Always Fighting for the Love of My Life

Edward J. Demyan; Pancreatic Cancer Victim; Supported and written by MaryKaye Mackulin, who loved him.
RIP my sweet man ... 1963 - 2011

Thursday, September 20, 2012

House Approves Cancer Bill

House Approves Cancer Bill

As I sat watching C-Span last night (Wed. 9/19/2012) I couldn't believe that I was watching the House unanimously pass a Bill that I, along with thousands of other folks that volunteer for The Pancreatic Cancer Action Network, have worked so hard to get passed.  For Our incredible staff in Washington and California alike, what an amazing accomplishment.  And in some very small way, I helped - because Ed asked me too.  I don't know if I'll ever make the trip back to D.C. for Advocacy Day, it was hard, really hard.  But who knows, this feeling of accomplishment is overwhelming and all I did was tell our story - his story. 

Now, as soon as possibly TODAY, the Senate side will vote....  if we can get the Affirmative on the Senate side it will head to the Presidents Desk.........   This is what Ed wanted to see.... this is what he wanted to do - ADVOCATE.  He never got the chance to make it to Washington, D.C., but I did.  I brought his fight to the Hill, it was by far the most difficult thing I have ever done.  Reliving his battle was painful to say the least... but it had to be done.  The future has to change for people diagnosed with these "recalcitrant" cancers...  So they changed the name of the bill, Who Gives A Gobidy-Goo...  Call it the "we-had-to-think-of-the-hardest-word-to-say" Cancer Research Act of 2012 (in other words, the Recalcitrant Cancer Research Act of 2012) and just get the dang thing passed.

I cried a lot watching this happen last night - It was more emotional than I could have ever imagined - It's C-Span for gosh-sakes - C-Span.........  Rep. Ann Eshoo rocked the microphone like a star.  It was a brilliant thing to behold.  If I would have missed it live, I would have been crushed.  I also DVR'd it.  Think anyone would be interested in coming over to my house for a "House Passes a Bill on C-Span" Party - - - - *** crickets ***   Oh, well ...  Guess I'll have to enjoy that one on the couch alone.

So - Here's to the Senate doing the right thing and passing S.362, The Recalcitrant Cancer Research Act of 2012!  And here's to the guy that lives in that big ol' white house signing it into Law.

Oh, EJD, this, this was your highest goal during your volunteer days with this group - we did it!  

Hopefully, the change will come now and the next generation will not have to hear.... "Sorry, your terminal, there is no hope.  Go get your things in order and say good-bye."

Tuesday, September 11, 2012

Ed's words for me

Ed was working hard on my very last gift....  he struggled and struggled and couldn't find all the right words.  The music he could always find - the lyrics were hard for him.  So instead of finishing it, because he knew his time was very limited, he asked his band-mate, Pete G., to write a song....   Ed asked Pete for this very special gift and told him he wanted it to be a tear-jerker...   Alas, Pete wrote "Tear Jerker" (yeah, he took it a bit literal) and folks, it IS one.  I wish I could somehow post it here for your listening pleasure, but I am not that tech-savy .... yet.

The original song Ed was working on, I will never see ... but, that's how it goes in life.

So, my sweet EJD....  as the Tear Jerker clearly states:

"I'll be waiting for you with a beer in my hand, I'll have a smile on my face and my toes in the sand!  You can bet your last dime, I'll be the first in line, on the day He calls you home!"  

And I know you will be the first in line when I'm called my love....  miss you every minute of every day!  Granted, I may not be going to the same place you are.......  time will tell now, won't it.

Thank You Ed... AND THANK YOU Pete for helping him out when he needed it most.  It is my greatest gift from you both.

Love - MK