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

Wednesday, May 30, 2012

What an Awesome Day!

It was such a bitter sweet long weekend...  This was Ed's weekend, This was the kick off to summer which he loved so much...  This was hangin' out with friends and fishing and sitting in the sun... This was everything that he was.  There were a lot of tears this weekend too.  But there was love and friendship and all the good things that summer in Cleveland brings!  No ribs, but I'll hit one of the burn-offs soon enough!  And it was HOT, too hot for me - Ed would have loved it!  It was never "too" hot for him...  he hated the cold more than anyone I've ever known...  even my re-located-to-the-South-cause-I-hate-winter cousins!  Speaking of which, our new family member should arrive this week....  Can't wait to hear the good news that baby-boy R has been deposited safely on earth in Charlotte, NC....  great excuse to go for an 8 hour drive!

So happy that I also finished my goodies for our PurpleStride 2012 Team Members...  I may need a team co-captain to help distribute said goodies to the team while I'm doing whatever it is necessary that morning to be ready for our big event!  Our Team hit the #59 mark and I could not be more thrilled (well, I could be - like, if we hit 80 and topped last years number, but I know that is not a realistic number this year - maybe 2013).   I cannot believe we are sooo close to the day!  Excited and nervous and anxious and excited, and did I say, excited!  One small issue, hoping it turns into a non-issue, we will see.  Can't predict the future now can we.  Everything will work out just like it is supposed too!  Because I have faith ...

The Kid is in the midst of the spring soccer tournament, and are these gal's playing some tough ball... I mean to tell you that yesterday that team played about as hard as you can for a 1-0 victory.  All very exciting...  They will play another game Thursday, and looks like they will be making the Championship game on Friday evening - she is so excited (it's really quite sweet to see these teenagers act like little kids sometimes).  She also has orientation on Thursday evening into her vocational program for her Jr. year...  we are very excited and nervous about this as well...  hope it goes fast so she can be at the soccer field before that game starts...  nothing like showing up to orientation in your soccer uniform & cleats.  Never a dull moment.

I worked my second farmers market (Tremont Farmers Market, Cleveland) yesterday to promote awareness and education for the Pancreatic Cancer Action Network and it went really well.  I figure by the time the last market rolls around in October, I will have it down to a science.  Two of my sweet friends stopped by to say "hello" and I love when that happens!  Ray was nice enough to snap a photo!  It was a great evening all around from market to soccer game!

Happy Summer everyone....  Nothing like being on the North Coast in summer time!  MK

PS - still haven't taken his cell number out of my phone, just can't hit that delete button, every time I try I hit cancel... soon though, soon.

Friday, May 25, 2012

Bad Day, just a Bad Day!

I had one of the worst days imaginable on Thursday;  Started with 2 data-bases at work - not "working" - so it made it really difficult for me to "work" .... Frustrating beyond belief.  But, first 9 hours of the day - done, time to move on to the the after work activities and should be smooth sailing............  never assume.

Earlier in the day I was excited because I received notification that Ed's cell will finally be disconnected.  However, T-Mobile cannot follow the simplest of instructions (yet again) to turn off Ed's phone / leave mine on and put the bill in my name....  I would appreciate comments regarding the difficulty of this...  If you all understand the following instructions, I'd appreciate you letting me know, cause it seems fairly simple to me?!...  I could not have spelled it out any more clearly - AND this was per T-Mobile's instructions I might add:

1) Turn Off Phone # (216) 555.5555 - person connected to phone deceased - see attached death certificate and obituary!
2) Put Bill in the name of ME
3) DO NOT mess with Phone # (440) 555.5555

(O.K., let's face it - I worded my fax a bit more professionally - but really it WAS that clear and simple)

Of Course, they turned off MY phone - and left Ed's on...  last time I dealt with T-Mobile, right after Ed passed, they gave his number a new 2 year plan - my dead fiance' had a new 2 year contract... I just wanted his phone "on" for at least 6 months so I could make sure all creditors & what-not could be directed to his estate attorney...  What a nightmare.  They did, however, manage to get the bill to my address so I could continue to pay it.....  funny how when it came to the money they were right on!

So, I leave work - can't call the Kid cause I realize half way home that MY phone is turned off - rush to pick her up to get her to a Doctors appointment at 5 p.m. - get to the Dr.'s office and practically throw her out of the car so I can speed off to the T-Mobile store in my community...  all so annoying...  Anyway, Happy ending (oh, that sounds dirty)!   WITH A HUGE Shout Out to the T-Mobile Store in Strongsville Ohio for working with your own customer service people, getting my phone turned back on and finally disconnecting Ed's phone...   It was bitter-sweet....  On one hand, it's another thing "done" - On the other hand - it's another thing "done".   So now I guess I have to take his number out of my phone - this makes me cry...  I don't know why - it just does.

Next, pick up Kid from Doctors office and have to zoom home to change for a soccer tourny game...  Then, the Kid says, my friend needs to eat some dinner - grrrrr  (because of course we had to have a witness to all this madness) - o.k., But - I have a conference call at 6:30 p.m. with California and my sweet new friend Sarah to discuss a Radio interview we are getting ready to tape for WDOK in about 10 days...  But, hey, I figure - I can let the Kid drive - she passed her class, has had her temps for 6 months - it's all good - She'll drive and I'll have my phone conference in the car - this should work, right!  Um, NO... after we pull into Sheets for a very healthy dinner for the Kid's friend - the Kid decides that it would be a GREAT idea to pull out into traffic - not cutting off 1 car - but crossing two lanes & cutting off 2 cars... needless to say the folks on my conference call received quite an ear full...  I got off the conference call immediately and was just happy to get to the fields!  Time to sit outside & watch some soccer & study my Pancreatic Cancer Action Network Facts - and it was beautiful outside!  The soccer game was WON - and the Kid won't be driving me again for a while...   Finally got home about 9 p.m. at night - and instead of dinner - I drank 3 beers. 

The End.  Happy, Safe Memorial Day Weekend - Hug a Vet - they make our life style possible!

Sunday, May 20, 2012

4 weeks till PurpleStride

Well folks, it has been crazy in the Pancreatic Cancer Action Network world... Here in Cleveland we have so much going on this summer... Of course we have PurpleStride Cleveland coming up in less than 4 weeks... Ed's All Stars are rocking it! We have raised over $3,000 at this point, but I would be delirious if we hit the $5K mark again this year! No donation is too small... ... Join us for this incredible day of hope and inspiration and give the next generation a cure!  Ed's All Star Dream Team would love your support! Just think - if 10 people who read this donate $10 - That $100 will make a difference!

Personally, I will be traveling to Washington, D.C. June 25 & 26 for Advocacy Day and support the Pancreatic Cancer Action Network while representing Ohio... Learn more here:

You can call your State representatives on Tuesday, June 26 from the comfort of your home and help change the future! It really doesn't get any easier than that.

We are also gearing up for Purple at Progressive, a day of awareness with the Cleveland Indians! Sunday, August 26 against the New York Yankees at 1:05. This will be another Cleveland milestone in the fight against Pancreatic Cancer. I am beyond excited to bring our fight to major league baseball!   Click on the link to see more details & order your tickets:

And lastly, on September 30, 2012 ... It will be our PurpleLight Vigil of Hope to honor all who battle, have won their battle and to honor those that have lost their battle to this Living, Breathing Monster. We are considering the Tremont Area in Cleveland at this time, which will make for a beautiful setting to remember our loved ones!

On a personal note, the Kid will make her Confirmation on Wed. and fulfill her promise to Ed to complete her sacraments.   Our church has traditionally confirmed in the 10th grade, which actually had been kind of nice - as these kids really are "young adults".  After this year, they will switch to 8th grade, which is more traditional - but I loved seeing all the Kids class mates from St. Mary's and it was nice for them to reconnect as they have all gone to so many different high schools.  She had an outstanding year in school and will officially be a Junior as of tomorrow!  Now she just needs to get a job to supplement that baby-sitting income!

Happy summer folks... I miss Ed every day and will fight the battle for him, which was what he asked of me... And I am glad to do it! MK

Wednesday, May 9, 2012

MetroHealth electrophysiologist Rosenbaum passes away

Another brilliant Cleveland Physician lost to Pancreatic Cancer.  When Steve Jobs and someone who studied at Harvard can't fight this disease, how can any of us really.

MetroHealth electrophysiologist Rosenbaum passes away

What is it truly going to take to wake up the government here in the US, and, the rest of the world. 

How many have to die in a single year to make it worth paying attention to.  I guarantee you if a President or his wife was diagnosed with PC - maybe then something would change?

40 Years With No Change ....

4 0   Y E A R S  ...  W I T H   ...  N O ... 
C H A N G E .... 

After losing someone I considered a friend this week (a 49 year old ANGEL, Wife and Mother), I am pretty raw emotionally...  this story just kind of set me off.

When brilliant minds with loads of cash can't win the battle what real hope does that leave the rest of us normal schmucks, seriously?! 

I think I'm going to file a law suite against the NCI for ignoring our disease...  I mean, is legal action all anyone understands anymore - I am so frustrated on this day, so frustrated.

So Please - won't you help us raise money to fund research and support the patients/families/caregivers fighting this nightmare of a disease?! - pick a team - any team - I don't really care - just get involved or make a donation.

Next post will be happier, I promise!  Peace - MK

Friday, May 4, 2012

45 Days to PurpleStride Cleveland - THEN... D.C.

O M G..........   Less than 45 Days until We Turn Our Zoo Purple!  PurpleStride Cleveland 2012 - - I am so excited to celebrate the love of my life and honor all who are/have battled this monster of a disease, their families & caregivers!

And then, after PurpleStride, I am off to Washington, D.C. to make Ed's voice heard on the hill along with over 500 average citizens fighting to make a difference! 

Back in November of 2010, when we were hopeful, before Ed's surgery was canceled, this was one of the things he desperately wanted to do - make it to D.C. for Advocacy Day - it wasn't to be....... But you bet your lilly-white behind - He Will Be Heard!

I know, I know - You all want me to shut up about it already.......  NOT gonna happen!   I will push & push & push until the Government and the NCI recognize the need to step up the fight against this horrific disease.  In 53 days I will be in Washington, D.C. to encourage our countries leaders to pass the Pancreatic Cancer Research and Education Act...  Here it is in a nutshell:

Pancreatic Cancer Research and Education Act

(S. 362 / H.R. 733).
This legislation would require the National Cancer Institute (NCI) to develop a long-term and comprehensive strategic plan for pancreatic cancer research which would help us reach our goal of doubling survival rates by 2020.

Things need to change - Things need to change NOW.  Just this week there were two horrific stories in the news, one about a Kindergarten student in Southern Illinois facing Stage IV pancreatic cancer, and another, about a young girl - 17 yrs. old - losing her battle with Pancreatic Cancer...   In one week these two stories broke...  This disease needs major attention - this disease really does need AWARENESS.  It IS the silent killer and we need the government and the medical community to step up and pay attention!

I have never been more proud to be a part of any organization (well, maybe when I had my first job at Memphis Kiddie Park when I was 15?!) ....  The Pancreatic Cancer Action Network is going to make the difference - we will be the voice of change - Know It... Fight It... End It...   Ya know what, I have a big ol' mouth and a big ol' attitude and I intend to use it.

Edward is missed so much that there are not enough words to describe it.  But I refuse to let this gentle, giving, caring soul be forgotten...  He was the most incredible man and I had the honor and privilege to know and love him deeply.  Yesterday I had to right a small paragraph about his journey and battle with this disease - it brought back so many emotions - most especially upsetting was thinking about the night we received the news that his surgery was canceled - It made me cry a lot yesterday.  But not today - today it's about PurpleStride and getting ready for Washington.

Edward James, you live in so many of our hearts and I promised you I'd fight - and I am...  Now, if we could just get your damn team to double digits, I would feel like we accomplished your goal for PS2012!   So, out there in cyber-space... consider joining our team or making a small donation...  Ed's All Star Dream Team -!

Peace & Good Health - MK

What a Handsome Man.....  RIP Baby - Hope you are enjoying that Rock 'N Roll Heaven!  Me xoxo