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

Monday, June 25, 2012

In D.C. Overwhelmed & Scared for tomorrow

I don't have a lot of time - I needed to do some work in the business center here at the hotel...  Just wanted to remind you all:

Join thousands on June 26, 2012 and tell your members of Congress that they must pass the Pancreatic Cancer Research & Education Act this year! Sign –up now for the National Call-in!

I will be on the hill that day - your call helps to support the people that are there in person and to reassure our nations leaders that we are serious about making a change - and we need their help!  Every Single Call Matters - 10 minutes of your day can help change the future for thousands of people!  DO IT!

We are about 684 Strong Here in D.C. - We have Spent the day in Educational Meetings - We got to meet the 15 yr. old genius who may one day change the face of cancer - We got to hear our Ambassador of Hope, Lisa Niami Swayze, give us a quick pep-talk - We are scared and nervous - and we will hit the hill hard tomorrow!

PLEASE back us up and call in - it's super easy and will help make the impact so much stronger than the almost 700 of us in person can make!

I have cried more today than I have in so long - it's been so incredibly emotional - every personal story touches my heart and makes me weep like a small child.  It's embarrassing - but I am surrounded by hundreds of people who have walked in these shoes and are determined to change the future of this disease! - Together we are Strong!

Love to you all - Peace!  MK

Wednesday, June 20, 2012

The Time Has Come - In less than 1 week I will join over 600 of my purple family members on Capital Hill...  Our bill has been on the floor for five years, in that time over 181,000 lives have been lost to Pancreatic Cancer...  YOU can help change the future from the comfort of your own home!  Make the Call to the Capital on Tuesday, June 26, 2012 and support those of us there in person.  Every Call Matters - EVERY SINGLE ONE.   Alone we can do so little - but together we make change!

2012 needs to be our year - I promised Ed to never give up his fight and I intend to do just that...  People may be sick of hearing my message, but that's too darn bad....  He was such an outstanding human being that words will never do him justice... I refuse to let his death be in vain and I refuse to sit back and do nothing - He will own my heart always and I will fight until mine stops beating.   I Love You Much my Sweet EJD...  We will win this battle.   And Thank You Love for the sweet Karma this past weekend - you were truly with us!  xoxoxo me xoxoxo

Monday, June 18, 2012

June 26, 2012 National Call In Day to Support The Pancreatic Cancer Research and Education Act!

Join thousands on June 26 and tell your members of Congress that they must pass the Pancreatic Cancer Research & Education Act this year! Sign –up now for the National Call-in!

I will be on the hill that day - your call helps to support the people that are there in person and to reassure our nations leaders that we are serious about making a change - and we need their help!  Every Single Call Matters - 10 minutes of your day can help change the future for thousands of people!  DO IT!

AND............ A HUGE - GIGANTIC - ROCKSTAR THANK YOU TO OUR PURPLESTRIDE CLEVELAND 2012 TEAM.........   The Event Was A HUGE Success and your love and support mean the absolute world to me!  NewsNet 5 - Thank you for covering our event and for the support from their very own Joe Pagonakis, our incredible emcee:


Thursday, June 14, 2012

Cleveland.Com Posts our Letter to the Editor!

Yeah Cleveland.Com for posting our VERY important LTE...  As we continue to fight this Monster disease, the support of our local media is paramount.  People Need to Be Aware in order to make a difference...  Because of Media Support, everyone knows what "pink" stands for, or even "yellow"...  we need everyone to know that this disease needs advocates too.  We need funds for research too.  We need an early detection tool too.  I am very proud to be a CLE homer everyday, but today even more so!

And, I just want to send Ed some really big hugs and kisses today, June 14...  Two years ago today we got engaged at Put-In-Bay in Mossbacks over delicious Walleye Nuggets...  We were so incredibly hopeful at that time that he was going to make it to surgery and live for quite a while longer...  it was not to be, but that day (this day) is very special to me...  then we went to Cedar Point the following day and had an absolute BLAST...  What was so special about that little 3 day get-away was it was just the two of us - no family / no friends - just us being us....  in a perfect world everyone would get to experience what we had - I know I've said it a thousand times - it was special.  We were truly a great team....  It is unfortunate that it was not supported by a lot of people, but it is true none-the-less ....   And again, I reiterate - it's my blog, if you are going to read it just to type nasty comments about it - um, don't read it.   RIP my sweet EJD - I miss you every second of every day! 

Tuesday, June 12, 2012

Interview with WDOK's Jim McIntyre & National Call-In Day

Here is the link to the interview Jim McIntyre did with myself and Sarah Keil-Chernoff (of the Walking for Wendy Family/Team) ...  Below the written paragraph, you can listen to the audio...  My gosh we were so so nervous, but I think we did a really good job!  Go Sarah - you are a rock star!

Jim, the Chernoff Family and Miss Rona gave us this incredible opportunity to share our passion in fighting this Living, Breathing Monster and we truly appreciate it.

This week, an 11 year old little boy in central Florida passed away from Pancreatic Cancer, recently a kindergartner was diagnosed with stage IV PC in southern Illinois, three teenagers have been battling this disease and have made the news recently....  This disease does not discriminate, it is not an "Old Man's Disease" it is not an Alcoholics disease - this disease can touch anyone and everyone and if we don't make changes soon - a lot more of you reading this will know someone touched by this killer.

We Need You to help make the future different, help make the future better and we need the Government to step up take this seriously, along with the National Cancer Institute...  2% of the annual NCI budget is not enough - not even close....   Support the Pancreatic Cancer Research and Education Act by joining us on National Call in Day on Tuesday, June 26....    click this link to learn more about how YOU can help from the comfort of your own home by making a phone call or two:

Can't open the link, well then, here ya go:

National Call-In

We need YOU to Call Congress on Tuesday, June 26th

If you cannot travel to Washington, DC, to join us for the Sixth Annual
Pancreatic Cancer Advocacy Day, we hope that you will participate in the
National Call-In. Please mark your calendar for Tuesday, June 26th and
be prepared to spend 10 minutes placing three very important phone calls that day.

What is the National Call-In?

The National Call-in is an opportunity for all Pancreatic Cancer Action Network
supporters across the country to join together with one voice to tell Congress that
while you can't attend Advocacy Day in person, you believe that the time has come
 for Congress to take action on pancreatic cancer!

How does it work?

On Monday, June 25th, 2012, you will receive an email with instructions on how
to place the calls to your two U.S. Senators and U.S. Representative. The email will
include their office phone numbers, and what we'd like for you to say. The calls
should take less than 10 minutes of your time, but they will significantly impact
our efforts to make the pancreatic cancer community heard.

To ensure you receive the National Call-In email, sign up for the
Advocacy E-list. Information about the National Call-In will also be
available at on June 26.

Mark your calendar today!

More than 2,800 phone calls were placed to Congress during the 2011 National Call-In.
These calls were a tremendous help in augmenting the in-person meetings that were
happening as part of the Advocacy Day. Please mark your calendar now for
the 2012 National Call-In on June 26th and ask your friends and family to do
the same. With your help, we can double the amount of calls that are placed to
members of Congress during this year's Advocacy Day and make sure that legislators
hear our message loud and clear: Pancreatic Cancer: Know It. Fight It. End It!

Questions? If you have any questions about the Sixth Annual Pancreatic Cancer
Advocacy Day, please contact our Government Affairs & Advocacy Department
at or 202-742-6699.

Sunday, June 10, 2012

Local Real Estate Investor, Entrepreneur, Cancer Survivor To Speak at PurpleStride Cleveland | PRLog

Local Real Estate Investor, Entrepreneur, Cancer Survivor To Speak at PurpleStride Cleveland | PRLog

Inspiring and miraculous ... And why we fight!

Ed's All Star Dream Team could use some more love.... Feel free to join our team or make a donation in honor of Ed or a loved one of your own.

Together we battle, together we will win!

Friday, June 1, 2012

Just for those wondering...

A little history lesson on the Pancreatic Cancer Action Network ....
"For those who are fairly new to the organization, just to give you some historical perspective, the very first Evening with the Stars in 1998 raised funds that provided the seed money to start the early detection research lab at Johns Hopkins, where important research results continue to flourish. Even with that effort, in 2003 (the year the first leadership conference was held), there were still fewer than TEN full-time pancreatic cancer researchers in the entire country. That was the year during which Pancreatic Cancer Action Network began to fund career development awards. The main focus of these awards was to attract young researchers into the field of pancreatic cancer research. As those young researchers developed promising research, they were more likely to qualify for the larger federal grants or private grants that would enable them to do even more research. Once those people who were early in their careers became successful in the field of pancreatic cancer research, it would improve the chances that they would remain in the field. Indeed, most of the researchers who received those early awards have remained in the field, and many of them have gone on to lead the efforts that have led to new discoveries.

Pancreatic Cancer Action Network has been credited in professional journals and elsewhere as being the leader that helped change the face of research for pancreatic cancer. Because of the efforts of this organization, other organizations that support pancreatic research have said that they are now getting proposals for much better research. In April 2010, Julie Fleshman received the Distinguished Public Service Award from the AACR (the leading cancer research organization in the world) in part because Pancreatic Cancer Action Network almost DOUBLED its commitment to research funding from 2009 to 2010. I was told at that time that the commitment for research funding was increasing about 70% more between 2010 and 2011.

In addition, through its advocacy efforts, the organization has helped federal funding for pancreatic cancer research increase from $17 million per year in 1999, to $96 million in 2010.

So, if anybody ever asks you what this organization has done, those are some pretty impressive facts. Because YOU volunteer, YOU help the organization focus that money on research. And everybody who contributes to the fundraising efforts around the country helps those research dollars continue to grow."
Borrowed from Mary Zapor, one of my buddies in volunteering for this outstanding organization! 
We will change the future - we just need to bring the awareness and ensure that the Government steps up for this cancer....   It's our turn - It's our time!