IN YOUR GROCER'S FREEZER, A FOLLOW UP

Yesterday, I stopped in the supermarket on my way home.  As if on cue, I walked right into this sign (glance quickly and then read on):

Nothing against the apple growers in NYS and the American Cancer Society is a wonderful organization, but WHY the pink ribbons.  This campaign is not for breast cancer, it's for cancer in general.  Pink ribbons equate to instant recognition.  I am skeptical of the wording, too.  HELP BEAT CANCER.  The word "BEAT" may have been a very deliberate choice given the fact that the sign is pink, the ribbons are pink and every letter in the word is also in the word breast.  Our eyes DO play tricks on us and I did, for a quick moment equate the apples with another breast cancer gig.

I WILL give them credit for making it clear they are donating $25,000.  Lots of credit since that is very prominent in the sign.  But, again, where is the money going.  "Fund cancer research and programs" doesn't say much.  In fact, it doesn't say anything. I don't even know how to make an inquiry.  I suppose I could try the American Cancer Society.

Bottom line, this doesn't really matter to me.  I wasn't in the store for apples and IF I were, I would have bought the apples without giving it a second thought.  Because I needed apples, NOT because of a ribbon.

This item, however, I DID purchase:

I just love the way the cheese is made to look like a runner. And why is it presumed that we are all running in some sort of thing?  When my friend (the one who died in January) was first diagnosed, we went out to dinner so she could talk and I could LISTEN.  Hand hold.  Maybe help her understand how to be an empowered patient.  I think we were still in a semi-embrace when she asked me (only half joking), "What does this mean, am I supposed to be wearing a pink baseball cap, should I be signing up to run in races, do I really NEED to run in those races?"  I don't think I will ever forget those words. I can still see the expression on her face.  I can tell you exactly where we were standing as those words were spoken.   She is now gone.  In under two years.  Those words haunt me.  The ribbon and the races did nothing for her.  She is one of the 40,000.  And frankly, that sucks.

Today, however, the cheese was a necessity and if there were another comparable product on the shelf sans ribbon, I can assure you, this particular package of cheese would not be in my fridge.  However, I needed to get some low fat cheese in the house.  I was in the grocery store with a list of acceptable foods provided by the doctor (this due to my son's surgical snafu).  Since the list is quite limited, I tried to purchase as many items as I could find.  The kid needs a bit of variety. Seeing the package, knowing what was up on this blog..... I stood there shaking my head.  I'm pretty sure anyone in the dairy aisle was looking at me ready to call those guys with the funny jackets.

Take note of the message on the back of the package:  "A portion of each purchase.....will be used to support breast cancer initiatives."  I don't have a crystal ball.  Do you?  Can you determine from that phrase what "portion" will be used? And what does the word "used" even mean.  Is there a reason it doesn't say "donated?"  I'd like some clarification on that phrase about supporting breast cancer initiatives.

This type of ambiguity is precisely what I was alluding to in yesterday's blog.  And this is what we should be expecting to see.... at the bare minimum..... this is what that message would look like if the product was being marketed with a decent level of transparency:

"Five percent of net proceeds to a maximum of 100k will be donated to Army of Women."

Same number of words (almost), VASTLY different message and my own hypotheticals.  If the wording on the package isn't in plain, transparent English, I'd suggest, unless the purchase is a necessity, don't buy it thinking you are doing something that it going to make a difference.  Buy it because you need it. And because there isn't a suitable alternative.  The only way this is going to change is if WE stop opening our wallets.

There is a reason for the ambiguity.  You can take that to the bank.  And deposit the money you saved on meaningless pink ribbon products into an account so you can send your check directly to a charity of your choice.  Yes, folks, it really IS that simple.  If enough of us stand shoulder to shoulder on this, we WILL make a difference and things WILL change.

I swear I'm getting off this soapbox.  For the time being.  However, my grocery outing was oddly coincidental, impeccably timed and is a perfect example of what I was trying to explain yesterday.  In other words, there was NO WAY this wasn't getting posted.

Sometimes, a picture is worth a thousand (or three thousand) words.  Questions?  Concerns?  I'm a moron?  Comment away.  I can take it.....  And I can dish it out, too.

FOR THE RECORD ...... I'M **STILL** PISSED OFF .... JUST SAYIN' ----------

I selected this post to be featured on my blog’s page at Breast Cancer Blogs.

Little more than a week ago, I was privileged to attend a screening of Pink Ribbons Inc.  It was my honor to speak on behalf of Breast Cancer Action.  It is no surprise to anyone who reads this blog that I am not happy with the status quo.  As last October approached, I was educated about Pink Ribbon Culture by some of the smartest women with whom I have ever communicated.  I joined the ranks of the disillusioned.

In the movie, we learn that the pink ribbon was not the genius of Estee Lauder or Komen or Avon.  It was a simple idea of a woman who was paying tribute to lost loved ones.  When she refused to sell her salmon ribbon, the color was changed and that's where the story begins.  The ribbon raised awareness.  The ribbon educated women about the necessity of mammography and early detection.  And then, the ribbon was "hijacked."  I can't steal someone else's genius observation and the word "hijacked" came from a tweet by the good folks at Breast Cancer Action.  Progress slowed to a snail's pace. Little has changed since we made those first great strides.

I do not hate the pink ribbon.  I supported that ribbon.  Blindly.  I do not consider myself a stupid consumer.  I know how to properly vet organizations before donating money.  There is a problem with the vetting process in the pink ribbon culture.  It's not all about Charity Navigator or Guidestar awarding its highest rating.  Somehow, this goes much deeper.  I despise the fact that I was duped.  I can't blame anyone but myself.  I CAN thank people like Gayle Sulik and the late Rachel Cheetham Moro for shining a light on the mess.  And, I can share what I've learned.

The pink ribbon is NOT regulated.  Awareness? Are we all aware, for example, that anyone can slap a pink ribbon on a product and never donate one penny to any organization?  That's a fact.  The ribbon is put on the packaging and in the fine print, it will say something like "supporting breast cancer awareness."  Other products donate a minuscule portion of the net proceeds (literally one cent in some cases).

With plenty of other products, the donation is capped once a certain amount of money is raised.  In simple chemobrain terms:  Ten dollars from this widget is being sent to Breast Cancer Charity.  The fine print?  Maximum contribution of $100.00 will be made by Smart Corporation to Breast Cancer Charity.  Thousands of widgets are produced with the pink ribbon.  After the first ten are sold, SmartAss Inc keeps all of the money.  No more donation to Breast Cancer Charity.

The technical name?  Cause marketing.  THIS PISSES ME OFF.  And it PISSES ME OFF because WE should be smarter.  We should be savvy consumers.  Instead, we are The Brand.  We are marketable commodities.  We are profit margins.  OUR illnesses add to someone else's bottom line.

But, many of us do not know this.  I didn't.  And now I do.  And I open my mouth because if someone is going to slap a pink ribbon on something, we should demand full and complete transparency.  The answers to three key questions should be readily available.

• How much money from this purchase is being donated to a charitable organization (and is there a cap)?
• What organization is receiving the donation?
• How does that organization spend their donor dollars? (Lumping a mess of stuff under the heading of "programs" is NOT an acceptable explanation for me, either.  I want details)

We have strayed far.  We buy anything in the name of The Cause.  The pink ribbon is a tangled mess.  It took twenty five years to create this mess and it is not going to change overnight.  Those of us who ARE aware should not be standing on the sidelines and watch as others (often unknowingly) continue to buy into this pervasive pink culture.  If we are not part of the solution, we are part of the problem.

On Monday, I offended someone with my words.  It started with an anonymous comment:  "OMG get a life lady."  I thought my response was polite and honest and worded quite kindly.  I don't want another 25 years to pass with the same lack of progress.  Meaningful progress would be a great start.  My response apparently opened the door for further commentary by a nameless person on this blog.

Admonishing me to "get a life" wasn't enough.  I received a rather long response to my disappointment over the lack of meaningful progress and over my concern for my daughter.  It felt rather mean-spirited and some of my blog buddies jumped to my defense.  (And thank you, each and every one of you who left some words of encouragement...... )  One of them advised me to just step aside. I did.  But I'm not the type to sit with my mouth shut for too long when I'm attacked personally.

The comment became personal when I read phrases directed solely at me: "take a breath," "stop the negativity," "focus on the positive," "stop being so pissed off," and best of all, "accept this as a fact of life."  The words are a bit strong and clearly there is a sense of urgency, a deep need to hang on to that ribbon for dear life while 40,000 women are dying each year, every year.  Their deaths, in my opinion, are the direct result of the grip on that ribbon.

I don't take direction from anyone.  There isn't a soul on the planet who is going to tell me to stop doing anything.  Ever.  If my actions are coming from a place of truly understanding an issue and my actions are an attempt to make the slightest difference.... if my words enlighten just ONE person, that's good enough for me.  In no particular order, what follows are my own opinions and feelings about some of what was expressed.  The tone directed at me is quite authoritative, accusatory, demeaning and/or defensive.  I hope to refrain from doing the same in expressing my feelings.

While I listen with an open mind to all opinions, I doubt the person who left the comment has ever so much as given a glance to any other points of view considering the tone and tenor of the remarks.  And again, I call bullshit on the whole thing.  Yes, the purpose of the pink ribbon has long been achieved.  It has also alienated the breast cancer patients from the cancer community at large.  Those with other types of cancer are resentful.  I've heard that resentment expressed time and again in a number of different forums, across several platforms, from many different people.  I listen when others speak.  I empathize.  And, I happen to agree with their sentiment.  They are not wrong.

Why do we care if others are capitalizing on our disease?  Frankly, I don't care what corporations are doing.  My goal is to make noise and make sure my position is clear.  I resent anyone capitalizing on ME.  On my cancer diagnosis.  On my altered body.  On the emotional toll that accompanies a cancer diagnosis.  I RESENT it.  And I don't have to sit in silence.  I would hope those who buy pink ribbon products would consider getting answers to those three questions I mentioned earlier.

I too have better things to worry about and bigger problems to solve.  For starters, I am bothered by the billions of dollars being thrown at a situation as we continue to accept what I would call on the street, "piss poor results."  It's called throwing good money after bad.  Or bad money after good.  Or more money for nothing.  Women are dying.  Personal friends.  They are "the problems" that I'd like to solve.  The fact that my daughter is a previvor, not because of BRCA status, but because of a strong enough "history".... another problem I'd like to solve.  I'd like to see research being done to SOLVE the problem of breast cancer.  To prevent the disease.

I am not interested in the opinion of anyone who is telling me I should "take a deep breath" and I "must accept that money comes from business - whether we like it or not."  Survival of any business in a capitalistic society is consumer driven.  WE are the consumers.  Ergo, if we do not spend our money on products that are doing little or nothing to stop the breast cancer pandemic, those predator businesses can no longer profit from MY disease.

All the energy I spend fighting is bad for "our cause."  This is not MY cause.  My cause is research.  My cause is prevention. My cause is stopping the spread of disease. My cause is understanding why 20% of early breast cancers WILL recur within the first TEN years. My cause is figuring out how to STOP that.  The pink ribbon is not my cause.  Negativity, yes. Resentment, absolutely.  Did your mother stand beside you, crying, when you were told, "you have invasive breast cancer." ?????  I don't know who felt worse.  I think she did.  I should just accept this?  No, I will not accept any of it.  I do not want to be in that situation with my own daughter.

Stop the negativity and focus on positive issues?  Stop being so pissed off and accept this as a fact of life?  There is nothing positive about the status of cancer research in general.  It's been forty years since the "war on cancer" was declared. Damn straight I am pissed off and NO, I will not accept this as a fact of life because, quite frankly, it's bullshit.  A fact of life?  To refer to the pink ribbon as a fact of life is offensive on more levels than I can possibly express.  

Slavery was a fact of life until people began to make noise.  Women not having the right to vote was a fact of life less than one hundred years ago in this land of the free UNTIL women began to make noise.  To those of us who have been burned to our core by this disease, watching loved ones die, watching the quality of the lives of others so drastically altered, having to make choices to "slash, burn and poison" which are the exact same choices we had when the Pink Ribbon came along to create such awareness, we are choosing to make noise because NO, we do not accept this as a fact of life.  I can only speak for myself when I say that I will NEVER accept this as a fact of life.  At least not in its present direction.

Oh, as for explaining why this is such a horrible event before I start ranting?  I didn't think an explanation was necessary. The ad speaks for itself.  Cause marketing to the cause marketers?  How many levels of people need to make money before someone steps in and says, ENOUGH.  I've had enough.  My friends have had enough.  MANY of us have had enough.  I am not attacking an organization or a person although there are plenty from which to choose.  I'm just trying to raise awareness.  The right kind of awareness.  And it IS just that simple.

To summarize, do not tell me to what I must and must not accept.  Do not tell me to stop being pissed off.  Complacency got us here.  Pissed off is the way out.  Do NOT imply on any level that this is "our cause"  simply because I am a woman with breast cancer.  I should just follow the masses like a lamb to a slaughter house.  No thank you.  The noise is making for Bad Press?  Seriously??  The truth stands on its own merit.  If that's bad press, too damn bad.

We, those of us who have looked beyond the ribbon, tried asking nicely. We tried to dispel the myths and expose the truth. Unvarnished. Uncut. Unspun. We were ignored.  We are accused of being miscreants.  We played nice and the other side continued to play dirty.  Twist words to suit "the cause," skew statistics to bolster "the cause."  Unfortunately, there would be no dialogue.  Instead of working together for "the cause," we were shunned.  Ironic, don't you think?  I mean really, WE are The Cause.  Without US, there is No Cause.  And We are Shunned.  Disgraceful is a more appropriate description.

I didn't start from a position of being brash and brazen.  I didn't go from zero to pissed off.  I sat on the sidelines.  I watched from a distance.  I realized things were getting worse.  I saw how trying to work toward some sort of resolution like reasonable, respectful adults didn't move us one inch closer.  I have tons of patience.  I will try every conceivable approach when there are oppositional points of view.  I do NOT have a short fuse.  A simple course correction might resolve this entire dust up.  First, however, both sides have to be heard.

Being ignored constantly and continuously finally got to me.  And I got "pissed off."  And, I will stop being "pissed off" when others simply acknowledge the mere existence of some impropriety.  That would be a great place to start.  That could bring some effective and meaningful change.  Everyone wins.  How is that so hard to understand?  Boggles my mind.  And, pisses me off.....

HAIKU ?? NO CLUE ....

Fair warning:  I don't haiku.  Do you?  If you do, perhaps you should check one of the others who is participating in the WEGO writing challenge.  This requires too much thought for a chemobrain.  First retain a thought.  Then, count syllables? Then, connect a third phrase to the already forgotten thought because I was too busy counting.  It could be fun.  If I had some poetic skill for starters and a working "working memory" for enders.

I will take a stab, at writing haiku for you.  First, I'll start counting.

My friends are dying.  I am sad, I am upset.  Only one fix: research.

That pink ribbon sucks. Symbolic of no progress.  Pink must fade to black.

I hate breast cancer. Especially the mets kind. Fearless friends force change.

I'd know what to do.  If I only had a brain, not fried by chemo.

I love my body.  My scars will not define me.  They are part of me.

I'm a bitch blogger.  Don't tell me I should calm down.  Have balls, sign your name.

Think before you pink. Time for us to make a stink.  Burn the ribbon now.

THE SHOE SWITCH AKA CAREGIVING

Today's Wego Health Writer's Challenge post is making is in just under the wire.  With good cause.  Since Monday evening, the shoe has been on the other foot.  Some of you already know my son had surgery on Tuesday.

In a complete violation of HIPAA rules and regulations, I am choosing to share.  Exactly eighteen months ago, almost to the day, the shoe was on my foot.  I had surgery scheduled on October 1.  He came here to spend the night before.  He was in charge.  He was the driver, mom was shotgun.  Technically, in the car, I was shotgun but I think you know what I mean. He would provide all necessary of updates to concerned family members.  Mass email notifications all pre-set.  He stepped up and stepped in as my caregiver for the hospital portion of the program.  Mom took over when I was discharged.  He was awesome.  I stayed drugged.  I had the easy role.  Despite the pain.  Definitely, the easy role.

Monday evening, my son was here again.  The night before surgery.  Clear liquid day as instructed for many laproscopic operations.  On Monday night, his shoe was on my foot.  I was in unchartered waters.  For the past six years, it's been all about me.  I was the one who was checking in at the surgical reception area.  I was the one whose name was called to change out of my street clothes.  I was the one who emerged, in surgical scrubs, wristband securely fastened.

On Tuesday, I was waiting for the hand off.  The plastic bag containing his belongings that I would hold until he was assigned to a room.  I'm sure this process was no more than ten minutes.  It felt like three hours.  I don't like the shoe on the other foot.  I was a nervous wreck despite the fact that the surgery was a "no big deal" thing.  It was still anesthesia and his body would be invaded by surgical instruments.  The hospital was very busy.  The surgeon was delayed.  We arrived at 11AM for a 12:30 date in the OR.  At 5PM, they wheeled him out of the "holding area" to The Doors.  I stood on one side after kissing him one last time.... at the suggestion of the anesthesiologist.... "Mom, one quick hug til you see him in PACU?"  The anesthesiologist definitely has kids.

I listened to him spell his name a dozen times.  "Date of birth, please?" and then,  "What are you having done today?"  I listened to no less than five nurses describe what was going to happen once he was brought into the operating room.  While his surgery was not at the same hospital where I've been a frequent flier, coincidentally, I DID have surgery at "my son's hospital" to have a neuroma removed from my foot.  My surgery was scheduled well in advance of my annual mammography and the shit hit the fan the day before my surgery.  Literally.  My girlfriend took me from my foot surgery, to the radiologist to pick up the images and then, to Sloan Kettering to have the films reviewed by their radiologist.  The point?  I was familiar with the procedures in this hospital.  Their protocol is a bit different and I'm glad I REMEMBERED. I'm sure I would have been questioning EVERY single thing with a critical eye.

I headed straight to the office to arrange for a night aide.  His surgery was too late and I didn't want him to wait if he needed help getting up or if he was in pain, I didn't want him to wait (duh, morphine pump).  The night shift nurses are almost always working short staffed.  The woman in the office looked at his records and gave me his room number.  Told me it was not necessary to get an aide.  His private room was right outside an auxiliary nursing station that was staffed with two RN's.  He lucked out with the room assignment.  I jumped on the invitation to go see for myself.  She was right. He would be fine.

Ultimately, I hit the lobby to wait.... for an eternity..... for the surgeon to call me and give me the all clear.  I don't like the shoe on the other foot.  Even though an eternity was actually about an hour because of the time I killed moving my car from the lot where we checked in to the lot where I would be exiting later that night.  I killed time chatting with the pleasant woman who insisted I didn't need an aide.  I went up to his room.  I contacted his dad.  (Aside from a couple of people in his office, he didn't want to tell anyone about this "no big deal" surgery)  I meandered the unfamiliar halls. THEN, I settled myself in and staked out my very own lot of lobby real estate.

Thankfully, a patient from the psych ward was trying to make a quick get away.  His appearance (think Doc in Back to the Future) and his wristband were a bit of a give away.  He was waiting for the security guard at the desk to call him a cab.  Then, he remembered!  "My car is here.  It's parked in that lot over there."  Ultimately, the security guard and Doc walked past me to return to the fourth floor.  Doc knew they would be calling a cab from the desk on the fourth floor after he showed them..."I'm not crazy.  I know they think I am.... ahhh.  Who am I kidding, I have mental problems."  It was surreal.  The lobby is small and given the fact it was almost 6PM, is was quiet.  This episode was at least half an hour. Finally, the phone.  "He's great, went off without a hitch, they are waking him up now, you can see him in recovery in an hour."

I hit the PACU almost 90 minutes later.  Immediately, I turned into empowered patient advocate.  They were dragging their feet about releasing him from PACU.  "We have to wait for a room assignment."  I informed them, his room was assigned. This is the kind of shit that pisses me off.  But, I was pleasant.  Then, there was some discussion about the length of time he had to remain in their care before being brought up.  I glanced at my watch and announced that he was already out of surgery for well over two hours.  Within moments, we were on our way to his room.  He was in PACU during the shift change and these delays were more about everyone being brought up to speed than what was in the best interest of the patient.  Who happened to be MY son.  And did I mention I don't like that shoe on the other foot?

The night nurses stationed right outside his door were young, warm and caring.  And not overwhelmed.  I left him knowing he was in good hands.  When I arrived the following morning to bring him home, there was a bit of a medical snafu and they were hesitant about discharging him.  And again, three different people dispensing all sorts of information.  And again, I stepped in.  Ultimately, he did have to stay another night and the shoe is getting terribly uncomfortable.

What began Monday evening as the pre-surgical phase of the caregiving has now turned into post hospitalization care. Organizing all of his stuff once we got home.  Getting him situated.  Filling scripts.  Dispensing meds.  Making sure all of the dietary restrictions due to the "snafu" are covered......  I was prepared.  But that's the thing.  I just saw, first hand, up close and personal, what happens to the caregiver when a curve is thrown.  I got it done.  Left him for less then ONE HOUR to fill in the essentials and was an absolute wreck the entire time I was out.  And he is totally mobile. And his pain is totally managed.  He is fine.

And me?  The shoe on the other foot???  I'm reaching for the anxiety meds and my foot is a blistered and bloody mess.

I always held The Caregivers in the highest regard.  They are at the top of the pyramid.  Today, I learned that pyramid nearly scrapes the sky. Caregivers reside closer to angels than anyone else on the planet.  ANYONE.  Bar None.....   I owe lots of thanks to lots of people.  Obviously, mom but tomorrow morning, I'll start by thanking my son.

UNCUT AND UNCORRECTED

Why do I talk about my health in such a public forum?  That is today's prompt.....  write without stopping.  THIS could become very funny, completely incohesive and choppy, incorrectly punctuated and finally, let's just add auto correct to the mix....  Might actually highlight my claim to my brain....

I write about my health to help others learn about their own health.  I never anticipated that I would become an activist when I began blogging.  I thought I would stick to the silliness of chemobrain and there are plenty of days, I still do that. Then, there are days when something really irks me and apparently, I need to chill when I see something that is wrong. But, I can't chill and I won't chill because I'm not a do nothing kind of person.  I'm not at the forefront of anything, but I write about my health to bring my own experience to the table.

I believe that it is of utmost important for each of us to be An Empowered Patient.... to be our own advocate..... to understand our diagnosis..... to ask questions of our doctors...... to expect answers, respectful explanations... not simply "because that's the way it is."  When I was diagnosed with breast cancer, the actual diagnosis part played out over a three month period of time.  I had time to do my homework and I had a good foundation of cancer language by the time I actually heard the words.  It helped.

I am an open book with what happened to me, the decisions I made, the reason I made the choices right for me.  I hope writing helps others realize there can be, at times, many choices and it's not easy to make a decision.  When given options, it can be daunting.  I didn't go to med school.  I don't know what to do.... and then, STOP... This is my body.  I need to learn about what is happening and ACT.  What is right for me may not be okay with another person whose diagnosis is exactly the same.

Sometimes I am frightened and I reach out through this blog for support.  Sometimes, it is because I like to think that someone, SOMEWHERE is nodding there head in agreement over what I am sharing.  Maybe one person feels a bit less lonely and a tad bit validated because they can relate to what I shared.

I began writing to "unclog" my brain.  I continue because there is such a sense of community and a sense of support. Speaking only from the point of a breast cancer patient/survivor, I know there are many treatment choices.  Mostly, I want people to realize they should be getting all of their options before they make decisions.  AND, it is most important that they understand as much as they can about the choices they do make.  I certainly don't have many answers, I do have some. But I know how to ask "good questions" and I learned how to decipher the answers.  Cancer has a language all its own.

It's not black and white......  especially with breast cancer...... It's about understanding the grey... and I write hoping to shine a light on that.... and Self Advocating is of utmost importance.

OK... THAT's what my writing looks like without edits, corrections or the time to really dig into the corners of my brain...

NOW do you believe I have chemobrain?  ;)

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