Friday, February 8, 2013


I may be snowed in.  So might a whole bunch of other people in this part of the country.  I have plenty of things half written.  Things like the daughter of my mom's neighbor whose Onco-Dx score came back so low, her doctors did a complete 180 in their treatment suggestion.  Things like my closest friend in the world who IS a cancer patient with that orphan disease, whose radiologist is insistent that she needs an MRI because of her risk and her dense breasts..... and the doctor who received the report from the radiologist refused to order the test.  EXACTLY what I expected would happen.  So much for this great job of instituting a law to protect women.  The radiologist knows what she needs to properly screen and the doctor who knows NOTHING about imaging is reading a f'ing guideline and will not order the test.  Ultimately, this test will get done, but it will be a fight with the present doctor, or find a new doctor.  The problem?  Time.  And Energy.  And WHY must we fight for things (or pay out of pocket) if we happen to be the exception to the "guideline."  Yes, one success story and one big giant fail.

The details of self advocating will wait.......

I also plan to share what I learned at the seminar at Columbia School of Medicine.  Breast Cancer Management 2013 was informative.  It complemented what I learned in San Antonio.  How is the research that was presented translating over to patient care?  Excellent program agenda, excellent presentations.  This too will wait.  I suspect I'll have plenty of "down time" to put these thoughts together if NEMO has any say in the situation.  (And can someone explain when they began naming blizzards??)

THIS is what must be addressed immediately and by as many people as possible.  Share the links with anyone you know who is passionate about research.  I'm remaining apolitical.  This is not about politics although I read one astute tweet making an observations that the two parties resemble Thelma and Louise in the last scene of the movie.  That whole fiscal cliff nonsense that went on in December?  USELESS.  The real problem has not been resolved and March 1 is approaching rapidly.


Yesterday the folks at Research America pushed a campaign to enlist the help of as many of us as possible to bombard our legislators with calls and email messages.  Fix this problem.  Stop sequestration.  I didn't realize it otherwise you can be sure this post would have appeared yesterday.  No matter, our voices must be heard.  Can you sit down and work out this budget nonsense like grown ups.  Line by line, item by item, fairly.  Frankly, this is beginning to sound a little cancerous: Slash and burn.  Without regard to the fallout.  E-NOUGH.

What exactly is sequestration?  That's the bonus round question.  In its simplest form, it's an automatic cut to several line items in the federal budget.  Specifically, the defense budget gets cut by 43 billion dollars.  Ditto the domestic budget: another 43 billion.  What does that mean to you and me?  A mess.  Plain and simple.  A big mess to a struggling economy.

As an advocate, my primary concern was surrounding cuts in research.  Funding for research will take a 1.6 billion dollar hit.  But this goes far beyond research.  There's still in excess of 80 billion dollars on the cutting floor.  Aid to states, Head Start programs, Homeland Security and on and on.  At the end of the day, over two million jobs will be lost across all sectors.  Public and private.  This method of "fixing the federal budget" is a giant FAIL.  It is coming on the backs of the American public and I'm no economist, but this sounds like a sure fire way to crash the entire economy on one single day with one click of a pen.

It must be stopped.  We must raise our voices and let those in Washington know they better sit down at the same table and figure out a better way.

Again, this isn't a blog about politics but I can NOT side on the sidelines and watch this happen.  RESEARCH MATTERS. RESEARCH SAVES LIVES.  CLINICAL TRIALS SAVES LIVES.  LIVES MATTER.  THEY MATTER MOST.  Plenty of private funding is in there but I expect a portion of my tax dollars to fund what's important to me.

Use these links.  To learn.  To hear what is being said.  To find easy ways to contact your representatives.  I tried to find items that didn't "spin" blame in any direction.  Anything that reads like politics is not a reflection of my views.  My only views are the ones I put on this screen.  

Sequestration, What in the world is it?  via The Fiscal Times

Aerospace and Defense: Protecting America's Future - Take action at Second To None

Research America Action Center

This is not a new battle cry.  Below is a post I wrote in November:

I never dabble in religion or politics on this blog and I don't plan on backing away from that position.  There is, however, a crisis in our government.  It's something that each and every one of us who is passionate about medical research should know and understand.

The big sound bite since the day after the election is the so called "fiscal cliff."  Frankly, the focus on this fiscal cliff thing is pissing me off.  First of all, it has a name.  It's called sequestration and it's something that is going to impact research in this country unless something happens before congress closes up shop.  It's going to effect (and affect) a bunch of other things too, but as an advocate/activist, I'll stick with the line items that are consistent with this blog.

It's not a question of something that could happen or might happen.... it's something that is happening.. that WILL happen unless the folks in DC act quickly.  I don't pay enough attention to details these days but I saw this several weeks ago and frankly, I was very upset that this was not being discussed by the talking heads in the run up to the election.

In a past life, I could grasp much of this despite my inability to fully understand all of the underlying economics.  Now? Use a word like "debt ceiling" and I'm glancing at the sheetrock above my head for some extra fancy woodwork and cutouts.... in other words, a ceiling that cost so much to construct, someone went into big debt in order to achieve aesthetic perfection.  Eye candy for those times one is on their back staring into space.  And I would be wrong.

I doubt I can explain this in a way that anyone will understand.  I seem to recall attempting a blogpost about this before Sandy stole far too much time from my life.  Margaret Anderson, the executive director of a group called Faster Cures wrote a blogpost about this mess.  The link is here and I strongly suggest you click and read.

They have set up a special Sequestration Station on their website.  If this all reads like Aramaic, I suggest you read the FAQ's which explain what this is, how is happened and what must be done to avert this cliff diving nonsense.  If you don't read ANYTHING ELSE this entire weekend, please read those FAQ's.  We must compel our representatives to avert what is going to be a devastating blow to research.

There are several campaigns taking place at the moment.  As I was writing this piece, I see that today, Friday, there is a major push in social media to bring this to light.  Participate.   Check the Save Research campaign  and sign the petition so OUR government knows we need CURES NOT CUTS.

Like the pages on Facebook.  There are a few:

Faster Cures

Time Equals Lives

Research America

Tweet away using #SaveResearch or #CuresNotCuts or #TimeEqLives.

Today, I'll be tweeting to all of the politicos using the #SaveResearch hashtag.

I hope to be part of a huge twit storm.

This shit matters folks.  It really REALLY matters.....


  1. RE: your friend with dense breasts with the doctor who will not order further testing. Yes, the law may be a mistake or useless, but the larger issue is that insurance companies often will not approve or pay for a test ordered by the radiologist as they feel that radiologists order too many extra tests--that is why a doctor's order is needed. This was explained to me by my oncologist who, along with all the others at the cancer center where I was treated, order both mammograms and ultrasounds at the same time, leaving it to the discretion of the radiologists to go forward with an ultrasound if they deem it appropriate. It saves the patient waiting time, and sidesteps idiot insurance companies who are less qualified than doctors to make any kind of call regarding dense breast imaging. Oh yeah, and it covers the butts of the doctors, who know damn well that if a radiologist's suggestion is ignored and that woman ends up with cancer, they WILL be sued. Sounds like your friend's doctor is an idiot who does not mind risking a potential lawsuit if it your friend, or any other woman he or she has denied test approval, should be unlucky enough to have cancer. The laws are written wrong, and all the systems, health care and the supposedly free market insurance companies, are broken.

    1. You bet. And you nailed it.... The ENTIRE system is broken.

      This radiologist is well versed in breast cancer. She was the one who spotted a lymph node on my friend's neck that turned out to be a rare thyroid cancer. She brings her A game every day. She knows what she can and can NOT see on the imaging (always mammo/sono in this case) already done. I'm not one for "over testing" -- I am SO FREAKIN pissed off over this...

      Last week I was in a seminar where they were discussing when it was appropriate for MRI to be ordered. She fit EVERY category. I snapped a picture of the slide and sent it with a note: "Tell Dr so and so to go &*(&^&* herself"

  2. Oh, and BTW, The Weather Channel is to blame for naming winter storms. They started doing it a few months ago to "enhance communication" about possibly dangerous winter storms. Translation: so people would talk about threatening winter storms the same way hurricanes are discussed, and the Weather Channel would benefit from more viewers, web traffic, etc.

    1. THIS is chemobrain... I started to reply to this note about the named storms!!! Totally forget. Today-walking in a winter wonderland.... Long Island is a mess....


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