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

1 comment:

  1. Ed & MK -
    Have fun at the Super Bowl ! Go Packers, beat those hated Squealers!

    Have you checked into three great NATURAL methods of beating cancer, those that boost the immune system rather than weakening it through radiation and chemo? Two things to investigate - Dr. Johanna Budwig protocol / diet - involves cutting out all processed foods, eating a blended cottage cheese & flaxseed oil mixture, drinking sauerkraut juice, etc. There is a Yahoo discussion group called FlaxSeedOil2 that thousands belong to and have had great success treating even terminal Stage IV cancer. A great starting place is this website which explains it, has testimonials etc:

    In addition, Bill Henderson's website is fabulous, and I have his excellent book Cancer-Free -- Your Guide to Gentle, Non-toxic Healing. Here is Bills website:

    Same type of info - strengthen the immune system instead of weakening it through supplements, diet, etc.

    Finally, Robyn Openshaw's has a wealth of information about eating raw fruits & veggies and she talks about her relative (her Aunt I believe) that beat cancer using green smoothies.

    Best of luck and again, enjoy the Super Bowl !
    Tom J, Erie PA
    Browns season ticket holder


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