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

Tuesday, December 28, 2010

Chemo Chair Day 12/28/10

Hey Peeps,

I felt obligated to update the Blog... My mother's friends and some of my family apparently do not like it when I do not write regularly. Unfortunately, the Holiday's do not thrill me like so many other people and I hate to be a Debbie-Downer around this time of year. It's always about the "stuff", the stuff you give, the stuff you get, is there enough stuff, should I get more stuff, etc... Granted, I like gifts as much as the next girl, but really, it's just extra stress in what has already been an overly stressful year. Nine months, 9 months we've been dealing with this crap... It is too much on certain days and some days are fine. No, I do not want people to feel sorry for us or bad for us, it is what it is (sorry Judy, I know you hate that - but, well, it is)! I'm angry right now so it's hard to write with any kind of optimism. Ed is feeling o.k., his foot and ankle remain swollen because of his blood clot, he has nausea every day, he cannot sleep well because of the pain in his back/sacrum bone.... The radiation did a big fat nothing for that pain. He just plugs along the best he can, and 99% of the time he does it with a smile on his face.

Today Ed is in the chemo-chair again for 6 hours, then home with his chemo pump until Thursday at Noon, then he leaves me and Paige on Friday, New Years Eve for another long week without him. Truly, living like this has become almost unbearable for me, he is, of course, fine with our continued 1 week on/1 week off arrangement. It breaks my heart continuously to know that I loose so much time with him when the doctors continue to tell us he has so little left. Ah, sacrifice for our families.... being a responsible grown-up is just oodle's of fun! On the bright side, we may spend New Years Eve together and I get to spend Sunday with him for our Browns-Steelers game day.... I'm too excited about that! Hoping the weather warms up a little, but regardless, we have club seats (thank you Powell Family) so we can stay toasty warm. I ordered my Hillis Jersey, should have it on Thursday, so I will be all set. Mmmmmm, I love me some #40, en-how! I love football, it's just awesome. And, no, people, we do not know about the Super Bowl yet.... As soon as I know something - you will know something.... I realize it is just 5 short weeks away, keep those fingers crossed. The Dream Foundation did send the girls Christmas gifts, which was very cool. It really seems to be an outstanding organization and whether we get to Dallas or they send us on our 2nd request, a trip to New Orleans, they are all good in my book!

So, wishing you all a healthy and prosperous New Year, I say so long to 2010, and by the way, 2010 can kiss my a$$. Bring on 2011 - hopefully we will get to California to get tumor cell profiling done within the next few months.... We are checking into two labs (Rational Therapeutics and the Weisenthal Cancer Group) to see if they can test Ed's tumor cells to find a chemo that will actually work... wouldn't that be a nice new year gift! Again, fingers crossed!

Peace! Ed & MK xo

Wednesday, December 1, 2010

December 1, How is that even possible.

How is it possible that it is even December? How is it that almost 9 months ago we started on this horrific journey that led to the creation of this blog? How is it that someone like Ed could be sick when there are so many sicko's in the world who are living with no illness -or- only self-induced illness? How is that you finally get the gift of true love and then it can be taken away in a blink of an eye? How is it that I'm supposed to trust the higher power when He has done this to one of His most incredible creations? How is it that people can treat people like crap and still come up smelling like roses and the truth will forever be hidden? How is it that I can ramble on like this? O.K., I'm done with that.

I just want to thank the Powell family of Berea, Ohio. They are a St. Mary's family whose son, Andrew, and Paige were in Children's Letters to God together last year. They so graciously gifted Ed and myself club seats for the Jan. 2, 2011 Browns -v- Steelers game - with parking. How is it that just when you loose faith in people, people restore it in leaps and bounds - beyond imagination. So to Stephanie & Chris - our most sincere thanks!

Thanksgiving weekend was just a big old eating, drinking, family loving 4 days! With Dan, Lisa and Mark (and Jasmine) all home, it was wonderful to have everyone together for our special dinner. It was fantastic that Ed was able to have this Thanksgiving with us. We have never shared a Thanksgiving day together in our 5 years... for that I'm truly thankful. Plus THE Ohio State beat that nasty team from up north! Always makes for a great Saturday. Everybody sing, We don't give a damn about the whole state of Michigan, the whole state of Michigan, the whole state of Michigan.... 'cause we're from O-HIO ;)~

Ed will be completing his 10 days of radiation either on Dec. 7th or 8th. On 12/7 he will be having a medi-port installed (sounds like a car part). This will be used for his at home chemo hook-up. Can you say yucky. He will start his new chemo on 12/13; this is going to be a rough one. I guess it's supposed to be about 6 hours in the chair, then they hook up chemo to his medi-port and he continues at home with it for the next 48 hours - so about a 3 day process. He will get this every other week, or every 3rd week depending on how his body handles it. He will not be working and will be on short-term disability. He WILL go out of his mind... He LOVES to work (I know, he's insane). On the bright side, he has turned my very lovely girl living room into a man-cave of sorts; he bought me, yes, me, a 46" plasma flat-screen - just what every girl wants for Christmas (cough, cough *diamonds* cough, cough)... But, it is pretty cool. He will be watching ESPN a lot. I figure, if he is stuck on the couch, at least he will have a giant TV in my tiny living room to keep him company. I am going to get him a juicer, I am bound and determined to get some nutrients into that boy! So see, he gets me a TV I get him a kitchen appliance... turn around is fair play - no?!

Well, I will keep you all posted... Still have not heard anything from the Dream Foundation, but still keeping that wish alive for the Super Bowl in Dallas! Hopefully we will hear something next week.

Wishing each and everyone of you a very Merry Christmas and more importantly, a HEALTHY and Happy New Year.

Love Mary Kaye, Ed, Paige, Taylor & Kalista