Thursday, June 21, 2012

ONE PHRASE, A WORLD OF DIFFERENCE


Instant gratification.  I want it.  I want it all.  AND, I want it now.  Actually, I wanted it yesterday.

Surely most people will look at those words and realize it's a preposterous notion.  Yes, in the internet world, 24/7, always on, constantly connected, I can satisfy a whim.  I want a tote for the summer.  I've done some brick and mortar, touch and feel shopping but I could, at this very moment, find a suitable tote, enter my credit card number, pay the additional shipping costs and have the tote in my hands by tomorrow.  Not instant.  But instant enough to illustrate the point.

Change is not going to happen overnight, or exactly the way we would like to see it without going through phases.  While I am motivated by idealism, I am rooted in reality.  I can engage my mouth as loudly and as passionately as most anyone. But no amount of kicking and screaming, bitchin' and moaning' or crying and complaining is going to fulfill that part of me that is shouting in my brain, "I want what I want, the way I want and I want it now."  If only....

Today, I saw change.  Small change.  A tweaking of words and WORDS Matter.  Part of what drove me to write the entry for the METAvivor blog was borne of what I heard when I was at the NBCC Summit.  I am a staunch supporter of NBCC.  If I weren't there wouldn't be a clock prominently displayed in the banner of this blog.  However, I was dismayed at what I was NOT hearing.  Everything was about prevention.  Prevent breast cancer in the first place followed by prevent it from spreading.

Nothing about prevent death.  Until yesterday.

Serendipitous??????  Seriously??  Again???  It may be a theme for this week.

Fran Visco, the president of the National Breast Cancer Coalition, wrote an Op-Ed piece which appeared in the Boston Globe.  "Let's End Breast Cancer By 2020" and I was truly elated to read her words.  There was a slight change which equates to a tremendous difference.  The piece, in its entirety, appears below.  It's well worth reading in its entirety.  The slight change which is a giant leap in the right direction for someone (that would be me) who has promised to keep a weekly dialogue about Metastatic Breast Cancer on this blog?

I'm keeping my eye on the big picture.  If we prevent the disease altogether and we prevent DEATH in those who already have the disease then we pretty much covered the starting point and the end point.  From those two points, we can work our way toward meeting in the middle, thus dealing with all the rest of "it" .....

Change doesn't happen overnight.  We take one step at the time.  I don't know what prompted this change in language, but I like it.  Was it vocal disillusionment?  I'd like to think so.  I'd like to think that enough noisy people have the ability to have their message heard, understood, accepted and then incorporated into the conversation.

Thank you, Fran Visco.  I applaud you for changing the wording just enough to make the priorities of the NBCC inclusive of ALL, regardless of where we may fall on the breast cancer landscape.  THESE words just elevated the mets patients from the land of the forgotten to the place where they belong.  A priority.  These Words Matter.  A-LOT.... 


"It is time to leverage the knowledge we’ve gained and allocate our resources to create a collaborative effort to achieve two overarching goals: preventing people from getting breast cancer in the first place and preventing those who get it from dying of it."


In its entirety, the words of Fran Visco.  Highlights are mine.


Man’s first steps on the moon, which we commemorate every July 20, were both an astonishing human achievement and an affirmation of our nation’s unique willingness to do great things. The seemingly impossible challenge President Kennedy issued in 1961 became breathtaking reality only 98 months later. It is time to reawaken this impulse and honor our heritage by committing to a goal no less ambitious or achievable — than the moon landing seemed half a century ago: ending breast cancer by 2020.


But this seeming success has masked a medical failure. The United States spends well more than $1 billion a year on breast cancer research, and we have little to show for it in terms of the outcomes that matter most. While mortality rates have been gradually declining, they are nowhere near commensurate with our investment in dollars and attention to the issue.


On one level, we have made great strides in attacking breast cancer. Pink ribbons abound. Countless thousands of women -and men — walk and run to raise money for a cure. Awareness is near universal. From this perspective, it’s easy to believe that breast cancer is in retreat.


The numbers tell an important story. Twenty years ago, 119 American women died every day from the disease; today, it’s 110. Nearly 300,000 women in this country will be diagnosed with the disease this year. About 40,000 women will die. That number is close to 500,000 globally. If this is victory, no one should want to contemplate defeat.


We have learned a great deal about the enemy during this long, drawn out war. Our understanding of the biology, pathology and genetics of breast cancer has increased dramatically. And, our capacity to gather, synthesize and analyze data is beyond anything even conceivable 40 years ago. The problem is that we are not applying our forces intelligently.


The shortfall is not in scientific knowledge, but in organizational and systemic dysfunction that discourages bold new ideas in favor of safe research and predictable results. We have created an infrastructure intent on keeping itself going, with no real focus on the true goal. As a result, we get slightly better treatments, slightly better surgeries and slightly better radiation regimes – benefits, to be sure, but no end to the disease itself.


It is time to leverage the knowledge we’ve gained and allocate our resources to create a collaborative effort to achieve two overarching goals: preventing people from getting breast cancer in the first place and preventing those who get it from dying of it.


The process has already begun and is yielding some promising results. The National Breast Cancer Coalition has created the Artemis Project® — named for Apollo’s sister — to implement strategic plans in these areas starting with a collaboration to develop preventive vaccines. Under NBCC leadership, some of the world’s leading breast cancer researchers, as well as a cadre of multi-disciplinary experts, are working in parallel to tackle the tasks necessary to prepare vaccines for clinical trials in five years.


As breast cancer survivors and NBCC advocates, we have given up hope and taken action. We have but one agenda: to end breast cancer. No one is minimizing the difficulty of the task ahead. But it is because the goal is so big and important that nothing less than a national commitment of our energies and skills is required.


Those who think this is impossible should look to the sky. Yesterday’s science fiction is today’s science. We can end breast cancer if we summon the will to do so. Decades of investment have given us the tools and refined the technology. We now know much and can learn the rest in time to meet our goal. Failure cannot be an option.


 

5 comments:

  1. Thanks for posting this and for your passion. Great thoughts are illustrated here. xo

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    1. Big hugs..... Yes, passion that won't quit until the words here become a reality for ALL....
      xoxox

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  2. AnneMarie, there's still time for you to hop on a plane to Wisconsin for the Wisconsin Breast Cancer Symposium! Thanks for posting the article! I am so looking forward to hearing Fran on Saturday! Also, two docs from Mayo Clinic speaking about breast cancer vaccine and two speakers talking about Metastatic Breast Cancer. If you don't make it to Wisconsin this weekend, I'll take good notes and fill you in next week. As "keepthecalm" said, thanks for your passion! Cyber Hugs to you!
    Your friend Barb

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    1. Hi Barb,
      I can't believe I didn't see this comment until today.... MONDAY... as in the AFTER the WI Symposium.

      I'm an epic chemobrain mess..... now doing some extension training with the CogMed software. Should start this week! Hope it will help. Very anxious to hear your thoughts.

      xoxox

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  3. Could you be so kind and share some links to other sources dedicated to this subject of course if you are aware of any.

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