with resources for all of us to use to move beyond the status quo.

The research did NOT move quickly enough to save Rachel's life.... to come up with a way to stop the spread of the disease. Her death comes as a shock to the entire world of social media.

I suspect we all wondered what was happening when we didn't hear her voice in last week's frenzy of CRAP.

The tears are flooding many keyboards this morning and will continue to do so for quite some time.

On behalf of Rachel, DO something. Click the link to her blog and use the resources she has listed......Pick something that speaks to you, ANYTHING.... Just Do something in her honor. Actually, she did suggest Metavivor could do some good with the money in this contest. How about voting in her honor? Leave a comment for her devoted husband and family.

She did so much for us. It's our turn to give back. Let the world hear our voices. Together. Making an impact on behalf of our friend. Another life taken by the dread disease. Another life taken far too soon. Another family devastated.

Rest in peace, my sweet loving friend. The light in this world is forever diminished. You will be sorely missed.

Rachel Cheetham Moro 1970-2012

Of course, I now CHERISH this last tweet exchange during the BCSM chat on January 23th. Our topic, ironically enough was metastatic disease....

Rachel said:
The other thing abt living with mets, is our worlds start to shrink. That's where fearless friends are so important.
I replied:
I'm fearless. and anyone else I missed in the chat w/ mets Identify yourself pls so I add u
Her reply which will live in MY heart forever:
<3 <3 <3 # bcsm
The following morning, she posted the link to the entire chat. One of her tweets from that chat is now particularly poignant:

"I think you'll find most of us don't fear dying, but what comes in between. Very difficult to find people to talk to abt that"

And then, one day later, on January 24th, her very last tweet:
Are we finally being heard??? Keeping my fingers crossed....

It's up to us to make sure her voice is NEVER silenced. It's up to us to make it happen. Those were here last public words in the social media arena.

Uncross your fingers and rest easy, Rachel. Yes, We ARE Being Heard.... and we will continue at this until the whole world hears us.

PS-I'm disabling the comments on this post. I'd much prefer anyone who feels the need to comment go directly to Rachel's blog and leave your thoughts there...... this isn't about about me..... it's about Rachel, it's for Rachel and it's for anyone who reads this blog and who does not know Rachel....... We mourn her death deeply but mostly, we celebrate her life. Our lives are enriched because of hers. I hope you will click, read and leave a message.

I GOT NOTHING.....

I got nothing. I have about five different entries half written and for now, I got nothing.

I am exceptionally GLAD that PINK was overtaken by Big Blue yesterday. Maybe you aren't a sports fan or maybe you don't know that the NY Giants whose stadium is in New Jersey and shared by the NY Jets are known as Big Blue. (The Jets? Gang Green. In case anyone really cares)

I am tired of thinking about Nancy Brinker and Komen and the fact that I believe their big announcement is nothing but smoke and mirrors in a lame attempt to rehabilitate The Brand. I'm thrilled that Pink, at least in this neck of the woods, isn't even on the radar screen. We are awash in Blue. The Empire State Building is illuminated brightly. Bright and BLUE.

I am going to continue to bask in the glow of an exciting football game. And, it really was a great game. I am going to check You Tube to see all of the commercials I missed. Wasn't at all impressed with Madonna. She looks fabulous but I'm skeptical about the singing. Looked like lots of lip syncing. I'll have to hunt around and get the 411 on that situation.

And life will return to normal tomorrow. For today, however, we interrupt our regularly scheduled broadcast......

Friday, February 3, 2012

NOT SO FAST-READ THE FINE PRINT

POST NUMBER TWO FOR FEBRUARY 3, 2011...

BREAKING NEWS FROM KOMEN.... OR IS IT????

Hold the champagne and let's not cue the confetti JUST YET.

A statement was released. I have questions. Lots and lots of questions...... Primarily because I did watch an interview conducted by Andrea Mitchell with Nancy Brinker and it began to sound like what a Crisis PR person might call, "The first step in rehabilitating the brand."

Transparency? Not too sure.

Some twisted version of the truth made to sound like the message is different now than it was two hours ago? PerHAPS.

Waiting for some smart ass to ask the right follow up question? Definitely.

Who is the smart ass? Not me, I'm a smart ass, I'm just not smart ENOUGH......

And the big question? A statement was made. Will a Q&A interview even be granted.... Jury in my head is still deliberating.

The interview is here and there is a written transcript..... THANK YOU for that... saves me having to pull out my own soundbites.... I'm turning into the person I despise. The soundbiter.

Here's my sticking point.....

The statement specifically says "existing grants."

Here are the lines in the interview BEFORE the "reversal" that makes me question if this "reversal" actually means ANYTHING at all. The emphasis is mine.

NANCY BRINKER, FOUNDER AND CEO, SUSAN G. KOMEN FOUNDATION: Well, Andrea, I frankly think, I don't know, it's a mischaracterization, of certainly, of our goals, our mission, and everything that we do. In fact, we haven't defunded Planned Parenthood. We still have three grants that we've committed to, at least for another year, through the end of the grant cycle, and we’re going to –

MITCHELL: But that's just through the end of the grant cycle. Let me just put out there first of all, that I have been very identified, an outspoken supporter and participant in the races over the years long before I, myself, ended up being diagnosed with breast cancer. So I want to just put that out there. We've known each other a long time as well, both when you were a diplomat at the State Department.

And the interview continued:

BRINKER: The investigation isn't the only issue, Andrea. In 2010, we set about creating excellence in our grants. Not just in our community grants, but in our science grants. Putting metrics, outcomes, and measures to them so that we can translate all of the science we funded over 30 years.

Now, part of that includes taking these grants into communities and being excellent grant givers. Many of the grants we were doing with Planned Parenthood do not meet new standards of criteria for how we can measure our results and effectiveness in communities. That is not to say that if they did meet those criteria, they would not be --

And continued:

BRINKER: The issue -- that's not the issue. Because that's not our issue. Our issue is grant excellence. They do pass-through grants with their screening grants. They send people to other facilities. We want to do more direct-service grants. You know, we contacted them in the fall, because we've been a longtime partner of Planned Parenthood, almost 20 years.

THAT CONCLUDES YESTERDAY’S INTERVIEW POINTS.

AND NOW FOR THE “WHOOPS, WE REALLY F’D THIS ONE UP!” STATEMENT. AKA: DAMAGE CONTROL 101.

"We will continue to

fund existing grants

including those of Planned Parenthood and preserve their eligibility to apply for future grants,

while maintaining the ability of our affiliates to make funding decisions that meet the needs of their communities."

And My Take Away from this????

Well, herein lies MY problem...... The interview with Andrea Mitchell already laid foundation about the Planned Parenthood grants NOT MEETING their standards of excellence because of this "pass through" mammography process. In other words, from, once again, MY CHEAP SEATS... nothing is changed.... They only found a Plan B to explain how they will continue the DeFunding of Planned Parenthood. They just backed off "the under investigation" part of the program. I'm a skeptic. I read words carefully and..... I want a Q&A. I want someone to ask for FULL clarification.

Or, conversely, I have taken up residence on the grassy knoll. #OccupyTheTRUTH please... Without bullshit, without carefully crafted Madison Avenue handlers whose sole goal is to rehabilitate The Brand.

And again, I say, I am NOT a For Proft Commodity. I am a woman with a breast cancer diagnosis, still living with some of the long term fallout in the name of survival.

Too Little, Too Late and You Can't Unring The Bell.

Shout out to whomever turned into the @SusanKomenGhost on Twitter. Brilliant. Brilliant. I hope to see you in one of those pixelated interviews with a weird voice. You are a genius, whoever you are, wherever you are....

PS-Apologies for the messy fonts and all that jazz....this is all about the message and NOT the appearance..... In the case of this announcement.... I'm thinking it's more about the "appearance of the message" and not its true content....

TWIT STORM FALLOUT

komen-foundation-gave-75-million-grant-penn-state

I never know if the medical links or the newspaper links are going to work or expire....

Cutting and pasting IN ITS ENTIRETY...... CREDIT NY TIMES

Outcry Grows Fiercer After Funding Cut by Cancer Group

By JENNIFER PRESTON and GARDINER HARRIS

Published: February 2, 2012

REPRINTS

The nation’s leading breast cancer advocacy organization confronted the growing furor Thursday over its decision to largely end its decades-long partnership with Planned Parenthood, with rising dissension in its own ranks and a roiling anger on the Internet showing the power of social media to harness protest.

Enlarge This Image

Callie Richmond for The Texas Tribune

Cecile Richards

The Lede Blog: Top Komen Official Resigned in Protest Over Planned Parenthood Cuts (February 2, 2012)
City Room: Mayor to Give $250,000 to Planned Parenthood(February 2, 2012)
Uproar as Breast Cancer Group Ends Partnership With Planned Parenthood (February 2, 2012)
Cancer Group Halts Financing to Planned Parenthood (February 1, 2012)

Related in Opinion

Editorial: A Painful Betrayal(February 3, 2012)

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All seven California affiliates of the organization, the Susan G. Komen for the Cure foundation, released a statement saying they opposed its decision. Twenty-six senators urged the foundation to reconsider its decision. And a pledge of $250,000 from Mayor Michael R. Bloomberg of New York helped Planned Parenthood, which provides family planning and abortion services in hundreds of clinics across the country, to more than make up the money it lost.

“Politics have no place in health care,” Mr. Bloomberg said in a statement, an echo of the complaints voiced by many women elsewhere. “Breast cancer screening saves lives, and hundreds of thousands of women rely on Planned Parenthood for access to care.”

The deluge of criticism Komen faced on Twitter, Facebookand Tumblr came two weeks after online protests led Congress to suspend an effort to pass anti-piracy legislation that some in the Internet community saw as a threat to online freedoms. It demonstrated again how social media can change the national conversation with head-snapping speed.

The furious debate is also a sign of the intense polarization of the nation’s politics in a campaign season during which Planned Parenthood, led by Cecile Richards, has become a lightning rod for attacks from Republican presidential candidates.

Komen’s founder and chief executive, Nancy G. Brinker, held a news conference Thursday and insisted that the organization’s decision had nothing to do with abortion or politics. Rather, she said, it resulted from improved grant-making procedures and was not intended to make a target of Planned Parenthood.

“We think this is the right thing to do from a stewardships standpoint,” Ms. Brinker said.

Her comments directly contradicted those of John D. Raffaelli, a Komen board member and Washington lobbyist, who told The New York Times on Wednesday that Komen made the changes to its grant-making process specifically to end its relationship with Planned Parenthood. Mr. Raffaelli said that Komen had become increasingly worried that an investigation of Planned Parenthood by Representative Cliff Stearns, Republican of Florida, would damage Komen’s credibility with donors.

Komen gave Planned Parenthood $700,000 last year — a tiny portion of its $93 million in grants — to finance 19 separate programs. A growing number of religious organizations had become concerned that donations to Komen would benefit Planned Parenthood and had advised members not to give to Komen. Rather than risk offending some donors with a relatively small portfolio of grants, Komen decided to largely cut off Planned Parenthood, Mr. Raffaelli said.

To Planned Parenthood, that decision amounted to a betrayal of the organizations’ shared goal of saving lives through breast screening programs. Ms. Richards, Planned Parenthood’s president, said her organization was gratified by the support the controversy has brought.

“We provide care to one in five women in America, and over the last two days it seems we’ve heard from every one of them, through Facebook, Twitter, e-mail and all sorts of ways, “ Ms. Richards said. “It’s a true show of women standing for women.”

Over 30 years, Komen became one of the most successful disease advocacy organizations in the world by making pink ribbons and the fight against breast cancer as prevalent a symbol here as baseball and apple pie.

Avoiding this kind of controversy was the very reason Komen chose a quiet ending to its relationship with Planned Parenthood, Mr. Raffaelli said. And he said Komen was bitterly disappointed that Planned Parenthood was using Komen’s decision to raise money.

The Komen foundation posted a video on its Web site and on YouTube with Ms. Brinker defending its decision.

But the video, which drew more than 2,800 comments and was viewed more than 39,000 times, did not appease the growing number of people online, mostly women, who decried what they view as the politicization of women’s health care.

Fueling the debate was news that Mollie Williams, a top official at Komen, resigned after the board decided in December to withdraw funds from Planned Parenthood for breast cancer screenings and other services, according to people close to the Komen organization.

Ms. Williams, the managing director of community health programs at the Komen foundation, departed this month, just weeks after the decision on the funds. She was responsible for overseeing the distribution of $93 million to more than 2,000 community health organizations.

Asked about Ms. Williams’s resignation, Liz Thompson, Komen’s president, said she could not discuss personnel matters.

Ms. Williams did not respond to requests for comment on her departure. In an automated e-mail statement, Ms. Williams did not provide a reason for leaving and noted she “must honor the confidentiality” of her former employer. “However, anyone who knows me personally would tell you that I am an advocate for women’s health,” the statement said. “I have dedicated my career to fighting for the rights of the marginalized and underserved. And I believe it would be a mistake for any organization to bow to political pressure and compromise its mission.”

Dr. Kathy Plesser, a New York City radiologist and member of Komen’s scientific advisory board, said she would resign if Komen did not reverse its decision. “I strongly believe women need access to care, particularly underserved women,” Dr. Plesser said. “My understanding is that by eliminating this funding, it will jeopardize the women served by Planned Parenthood in terms of breast care.”

Komen’s decision prompted thousands of donations to Planned Parenthood and threats by longtime Komen supporters to toss their pink ribbons and no longer join its fund-raising walks and runs. Mr. Bloomberg has been a longtime supporter of both the Komen foundation and Planned Parenthood. According to his office, he has given $555,000 to Planned Parenthood over the years. And he has given $200,000 to the Komen foundation, much of it in the form of matching grants.

Kate Taylor contributed reporting.

Thursday, February 2, 2012

THE TWIT CONTINUES .....

Well. I must say that Awareness has been raised. At long last. The RIGHT kind of awareness. Interestingly enough, the Canadian premiere of Pink Ribbons Inc. is tomorrow. How timely! In an O Henry kind of a way. In case your page isn't loading properly and the Pink Ribbons box isn't on the right side of your screen so you can click to watch the trailer, the link is here.

I never tried to hide my commitment to Army of Women. I joined to get email notifications well over a year ago. In September, I wanted to do more and I decided to volunteer my time because I appreciate how important it is to fill research studies. The quicker they are filled, the quicker we can begin to rule out and hone in on some answers. I want answers. I want that Deadline clock to actually mean something. The End of Breast Cancer.

The Komen Twit Storm continues to explode. I am NOT a reporter so I am not fact checking to the extent that I would like. Information is coming fast and furious. I'm just going to hit the points that are either very important or utterly ridiculous. Mention of the movie and Dr. Love and The Deadline are all exceptionally relevant to this discussion.

Komen contends they are bound by their own set of constantly reviewed stringent rules to make sure all donated dollars are spent wisely. And of course, more than safeguarding those dollars, OUR TRUST is of utmost importance. (As my girlfriend and I like to say when we are particularly irritated with personal crap, "You can't make this shit up!") The newly enacted stringent rule about funding any organization under government investigation which started this maelstrom? That was JUST put into place. The planned parenthood investigation began in September. What? Oh, I get it. Wait until AFTER October ... let enough time pass so all the pledged monies are collected. October is The Cash Cow. Put the new rule in place now, yank funding. Seems a bit disingenuous to me. Plus, Bank of America is under investigation. Why hasn't THAT tie been broken? I'd really like an answer to that question. It's NOT rhetorical. It demands an answer.

Then, there was this little bit of information that I stumbled upon last night. The INTENSE lobbying that is done by Komen? The information contained in this piece made my blood boil. Toward the bottom, it specifically mentions the Deadline 2020 initiative of the National Breast Cancer Coalition. In prior posts which I am not going to link here, I discussed how I wrote to my congressman and his name is now on that bill. (He is a Republican, just for the record) There is a comment underneath that publication which was added by Dr. Love last night. It's time to stop the bickering and start researching. Enough is SERIOUSLY enough.

There are many more stories out there, FAR too many for me to list. I just happen to like a little blurb in an article in this publication. The last paragraph is a tad upsetting and the last sentence, I'll save you the trip, "Maybe Komen should concentrate their granting criteria on whether the recipients are actually helping cancer patients." To that, I once again repeat my ongoing "battle cry" (sorry about the war metaphor)..... "I am NOT a 'for-profit' commodity. I am a woman with a breast cancer diagnosis. Are We Clear?"

What should you take away from all of this? First of all, JOIN Army of Women if you haven't already done so. Broken record.... broken record.... but yes, it IS that important and I am seeing the number of enrolled women going up a little each day. If you would like a quick version of what it means to join, in the banner above the clock at the top of this page you will find "Army of Women" ... click the link, read, join.

What ELSE? MOST importantly..... WHY is it necessary to donate your money to a "middle man?" ANY middle man?? Years ago, it may have been necessary to donate to an organization that had the resources to immediately identify where there was a need for funds. Today? I think not. It's 2012. You can google breast cancer organizations or breast cancer research or whatever combination of words you can think of. In a millisecond, you will have tons of options.

Donate DIRECTLY. If this planned parenthood thing has you pissed off, send your money directly to them. (As an aside, you can specify you want your donation to go toward breast cancer screening and as a further aside, last I checked, in less than 24 hours, $600,000 was donated to planned parenthood from the time this Twit Hit The Fan......So much for the yanked funds. People stepped up and by now, they may actually have received donations in EXCESS of what was taken away. KaPOW!)

If you want to keep it local, contact some of the organizations in your area. Ask them how they spend their donor dollars. Is this how you want your money spent? Send it right to them. Call the cancer hospitals. I know, for example, Sloan Kettering has a ton of programs for patients and survivors. Most of them are staffed by UNPAID volunteers but they do need funds to purchase supplies, let's say, for their "Art Expressions" program. In the case of MSKCC, they also use donations to fund research.

Want something more high profile? Contact the National Breast Cancer Coalition. Ask them what they are doing with your money should you choose to send it to them. Want to send it for research? I would HIGHLY suggest contacting the DSLRF (Doctor Susan Love Research Foundation). They conduct studies. And, in the spirit of truly working on behalf of all of us, seeking ways to PREVENT the disease, her manner of conducting herself is in the spirit of true cooperation. It isn't about being The Alpha Dog. It's all about helping us. Those of us who are struggling with breast cancer fallout and preventing future generations from ever having to face the choices some of us had to make.

Oh... and her "Army of Women" ..... When she is looking to fill her OWN studies.... she doesn't even dip into her own database to try to fill her own studies. The Army of Women database was set up for fellow researchers to give them an avenue to connect with interested women. That's pretty selfless. At least it feels like that to me.....

And the Twit Storm continues. This is a case study in a public relations nightmare. Crisis management to do damage control? I think too many of us were already annoyed with pink ribbons and being mass marketed. It was a powder keg. Gasoline was poured. Komen tossed the match.

From the cheap seats where I sit, contrary to popular sentiment, There Is Such Thing As Bad Publicity.

CHEMOBRAIN.....In The Fog

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