Halloween 2006-2009

2006 - With "Dr. Love", aka "Eddie Luv", aka "The Doctor" - we had no choice that first year! Had to be the Dr. & Nurse!

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

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.

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

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.

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!

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.... 

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."

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

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!

 



 

 

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.   http://bit.ly/MbVLxl

14 Famous Faces of Pancreatic Cancer, Still Not Enough.

http://www.huffingtonpost.com/2012/07/25/pancreatic-cancer-celebrities_n_1700645.html


When - When - When will this cancer be taken seriously - How many annual deaths make it worth looking into.  When will the Government and The Media give us the same respect they give the Pink.  I am furious about this today - FURIOUS - I know I am angry because we are sitting on Ed's 1 year anniversary - I should never, never have had to loose him to this disease - but because the powers that be do not take it seriously - he is gone.  Lost forever to a disease that could be fought if those who have been granted the power wanted it to be fought.

Who has to die - WHO?  Steve Jobs obviously wasn't enough to get it the attention it needs - Patrick Swayze obviously wasn't enough - a renowned heart physician and another great surgeon here in the CLE is not enough - Dr. Randy Pausch who's lecture on dying is world renowned.... not enough...  A Pink Floyd band member, a Deep Purple band member, a local and beloved sports announcer, a world renowned Tenor - WHO?  A MLB baseball coach, several famous actors.........   Who does it have to be????  I mean, surely, none of the powers that be give a crap about an extraordinary middle-age man from Cleveland - SO WHO I ask?

When?   W H E N ????   Research - WE need Research - we need it NOW.  Or the next generation will be typing these same words and replacing it with their idols, parents, siblings and children's names .....

RIP to them all.........   But for me personally, to the man of my dreams, because that is the only place he exists now.  ILYB....... me xo

Statement by the President on the Passing of Sally Ride | The White House

Statement by the President on the Passing of Sally Ride | The White House

What is it going to take to get our bill passed. Who is going to have to die to make the government step up and pass the bill. The Pancreatic Cancer Research and Education Act needs to get passed this year. Go to knowitfightitendit.org and see how you can contact your elected officials and change the future of this monster killer.

Lawmakers Call On Committee To Take Action On Pancreatic Cancer Bill

Lawmakers Call On Committee To Take Action On Pancreatic Cancer Bill

TRIBE -V- YANKEES FOR GREAT CAUSE!

Sunday - August 26, 2012 at 1:05 p.m.

PURPLE AT PROGRESSIVE - AN AWARENESS DAY WITH THE

CLEVELAND INDIANS AND NEW YORK YANKEES

Go To:  www.pancan.org/cleveland - and click on the Event for Details

and to purchase your tickets!

Join us as we cheer on the Cleveland Indians as they take on the New York Yankees while supporting the fight against Pancreatic Cancer! A portion of each ticket sale will go to the Pancreatic Cancer Action Network.

To purchase tickets: http://tinyurl.com/btqjwa7
Be sure to enter the special offer code: pancan

$22 Each 

If you are a survivor who will be attending the game please email Erin Corwin at ecorwin@pancanvolunteer.org.

Interested in participating in an exciting pre-game activity? We have been given the opportunity to parade around the bases to raise even more awareness and support our local survivors and caregivers before the game! For more information please contact Erin Corwin, Affiliate Coordinator, at ecorwin@pancanvolunteer.org.

San Diego Padres' Come Through in a Big Way!

It is unfortunate that we have to face the loss of yet another warrior to Pancreatic Cancer, but it is with much appreciation that I acknowledge the San Diego Padres for honoring one of their own.  Their very generous contribution and willingness to raise awareness in our fight, and honoring an awesome ball player, would make Ed really happy.  I mean, it's a ball player for crying out loud!

https://www.facebook.com/Padres/posts/330260057059450?ref=notif&notif_t=share_reply

Trey Erwin's family says the teen has passed away - Action News 5 - Memphis, Tennessee

Trey Erwin's family says the teen has passed away - Action News 5 - Memphis, Tennessee

Patrick Swayze's widow pushes for pancreatic cancer research

Patrick Swayze's widow pushes for pancreatic cancer research

Where We Stand as of 7.2.12 with Gov't Support

Here is the information that I copied & pasted from our Advocacy page.  You can access this page yourself and send an already created letter to your Senators and/or Congressmen to help change the future of this disease:  http://www.pancan.org/section_get_involved/advocate/advocacy_action_center.php

Become an Advocate See Topics in this Section Overview Sign Up for News & Advocacy Alerts Look Up Your Elected Officials Annual Advocacy Day Learn Our Issues Understanding the Appropriations Process Facts and Statistics to Share with Policymakers Advocacy Action Center Congressional Update Advocacy Stories

Advocacy Action Center Pass the Pancreatic Cancer Research & Education Act this Year! The Pancreatic Cancer Research & Education Act (S. 362/H.R. 733) has achieved an extraordinary level of support. No health-related bill has more bi-partisan co-sponsors in the 112th Congress. Yet, the committees of jurisdiction over this bill have not taken action on the bill despite the support of a majority of both committees’ members. We are grateful that the authors of S. 362 (Senator Whitehouse) and H.R. 733 (Reps. Eshoo and Lance) have drafted a “Dear Colleague” letter urging the leaders of the Senate HELP and House Energy & Commerce Committees to mark up these bills right away so that the full Senate and House can vote on them. We need as many signatures on the Senate and House Dear Colleague letters as possible so that the committees of jurisdiction get S. 362/H.R. 733 moving to a vote and to the president’s desk by the end of the year! Below is a list of all the senators and representatives (listed by state) who have already signed onto the letters. Please click on the buttons below to send an email to your members of Congress and either thank them for signing onto the letter or request that they do so no later than Friday, July 13. It is time Congress acts on critical pancreatic cancer legislation! As of July 2, 2012 U.S. Senate Letter Signers Sheldon Whitehouse (Rhode Island) Barbara Boxer (California) Joseph Lieberman (Connecticut) Richard Blumenthal (Connecticut) Richard Lugar (Indiana) Chuck Grassley (Iowa) Jerry Moran (Kansas) Susan Collins (Maine) Scott Brown (Massachusetts) John Kerry (Massachusetts) Thad Cochran (Mississippi) Roger Wicker (Mississippi) Roy Blunt (Missouri) Ben Nelson (Nebraska) Kirsten Gillibrand (New York) Chuck Schumer (New York) Kent Conrad (North Dakota) Sherrod Brown (Ohio) Jack Reed (Rhode Island) Tim Johnson (South Dakota) Bernard Sanders (Vermont) Patrick Leahy (Vermont) U.S. House Letter Signers Anna Eshoo (CA-14) Leonard Lance (NJ-7) Jo Bonner (AL-1) Mike Ross (AR-4) Ed Pastor (AZ-4) Barbara Lee (CA-9) Jackie Speier (CA-12) Zoe Lofgren (CA-16) Sam Farr (CA-17) Linda Sanchez (CA-39) Joe Baca (CA-43) Ken Calvert (CA-44) Brian Bilbray (CA-50) Diana DeGette (CO-1) Bill Young (FL-10) Dennis Ross (FL-12) Vern Buchanan (FL-13) Bill Posey (FL-15) Ileana Ros-Lehtinen (FL-18) John Lewis (GA-5) Bruce Braley (IA-1) Dave Loebsack (IA-2) Tom Latham (IA-4) Danny Davis (IL-7) Jan Schakowsky (IL-9) John Yarmuth (KY-3) Jim McGovern (MA-3) Dutch Ruppersberger (MD-2) Roscoe Bartlett (MD-6) Gary Peters (MI-9) Sander Levin (MI-12) Erik Paulsen (MN-3) Todd Akin (MO-2) Alan Nunnelee (MS-1) Bennie Thompson (MS-2) GK Butterfield (NC-1) Walter Jones (NC-3) Frank LoBiondo (NJ-2) Rush Holt (NJ-12) Shelley Berkley (NV-1) Joe Heck (NV-3) Peter King (NY-3) Bob Turner (NY-9) Carolyn Maloney (NY-14) Charles Rangel (NY-15) Elliot Engel (NY-17) Paul Tonko (NY-21) Maurice Hinchey (NY-22) Bill Owens (NY-23) Ann Marie Buerkle (NY-25) Chaka Fattah (PA-2) Jason Altmire (PA-4) Pat Meehan (PA-7) Tom Marino (PA-10) Allyson Schwartz (PA-13) Mike Doyle (PA-14) Steve Cohen (TN-9) Bill Flores (TX-17) Gene Green (TX-29) Jim Matheson (UT-2) Frank Wolf (VA-10) Rick Larsen (WA-2) Dave Reichert (WA-8) David McKinley (WV-1) Shelley Moore Capito (WV-2)

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! www.Pancan.org/takeaction


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!

KnowitFightitEndit.org - Together we are Strong!

Love to you all - Peace!  MK

http://www.pancan.org/email/gaa/3WC/3week_challenge_2012_week2.html

http://www.pancan.org/email/gaa/3WC/3week_challenge_2012_week2.html

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

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! www.Pancan.org/takeaction

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:   http://www.newsnet5.com/dpp/money/consumer/troubleshooter/clevelands-purplestride-event-raised-thousands-for-panceratic-cancer-research

ED'S ALL STAR DREAM TEAM IS TRULY THAT - A DREAM COME TRUE TEAM!