Friday, March 30, 2012


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.        

Thursday, March 29, 2012


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.

Wednesday, March 28, 2012


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!"

Army of Women
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


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.
Copyright 2009 Love/Avon Army of Women

Tuesday, March 27, 2012


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.

Monday, March 26, 2012



Seated on 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.

Friday, March 23, 2012


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.

Thursday, March 22, 2012


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,, 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

23 Responses to I am so tired of celebrities putting a happy face on breast cancer.
  1. Larry Tincher says:
    Well said Honey !
  2. Sandy Kugelman says:
    Fantastic! Thank you. The only thing I disagree with is that there has been much research on prevention. There really has been minimal research on this since corporations like Ford are in bed with Komen and wouldn’t like publicity about environmental links. But all else that you point out is so right on. I get so tired of people holding Cheryl Crow up as a role model for me. I think she had stage 0.
  3. Rita says:
    I have lived with breast cancer for over 15 years, (Stage 2, node negative)and soon it will be 11 years with stage 4 disease. (Bone metastasis.) PFS-progression free status is my label and I am thrilled to still be here.
    I have watched many lose their fight with breast cancer. No known cause, no way to prevent it still after all of the research and money spent.
    Celebrities that gush over how lucky they are and make it seem as if B.C. is nothing have not a clue.
  4. Reblogged this on ihatebreastcancer and commented:
    MBCN board member Deb Tincher is glad Guliana Rancic shared her uplifting breast cancer story in US magazine. But she reminds us that celebrities with early stage breast cancer are not just like US. “I am so tired of celebrities putting a happy face on breast cancer,” writes Deb.
    Me too.
  5. Cheryl says:
    It seems to me that a lot of people (men and women),go along for years after having stage 0 breast cancer,then have bone,liver,or brain mets pop up.Saying you are “cured” because of a mastectomy,chemo,and rads is,in my opinion,naive.
    From the reading I’ve done on ,there isn’t anyone who can be sure they are “cured”,even after many years.
  6. Carole says:
    You are not scary to me because first of all I know that it could be me at any time. I worked for a national organization as a counselor and in training we were asked this question “Do I or did I have breast cancer?” I know that there is always a chance that a rogue cell is sitting dormant in my body and could burst into action at anytime, so my answer medically is yes I still do have breast cancer. NEOD is nothing but a statement my doctors can make annually and maybe one day they won’t be able to say that. But you do not scare me, I don’t run from my Stage IV friends, I am not uncomfortable around any of you. What I wish is that your voices be heard because the next celebrity to come forward may not be so cavalier about their staging
  7. Count me as another who is more than a bit tired of the ‘happy-face celebrity version’ of the cancer experience. While I applaud any celebrity for going public and trying to make a difference, such stories don’t tell the whole story. Unfortunately, the public latches onto such stories and remains in the dark as to breast cancer’s other realities, and that’s a disservice.Thanks for writing this.
  8. So glad to know I’m not alone in my dislike of celebs touting BC as such a happy, pink-ribbon-wrapped gift. I wish more people knew that that morbidity rates for this disease remain relatively unchanged; thanks for spreading the word.
  9. It’s one thing when Betty Ford, Happy Rockefeller, and Elizabeth Edwards stepped up and talked about their breast cancer, and the realities of their respective cancers.
    These women were true celebrities and used that status to educate and empower others.
    But Guliana Rancic? Give me a break. That is not a cancer story; it’s self promotion masquerading as public service.
    Until we understand that “breast cancer” encompasses up to 20 (I’ve heard of that many) diseases this kind of “celebration” will continue to confuse the issue.
    Thanks for really good post.
  10. hjelmstd says:
    I have long been upset how the media uses the “happy” stories. It trivializes breast cancer for all of the metastatic women and even for those of us who have not yet had a recurrence or metastasis. Breast cancer is not a lark.
  11. reenie says:
    I think this is an unfair dig at women who don’t have metastatic breast cancer. I really think we should be here to offer support no matter what the diagnosis or possible outcome. I was diagnosed with triple positive stage I breast cancer. I had no lymph node involve. I am currently undergoing six chemotherapy treatments and 52 weeks of Herceptin. I am sure I can speak for every women that has ever been told she has breast cancer. I am afraid of metastasis, I am afraid that breast cancer could ultimately take my life. We all feel aweful when some of us end up suffering and dying of our disease. We should be happy for those of us that do not. We are all survivors. If you are living with it, you are surviving. We all want a cure, we all want to see those most affected be saved. Celebrities bring much need vigor to our fight. We should be glad that they are brave enough to share their journey with the world.
    • Sandy Kugelman says:
      Reenie, I do understand how scary it is, regardless of your stage at diagnosis. I was originally diagnosed Stage II, and I was raw-nausea-terrified. Three years later (8 years ago), I was diagnosed Stage IV. It probably sounds like sour grapes when you hear us criticize, but I would like to illustrate and hope I can articulate what I feel: I think the issue is that it seems that 95% of media coverage is about happy stories of “recovery” and “beating cancer” but in reality, no one dies of Stage I, II or even III cancer. Those of us with metastatic disease feel frustrated that we are swept under the rug even though we’re the ones dying. So it’s not that I don’t want to celebrate someone else’s good news. This isn’t a dig at women, it’s about the media. I want the media to accurately portray the scope of the experience of having breast (or any) cancer. They do not do this. Showing only the happy pink ribbon stories is like interviewing only white people about the civil rights movement.
  12. Reenie –you are correct that all cancer of any stage sucks.
    Specific to breast cancer, about 20 percent of those with early stage disease will go on to join the metastatic breast cancer ranks.
    Elizabeth Edwards was the most visible face of metastatic breast cancer–she was honest and accurate in her comments about the disease.
    Can you think of a celebrity who had Stage IV breast cancer? Sheryl, Melissa, Olivia and Guiliana don’t.
    Guliana Rancic’s early stage treatment didn’t require chemo or radiation. She had immediate reconstruction following her double mx.
    At no point (that I know of) has Rancic ever explained that she has early stage breast cancer and has an excellent chance of not dying from breast cancer, and, in fact was never in any danger of dying from her early stage dx.
    Not so for those of us with MBC.
    Rancic has been on the Today show at least twice to provide updates on her breast cancer. Bear in mind that most people with early stage breast cancer never see an oncologist. I see mine every month as do most people with metastatic breast cancer. Guliana Rancic has spent more time on the Today Show than in an ocologist’s office.
    What vigor is Rancic exactly bringing to the fight against breast cancer? In her case, breast cancer has been something to exploit to get on tv and in magazine’s to FURTHER HER OWN CAREER.
  13. Nan LaGow says:
    I have been fighting breast cancer for seven years. I just went through radiation for a spot in my spine and I just had a brain tumor zapped with radiation. This plus daily chemotherapy bears no resemblance to celebrity success stories that further their careers. I am happy for them, but I am happier for every morning that I wake up and can see my family. The pitiful amount of research dollars and the often unavailability of drugs we need are terribly sad and depressing realities. But we move forward every day and we all should be proud of ourselves and grateful we are not alone. I applaud you all and hope for many, many more days for us all.
    Nan LaGow
  14. That is the link to the Monday evening #BCSM tweet chat. It was all about the lack of funding for metastatic disease. 2% of research funding goes toward mets research. And, according to METAvivor, 30% of BC patients will become Stage IV.
    This is a GREAT conversation. I am reblogging this right now!
  15. BeenThere2009 says:
    With all due respect, I was diagnosed in 2009, early Stage 1, ER+, invasive BC with no node involvement. While I was fortunate not to require chemo or radiation, I felt very judged and/or ostracized by certain women that I met in support groups and along the way — as though I did not “suffer” as greatly as they did. Forget the fact that I had a double mastectomy with reconstruction due to strong family history (without the BRCA gene). For anyone thinking “I got off easy” I’d welcome you inside my head — I don’t have the extra layer of protection offered by chemo and while I trust my doctors that deemed it unnecessary, it scares me to death.
    That said, I have been offended by the endless parade of celebrities (particularly Giuliana Rancic) that have minimized BC on every level — from the unrealistic expectations she set for women prior to her surgery — to having hair and make-up people as well as stylists to help her dress during with her tissue expanders. Giuliana was even quoted in Chicago magazine saying she wanted all women to enjoy all her luxuries, including fancy shoes, and was going to start a type of ‘make a wish’ foundation for adults. I nearly lost my lunch.
    Because yeah … all a woman with BC wants (particularly with Stage IV) is a pair of Manolos. What planet does this girl come from?!?
    Giuliana is NOT the face of BC and brace yourselves … she and Bill will be pimping her surgery out on their reality show when the new season airs in April. Yes. For PROFIT. There are simply no words.
    I’m glad she is okay (as I would be for anyone) but she is still the vapid and shallow person she was before this happened and I resent her making a buck off a horrible disease. You didn’t see Christina Applegate, Robin Roberts, or Sheryl Crow doing this.
  16. ginny says:
    Reenie and BeenThere2009:
    I don’t think the intention of the post was to drive a wedge between women with early stage and those with metastatic breast cancer. Rather, as others have said, it focuses on the media, the choice of stories and the fact that although we have more than enough pink ribbon breast cancer awareness, it is sadly misguided and we have very little true understanding of breast cancer as a devastating disease. Why isn’t that story out there?
    I see on Twitter that there is a discussion group called #fearlessfriends, early stage “survivors” who are willing to confront their fear of recurrence and discuss the unmentionable topic of metastatic disease, which I think is just fantastic. Fear of recurrence has to be the greatest single legacy of “surviving” early stage cancer. Most of us, as metastatic patients, were there once and understand the fear.
    But, breast cancer is one disease we all share and we should be bonding together as earlystage and metastatic to end the fear, support research that will control metastases and make a breast cancer diagnosis a manageable, chronic disease, until a cure is found. ( or as Jody points out, 20 cures are found). Be our fearless friend, support us and help end recurrences.
    • Yes, Ginny and Deb!
      There are a whole group of us called #fearlessfriends and some of us left responses above. I have this scheduled to appear on my blog tomorrow. In its entirety. Comments and all…..
      I wrote a blog a few months back about medical advice from celebrities and I just went back to peek at my own post. What got me? The FIRST comment under that post was from Rachel. Now, I sit here with tears in my eyes.
      The conversation MUST change. Researchers should be enticed if they are not coming up with some cutting edge thoughts and ideas. We all need to to make our voices heard and to let it be known that 40,000 lives that are STILL being lost each year and that is simply unacceptable to ALL of us.
      I am a fearless friend and a five year stage one “survivor” and none of this is okay with me. Mets patients are breast cancer’s “dirty little secret.” I hope we can push that ribbon aside so people can see the true (lack of) progress on so many fronts.
      Best to all,
  17. Deb says:
    Wow! I can’t believe all the great responses and the dialogue that is taking place. US mag. and Guiliana may ignore my letter, but it is a start for enlisting anyone in the public eye to promote our platform. We need more awareness in our community, the cancer community and surely the nation. So let’s rally the troops! Posting on celebrity facebook pages, writing letters to newspapers, and rallying the bc groups on our need for research $ is something we can all do.
    My intention was not to minimize primary breast cancer–I was there for 12 years–but to emphasize how much we are ignored or forgotten. Thank you so much for reposting and blogging. We need to keep pushing for our voices to be heard.
  18. ginny says:
    Thanks, Anne Marie. I think the best way to honor Rachel and her wonderful voice is to keep on fighting for what she believed in and what she so eloquently expressed for all of us.
    Looking forward to following you on your blog and twitter.
    • I couldn’t agree with you more! Tonight, I was at the Avon Foundation Breast Cancer Forum evening reception where I was trying to get women to join Army of Women. On the way home, I got a text message from someone who is VERY dear to me. Cancer recurrence in her sister. Likely not local. It became VERY personal again. I don’t think it ever stops being personal but when it hits so close to home so soon after I watched my 39 year old friend go from stage I to death in UNDER two years…… I am determined to change the conversation.