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





Friday, December 28, 2012

The Recalcitrant Cancer Research Act, Formerly known as the Pancreatic Cancer Research & Education Act, Passes Congress - 19 Action News|Cleveland, OH|News, Weather, Sports

The Recalcitrant Cancer Research Act, Formerly known as the Pancreatic Cancer Research & Education Act, Passes Congress - 19 Action News|Cleveland, OH|News, Weather, Sports

Giant Shout Out to 19 Action News in Cleveland for publishing the Press Release from our National Headquarters.

When the local media steps up to help raise awareness it thrills me to no end.

You Go 19 Action News - Honest, Fair, Everywhere!  Ha.  Couldn't Resist.

Happy, Healthy New Year to you all. 

Peace - MK

Friday, December 21, 2012

The Recalcitrant Cancer Research Act will no doubt soon be Law.

http://www.pancan.org/email/corp/bill_passes_congress_dec2012_constituents.html

Best Holiday News Ever!  I am golden for Christmas with this news.  The only thing left to wish for is a cure.

Cleveland PurpleStride 2013


HARD TO BELIEVE - BUT WE ARE ONLY 5 MONTHS AWAY FROM CLEVELAND'S
PurpleStride 2013.....
 
Saturday - June 01, 2013
Voinavich Park (behind Rock Hall)
Timed 5 K Run / 1.5 Mile Family Fun Walk

I love creating our Team Page and I get so excited whenever a new team member joins or a donation is made.  This is MY personal Christmas.  As the Holiday's have lost quite a bit of their magic for me, for now anyway, I truly look forward to our PurpleStride day.

This is the day that means so much to me.  This is a day that Ed loved near the end of his battle and journey on this planet.  This is a cause he made me promise to continue to support....   So - Come Join Ed's All Star Dream Team 2013 and let's help change the future of this Monster Disease!

It's Easy - It's Quick - And there is NO such thing as too small of a donation - Every Single Dollar helps and ad's up to make a difference.

This year is very different and will be a very quiet Holiday - so until Paige gets married and has babies of her own to brighten the holiday's with children's laughter - PurpleStride will be my personal holiday.

Wishing All of you a very Happy Holiday Season no matter what you celebrate.






Friday, December 14, 2012

Miley The Wonder Puppy

Well,  Teenagers do some pretty dumb things - their brains work different than adults.  I mean, we can all remember some of the really idiotic things we did back in the day, right.  So, one week ago my darling child decides to rescue a puppy - without my consent mind you.  I was adamant that we would not get another dog and that no dog was welcome in our house.  Within 24 hours of Miss Miley being in our house, you can imagine how fast my mind (and heart) were changed.

Against all common sense, and the reminder by my family that this is insane, I think I am going to keep this little girl.

I mean, common, look at that face!  She will be Miley the PanCAN Wonder Pup and you bet she will be sporting lots of Purple!

Wishing You all the Happiest of Holidays, regardless of what you Celebrate....  As my Sweet Ed and I used to say....... Happy Chrismahannakwanzavis.






Wednesday, December 5, 2012

Recalcitrant Cancer Research Act is Pushing Forward!

Update on the Bill:

Yesterday, December 4, 2012, the United States Senate passed the Defense Authorization Act, which includes the Recalcitrant Cancer Research Act of 2012 (crazy - yes - but that's politics for ya) It’s not law YET – we have a few more steps to go – but the finish line is clearly in sight!

Click here to learn more: http://www.pancan.org/section_get_involved/advocate/congressional_update.php

This is outstanding news to everyone who has ever been touched by Pancreatic Cancer! 

Our voices will only get stronger and Awareness will continue to grow.  The future of this disease MUST change - and I will continue to be a part of that change as much as possible.  You can help too!  Don't continue to ignore a disease that may touch your life! 

Visit www.pancan.org to see how you can get involved!




Thursday, November 29, 2012

Big News from the Senate!

http://www.pancan.org/section_get_involved/advocate/congressional_update.php

CONGRESSIONAL UPDATE
November 29, 2012
Current Co-Sponsor Count for the
Pancreatic Cancer Research & Education Act:

in the U.S. House of Representatives (HR 733)
Passed on September 19, 2012
Click HERE for detailed information

in the U.S. Senate (S. 362)

59
(including our lead sponsor,
Sen. Sheldon Whitehouse) 


Click HERE for the full co-sponsor list to see if YOUR member has joined us!
THE RECALCITRANT CANCER RESEARCH ACT(FORMERLY KNOWN AS THE PANCREATIC CANCER RESEARCH & EDUCATION ACT) IS NOW OFFICIALLY PART OF THE DEFENSE AUTHORIZATION ACT!
As you may already know, on September 19, the U.S. House of Representatives unanimously passed the Recalcitrant Cancer Research Act, formerly known as the Pancreatic Cancer Research & Education Act (H.R. 733). Earlier today, the Senate approved the legislation to be added to theDefense Authorization Act. At this point, the Senate is expected to pass the Defense bill in the coming days.

Since the Recalcitrant Cancer Research Act was not in the House’s version of the Defense bill which was passed in May, delegates from the House and Senate will meet next week to iron out differences between the two bills. However, at this point, we do not have any reason to expect that there will be a problem getting this legislation included in the final Defense bill.

After the House and Senate agree on a compromise version of the Defense bill, the final bill will be sent to the President to sign.

Updates regarding the legislation will be sent out as it progresses through the process.


Appropriations Update
The "lame duck" session has officially started on November 13, and it will be a very busy couple of weeks as Congress focuses on finalizing the FY13 federal budget in order to avoid sequestration – which would mean automatic across-the-board cuts, which would be devastating to research funded by the National Institutes of Health (NIH).

By law, the $110 billion sequestration cuts will be split between defense and domestic programs. Of the domestic programs, an estimated $39 billion in cuts will be applied to “discretionary” programs, which include the NIH. With the remaining $16 billion in cuts coming from programs like Medicare. By Congressional Budget Office estimates, most programs will face a 7.8% budget cut per year. A cut like of this nature to the NIH budget will amount to over $2.4 billion in this fiscal year alone. Specifically, cancer research funding will receive a 8.2% cut over the next ten years.
While focusing on avoiding sequestration, Congress failed to agree on the federal budget before the start of the new fiscal year on October 1. Instead, a continuing resolution (CR) was passed on September 22 to allow the day to day operations of the federal government through March 2, 2013.
The CR essentially allows federal programs to continuing operating until Congress returns and decides how much money to allot to a wide range of federal activities, including cancer research. The CR, in this instance, will permit a small, 0.612 percent increase, to all federal programs. But while even a small increase in spending may be unusual in these austere budget times, it is important to note that funding for the National Cancer Institute will not even keep pace with the research inflation index.
“Some changes to current law are needed to prevent catastrophic, irreversible or detrimental changes to government programs or to ensure good government and program oversight,” the House Appropriations Committee said in its summary of the legislation.
Overall, the CR will fund the government at an annual rate of $1.047 trillion, the amount lawmakers agreed to last year as part of a deal to raise the government’s debt limit. That would be an $8 billion increase over current levels, according to the nonpartisan Congressional Budget Office.
It is important to note, however, that the new Congress that is sworn in next January will be charged with finalizing funding levels for federal spending through the remainder of the fiscal year. It is at this time that Congress will decide cancer research funding levels
The Pancreatic Cancer Action Network will be monitoring this issue very closely over the next several weeks.


Have Twitter? Follow us for the latest breaking advocacy news!

Tuesday, November 20, 2012

TempurPedic Hugs Back Campaign still going on!

If you have not already taken your
Rest Test
please plan to do it soon!!
$10 per validated rest test at a participating Tempur-Pedic retailer is donated
 
Find a retailer near you www.tempurpedichugsback.com 
THANK YOU Tempur-Pedic!!
 
Truly does not get any easier than this!
Lay down for 7 minutes.
Fill out a verification card.
Done.
We get $10 from Tempur-Pedic.
Campaign is going on through end of November!
 
So this Black Friday,
take a break in style & comfort, and do something good.
 
On that note - Happy Thanksgiving All.
 
 
 
 

Thursday, November 15, 2012

Thank You WOIO Akron for sharing!

http://akron.woio.com/news/health/84976-local-volunteers-take-action-during-national-pancreatic-cancer-awareness-month

Our Press Release being shared in Akron Ohio Today...  Now That Is What I Am Talking About.  Awareness at it's finest.  Boo Ya Ohio.  It Is Time To KNOW IT.... FIGHT IT.... AND .... END IT.

Peace All.

Wednesday, November 14, 2012

Happy Thanksgiving Everyone

These are words I can relate to each night when I go to bed.
Happy Thanksgiving in Heaven my Sweet Edward James.
Your Favorite of all the Holidays.
I miss you always and am fighting for the cause just like you made me promise.
Till We Meet Again - I keep you safe in my heart.
Thanksgiving Weekend - 2007 / Atlanta, Georgia

Monday, November 12, 2012

Purple - Let's make it the new pink and stop this cancer from climbing the death toll ladder.

Purple - the new pink

Click the link above and see why we need to start spreading awareness for other very deadly cancers.  There are several of them and we need to spread the awareness love. 

The money is there - it just needs to be shared a little bit more.  And, really, isn't that what we were raised to believe by our parents. 

For you EJD, and so many more, we battle for you, this November, Pancreatic Cancer Awareness Month!

Monday, November 5, 2012

Pancreatic Cancer Magazine Outreach now On Line!

Pancreatic Cancer Action Network flagship magazine, Outreach, is now online and interactive with in-depth articles focusing on our advocacy efforts that support research, patient services, awareness and getting the Recalcitrant Cancer Research bill passed before the end of the year! New page turning feature makes reading online easy. 

Click below to check it out!
publication: Outreach Fall 2012

Friday, November 2, 2012

Thursday, November 1, 2012

Check out this great Fox Sports Ohio video - FOX Sports Girls - Pancreatic Cancer Action Network PSA

Watch This Great Video - Together We Can.... Know It. Fight It. End It.

Check out this great Fox Sports Ohio video - FOX Sports Girls - Pancreatic Cancer Action Network PSA

6% Survival Rate - 4th Leading Cause of Cancer Death in the U.S.

The Time for Change is Now.  Won't you support the Pancreatic Cancer Action Network.

Go to Pancan.org for more information and to see how you can help in your community.

Thank You Fox Sports & FSOHIO

Friday, October 26, 2012

Halloween 2006-2009

Halloween with Ed and Friends
from 2006 - 2009.  In 2010 he was
too sick from his treatments - he 
was bummed (as was I) because
we loved getting dressed up
for Halloween!

This Year - I will be the Mayor of
PanCAN City!
2007 
 
 2008
 
 

2009

Wednesday, October 24, 2012

The Vision of Progress 2020



I took the Pledge - Will You...   With Your Support we can change the future for the next generation...  Don't let your family, friends and loved ones be at risk for a 6% survival rate.  With your help in raising awareness - the future CAN and WILL be changed.

Friday, October 19, 2012

Senate should pass cancer bill NOW - Washington Times

Julie is a Rock Star C.E.O.  Maybe she should be a Senator!  It's time to Get'er Done!  Click on the link to see why....

Senate should pass cancer bill now - Washington Times



Monday, October 15, 2012

Beautiful Poem...


Borrowed from someone I admire very much. Thank you Gina for helping me even though what you are dealing with I can not imagine.  For Gino and Ed.... Forever in our hearts and always on our minds.

To Honor You
By Connie Kiefer Boyd

...To honor you, I get up everyday and take a breath.
and start another day without you in it.
To honor you, I laugh and love with those who knew your smile and
the way your eyes twinkled with mischief and secret knowledge.
To honor you, I take the time to appreciate everyone I love.
I know now there is no guarantee of days or hours spent in their
presence.
To honor you, I listen to music you would have liked, and sing at
the top of my lungs ,with the windows rolled down.
To honor you, I take chances, say what I feel, hold nothing back,
risk making a fool of myself, dance every dance.
You were my light, my heart, my gift of love, from the highest
source.
So everyday, I vow to make a difference, share a smile, live,
laugh, and love.
Now I live for us both, so all I do, I do to honor you.

Friday, October 12, 2012

Man Walks Across America to Raise PC Awareness & Funds for Research



Well - BJ is absolutely someone that goes right onto the HERO list for this gal!  Did I support him with a small donation, You bet your Butt I Did!

Lustgarten Foundation gives 100% of the money they raise to Research for Pancreatic Cancer. Although their organization is not in any way connected to the Pancreatic Cancer Action Network - the organizations do have a nice working relationship and support the same goal - Research to Find An Early Detection Tool for Pancreatic Cancer and ultimately a Cure!

I wish BJ the Best of Luck on this very cool adventure and can only hope that some day I could do something on this scale to raise awareness & funds for research.

BJ - Man, if you make it through the CLE, you have a bed, a roof and a meal on me - and of course, a GLBC beer of your choice!

God Speed My PC Warrior Friend!

Thursday, October 4, 2012

Beautiful Night to Shine Purple for 2nd Annual PurpleLight National Vigil for Hope

On Sunday, September 30, 2012 Cleveland was one of 60 communities in the US to take part in the Pancreatic Cancer Action Network's 2nd Annual
PurpleLight National Vigil for Hope.
 
This Vigil shines a purple spot light on this disease and the need to make it a priority in the cancer fighting world.
 
It was a beautiful night! 
All of our speakers did a great job and the media was
on-hand to help support awareness, which was greatly appreciated!
 
We all know that for the next month, there is only 1 color and 1 cancer that will be focused on....  and that's o.k. to a certain extent - we just have to keep in mind that there are other, very deadly cancers out there that steal our Mothers, Daughters, Sisters, Wives, Aunts, and Cousins that need attention!
 
As for me - Purple is the color I will fight for until we have "respectable" statistics.... 







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

Monday, August 27, 2012

Pancreatic Cancer Awareness Day with Cleveland Indians & NY Yankees

Our Awareness day with the Cleveland Indians & New York Yankees was a complete blast!  We had such fun and truly believe that there are quite a bit more people from NY and the CLE that are now aware that we exist and we are not going to be going away anytime soon.

Working with the Cleveland Indians Organization could not have been better - the entire staff from your high office employees to the folks in the concession stands where our table was located treated us like royalty.  We truly appreciated all the support and kindness.

It Was A Great Day at the Ball Park!

 







 

 

Thursday, August 9, 2012

Alice Cooper - 1 year ago today.

On August 09, 2011 - Ed headed out on his last adventure of his life.  It was going to be a bit of a challenge - convincing him to use the wheel chair, not knowing if he'd be able to make the entire show, not knowing if he'd be able to stick around to meet Alice after the show....  But he did - because Ed Demyan was a ROCK STAR my friends - An absolute ROCK STAR.

This is the week we knew we would lose him - on Aug. 10, 2011, I returned from work and realized he had not really moved - he had slept the entire day and did not eat or drink anything.  I made him drink a smoothie and sit up a bit, but we knew - We didn't want to know - but we knew.  On Thursday morning, Aug. 11, 2011 Ed headed to hospice and began his journey to the other side - he fought it like a champ, and hung in there until the morning of August 17, 2011.  Then he just stopped breathing... went from sawing logs to a quiet sleep and just stopped.  My heart broke completely in half at that moment and will never fully be healed again. 

Those days in hospice all run together in my head as one giant day....  My memories of those 6 days are still very vivid however.  Some of the memories are mine and only mine as I was with him all day and slept there at night.  I only left him on Monday to go to my office and I still regret it a bit.  But after being in his room for 4 days straight, I too, needed a break.  Plus, I only left when I knew there were people with him that I trusted 100%.  I never felt safe with him alone in his room, and there were a few people that I was not sure would really take care of him, he was stubborn and kept trying to get out of bed and he was in no shape to walk by himself.  His friends did things for him that would have made the Grinch's heart grow out of his green chest....  Shaved him every morning, helped him shower and clean him up, took him to the bathroom, visited EVERY single day - sometimes twice.  Made sure I had enough to eat & drink.  Played him his music.  Came and watched a pre-season Browns game....  incredible.  Sometimes they would come a bit later in the evening just to sit and talk to him and hold his hand.  LOVE is what he was surrounded by - LOVE is what he was. 

I cherish that week like no other - especially the very, very quiet moments in the middle of the night when it was just the two of us and he couldn't sleep and I would sit with him and talk to him and he would squeeze my hand and look at me with those incredible blue eyes of his.  Knowing he was never, ever alone and never would be.  He was filled with so much love and compassion and sometimes fear.  What a sweet, sweet man.

This year has been ugly and sad and down right pathetic at times....  Again, all the things he told me it would be when he was making his arrangements.  I am glad the first year is almost behind us.  And for the people who spin tails of the past that are untrue and/or all sugar coated (and know it can be done because he is not hear to call you out) well - eventually you will have to face him yourself and explain the whys to him.  Unfortunately for me and my family and Ed's close friends, what we saw, heard and witnessed cannot be unseen, unheard or unwitnessed....  My perspective will remain the same always.  And there is no forgiveness in me for that behavior. I miss one small girl, that is it. So enough of that.

I just had the most fantastic week on the beach with 3 of Ed's best friends and their families and my awesome kid...  much needed R&R from an incredibly sad & busy year.  Volunteering, working full time and being a Mom/Chauffeur/ATM machine is quite a bit for one person - but - as those of us who are truly dedicated to The Pancreatic Cancer Action Network know - Productive Grieving is the best way to grieve!  Sitting around doing nothing is NOT an option.  And, So the fight continues!

If you are at all interested....  Please join us at Progressive Filed on Sunday, August 26, 2012 as the Tribe takes on the New York Yankees and We Raise Awareness for Pancreatic Cancer....  Join the Cleveland Affiliate and make a difference!

Pancreatic Cancer Awareness Day w/CLE Indians & NY Yankees - Sunday 8.26 - ONLY $22 a ticket, Wear Your Purple.