Tuesday, September 24, 2013


It's here.  Almost.

I'm done with awareness.  My campaign for the month of October will be focused on education.

Let me be clear.  In much of the USA and in most westernized countries, we do NOT need awareness campaigns. However, there are plenty of locations in all corners of the globe where such campaigns are essential.  I have friends in some areas where there is a disconnect and I will support whatever efforts they feel are necessary because awareness is lacking.

Geographically, this is not one of them.

Awareness is a word I intend to ban from my language.  The awareness ship has sailed.  It's time to shine a light on the facts.  The cold, hard facts.

The illusion of progress cloaked in pink and tied with a neat ribbon is the result of too much awareness.    I will be respectful; I will use this space to dispel the myths; I will share facts.

I believe in research terminology this is referred to as actionable findings.  We need to come to some sort of actionable methods to change the conversation.  To unify.  To realize that together, we are stronger.

The pendulum has swung and it seems to me, it's gone too far in the other direction.  We are a polarized community.  That doesn't bode well if the goal is progress.  The stage is set for a war of words.  Frankly, I'm tired of lip service.

No, this is not me throwing in the towel.  NOTHING could be further from the truth.  It's time to stop talking and it's beyond time to start doing.

There is no right way or wrong way.  We are all on the same mountain.  There are many paths to the top.  Is it worth our energy to argue over war metaphors?  Isn't our time better spent doing anything aside from discussing our feelings about pink, about the ribbon?

How about discussing the facts in priority order?  Priority one, metastasis.  METAvivor volunteers are working tirelessly to change the conversation.  I'm all in on that initiative.  Where is the splashy campaign for those living with metastatic disease?  Which big network is running a significant story dedicated to metastasis?

What about those with rarer forms of breast cancer, the inflammatory breast cancer patients and those with triple negative disease?  What can we learn about IBC and TNBC?

Who's helping those who are unable to pay for treatment?

Corporations are not in the business of philanthropy.  If they are in the ribbon game, are they being transparent?  Where are they sending their money?  How much are they sending?  What is the recipient doing with that money?  Are they making a difference in the communities they have chosen to support?  Are they funding research that holds the promise to allow us to make meaningful progress?

All I ask is that we all ask these questions.  If the answers are satisfactory to you, go for it.  If they aren't, say something. If you aren't sure whether the answers are satisfactory, ask more questions and keep asking until you have the answers you seek.  Armed with information, you will know what to do.

That's what we call a Pink Stink.  Know that each of us has a different thresh-hold for what we consider to be acceptable. Some of us are intolerant of any profits being made on the backs of our disease and others are fine knowing a portion of the profits are being donated.  No finger pointing because there is some imaginary formula regarding where a line should be drawn.  If there is money on the table and it's going somewhere worthwhile, we may need to soften our stance.

I repeat.  Acceptance.  Together we are stronger.

The ribbon is big business.  The ribbon isn't going anywhere.  To that end, it's up to us to change the marketing.  To change the message.  To support the work of the researchers who are trying to change things for my daughter, for the next generation.  Prevention.  To support the work of the researchers who are trying to save my mother from dying of anything other than breast cancer.  To support the work of those who are trying to find ways to allow me to use the word cure when I share the fact that I am a breast cancer patient.

My daughter is at risk, my mother is metastatic and I'm not cured.  I have skin in the game.  In all of the games.  It makes it very easy for me to look at this from every angle.  Lucky me.  I'm multi-dimensional.  A previvor, a metavivor, a survivor.  The trifecta.

As a multi-dimensional patient-advocate, activist, rebel rouser, noise maker, I no longer want to simply make noise.

I want to be effective.

I want to collaborate.

I want to be the change so I can hopefully see the change.

You in?  There are far too many questions.  It's time for answers.  And actionable findings.  It's TIME.

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