SUPERPOWER? NO SO MUCH......

Superpowers? What jumps to my mind in the blink of an eye? Initially, the obvious choices. The ever popular selection of beauty pagaent contestants everywhere: world peace is high on the list. Perhaps higher still, a cure for every disease that plagues the human race. That would be in keeping with health writing activism. But those are unattainable. Come to think of it, my heart's desire is equally impossible.

As I sit in the waiting area of the hospital, my son on the side of the operating room door usually reserved for me, there can be only one superpower that even comes remotely close. Why should any mom, indeed any parent ever have to nurse a child from anything more than the common cold, an occasional ear infection or the flu? I would trade my soul to be the one with the lousy gall bladder.

I don't like the waiting family member role. Selfishly, I've come to enjoy knowing I will be asleep within a nanosecond of hearing those words, "Take a deep breath, I am going to start your IV." As I feel the warmth of the drugs hit my bloodstream, the hand wringers have already begun their ritual. As a mom, I want to have the power to switch roles. Not looking to put my kids into a bubble of "mom will take on every little ache, pain and heartbreak" but jeez, I'd like to take on The Big Stuff.

And so I sit, surrounded by many other hand wringers. Waiting. Hoping my name is the next one called. And I reflect. My mom did this hand wringing while I was the guest star no less than seven times during my breast cancer journey. She surely should have been the one bestowed with this very special power. I can still hear her words, feel her arms around me, tears streaming down both of our faces, "How I wish I could do this for you." She paved the way twenty years earlier and she would have walked the path again. If only she had the power.

THERE'S A MONTH FOR THAT

April.  Heath Activist Writer's Month.  HAWM.  WEGO Health calls it "ha-mik" which is syllabically easier than saying, or in my case remembering the letters or, for that matter, their order: HAWMC.  Heath Activist Writer's Month Challenge.

Since I made a commitment to myself to blog daily.... Monday through Friday Daily, when I learned that WEGO Health was having a writer's challenge, I thought: I'm definitely doing this.....  The month was April.  I made the commitment weeks ago.  Received a list of daily prompts so I could conceivably get a head start on some of the writing and here I am, a day late and a dollar short as that saying goes.

Joke's on me.  When did April sneak up on me?  I've been looking forward to turning the page on the month of March since I watched my backyard go from a splash of colorful flowers to the dreariness that is Winter in New York.  April is here and I didn't even NOTICE?  April Fool.  Fits nicely with the ongoing reference to myself as the Court Jester.

If you saw the end of the post dated April 1,  I was mostly on a rant about something.  My usual rant. Something is unjust. I'm beginning to feel a bit like Al Pacino.  And Justice For All.  "You're out of order, this whole court is out of order....."  I can see him shouting but I do not feel like googling this to get the quote in its entirety and then, do a further detour explaining how this all fits in with this part of me that feels as militant as Angela Davis.  I may not sound like Angela Davis.  But there are plenty of days I'm pretty sure I feel like she must have felt in her heyday.

I don't know if I fit the description of "Health Activist" or for that matter, if I qualify to be called "Writer," but I write and I see plenty of things that MUST be changed.  The title fits.  Loosely.  At best.

The folks at WEGO health issued this challenge with a list of prompts.  The first "prompt".... yesterday's prompt..... was about a time capsule.  I wanted my time capsule to be something like what happens in Bridges of Madison County.  Meryl Streep has died and her children discover her stolen weekend with Clint Eastwood.  Initially, they are angry as all hell and as they dig deeper, they realize she sacrificed her own happiness for the sake of those she loved.  Truly, the definition of selfless.  It was only after she made sure her husband was cared for and her children were on their own that she began to pursue her own path, hoping to find Clint Eastwood once again after all of those years.

Rather than use all of the imagery as I intended when I first saw the list of ideas, rather than invoke the emotions I might have felt a I gathered the items for my capsule, rather than describe the questions that might be on the minds of those who might open this thing, I did what the entire world of raising awareness does best.  I slapped a pink ribbon on everything and I called it a day.  At the tail end of the day.  Off to a rather lackluster start.  I am however, still ticked off at the "event" I discussed in my April 1 post even if the time capsule is little more than a footnote in the final paragraphs.

I'm better at Mondays.  Let the challenge begin.  Day Two.  A quote.  Pick one.  Something inspirational.  Positive or negative.  I have a little 5x4 inch pad.  Lilac.  Ring bound.  A purple gel ink pen clipped within the metal ring.  Whenever I hear something I like, I grab that little book.  If I can find it.  It's filled with some real gems.  My gems.  The wise words of Churchill, Eleanor and Deepak.  The smartass comments of Marilyn, Jill and Diane.  I can't choose.

Instead, I reflect and I begin to question negative inspiration.  Huh?  That sounds completely oxymoronic.  Completely challenged to explain what my brain does grasp, my choice is obvious.  It fits who I am, or more accurately, it fits with this person into whom I've morphed.  It simply must be a negative inspirational quotation.  Those "quotations" which I generally hear as a wise crack worthy of a (mental) body slam OR a (fantasy visual) fist bloodying the mouth of the person who is spewing such stupidity are the statements that inspire me most.  Why?  They are the catalyst for change.

Oh How I Love To Hear This:  "At Least You Got A Good Cancer."  I'm throwing down my own challenge.  I can see some of your eye rolls.  I hear your groans.  I know there is an entire contingent of you looking at the screen attempting to say, "Bullshit!"  And, I know there is another contingent, primarily members of The Pink Ribbon Club nodding their heads in agreement.  Yes, Toto, we are in the land of people DO say some of the dumbest things and from my seat, those of us diagnosed with breast cancer seem to be on the receiving end of the things at the very top of the Dumbest Thing List.

A Good Cancer.  That's my inspiration quotation.  Any sentence containing those words..... Phrase it however it rings nicely in your ears.  If you've ever heard those words, kindly raise your hands and step to the left.  The symbolic left.  The militant side of the room.  If you've ever uttered those words of comfort to someone whose world was shattered, step aside.  You are standing in the way of progress.  You are our oppressors.  I am sure your words are not malicious and I believe you are well-intentioned but....

I'm using my Day Two Prompt to set the record straight.  I am speaking for myself and only myself.  Feel free to add your own comments.  I'm up for a lively conversation and I'm always open for healthy debate so if you feel the need to qualify the statement about "good cancer," I'm all ears.  Most of my friends are good listeners, too.  That is, however, when we aren't bitch blogging about something.  Like, oh, um, let's say being told we "got a good cancer."

Jody, who founded and moderates the #BCSM tweet chat answered that statement in the words of her oncologist who told her "THE. ONLY. GOOD. CANCER. IS. NO. CANCER."  and thankyouverymuchforthat.  Here are some things to consider the next time you feel the need to speak those words.  Stop.  Breathe.  Try to remember even ONE of these points.  And then, if you still feel the need, be my guest and tell me all about my good cancer.

• That statement seems to allude to the fact that my "good cancer" is curable.  Correction:  Breast cancer is neither curable nor preventable.
• Your envy over my "boob job" discounts the fact that my "boob job" is a daily reminder of my "good cancer" diagnosis.  
• My "good cancer" thanks to early detection didn't buy me a Cancer Free Forever card.  Thirty percent of us with early diagnosis will become metastatic and that's incurable.  Nearly 100% of metastatic patients WILL die of their disease.  Some of us with this "good cancer" will fare better than others and live for many years.  The average time from metastatic diagnosis to death is rather short.  I'm not quoting a statistic at the risk of being incorrect.  I just know it's short and "just under three years" is what is popping into my head.
• My "good cancer" yielded excellent results SO FAR but those long term, late onset issues that are the foundation of this blog are real.  Please don't demean us further with those, "I didn't have chemo, what's my excuse" when we are struggling to untangle the mess in some of our brains.
• My "good cancer," five years post chemo, still scares me when, for example, I had a severe pain radiating from a very specific area in my lower back.  Yesterday.  It didn't "radiate" much beyond The Spot and when I finally gave in to the need for an opiate to manage the pain, I did a bout of mental gymnastics pleading to come up with some explanation.  A twisted yoga pose.  I lifted something that was just a bit too heavy.  When I came upon none, I spent the entire day in "It's Back Hell" .....  That never goes away.  Those thoughts. That's what a "good cancer" does to your mind. There's always a fear of that one rogue cell.  Attaching to something.  It's not a fear that cripples but it's something I deal with and I'm sure I'm not alone.  I KNOW I'm not alone.

I'm jumping off the Good Cancer Wagon.  NOW......Can I get the rest of you, and you know who you are, to please do the same?

SPEED DATING FOR PINK RIBBONS : IN A NUTSHELL OR A TIME CAPSULE

I'm still trying to figure this thing out.  I know I blogged about this event the end of February, but I am still trying to hunt down some press from a past event......  Speed dating for The Pink Ribbon.  After seeing Pink Ribbons Inc, this "event" is even more distressing today then when I first read about it.

Seriously?  I MUST call Bullshit on this one.  I'm a tad nauseated by the whole thing.

"Undivided attention of the top editors looking for PINK BREAST CANCER PRODUCTS ALL IN ONE DAY."

I have a few questions.

• The cost to participate is $2500.00.  Is any of THAT money being donated ANYWHERE or is this an event to take cause marketing and make money on marketing for cause marketing.  Kind of a double insult?
• All products must financially support breast cancer awareness, treatment or research.  To that, I'd like to ask, with my newly acquired understanding of the sheer stupidity of some (most? all?) of the this cause marketing and pinkwashing, how transparent must these organizations be in disclosing their financial support?  Are they maxing out at $10,000?  Are they promoting products containing possible carcinogens?  Are these products "acceptable" for this event?
• Is it REALLY necessary to use pink frying pans and a 1950's June Cleaver-ish pink apron to demonstrate product ideas.  For me, nothing highlights the reality of altered bodies and fried brains than pans in which to fry said brains and a pink apron to cover the mess.

I'm starting to get really really REALLY pissed off at the ever increasing ways people are finding to make money by raping the Pink Ribbon.  Women are dying.  Men, too.  Why is this okay?  I'd really like an answer.  I'd really like to see some outrage.  I can't be the only one who finds this exceptionally distasteful.  To whom might I write?  Which editors will be attending? What media outlets?  I'd like to be sure to let everyone know which organizations are continuing to help fuel this pink circus so we might boycott their magazines or TV shows or whatEVER.  I'm lacing up my pink boxing gloves for this one.  And then, I'm tossing the gloves into the time capsule.  It's insulting.

Only 18 BRANDS will be selected to participate.  Come early to assure your spot.  And again, may I remind the brains behind these operations.  We are NOT a brand.  We are not a marketable commodity.  We are women who had the misfortune of developing breast cancer through NO FAULT of our own.  And you are looking to profit because of our misfortune?  How about this:  Think Before You Pink.  That would be a great start.

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 forpink 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 pitchingexperience. 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.   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.

Register Now!

In keeping with a commitment I made to WEGO Health to post 30 entries in 30 days with the help of a list of prompts, the very first prompt is about a time capsule......  

My time capsule?  A box with covered with pink ribbons.  Inside the box?  My pink ribbon pepper spray, a pink handgun, a few other positively ludicrous items adorned with ribbons, a copy of a lawsuit For The Cure, every blog post written by Rachel Moro, a few of my favorite prior posts, a copy of Gayle Sulik's book Pink Ribbon Blues, the DVD of Pink Ribbons Inc, my mom's treatment records from 1987 and mine from 2006 (zero progress) and THIS blog post.

My fantasy?  When my great grandchildren open the capsule they are bewildered.  I will watch from another dimension as they say, "What are all these pink ribbons?"  and then, "Cancer?  What is CANCER?"  and finally, "What the hell was she so pissed off about?"

Dream until your dreams come true....... Or, more accurately, FIGHT for change and Be the reason those dreams come true.

PREVIVOR METAVIVOR SURVIVOR F*&%VIVOR

I am ending out the week with an adjusted version of something that I wrote in October.  It's part of my promise to be A Fearless Friend.  It's part of my commitment to make sure 40,000 lives are not buried beneath the pink ribbon.  It is the part of Pink Ribbons Inc that continues to creep into my thoughts at random times during the day.  It's because the three people whose lives I cherished most back in October when I picked up the cause have now died from breast cancer.  All three of them.  Within days, within hours of one another.

After the screening of the movie, there were girls who had questions about metastatic disease that I don't feel were properly addressed.  I will find out who they were.  One of them wore an MBCN T-shirt.  I will answer their questions.

Respectfully.  Properly.  Those of us who remain on the other side of that stage 4 line of demarcation owe it to those whose disease has crossed that line to BE their Fearless Friends.  To not be dismissive.  To listen.  This is how I felt on October 14th:

I take too much for granted.  Because I am an over informed font of (mostly) useless information, sometimes I am stunned.  Do you know that there is only one single day during the entire month of October, BREAST CANCER AWARENESS MONTH that is devoted strictly to raising awareness of Metastatic Breast Cancer? This was news to me.  Metastatic disease should be on the front burner.  Every day.  In every month.  Not a minute goes by, not ONE SINGLE MINUTE, that isn't tainted by a breast cancer death.  And this is worthy of one day shoved in the midst of Pink Madness?  I think not.

A show of hands?  We are all aware that cancer can spread outside of the area where it began?  Are we aware that a breast cancer patient whose disease has traveled outside the breast is still a BREAST CANCER patient?  If the cancer decides, for example, to attack the brain, it's NOT brain cancer.  It's breast cancer that has spread to the brain.  Likewise, if a patient with lung cancer has a similar spread to the brain, it's NOT brain cancer.  It's LUNG cancer that spread to the brain. 

Why is this important?  Quite simply, when cancer spreads, I generally hear things like, "First it was breast cancer, now she has lung cancer and bone cancer."  There was a tweet chat the other night and the topic was metastatic disease.  In the old days, we would simply say, "It spread."  Maybe we need to just get off the big words and go back to basics.  

While the pink banners are flying and the balloon arches are floating and the ribbons are pinned everywhere, MBC is pink, too.  It's the pink that is on the bottom of the pile.  It's buried.  These aren't the feel good stories.  These are the patients living in pain.  In fear.  And contrary to what some (ok ONE) have said, "THERE IS TOO MUCH PINK."

I'm sorry.  I don't like pink ribbons and I don't like Bald Barbies either.  Truthfully, I don't like Barbie at ALL as a representation of anything female.  How was a group of people able to get Mattel to produce this damn Bald Barbie and why can't we perform a similar uproar to get some corporation to symbolically burn the damn ribbon?  I'll tell you why. Breast cancer patients are expected to be the faces of hope.  The success stories.  Once the line is crossed, you are rapidly kicked out of The Club.    

And then, only in very hushed tones will most whisper to only their closest friends,

"I have never been so afraid of anything in my entire life. I don't want to die."**

These are words that were recently repeated to me because some (many?) MBC patients prefer to close out most of the outside world.

And, these are the words that were spoken by a few during that online chat on Monday night:

MBC is not a "type" of breast cancer. Coworker said "I never heard of MBC is it a rare disease?" It is incureable. Treatment is 4ever 

treatment is for the rest of our lives. I find it relentless and grueling. Many people ask me when treatment will be over?

One third of all breast cancer patients will become metastatic. Ignore us at your peril.****

I also want people to know that very little money is directed towards mets research and this has to change.

I've had people say when I say I've got metastatic breast cancer 'what does metastatic mean?' jaws drop when I explain

we learned this spring that only 3% of breast cancer research funds are for metastatic cancer research

... ultimately, people don't die of a tumor in a breast. We die after the cancer has spread,become metastatic - or from treatment.

It would really help if "The Media" would do justice to MBC. The stories need to be told well-not sappy or pinky...

Media likes stories w happy endings or that have possibilities. Possibs 4 mets = rare 

My energy, particularly after seeing Pink Ribbons Inc, is for my friend whose mets progressed at warp speed. She got the all clear.  The Stage 1, All Clear.  And a year later, It Spread.  After three months on meds to attempt to address what was happening in the bones, a rescan of the bones showed no change. Further testing showed mets in the lungs, liver and brain. In THREE months time, while on chemotherapy.  Every likely organ that breast cancer likes to go, it went.  Her words were those ** expressing her fear of dying.  Three months later, her fear was my heartbreak.  She was the first of the three who died.

The remark **** about ignoring at our peril?  Those words belong to Susan Niebur.  She was the last of the three who died.  She spoke the truth to the world using a graciousness I can only hope to achieve before I leave this planet.  

Surely one of those other lines is the somewhat toned down snark of Rachel Cheetham Moro.  She also died.  Rachel, who helped design The Toolkit for Breast Cancer Action.  Rachel, who would have been cheering and jeering if she were in that theater where she should have been.  Rachel, who should be here trading barbs with the twitter person who is SusanKomenGhost.

Billions of dollars and decades of research and we are no closer today than we were 25 years ago.  Unacceptable.  Those young women in the audience deserved a better answer.  They deserved to hear, "We are not going to tolerate the lack of funding for metastatic research.  We will fight KFC Pink Buckets.  We will fight perfumes containing carcinogens and most of all, we will fight for research funding that will help YOU."

On a related note:  METAvivor is presently moving into fourth place in the Pinkwell competition.  Are you voting?  Every day?  Up to three times-Twitter, Facebook and Email.  We have enough time to make it happen.  But we have to ACT.        

FULL REVIEW COMING SOON

I am exhausted and I'm heading for bed.

Here is the latest list of theaters and festivals where Pink Ribbons Inc. will be shown.  The list grows every day so check back frequently if there is presently no location in close proximity to your home.

The movie is powerful.  It is eye opening.  We frequently blog or chat about much of what is in the movie.  Who hates pink. Who thinks there can never be enough pink.  I felt my back go up when I heard someone use the word PREVENT.  Ok. Really.  I was on the aisle and close enough to the front of the small theater where I MIGHT have been inclined to punch a hole in the screen as that word was coming out of the mouth of someone.

It touches on every hot topic.  Where is the money going?  Why isn't there a more collaborative approach with regard to research?  How can we be suckered into buying things that have a ribbon slapped on them when the product itself contains known or suspected carcinogens.

Who is giving voice to the METAvivors?

Barbara Brenner is compelling.  Listening to her do the math on the Yoplait lids drew a laugh.  Watching one of the girls in the group of mets patients tearfully explain how she "did everything right" and couldn't grasp Stage IV, mets, incurable, drugs for life and my face was wet with tears.  Dr. Love explaining how we are still at slash, burn, poison after all these years as I was seated beside my mom was particularly poignant for me because I know she is telling an absolute truth as it applies to my life.  That broke my mom's heart.

For now, I have to put my head on the pillow and close my eyes.  The crowd, though small, was engaged.  The conversation was as lively as it was diverse.  And, apparently, I love holding a microphone.

Thanks again to Breast Cancer Action for trusting me to share their message.  More movie details forthcoming in the days ahead.  For now, I need sleep.  Desperately.

Oh, and that message I expected to see when I got into my car?  No such message.  The car was dead.  Completely dead.  No message, no light, no nothing.  Only utter panic at the realization my car was not working and if I couldn't get someone on my driveway in an hour or less, I was going to have a rough time getting a cab.  Serves me right for making a wise crack yesterday.  I'll never learn.

Back with more after I rest my weary head.

CLEARING A MESS SO WE CAN CLUTTER A LAB

Do you know what happens when you have over 5000 emails between two primary accounts?  First, it takes forever to clean the stuff up.  Second, IF you have chemobrain, you may read a rather important email, know you must respond or take some other sort of action, forget you saw the email, walk around with that nagging, "I know I'm forgetting something" feeling and blow a deadline or miss an opportunity.

Thankfully, I am beyond Mom's Taxi Days and parent teacher conferences.  I'm fairly certain my kids would have already been left stranded enough times for the school to notify Child Protective Services.  Missing the birthdays of my nieces and nephews until weeks have passed is quickly moving me down the Favorite Aunt Ladder.  Tracking appointments?  I've gotten that under control with my phone calendar.  MAKING the appointments?  Not so much.

Presently, my car is 500 miles overdue for service.  I've been getting warnings for the last 2,500 miles.  I could have driven to Miami and back.  Today, I got as far as pulling out the folder to get the phone number.  The folder is on my desk. Tomorrow when I start my car it will admonish me yet again.  Service Now 525 Miles Overdue.

The dishwasher just stopped working sometime last week.  Are you old enough to remember that Maytag guy who was always lonely in those commercials because Maytag appliances were just THAT dependable?  I suspect the chemobrain crowd may have contributed to his loneliness because there were a whole mess of people forgetting to make repair appointments.

I am supposed to see an oral surgeon.  This is kind of important.  I'm losing significant bone in my upper jaw, likely femara fallout.  That guy's number has been on my To Do list for many weeks.  When I need a sinus lift because I let this go for too long, I will have no one but myself to blame.

I want to schedule my pool opening NOW otherwise I can assure you, it will be August and I will be staring at a green cover instead of blue water.  Ditto the sprinkler guy.  Brown lawn and dead shrubs in lieu of lush lawn and a glorious garden.

Mind you, ALL of these appointments could have been made in under twenty minutes.  Phone in hand to make sure I am not creating a scheduling conflict nightmare, I would have had all of this out of my head and properly entered in my iCloud iCalendar across all of my apple devices.  Maybe tomorrow.  Hopefully tomorrow.  GOTTA BE tomorrow.

And then, there is that little matter of Income Tax Time.  I already have three corporations on extension but we do not put our personal return on extension.  What's today's date?  I'm painting myself into a corner with the April 15th thing. Actually, sweet serendipity.  The deadline is April 17th this year.  Don't trust me?  Google it.  The 15th falls on a Sunday which automatically makes the deadline the 16th.  The 16th is a holiday in DC (or somewhere federal....I'm not googling it... ok, I caved...).  It's Emancipation Day.  That's a bit of twisted irony or black humor or something.  Whatever.  I have a-HEM, tons of time.

No worries about the car dropping dead, the dishes piling up, my face collapsing, pissing off Uncle Sam.  Instead, I'm cleaning out my email box.  Deleting things, reading previously unread mail and getting distracted (and UPSET) as I read the series of emails between my sister and I.  These were from 2010 and it started with The Questionable Mammography, through the biopsies to her diagnosis.  And the tone changed entirely as she entered The Decision Making portion of the program.

I remember commiserating with my mom.  I remember being the voice of reason to keep my mom somewhat calm.  This was daughter number two.  It was breast cancer number four and my sister was "deciding."  Mom was worried sick and I wanted to kick her ass.  Instead, I maintained a sense of decorum and made sure she understood those statistics she was reading did NOT apply to her.  She was 42.  She had two first degree relatives with pre-menopausal invasive breast cancers before age 50.  And mom with a second primary twenty years after the first diagnosis.  Right on cue.  And she is deciding. And mom is beside herself.  And I'm lacing up the boxing gloves.  All's well that goes the way I WANTED.  Yes, I had a strong opinion about the course of treatment.  And yes, I shut my mouth until AFTER the decision was made.

There is a reason for this whole mess of nonsense sharing.  My sister's cancer is not nonsense.  My brown lawn blues? Nonsense.  (Bell Bottom Blues?  Definitely NOT nonsense.... Eric Clapton, Derek and the Dominoes.... one of my favorites of all time..... that was a definite chemobrain zig zag... brown lawn blues zigged me right into my mental juke box....)

However, in one of my short notes to my sister, I mentioned that I just saw the Pink KFC Bucket being advertised on television.  I told her I was so emotionally charged over the whole mess that the stupid commercial made me weepy. Ironic that I will be discussing Pink Ribbons Inc. this evening on behalf of Breast Cancer Action?  The Think Before You Pink "What the Cluck!?" campaign made it to Steven Colbert WITH a shout out to Barbara Brenner.

There WAS a reason I went on this story telling path of Cleaning Up My Email.  And it's important.  And it bothers me.  As I was reading and cleaning and strolling down memory lane, I happened upon an Army of Woman e-blast dated May 5, 2010. That is almost TWO YEARS AGO.  How is it that we have NOT filled this study?  The researcher is looking for 5000 women anywhere in the US OR Canada.  That's a pretty damn big pond from which to fish.  I mean seriously.  What is UP?  WHY it this still open on the Army of Women website.

This is EXHIBIT A.  A researcher with an idea.  AND money.  Still waiting some TWO YEARS later to actually CONDUCT the research.  Because he needs WOMEN.  Now do you see WHY The Army of Women is so important????  It doesn't get any clearer than this.  We are wasting time.  Precious time.

Here is the criteria and let's fill this thing already.  Enough of you either qualify or KNOW someone who qualifies.  Click the sign up button or click the send to a friend button.  Don't do NOTHING.  It's up to us. Are you In It To End It?

Were you diagnosed with invasive breast cancer at or before age 40?  It does NOT matter how old you are today.  Are you willing to have blood drawn for the researcher the next time you see your OWN doctor?  Willing to share your records with the researcher?  Then HOP to it already.  Don't make me have to lace up the boxing gloves.  Here's the email.  The email that was sent TWO YEARS AGO.  For a study that is still NOT filled.  How can we get these researchers to help us if we aren't willing to help them?  I was over 40.  So was my mom and so was my sister.  Some of my twitter friends were under 40.  To them I say, "Tag, You're It!"

Were You Diagnosed with Breast Cancer At Age 40 or Under? Let's Work Together to Find Out Why!

Dear AnneMarie, Why do young women get breast cancer? And why are they more likely than older women to get an aggressive form of the disease? Might genetics play a role? That's what a research team at the Washington University School of Medicine is trying to find out. If we can find out WHY some women might be more susceptible to getting breast cancer early, it could help women and doctors learn how to prevent it. If you were diagnosed with invasive breast cancer when you were 40 years old or younger, please read on and sign-up! If this study isn't a right fit for you, please pass this e-blast along to friends, family members, and any women you know who have been diagnosed with breast cancer. The research team needs to enroll thousands of women, and by passing this Call to Action along you will be spreading the word about a study that could help us learn why young women get breast cancer. PLEASE REMEMBER, if you don't fit the criteria for this study, there are MANY, MANY more upcoming studies that you will eventually be able to participate in. Please stay tuned and keep an eye out for the next one.

What's the study about? The purpose of the study is to learn what genetic factors may play a role in the development of breast cancer in young women. The researchers need to recruit 5,000 women who were diagnosed with invasive breast cancer when they were 40 years old or younger for this study. What's involved? If you choose to join the Breast Cancer Risk in Young Women Study, you will be asked to submit a blood sample, which can be drawn at your next doctor's appointment. Your doctor will ship the sample directly to the researchers. You will be sent a kit that includes shipping materials, the materials needed to draw your blood, and all of the documentation your doctor needs to draw and ship your blood to the research staff. There will be no cost to you to participate in this study, and you will not have to handle or ship your own blood. You will be asked to provide the researchers with information about your family history. You will also be asked to give them permission to obtain a copy of your cancer-related medical records. Who is conducting the study? Paul Goodfellow, PhD, at the Washington University School of Medicine in St. Louis, Missouri Where? United States and Canada Who can participate? You can join the Breast Cancer Risk in Young Women Study if you match ALL of these MAIN categories: • You were diagnosed with invasive breast cancer (stage I, II, III, or IV) when you were 40 years old or younger (You are eligible regardless of how old you are now.) There are no exclusions based on current stage of treatment, previous or current diagnosis or prior genetic testing. • You live in the United States or Canada The researcher may ask you additional questions to be sure that this study is a right fit for you. Yes, Sign Me UpNo ThanksRecruit a Friend Grow the Army of Women

PINK RIBBONS INC - NEW CITIES AND DATES

Tomorrow evening, I will have the opportunity to see the much anticipated Pink Ribbons Inc.  It may not be much anticipated by you, but it has been much anticipated by me.

I am not breaking any new ground with this audience when I say that the ribbon has got to go.  It's not that the ribbon has to go, but the ribbon has been twisted into a tangled mess.  It is a noose around the neck of breast cancer and it's not the noose that is going to see the disease eradicated.  It's the noose that has literally left us hanging.  Waiting.  Waiting.  And STILL waiting.  For something.  Anything that shows promise of real change.

It would be unfair to say we have learned nothing during these past decades.  Unfortunately, what we have learned hasn't really led us to any meaningful progress.  Last week, I had the good fortune to listen to Dr. Susan Love explain how much has changed in our understanding of the biology of breast cancer.  In her usual engaging style and wit, through the use of metaphors in such a masterful fashion, she can take post doctoral, dry material and show all of us how and why certain information is relevant.

Later that day, I was enrolled in a seminar to hear Dr. Larry Norton at Memorial Sloan Kettering speak about advances in breast cancer research.  I knew I would be hearing much of the same information but he too, is an engaging speaker.  He is witty.  He speaks a mile a minute (and I thought I spoke quickly----at least I do when my brain is firing on all cylinders). He captivates an audience.  His talk was more of a Q&A and it will be available on the MSKCC website when the videographers can properly edit some of the redundant questions.  Senseless to listen to three people ask the same question using different words.

My point?  Everything about that pink ribbon screams "awareness" and we no longer NEED awareness.  We need education. We need research.  We need people who are willing to open their mouths.  We need to be fearless and relentless in our insistence upon change.

We need to JOIN together.  On Long Island alone there have to be hundreds of organizations, each hosting their own fund raising events.  It has become one giant competition.  Whose event will draw the most celebrities?  Which event will be the most prestigious?  Where did that group come up with such a CLEVER idea?

Will this approach bring us beyond the cure?  I don't know.  I can appreciate each community raising funds to help women within their community.  I can appreciate each organization that raises funds for research to choose where they want to send those funds.  It beats donating to a "middle man" so they can put researchers through the wringer with grant applications and adhering to certain guidelines.  Nothing like placing a set of stringent rules on a brilliant mind.  Let's boggle the brilliant mind with a mess of bullshit paperwork so (s)he is forced to spend precious research time on NONSENSE.

No.  I don't like that approach.  I like the idea of putting the money right into the hands of a researcher and saying, "Go research."  As long as we aren't funding stupidity...... "Do the women who eat Corn Flakes fare better than those who eat Rice Krispies?"  THAT is stupidity.  It is incumbent upon every single person who donates one cent in the name of breast cancer to know where there money is being spent.

We must become wise consumers.  We will try 15 different shades of red lipstick to decide which one best suits our coloring.  Yet, if something has a pink ribbon displayed, we will throw our money at it without making sure a donation is being made.  There is NO regulation of that pink ribbon.  Anyone can slap a pink ribbon on their packaging.  It's for awareness.  And you just got suckered into thinking some of your money went somewhere.  And it did.  It went right into the coffers of the manufacturer of the product you just purchased.  And now, You Are Aware.  After all, the pink ribbon raised your awareness, right?  You didn't know all about breast cancer, right?

Hearing, "it's for breast cancer" is nothing more than hearing WAH WAH WAH....  We need to ask questions.  We need full transparency.  If we can't find a way to self regulate, we may watch even more of those pink dollars wasted on a watchdog organization.  We are smarter than that, aren't we?  We can step in and do our part.  We can cut the noose and take the necessary time to see to it that our charitable donations are being used wisely.

I suspect I will be fired up after I see this movie and I suspect I may not have much to say tomorrow night when I get home.  IF this same post is up on Thursday, it will be due to the fact that (hopefully) there was a packed house and oh yes, I was invited to distribute information on behalf of Breast Cancer Action at the screening.  I was invited to speak.  I am thrilled I was asked.

Breast Cancer Action was one of the two charities that Rachel endorsed before she died.  I can think of no better way to honor Rachel, to keep her voice alive.  I promised her.  In our last exchange of tweets one week before she died.  I PROMISED.  And I promised myself on behalf of every woman who has died and on behalf of every patient with mets and on behalf of every healthy woman, I will be noisy.  I will be rebellious.  Stop the progression of disease, save lives and prevent this from afflicting the next generation.  My friends deserve to live.  They deserve to die of something ELSE.

And the next generation, my daughter?  I can't have history repeat itself.  I can't walk my mom's path.  I can't have my heart shattered.  Mom will be in the theatre tomorrow night.  We will watch together and see how billions of dollars were wasted during the course of the nineteen years between her diagnosis and mine.  Progress?  What progress??  I still hear her tearful plea, "Is this the legacy I left to my daughters?"  Just hearing those words was more than enough shattering for me.  

If you don't have your toolkit, download it here.  Download it now.  Take action.  And, to the folks at Breast Cancer Action, thank you for giving me a chance to be the person I promised I would be:  A Fearless Friend.

IT'S NOT ABOUT THE SCARS

PLEASE NOTE:  IF YOU WANT TO JOIN THE CONVERSATION, YOU CAN DO SO ANONYMOUSLY.

Seated on one one side of the room, a 26 year old girl in active treatment.  Almost directly across the room, a woman who, three times in a span of two minutes practically shouted, "Can you please speak up? I'm hard of hearing."  A messy situation was playing out in front of my very eyes.  I could see how this was about to get very ugly.  Naturally, I was seated RIGHT BESIDE Mrs. Hard of Hearing.  I'm a magnet for this stuff.

I was a participant in a group seminar about body image and coping with the changes caused by cancer.  It was a lively discussion facilitated by a social worker.  I had no idea what to expect.  I was clueless as to how many people would show up and I was quite curious to see the group demographic.  Two best friends, one a survivor, the other just weeks post surgery visiting from out of state.  Another woman who lives in Israel and who was in NY visiting her father.... who just happened upon the group, and I might add, whose husband is a plastic surgeon, AND she will not let her husband see her scars.  Someone else who clearly had an agenda (maybe she was looking to start a group of her own?) who began to annoy me from the moment she opened her mouth.

The floor was open for comments and in a very Susan Boyle moment, the first words came from a woman who seemed to be of middle eastern descent, dressed very conservatively.... I mean, she wasn't in a burka or donning a scarf, but still, quite conservative and appeared to be in her mid 40's.  I'm a horrible judge when it comes to assessing the age of pretty much every person I ever meet.  I suspect that is because I have one of those funny mirrors and when I look at myself, I still see 30-something.  I digress.

Words begin to float across the room and I was hearing things I did NOT expect to come from this woman's mouth ...... Immediately, I felt like I was struck by a bolt of lightning.  I'm sure I leaned into the circle and I HOPE I had my Gaga poker face goin' on because this woman shocked me.  "I want a man and what man is ever going to want to have sex with me?"  Instantly, there was chatter all over the room.  It took all of 15 seconds for a group of over 30 women to start discussing how they yearn to have A Man in their lives.  I felt like I was in Sex and The City, The Cancer Version.

I DID participate, I wasn't sitting like a voyeur.... I DO have issues.... totally confident in clothing.... AND, apparently I have the ability to be happy with my appearance because I found photos of myself in a medical journal and before I realized it was ME, I was very impressed with that particular set of photographs.  Funny, when I looked at myself objectively, I really liked what I saw.  Then something jumped out at me and I began to take a closer look at the photos, realized they were of me and immediately, I was critical of every mark.  I did share that with the women in the group.

Because of the size of the group and the time constraints, I chose to listen after I shared my own experience.  As I listened, I began to realize that every single woman in that circle was beating herself up over her appearance.  Hearing the same feeling expressed a dozen different ways and I began to look through a different prism.  It began to upset me.  I wanted to shake these women.  I wanted to steal a bit from Martin Luther King.  I wanted to shout, "It is NOT about our scars. It IS about the content of our character, the kindness in our hearts, the purity of our souls and plenty of other things. We are not defined by our scars."

It was quite clear to me.  Why would any woman want to be intimately involved with anyone who made an issue of those scars?  It was so easy for me to step outside of myself and have such clarity.  I believed it.  I felt it deep within me.

Those feelings were solidified when Mrs. Hard of Hearing began to speak and she was far from being the source of any trouble as I feared.  Instead, she charmed all of us.  At 69 years old and living with her mate, she explained how she lost her hearing and how, despite living for decades with the same man, she too had issues.  Her wit had me grinning and her wisdom was priceless.

The scars don't matter.  Silicone and tattoos don't mean a thing.  Right up until I rejoined my body and there I was, in that exact same emotional place with every other woman in that room.  I've come far, just not far enough.

WHY NOT ADD INSULT TO INJURY ??

The other day, my friend Nancy, who blogs at Nancy's Point shared her experience with TSA and those body scanners.

In the comments section, Katherine who blogs at ihatebreastcancer shared her story.

I had my own "thing" in November at Logan Airport in Boston.

I can not WAIT for Stacey to return from California to hear her story.  The anticipation of her trip with her dad that she shared on her blog Bringing Up Goliath makes me laugh and I suspect every time I hear the word "pocketknife" (and I am talking about for the REST OF MY LIFE) I am going to laugh and people are going to think I've lost my mind.

I hope you will read through all the comments on Nancy's blog to get the full flavor of what some of us have experienced.

And then, you can read about some models of these scanners and how they are now banned in Europe because there is a concern about the AHEM.... cancer risk.  Indeed, in this article the following is noted:

"Fears about the health risks were raised in the U.S. as far back as 1998 when the machine known as the Secure 1000 was evaluated by a panel of radiation safety experts brought together by the Food and Drug Administration.
They all expressed concerns about the machine because it violated a longstanding principle that humans should not be X-rayed unless there is a medical purpose."

And if you REALLY want to be amused at this whole body scanner thing, there is a pretty gaping loophole as noted earlier this month in a news article.  Don't you just love that it is a BLOGGER who exposed the loophole and says he can get ANYTHING through those TSA scanners.

You know the way a great computer hacker (usually a 15 year old boy working from his bedroom-I know, I KNOW-I'm "hacker profiling" but prove me wrong) breaks into some super duper, top secret computer.... and we all read about how he is being "punished." And we all nod knowingly and snicker a bit since we realize this kid was just offered a LIFETIME position with the CIA for mega bucks.  Pay Dirt.

Maybe WE, the breast-bitch-bloggers (try saying that three times fast, hell, I can't even REMEMBER the order of the words...)  but, perhaps we should consider hiring Jonathan Corbett to find a way to get the TSA off our backs......or more accurately out of our blouses.

First we have cancer, then we lose body parts, then we get put into scanners that increase our risk for cancer, setting off the need for the "pat down" (and I REALLY would love to see what my body looked like on that screen)..... and now, someone found a way to get anything through those scanners????  And, not for nothing?  But any form of the word SCAN is traumatizing enough for some of us..... Just sayin' .....

I just had to get that off my chest because I'd really like the TSA to get off my back..... AND out of my blouse.

NO MORE STAGE 4 ~ STAGE 5 = NOT ALIVE

In keeping with my promise to be a Fearless Friend, I am reblogging an entry from the MBCN Buzz Blog.  The Metastatic Breast Cancer Network.  I had this blog planned because I think the message is important.  And then, it became personal again.

Last evening, I was at an event on behalf of Army of Women.  On the way home, I received a text message from a dear friend.  Her sister has a recurrence and it’s likely NOT local.  In other words, metastatic.  I am sickened over this.  We really MUST change the conversation and we MUST get the right research funded and get the studies filled.

Times are tough, finances are tight everywhere but one thing we can do each day is cast our votes for METAvivor at The Pink Well.  Each Day.  Every Day. While the reblog below is from MBCN which is a different organization, they are not in the Pink Well "contest" ....  And I am sure they would support all votes going to METAvivor.  They fund research.  

Coincidentally, the Monday night tweet chat was about Metastatic Disease.  The chat is referenced in the comments so I am providing a link.  OR, if you are not a twitter-er..and you would like to see what a tweet chat looks like, here is the link: BCSM Chat March 19


Metastatic cancer is the cancer that kills.  The numbers remain unchanged despite decades of "research."  Metastatic patients are "inconvenient."  They taint the pink ribbon and its symbolism of ummm, I'm not sure what?  Hope?  Victory? Surviving thanks to the same barbaric slash, burn, poison treatment that's been around forEVER.  We've gotten better meds to control the side effects and we've perfected surgical techniques.  


We've come to accept Detect and Fix.  Why is this okay?  Why aren't we screaming that we are NOT happy.  That we have SO far to travel.  Early detection so we can make horrible choices like amputating body parts, poisoning our bodies, ceasing hormone production so we can age rapidly inside and out?  NO.  This is not okay with me.  Enough is enough. 


How about, PREVENT and toss all the detection tools into a junk heap.  Surely, our sisters with mets feel like they are as insignificant as that pile of junk.  That has to change.  WE have to change it.  WE can't be thrilled about our own good fortune-existence in the Land of NED while others are waiting for the next big thing... the thing that will stop the progression of their cancers, that will eradicate what is left in their bodies, that will save their lives.


Do you remember that commercial with Lynn Redgrave?  "I want to die from eating too much chocolate, I want to die from........ but I REFUSE to die from breast cancer."  Diagnosed at 60, dead at 67.  And it wasn't the chocolate.  Research, Research, the RIGHT Research.


And now, the blog as it appears on the MBCN website:




I am so tired of celebrities putting a happy face on breast cancer.

A Letter to the Editor of US magazine:


It is wonderful that Guliana Rancic has a positive, uplifting story to tell.   But unfortunately for us, it isn’t all pretty pink ribbons and cures. The celebrities that fight breast cancer and win are the public face of this disease. We need a platform to educate people about the progress that has not been made in finding a cure.

A lump in the breast does not kill anyone. When breast cancer cells travel or metastasize to another part of the body—usually bone, liver, lungs or brain—it is incurable. Those of us with metastatic breast cancer aren’t and will never be the survivors. The cure has eluded us.

Much has been done in the areas of prevention and early detection and that is wonderful. It provides women with more choices in their treatment. Although people think we have come a long way, 40,000 people will die of this disease this year.–just as many as in the year 1995. Yet, less than 5% of research funds go towards metastatic breast cancer.


Many breast cancer organizations don’t recognize those of us who are living with stage IV breast cancer – they serve the ‘survivors’. We are scary to them and we are pushed into the shadows.
We need government and private research funds to find treatments to extend our lives. We need for everyone, including the breast cancer community, to be aware of us.


The Metastatic Breast Cancer Network, mbcn.org, is made up of all metastatic women. We are all volunteers and are unpaid, and we are passionate about helping each other and advocating for our disease. We are desperate for our story to be told.


Deb Tincher
Hamilton, Ohio
MBCN Board member

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