Monday, February 27, 2012

RIDICULOUS, RIDICULOUS-ER, RIDICULOUS-EST

Yes, this is me, once again making up my own words.  This video is probably not new for most of you but I never saw it, so here goes.  I need to be sure to keep in in my blog... for posterity.  


It doesn't get much dumber than this?  The world has gone mad......  This was a fundraising event that took place before I got involved in this blog world.  I surely can't be the only way who finds it bizarre that a STRIP club is raising "awareness" or money for breast cancer.  Seriously?  I don't know whether to laugh or cry or hurl something.  It's ridiculous.  I stumbled over this when I began to dig for information about something that is at the top of the stupidity food chain..... First, the video and then, take a peek below said absurd video for some REAL (raise the sarcasm level in your tone) "amusement."  




That, as my girlfriend is fond of saying, falls under the heading of:  "You can't make this shit up!"

THIS, however, is truly the Ultimate, The Ridiculous-EST thing I've ever seen.  It takes the booby prize.  Yes, pun intended. PUNch, too.  Perhaps.

We are all familiar with "speed dating" .....  Well.... how's this for an innovation.  Speed product pitching.  Sounds like a pretty innovative idea to me.  The name of the company is New Product Events.  It's easier for you to read they way it works rather than me going into one of my lengthy explanations.  Very clever young women.  Nice way to think outside the box.  Love it.

Until.  I. hate. it.

The next event open for registration?  The THINK PINK SPEED PITCHING (TM) MEDIA EVENT.  I emailed this from the registration page directly to my blog.  I didn't want anyone to have to click on a link and lose the full effect of this utter nonsense.

I'm pissed off.  I wish Rachel were here.  She would have a field day with this .....  I'm not clever enough..... the rest of you can add your snark.  We can have our own little version of "What Would Rachel Say?"

Me?  Just a couple of questions.  Don't think they are rhetorical, either.

  • Why the need to trademark "Think Pink Speed Pitching" ..... that's a good starter question.
  • And, the pink product pushers get to pay $2500.00 for the honor of being one of eighteen participants pushing their pink ware to ...  ummm... well, to WHOM?
  • Is any part of that $2500.00 registration fee being donated to fund research or to help women who may need financial assistance because of their disease?    
I'm just curious.  And I'm F..ing outraged.  I promised Rachel I'd be a fearless friend.  I also promised MYSELF I'd be fearless in this fight.  If I see something, I'm saying something.  I'm not going to stop making noise until I have acceptable answers.  What is this all about???  Aside from the obvious... more people finding NEW AND INGENIOUS ways to MAKE MONEY out of "The breast cancer brand."

I can't be the only one who is this irritated.  Or maybe I am... and I'm just turning into one of those crotchety old bitches.  Hell... I'm blaming that on the estrogen suppression.....  I'm getting cranky.  I'm intolerant of being branded.  (OK.... I seriously think I might prefer an actual branding iron.)  When do we say, Enough is enough.  Personally, I think this crossed the line.  Feel free to tell me why I should feel differently.  I'm open minded.  Just not about being the object of someone's "in the black" bottom line.

FYI, this is NOT the first time they held one of these pink events.  I'm digging to find out about the past events.  So far, no luck.  I'll keep digging... but, without further adieu:

null

Think Pink Speed Pitching™ Media Event

Contact

Nicole Vance
New Product Events
704-560-4917

Register Now!

When




Think Pink Speed Pitching Media Event


Wednesday, May 9, 2012


Both Sessions Included!
Morning 9:30AM to 11:00AM EDT
Afternoon 12:30PM to 2:00PM

Different media panel at each session!



Directions

Hilton New York Rockefeller Center

Nassau Suite, 2nd floor
1335 Avenue of the Americas
New York, NY 10019
 

 Think Pink Map

Past Events


Think Pink ONJ
 null

Join us for the most unique kind of media event...speed pitching™













Where else can you get the undivided attention 
of the top editors & producers looking for
pink breast cancer products all in one day?

No place. This is it.

Only 18 brands will be selected to participate.
Submit your product for consideration before it's too late.

For more information about our events visit us at
NewProductEvents

Here's how it works.   
You get two fast-paced, media-packed 90-minute sessions where you will move through the room pitching your product face-to -face to individual media representatives.  
You will rotate every 5 minutes from media table to media table.  
No other  media event is designed to give every brand this one-on-one pitching experience.
No distractions, no crowds, no desperate  attempts  to get the media to stop at your booth. This is a one-of-a-kind opportunity to impress top media outlets for their product review editorials.
All  you need to  bring is one sample to demonstrate, because the media will take home a fantastic, pre-prepared tote bag with your product and product literature.
 Pink Ribbon
All products must financially support breast cancer awareness, treatment or research. Please submit a statement as to how your product complies.
We are looking for products from every category:

  • Fashion & Accessories    
  • Health & Fitness
  • Tech & Gadgets
  • Home & Garden
  • Kitchen & Food
  • And more!

Cost to participate:  $2,500
Exhibitors will receive a gift card for the Hilton Marketplace restaurant for breakfast or lunch on the day of the event.


Refund & Cancellation Policy:
Registration Fees & Payments: Registration fees must be paid in full upon selection. Exhibitor fee includes participating in the event.  The exhibitor fee does not cover other expenses, including but not limited to shipping, travel, Internet access, or equipment rentals.
Withdrawals & Refunds: Due to the need for brand and product diversity, once an exhibitor registers other brands are turned away, therefore refunds are not given for withdrawals from the event.

Event Cancellation: Should the event be cancelled due to circumstances beyond the control of New Product Events, including, but not limited to, labor strikes, terrorism, earthquakes, fire, and weather conditions, exhibitors will be refunded 50% of the registration fee.

For circumstances outside of those listed above, New Product Events reserves the right to cancel any event at any time prior to the event. Should New Product Events cancel an event, a full refund will be made to the exhibitors for the amount paid to New Product Events at the time of the cancellation.  Media outlets mentioned as part of the media panel are based on firm commitments on behalf of the media attendees.  New Product Events reserves the right to replace media attendees as necessary.

Loss, Theft or Damage:
New Product Events is not liable or responsible for loss, damage or theft of the exhibitor's products or equipment at the event or in transit.



As for Rachel, I think Ronnie, Being Sarah's beloved answered my question.  WWRS?  Perfectly worded tweet, in fact PITCH perfect:

"2500.00 2 pitch pink shit 2 shitheads."

Friday, February 24, 2012

BE PASSIONATE - BE HONEST - BE FEARLESS

Today I am straying so far away from the theme of this blog.  I promise I'm working my way back to the humor ....  the sarcastic humor about my brain activity or lack thereof .....  I've been distracted.  The deaths of three young women within a short span of time took lots out of me.  Staying (big AHEM) aware (insert eye rolling sarcastic tone using that voice in your head when passing over that word "aware") of what was going on with SGK was challenging thanks to those ADD and OCD chemobrain issues.  I tried very hard to keep my thoughts (in random order): apolitical, non-religious, as factual as I could discern with all of the double talk and the information coming at warp speed ALL while remembering that MOST of those who volunteer are doing so at the local level where 75% of the money stays in the community.  They are still grass roots.  They are dedicated and they ARE our sisters.

While I wanted to make my point that the PP debacle was disgraceful, I was happier that it put the Pink Ribbon under a microscope in one fell swoop.  Organizations like Breast Cancer Action have been at this for years and I'm going to take some poetic license and go for the big dramatic effect.  I think, within hours (quite possibly MOMENTS), social media engaged more people to take action and raise outrage.... "where's the cure and WTF did you do with the money?" .....  than many organizations combined have accomplished over the course of years.  That is not a knock on the organizations.  It is the power of social media and a global outreach where things are in our faces in real time.  And that is a perfect segue.

WTF is going on in Syria?  I don't mean that as an invitation to actually tell me.  Question is definitely rhetorical.  I can go catch up on my worldwide current events.  I simply have to step beyond the breast cancer zone in order to gather information.  While the breast cancer zone may sound one dimensional, you'll have to trust me on this..... My breast cancer zone is more like the twilight zone.  There are more balls in the air and I'm still trying to get it together.  I'm not going to outline all of the irons I have in the fire.  Some of those balls need to land in that fire so I can get my chemobrain to FOCUS.  Break things into those ever necessary "smaller tasks." Or, as I said in a prior post, I'm officially channeling my inner Carrie Bradshaw and I'm hiring an assistant along the lines of Jennifer Hudson.

Typically, MY segue took a paragraph detour.  This should surprise no one.  It's who I am, it's what I do but as of this moment, I AM putting the jokes on the shelf because nothing about this story is even remotely funny.  It's so very sad.  The other night on AC360 there was a video that was one of the most heart wrenching things I have ever watched.  A reporter was in the room as a very young baby died from mortar fire that is raining down on the Syrian city of Homs.  Into residences. Where babies are present.  In the name of?

The video is graphic.  You can see the baby take his last breath.  Anderson Cooper was speaking to Marie Colvin, the journalist who was in the room with the distraught grandmother and the grief crippled father as that baby died.  The interview concluded with Anderson saying, "I know it's impossible to stay safe but please try."  Her reply, "Thanks very much, Anderson."

HOURS later, literally, within a couple of hours, Marie Colvin was dead.  She was killed alongside French photographer Remi Ochlik.  Marie grew up on Long Island.  Her mom still resides in the home where she grew up.  She was the oldest of five children.  Two sisters, two brothers.  Pretty much the same age.  Me and Marie.  And the similarities End Right There. She had to have nerves of steel.  Me, not so much.  My God, she lost an eye in a war zone several years ago.  And she continued doing what called her.  Me?  I never say never.  But, No WAY.  We share a similar family structure.  And that's about it.

Oh, and I presently live quite close to her hometown.  It would take me less than five minutes if I hopped in my car for a quick drive.  I'm fairly certain I could locate the home within another five minutes.  It's a small community.  I'm guessing there is some sort of media in the general vicinity.

I am as horrified as the rest of the world at her death, at the death of her young colleague, at the death of that baby, at the thought the attack that killed these reporters may have been a deliberate act in order to stop the world from seeing what is happening in Syria.  I am horrified at what is happening RIGHT NOW in Syria.  Marie put her life on the life to get that last story.  And she paid with her life.  I cannot in any way, shape or form, attempt to offer any sort of solution oriented suggestions.  This is far beyond the scope of my ability.  I just know her death can not be in vain.

Her mom spoke to reporters.  Quite eloquently and poignantly, she stated, "The reason I've been talking to all you guys is that I don't want my daughter's legacy to be 'no comment' ..... because she wasn't a 'no comment' person."  And her mom continued to speak and these are words I will print out to so I can honor the life of one very brave and very determined woman.  I will live by these words in memory of Marie Colvin.  I will live by these words each and every day to honor a "neighbor" whom I will likely never meet, but she is a neighbor nonetheless and she will be burying her child in the coming days.

For Rosemarie Colvin who will live with a heavy heart and for Marie Colvin whose courage is indescribable, I will follow the beautiful words of a heartbroken mother:

  "Her legacy is: Be passionate and be involved in what you believe in.  And do it as thoroughly and honestly and fearlessly as you can."

The words of a grieving mother.  The words I will carry with me in my heart as I continue to step from the life that IS to the life that IS waiting.  It's time for me to catch up to my own life.

Thursday, February 23, 2012

SHARE YOUR LOVE WITH THE NON PROFITS!

I stumbled upon a website called Great Nonprofits and as part of my commitment (to myself) to add my voice... okay, really, my BIG mouth... to the roaring sound of change, I went poking around.  I haven't really had too much time to investigate the site but I see lots of familiar organizations in the Breast Cancer category.  I began adding a few of them to my favorites.

Today, I'm going to ask you to step away from your comfort zones.  Or, I'm going to play school.  I'm the teacher.  Here's the homework assignment.  Click on this link and share the love.   How about adding some remarks to give a boost and a shout out to Dr Susan Love Research Foundation?  Not sure what to say or how to say it?  Take a peek around the website. You know what Dr. Love is all about......see how the website is a treasure trove of information.  Now, get on over to Great Nonprofits and share your thoughts about the important work being done by my heroine.

We, the breast cancer bloggers, the rebel tweeps, the fearless friends.... we all get it.  No more pink ribbons.  No more awareness campaigns.  It's about action.  It's about the work of the National Breast Cancer Coalition as they push to beat that clock....... it's about Breast Cancer Action and peeling back the pink AND, it's about research research research.  I can't think of anyone more committed to eradicating breast cancer than Dr. Love.  I am Reviewer Zero.  Isn't that the way they refer to the first person who spread the flu in the office.  Patient Zero?  There were no reviews for DSLRF until I wrote mine.  Ergo, Reviewer Zero.  I like that I was first.  Not boastful, but it's that thrill of finding the needle in the haystack.  

Great Nonprofits is akin to Trip Advisor.  Do you search the internet to find a good hotel in the best location by reading the reviews of others?  Check Yelp to find the trendy coffee shops?  Well alrighty then.  Read real people reviews about the non-profits.  Over the next couple of days I hope to search out some of the other organizations that I know are doing good work.  I'll write reviews and there are a couple of small local groups in my community that do great things.  I will add them to the list of non-profits.  I was hoping to compile a list of "worthwhile" organizations anyway...... it was one of the projects that's been bouncing around my brain.  That website seems to have a far greater reach than my blog.  Plus, the website has a foundation.... an infrastructure already in place.  So, off I go......

I don't want my homework to be late.  I understand this substitute teacher they call chemobrainfog is a real pain in the ass. Not up for being bitchslapped by a bitchblogger......  So, if you'll excuse me, I have some work to do.  And, SO DO YOU. Get moving!


Wednesday, February 22, 2012

REBEL WITH A REASONABLE QUESTION

Prior to becoming an official bitchblogger, with proper thanks AGAIN to Kathi Kolb who blogs at Accidental Amazon and our sorely missed dear friend Rachel Moro, it was in there.  The bitchblogging thing, I mean.  In me, I mean.


I have to thank Mark Zuckerberg and the design team at Facebook for showing me that I was a bitchblogger and a rebel tweep long before I began blogging and WAAAYYYY before I understood a hashtag from a tic tac toe board.  I am getting the new Facebook "timeline."  This timeline thing, before it was thought out, apparently just showed up one day.  Let's all remember that Facebook began as a secret collegiate club.  I do believe some of the young'uns in my world deleted their FB accounts and started all over again.  The collegiate uproar may have caused some changes in the way your "new timeline goes live."


I've been warned every day for the past week that on February 24th, my "timeline" will be public.  In other words, delete the shit you don't want any prospective employers to see.  I only began using Facebook to stalk my kids.  I have nothing to delete.  My problem with any future endeavors will be hiding my entire "internet footprint" as a bitchblogger if, for example, I should decide to run for public office or something.  My wise cracks are "cached" all over the place and somehow, I think I lose lots of credibility when it can be readily found that I was seated on a couch within an arms length of those Jersey Shore boys.  WHATever.  I am who I am and I'll be who I'll be.  And that is that.


The timeline, however..... as I was glancing through, and really.... do I need to really have to figure out how the hell to RELEARN Facebook come February 24th...... I went back to 2009 when I started the kid stalking thing.  Low and behold, I discover an article I posted on my wall, a wall, a feed, a status update.... whatever.... wherever.....however.....  It was from The Gothamist on December 18, 2009.


It humored me to read that New Yorkers were crowned The Unhappiest People In The Entire Country.  And, if you lived in New Jersey, Connecticut, Michigan or Indiana, you were not far behind us miserable bastards in New York.  On the other side of the coin, if you lived in Hawaii, Louisiana, Colorado, Florida or Tennessee, you were living large.  Hawaii, got it. Tropical paradise.  Louisiana..... hell, yesterday was Fat Tuesday and I should have been hanging from a balcony on Bourbon Street with beads or something.  Aspen, if you love the cold weather that would be The Place.  Miami? No explanation necessary and I have a photo of a GIANT mojito on my phone to prove that.  Tennessee.... I did rather enjoy the nine hours I spent in Nashville but maybe that could be more about Elvis and Memphis?


Why does ANY of this matter?  Well.... for starters, can someone tell me whose time, energy and most importantly MONEY is spent compiling the data necessary to come up with this list.  Does anyone really care?  Is is appropriate to jump to some sort of a mass conclusion.  Who reviewed the data?  How did they skew those statistics?  The whole thing was very silly.


Until it wasn't.  And this is where I apparently began to show my bitchblogger teeth.  Who conducted this study?  The CDC. You know, The Center for Disease Control.  And at 7:33PM on December 18, I posed a very simple question...... reasonable, direct, to the point and foreshadowing this foot stomping, wise cracking, answer demanding bitchbloggy attitude......


Quite simply, I took my act on the Riddle Me This path and I asked my "friends"  ....

AnneMarie Ciccarella Does anyone find it bizarre that this study was done by the Centers for Disease Control? THIS is what our tax dollars are being used for? How about studying, um, oh, I don't know... maybe a disease????
December 18, 2009 at 7:33pm · 
And there you have the beginning of my personal rebel rousing...... and by the way, I'm still waiting for an acceptable answer, just in case anyone is interested or has any thoughts OR cares to share anything that resembles an insightful "aha" for the feeble minded, MISERABLY unhappy New Yorker.  For now?  I'm just shaking my head in disbelief.  Stupidity makes me irritated.  I guess that translates over to the unhappy column.  Hell, at least I know WHY I'm unhappy.

Now, if someone, ANYONE might shed some light as to WHY I had to be studied to make this determination?  Hell, I'd be mighty happy.  Miami, let the mojitos flow, huge breaking Hawaiian waves HAPPY.  Check it out, would ya?  And get back to me, could ya?  Hell, let's just waste more CDC money because, apparently, we've run out of diseases to fix.....

Tuesday, February 21, 2012

THE POWER OF ONE

It's possible for ONE person to make a difference.  And, it's possible for ONE person to inspire others to Pay It Forward. This is an absolutely amazing story.  It began with one self-proclaimed impulsive former Catholic man who turned to Buddhism.  He decided, in a random act of selflessness to walk into a California hospital and offer to donate a kidney.  For NO reason other than to help a random stranger.

You can read the entire story on the NYT website.  It began a "chain" of donations that involved sixty people.  One man. Walked into ONE hospital.  Thirty people whose kidneys were failing........ all helped because of the chain reaction.  And, one other man, a fellow Long Island resident (spoken with a sense of hometown pride), whose determination led to the founding of the National Kidney Registry...... another case of ONE person making a difference.  When I make references as I did last week about ripple effects, THIS would be a prime example.  Ripples that turn to waves.

How else can one person make a difference?  In my life, you see, the photo below tells a poignant and touching story.  The little one in the photo is the love of my life.  She was born on March 19, 2007.  My final chemo was the very next day.  March 20.  In a bitter twist of fate, as I was in a chemo chair, my dad was in an operating room for an unsuccessful attempt to repair an abdominal aortic aneurysm.  Less than one month later, my sister called to tell me she was adopting a baby and "what should she do about telling mom and dad."  Funny how I remember that conversation.  I was laughing and crying at the the same time.

My dad was a healthy man who did not appear to be 70 years of age.  There is a photo of us in my very first post.  He was diagnosed with a VERY early stage lung cancer.  Eight months later, he passed away.  It was a series of one thing after another.  Between me on chemo and his many trips to the hospital for tests, surgeries, radiation, let's just say that 2007 was a pretty sucky year for my family and leave it at that.  (Gotta give a shout out to mom, here...... because SHE was diagnosed with her SECOND primary breast cancer about three weeks after my dad died....... the day of her surgery was my very first oncology follow up post active treatment.  THAT, I will say, was bizarre)  Again, 2007?  Not a good year.

Except, the selflessness of ONE person that began a ripple of love within my family.  This was a miracle of joy in the midst of such sadness.  The action of one person begins with the person in the far left of the photo.  She is my sister's friend.  My sister was out with her one afternoon and she mentioned her niece just had a baby.  Her niece was quite young and the baby would be adopted.  My sister who never had children of her own immediately inquired if she might consider an older, single parent.  Before the baby was one month old, she was in my sister's care.

I remember laughing with my sister when she said so much was going on with my dad, she didn't know how to tell them. And I remember saying, "What the hell are you going to do?  Just show up at the house one day with this baby in your arms?"  So much was BAD, we didn't know how to handle something that was overwhelmingly filled with joy.  The baby immediately stole ALL of our hearts.

Despite the fact that my dad was very weak from the onslaught of medical issues and I was still in active treatment, there would be a baby shower.  We needed to celebrate.  And, in lieu of a useless trinket favor at that shower, WE DONATED MONEY to Kites for a CURE and had a kite flown for my dad.  Just so happens this was one of the organizations that Komen went after with a vengeance when they were in the lawsuit portion of the program.

None of that has anything to do with the power of one or making a difference or rippling love.  It is the photo that says it all.  My mom is on the right.  You can definitely see the tears in her eyes.  My little imp who refers to me as "Re-Re" is between my mom and my sister.  On the other side of my sister, is the baby's birth mom.  She is the young girl whose actions are those of such deep love and such selflessness, I can't even scratch the surface to find adequate words.  And her actions boomeranged right back to her.  My sister made a decision five years ago that my niece will know she has two mommies.  Last Thursday afternoon, my sister's friend (who is also an attorney who handled the adoption) called to tell my sister they needed to be in court the following morning to get the last of the paperwork rubber stamped.  And my sister found out the court would be finalizing the adoption immediately upon completing the paperwork.

And so, my sister told her friend, "Call YOUR niece and tell her to get in her car and drive to NY."  In less than 18 hours, there was a judge beaming down from the bench at my sweet godchild, my tearful mom, two proud mommies and the friend who set this all in motion.  One person setting wheels in motion and who made a difference thus impacting the lives of DOZENS of people.  Just one person.  We all have the power to be that one person in the life of another.  

Friday, February 17, 2012

LOVE WILL FIND A WAY

I have made no secret of my unabashed love for one of the most brilliant women the world has EVER known.  Of course, I am talking about Dr. Susan Love.  I’m fairly certain I didn’t need to actually identify her by name, but for the three or five people who may NOT have known, just being on the safe side.

Why, you ask?  I am a breast cancer survivor.  I am five years post active treatment.  I was one of those “high risk” creatures because my mom was diagnosed with breast cancer in her 40’s. Then, I wasn’t high risk anymore.  I was just another woman who developed breast cancer.  In my 40’s, too.  And then, the disease just continued to bounce among my mom (yes, a second time) and my sisters.

I’ve been very vocal in my dissatisfaction with the progress (ok, the LACK of any meaningful progress) in changing the status quo.  Never mind a cure, forget prevention, hell, my treatment in 2006-7 was nearly identical to the treatment my mom received twenty years prior.  I call BS.  That’s not progress.  That’s stagnancy.

Enter Dr. Love.  (You can sing in your head with me if you hear Gene Simmons and Kiss……. )  And if I’m OLD and you aren’t, this is the theme song I’m thinkin of, for Dr. Love:

They call me, Doctor Love
Doctor Love
I am your Doctor (of) Love
Doctor Love
I’ve got the cure you’re thinkin of…..

That fits.  I’ll take it.

Joking aside, Dr. Love is the only one I hear coming up with new ideas, different angles, formulating a plan of attack.  Dr. Love is holding a new deck of cards and the game is about to change.  Me?  I’m All In.  I’ll throw up the ante.  Will you join me?

Great….. This is what we need.  Noise.  Lots and lots of noise.  From lots and lots of people.  For starters, make sure everyone likes the Army of Women Facebook page.  AND THEN, make sure everyone knows that “liking” the page isn’t equal to “joining” the Army of Women.  After you like the page, you have to click the link and sign up.

When you are in a crowd of people using cell phones, get them to shoot a text to 46637 that says armyofwomen.  Coerce the sign up, on the spot.  If you have to listen to these people yapping on their phones in the stupidest places, be bold, be brash, be brazen.  Hell, I’m thinking I may download the ringtone to my phone so I can do a little Dr. Love dance while I'm watching them fill in the blanks.

And now, for the really important stuff.......  This is grassroots, this is the in the neighborhood type stuff.  And this is where each one of us can make a little difference.  There will be all sorts of events beginning to pop up.  I see golf outings and a few spring benefits.  There are a couple of local walks.

If you see something, say something.  That's a big "thing" all over NYC.  Mainly, it's to make sure we keep our eyes open for terrorists, but I want you to keep your eyes out for the "volunterrorists in the pink caps" .... (I can't claim that phrase as my own..... it was part of an editorial piece and I will locate the link and get back to you on that)  However, any place where there are events for which money is being raised for breast cancer "awareness" or "research" or WHATEVER...... we want to be there to get women into the Army of Women database.

They can raise the money..... they can fund the research...... and WE can make sure that their research studies are filled by getting the word out to as many women as possible.  A researcher with a great idea and a boatload of money isn't going far unless there are ready, willing and able participants.  It doesn't matter how large or small the event might be, we just need to keep the ripples moving until they turn into waves.

So, I am officially enlisting your help.  If you see an event, send me an email.  There is a contact link at the top of the page with my email information.  I'll take it from there and pass the information along to the right people.  The more places we can get the word out, the more chances we have of amassing the women we need to shake things up.  Put my email address into your smart phones.  Snap pictures of any signs you might see.  Forward me the picture.  We have to get the ball rolling.  One small thing.  If each person does just one small thing, together, we will watch great things unfold.  I am sure of it!

ON A TOTALLY SEPARATE NOTE...... PINK WELL ORGANIZATION IS PROMOTING A "VOTING CONTEST" .....  Can I get as many people as possible to vote for Metavivor in this "contest"  ..  They fund research for Metastatic Breast Cancer.  It was the charity of choice of Rachel Moro.  Our votes (three a day, every day through May using twitter, Facebook and an email account) and they could be awarded a hefty donation.  Just because we took the time to vote.  I'm in.  Not only for Rachel, but for Susan, too.  And for my friend.  They all died of metastatic disease.  Please......  VOTE FOR METAVIVOR HERE!



  

Thursday, February 16, 2012

TELL ME LIES, TELL ME SWEET LITTLE LIES

I SWORE... swore swore swore swore... promised me.... I was done with the Komen chatter.  Clearly, as you will soon see, I am a liar.  I simply can not be trusted to keep my word.

Last week, I was distraught.  If my charming husband were to read those words, he would have plenty to say.  "Distraught? Isn't that a bit dramatic?  Why do you DO that, always with the drama??"  In another lifetime, I would have taken those words to heart and, well, I would have been even MORE distraught.  Since I'm relatively sure he is not reading this blog and I'm fairly certain he has no clue it even exists, I'm guessing I am the only person who would be privy to such a conversation.  Just me and anyone who has access to the internet and stumbles across this and wants to catch a glimpse of what goes on inside my brain challenged head.

In the midst of my distraughtness..... yes, I'm concocting my own words again (and yes, I do this deliberately so I might amuse myself), I realized the loss of life; correction, the loss of three young lives, held far more weight than a PR crisis involving an organization for which I have no respect.

Before I go any further, I want to say something on behalf of three other women who mean lots to me.  These women are volunteers at local Komen affiliates in New York and New Jersey.  My gripe is NOT with the affiliates.  I don't know what goes on at the local level, but I do know these three women and their hearts are made of gold.  Nah... they are made of platinum.  Yes, I love them, I respect them and I support their choice to volunteer within their communities.  (Quietly, I wish the affiliates would all break free so they could keep all of the funds they raise without kicking back to The Komen Corporation but that's a whole other story.)

I am being honest.  And I don't want to insult my friends even though they may not be reading this thing either......  The honesty is for anyone who is reading.  I can't bash the affiliates.  I can't take away from the pure efforts of good friends.

Now that the transparency of AnneMarie is divulged, I'm bothered by the fact that the Komen big time PR firm seems to have effectively doused the five alarm blaze.  It appears things have simmered back down to just a bunch of bitchbloggers (thank you, Kathi Kolb and the late great Rachel Moro for the term which I will wear proudly).  Apparently, Komen has TWO PR firms on retainer but the alpha dog in the crisis PR race is Ogilvy.  Hmmmmm..... Here goes my zig-zagging brain again....  Ogilvy was retained in August??

The timeline of the unraveling began in September as I recall with this "PP investigation" that triggered the "new rules" that gave Komen something to "point to" within their "guidelines" .....  I keep telling people to get off the Grassy Knoll and suddenly, I am the biggest conspiracy theorist on the planet.  WTH?  Seriously?  Ogilvy, if you don't know, is one of the largest and most successful PR firms in the world.  Coincidentally hired in August on an eight month retainer?  Read it for yourself.

Surely I can't be the only person on the planet who thinks an eight month retainer is a weird amount of time?  And I can't be the only one who feels like they knew "something" was coming with this August retainer and the the "something" just happened to begin in September.  I do believe one might refer to that as an anticipatory maneuver.  The proverbial preemptive strike.  Having ones ducks all in a row.

Alas, and oh yes, AS usual, I digress big time ..... This has nothing to do with the point I want to make but that's the thing about those internet detours..... And, why the need for TWO PR firms on retainer.  Read into that however you like. Something stinks and it's not only that stupid perfume.

Where was I headed with my big fat going back on my word, how could you, liar liar pants on fire..... Ahh, yes....BECAUSE of those deaths, this is important.  Some of their blood is on Komen's hands.  (Cue the lawyers.... I'm feeling a lawsuit) Ok... let me rephrase.... I am of the opinion that the lack of research and the fact that Komen positioned itself to garner SO much money with its marketing and its ability to maintain worldwide recognition, they controlled the whole breast cancer gig.  And that control halted everything because the wrong research was being done... Lots of blood dripping from that ribbon.

I had a visual pop into my head and that was really all I wanted to share.... this should have been a two paragraph post.  I keep saying, "Komen is the middle man.  Donate directly."  I'm thinking some disco song came on the radio when these thoughts were in my head which is where this visual came into play.

I think most people know Studio 54.  Yes?  No?  Whatever.....This is what began unfolding in my funny little brain.  Back in the day... when crazy stuff went on... stuff like a white horse being brought into the club to surprise Bianca Jagger on her 27th birthday, a horse she later hopped on in her red Halston gown.... back in THOSE days, the nights people stood outside like loonies pleading to be chosen to be one of the ordinary people  who would walk through those doors and watch the spectacle that was Studio 54.

In my hypnotic trance, the people on that line were the researches and the facilities that fund the underservered women and the educators.... and they were all BEGGING Komen to choose them... "please give us some grant money to research this idea" ... "we are uninsured and we need financial assistance" ....  And there stands Komen, High and Mighty, holding the key to the door.  They kept far more on the wrong side of that red velvet rope.

The keys to the kingdom slipped through their fingers.  We need to maintain control of those keys and make sure that we fund our causes directly.  No more applying for grants and waiting for Komen to unclip that red velvet rope.  Take your money and send it to a local organization.  Send it to a research hospital.  Send it to the Dr Susan Love Research Foundation so the research can begin NOW.  I refuse to allow that fire to be extinguished.  I'm pouring the gasoline and tossing the match.  If we become complacent, we will remain stuck in the mud.  Or standing on the wrong side of the velvet rope.  For the next thirty years, as we have for the past thirty.  That's just damn stupid.  And, we AIN'T stupid.

Time for a stampede, folks.  We are in control.  The money is coming from OUR wallets.  Spend wisely.  There's no need to pay a Komen cover charge.  AND, there's no need to wait for Komen to unclip the red rope and make the decision about who gets in and who stays out.  Step right up to a worthy group whose goals are in line with your own beliefs.  It's time to get the blood off the ribbon and then it's time to toss the ribbon into the bonfire, too.

Wednesday, February 15, 2012

AWARENESS WITHOUT ACTION IS USELESS

The other day, I got an email from my mom.  One of her neighbors forwarded it to her, she forwarded it to me.  The young woman who initiated the email is a Stage IV breast cancer patient.  She has been on Doxil and she needs properly timed, appropriately dosed continuation of the medication, WITHOUT INTERRUPTION.

I will let Tiff speak for herself.  If I was pissed off yesterday about the presumption we are in control of whether or not we develop breast cancer, I can tell you I am positively IRATE about THIS.

When I began to blog, I stumbled over some information regarding the drug shortages and it was the topic of my blog on August 19.  Three months later, the shortages were front and center again and up went another blog on November 16.  I guess this is the running theme.  It reaches a bit of a fever pitch every three months?

Last week, I was preoccupied but I do recall seeing an impending gloom and doom headline about methotrexate.  I went back to those prior blogs posts to refresh my memory.  In this case, it didn't need refreshing.  It was as I remembered. Methotrexate and Fluorouracil.  Two of the three chemotherapy agents used in my CMF cocktail were on the shortage list six months ago and that is where they remain today.  Each of those drugs is used to treat several types of cancer.

Didn't I read that an executive order was signed with regard to this mess?  THAT question did require a google detour. While I was aware the order was signed, I was not aware of its contents.  You can read it for yourself, I'm just going to do that which I detest.  I'm pulling a soundbite.

"Public officials praised the White House for raising public awareness about the problem."

The executive order was signed on October 31.  There was a crisis of sufficient measure to trigger the issuance of this order.  I do not know what can or should be done to fix this problem.  I'm not looking for political commentary.

I see an ongoing theme.  Raising awareness without the immediate commencement of an actual PLAN to do something seems to render the awareness raising useless.  In some cases, I suppose an argument could be made that the awareness actually HURTS the situation.  When I hear something beginning to sound like a broken record, my brain shuts off and my ears no longer hear words.  Instead, I hear WAH WAH WAH.

Awareness didn't seem to do anything to avert this drug crisis and the onslaught of awareness most certainly has not brought us any closer to determining the cause of breast cancer.  I don't really know what the hell has been going on since we began raising awareness but ACTION is the answer.  Doing the RIGHT research is the answer.

I am sure many cancer patients who are presently in active treatment (and their loved ones) are terrified the medication they need may not be available in the necessary timeframe.  Had we taken ACTION to find the cause, never mind.... I know your eyes are doing the equivalent of WAH WAH WAH.  You already know my gig.

SOOOO?  Did you join yet?  "Liking" the Facebook page doesn't mean you joined.  If you didn't fill out THIS FORM, you aren't in the database. 


Tuesday, February 14, 2012

SENSITIVITY TRAINING 101

JEEZ.... I had every intention of doing some sappy Happy Valentine's Day post.  Instead, I'll follow the Al Capone version of Valentine's Day.  It's time for a breast cancer massacre.  If you recognize yourself in any of this, consider this a fair warning.  Next time, no warning will be issued.  I will simply let the dogs out to hunt you down......

Is it really necessary to have this conversation yet again?  A couple of months ago, I was seeking sensitivity training for the TSA over the implant pat down.  Now, there seems to be a constant and ever growing onslaught of articles (and tweets, too) stating ways we can PREVENT breast cancer from developing.  That article came to me via a tweet by Lani who blogs at Chemobabe! and was subsequently retweeted by Lisa Bonchek Adams.

It really is time for some sensitivity training and it's time for all the big frikken mouths who have all the answers to STOP making grand pronouncements about how we may "save ourselves" from breast cancer by employing a mess of lifestyle changes.  Frankly, this is insulting to every single one of us who was diagnosed with breast cancer and I find it particularly disgusting to read this when I think about those who have died or those who are living with metastatic disease.  In the wake of what happened in our community of bloggers and tweeps just one week ago, I'm a bit outraged.  Ok.... a lot.

NOTHING..... Let me repeat that for anyone who may be hard of hearing or for anyone who may have taken up residence in Fantasyland (which, by the way only exists in the simple-minded or within the Magic Kingdom that is Disney) or for the utterly and completely stupid or for the horribly insensitive....

NOTHING.... NOTHING..... NOTHING..... can prevent breast cancer.  NOTHING.  PERIOD.  THE END.  NOTHING.

Can we employ healthy lifestyles?  Absolutely.  By doing this, we are engaging in risk reducing activities.  Yes, ABSOLUTELY.  Risk reducing activities.....  Nothing more.  Nothing less.  Too many of us have done everything right.  Too many still developed breast cancer.  No known risk factors and employed every conceivable health suggestion.  And bam, "You have breast cancer."  This will continue as the status quo until it changes.  And it won't change until we do the right research.  I believe the words of Dr. Love in the trailer for Pink Ribbons Inc were, "We're missing something big."

For the record, I was NOT one of those "do everything right" people.  I didn't slather on the sunscreen in my younger days. I was always in pursuit of the Hawaiian Tropic look.  Did I drink a bit much in my younger days?  Yes, at times.  Not with any frequency, but yes, there were evenings I took it a bit over the top.  Hell, there have been times within the past few months I've taken that over the top.  Do I eat healthy foods?  Yes.  And sometimes, I eat JUNK, too.  Carrot juice.  Not so much.  I prefer water.  Exercise.  Yes.  And sometimes not as frequently or as vigorously as necessary to really count as "exercise."

We TRY.  That is the point.  We try to live healthy lifestyles.  Or we don't.  And regardless of which path we are on.... or, if like me, you are in between the two paths, any implication that my choices are able to PREVENT cancer, breast or otherwise, quite frankly are more examples of perpetrating some sort of urban myth.  It's another one of those effin soundbites.  Splash it in a headline for the masses and make those of us who live with this every single day of our lives feel like we are somehow to blame for our disease.  GET OFF THE FRIGGEN GRASSY KNOLL ALREADY.  Enough.  I truly have had enough.  I'm tired of listening to this bullshit and I'm equally tired of writing and rewriting and writing some more.... each and every time I see this hogwash printed, spoken, blogged, tweeted....

I am done with this portion of the program.  I intend on calling out ANYONE who uses the word prevent in the same sentence as breast cancer.  Every Time.  Until prevention means 100% guaranteed preventable, I don't want to hear it.

Feel free to cut & paste as necessary.... If you want to cut and paste this as a reply under an article rather than provide a link to this page, please let it be known it came from here.  Hell.  It's likely to cause some sort of moronic debate anyway... and I'll gladly step into the fray.  In other words, I'll take the bullet for ya.

On THAT cheery note, Happy V Day.... Hearts, Flowers and V for Victory.  Sappy Valentines..... despite what one might think based upon this vivid red blog background, not really my holiday.

Monday, February 13, 2012

AND IN THE END ......

This is really not going to mean much to anyone that doesn't understand The Backstory.  Oh those backstories.

Rachel was laid to rest this past weekend.  Several of our blogger buddies were in attendance.  The memorial service was streaming live.  I watched from my home on my computer screen.  I had to leave shortly after the second half began. Tears spilled from my eyes as I listened to what her family had to say.  Sometimes, laughing through the tears.

Sarah Horton opened the memorial with most beautiful thoughts explaining how she came to meet Rachel. They met in the blogosphere.  And they quickly became the closest of friends.  This past October, on what is designated as Metastatic Breast Cancer Awareness DAY in the midst of Pinktober, Rachel and Sarah let us share in their friendship.  Rachel wrote about Sarah.  Likewise, Sarah wrote about Rachel.

Don't even get me started on a path of ONE DAY being dedicated to raise awareness of WHY women die of breast cancer. ONE DAY?  Hell, in ten days, three people are gone from my life as a result of Metastatic Disease.

I just want to make a few observations about a couple of things that happened over the past week.  First, I was feeling really really really REALLY exceptionally horribly shitty last Monday.  At some point after learning about Rachel but before hearing about Susan, I found an email.  It was from Rachel.  It was over a week old.  "Let's Skype."  It was difficult for Rachel to type.  A Skype talk would be much easier and far more fun.  Seeing that email hours after she was gone destroyed me.  I was crushed.  I tried to put it out of my head.  On Saturday, it was in my face again.

Rachel's wake and memorial service took place in New Jersey.  It is a two hour drive from my home.  I wanted to go on Friday.  As the week progressed, I grew more and more weary.  My own backstories.  I was overcome by fatigue.  There was no way I could make the drive to Jersey.  I went to bed reasonably early on Friday night and still, I didn't awaken until noon on Saturday.  Within 30 minutes, I was on my laptop watching the stream.

Approximately 90 minutes into the memorial, I had to leave.  I was in my car, saddened.  I tend to get a bit weird in the car and I was thinking about everything, but in this moment, it was mostly about Rachel.  Firstly, I missed the Skype opportunity because I have over two-freakin-thousand emails.  (I'm reminded of a line in Sex and The City movie, "There was no better time I could think of to hire an assistant...." remembering that the hired assistant was played by Jennifer Hudson.... one more weird-ish thing.... keep reading.....)  Secondly, I had to leave the "memorial" shortly after Sarah began speaking in the second half of the service.  I was pretty irritated with myself and began doing this bargaining thing I tend to do hoping I could summon some weird-ish thing to enable me to stop beating myself up over all of my shortfalls.

I think I was having a bit of a conversation in my head with Rachel while I was driving.  I have no business doing anything other than giving the road my full attention of late, but still, my mind was on Rachel as I flipped through the radio stations. Suddenly, I heard the middle of a familiar song from Jefferson Airplane...... the song is called Volunteers of America and the line that was being sung as I hit that station?  "Got a revolution, got to revolution."  Like I said, I get weird with the car and the radio and when I need guidance, if a song comes on the radio that is so blatantly attached to the thoughts in my head.... well.... I GET Weird.  Having referred to the collective group as Rachel's Rebels in one of my posts from last week, the weight lifted.

Later that day, I thought about how happy I was to know that Sarah traveled all the way from Liverpool.  Gayle, Kathi and Stacey were there representing all of us which made me equally happy.  I began poking around all of the blogs.  You know how that goes, one blog and the comments lead to another blog and those comments to yet one more blog and suddenly four hours have passed and it's 3AM and I'm still reading.  I realized that the post I wrote for Gayle at her invitation had comments from both Rachel and Susan.  In some odd way, that comforted me.  It's more of my weird-ness.... like the radio thing.

Last night, I settled down to watch the Grammy's.  I'm not usually an award show whore.  However, with Whitney Houston passing away just one day prior, I simply had to watch the show.  In its entirety.  To see Bruce Springsteen open the show was a reminder of something Sarah said one day earlier about her visit to the states to stay with Rachel.  She mentioned that they visited the Stone Pony and sadly, Bruce wasn't there.  (If you have no knowledge of Bruce, Stone Pony is a "club" on the Jersey Shore......Springsteen started there and sometimes shows up there STILL, unannounced and impromptu and much to the obvious delight of anyone fortunate enough to be hanging out on one of those nights)

Still glued to the television, I watched that heart wrenching performance by Jennifer Hudson (told you to keep reading) singing in tribute to Whitney.  Complete sidebar and just one more odd thing?  The day before Whitney died, Jennifer was being interviewed and she was talking about how the most thrilling moment in her life was having Whitney Houston present her with her grammy award.  How Whitney inspired her.  One day later, Whitney is gone and Jennifer, who was not scheduled to perform was being asked to sing, "I Will Always Love You."  Talk about grace under pressure and keeping it together in the face of sheer heartbreak.  It was like what Sarah did on Saturday afternoon for Rachel.

This is all oddly connected in some other weird-ish radio-esque stupid way.  It's the way my brain zig zags and connects the dots..... What is the connection.....Why does the Grammy Award Show that aired last night have any significance to anything this Monday morning??

You see, while the show opened with a performance by Bruce Springsteen from Rach's neck of the woods in New Jersey, the show closed with a performance by Paul McCartney.  Sir Paul of Liverpool..... Sarah's neck of the woods.  And as the final notes were being played, Bruce Springsteen was back on the stage.  Both he and Paul McCartney strumming their guitars which they both soon lifted into the air as I listened to the final words.....

And in the end, the love you take is equal to the love you make......

Much love left this planet on Monday.  While our hearts may be broken, they are filled with that very same love.....

Yes, In the end, the love you take IS equal to the Love You Make.......

Friday, February 10, 2012

SHELL SHOCKED AND TONGUE TIED

Shell shocked: Mentally confused, upset or exhausted as a result of excessive stress.

Tongue tied: Deprived of speech or the power of distinct articulation

Source: Merriam-Webster (Online Version. May I direct your attention to the word exhausted... my normal preference is for the yellowing desktop version, too exhausted to go into my office to retrieve the book)

Two consecutive weeks of high intensity has left me shell shocked and tongue tied. Last week began with a funeral and by Friday the Rebel Tweeps and BitchBloggers were completely engaged in the Twit Storm. When I first got involved in blogging and then ventured into twitter, I got quite a lesson in The Pink Stink. I suspected there were many more irate women in the closet. When Komen fired the shot heard round the world, the chatter gained momentum and very quickly turned into a chain swinging lynch mob.

Throw in a Super Bowl. A great game. Especially if you live in these parts and Monday was off to a great start. Coming off a weekend high. And in an instant, the rug was pulled out from under me when I saw RIP. And thus began this week. Monday. First Rachel, hours later, Susan. Lives cut short because we don't really fund research for the breast cancer that actually KILLS women. No money for that.

Another woman died on Monday, too. Bet you didn't know that. And she SHOULD have been very famous. She was more accomplished than these celeb types we toss up on those pedestals. She was not part of the social media crowd but she was connected in that Kevin Bacon kind of degrees of separation thing. She was an astronaut. One of the few women to don a space suit, Janice Voss spent 49 days in space and was on five shuttle missions. She was 55. She died of breast cancer.

I'm no rocket scientist and as many might recall, I'm not a big fan of statistics, either. In this case, however, maybe someone at NASA can do a calculation and let me know what the odds would be that TWO NASA women would die of breast cancer on the same day. NASA is not exactly filled with women. An astronaut and an astrophysicist. I'm going with, five of us each had a better chance of hitting some mega lottery.....

I'm being a bit of a smart ass because this should not have happened. Period. I'm listening to sound bites ad nauseum about the "billions of dollars" provided to fund research and I'd like to know exactly what was being researched and by whom? I'm feeling like it was that e-Trade baby in a lab coat searching for clinical trials using an app and an iPad. I'm pissed off that I will never see another comment from Rachel or have Susan's compassion reaching out to touch me in a moment of fear.

I also have those back stories I mention every so often. They are reaching a level ONCE again where I'm beginning to feel as if someone is trying to push me down and keep me down. Shit can keep coming at me from every direction. I can deal with all of it. If I stared down cancer and I learned to live with that, there will no backing down. Suffice to say I have a spouse and kids. Make whatever backstory you want using that tidbit of info. Guarantee you won't even come remotely close.

Clearly, I've moved to the anger phase in the grief process. There will be no acceptance unless and until we have dispensed with breast cancer. I don't want to become one of those old cranky bitches so I'm really pushing this agenda. Hell, I want to be Betty White...... wise-cracking, making sexual innuendos and always laughing.......

I'm counting on continued wise cracks in my twitter stream that make me laugh despite the sadness. No one would have enjoyed this more than Rachel.... I believe this is what we call Snark With an EDGE (and there goes that GaGa thing again).... I'm being a Fearless Friend and on this Friday, I leave you with some rantings to laugh about. I'm working on appropriately pointed and wise ass-ish replies to a bunch of stuff..... When I'm less shell shocked and I can untie my tongue.

And some of the laughing will be through tears, but it's time to start incorporating a little laughter back into my life. Along with a few other distractions....... I'm feeling Girl's Night Out or An Overnight In Manhattan. If I can't climb out of this funk, you will find me on a balcony in New Orleans in little more than a week doing something with beads......Inappropriate at my age, but with the plastic surgeon's handiwork, I may just pull it off.

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.