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.