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, November 17, 2010

And so the waiting continues.....

Hi Everyone,

It's just been a crazy roller-coaster ride these last two weeks. Three days away from possible life saving surgery, only to discover the bone cancer and then the blood clot that developed in Ed's left leg (and it runs the entire length of his leg from the femoral vein into his calf - huge). The addition of two Lovenox (blood thinner) injections a day has been added to his other medications. How much more can he handle, right now, who knows?!

On the flip side of that coin, Newport's show on 11/13 at The Winchester in Lakewood was incredible. There were about 150 of the bands closest friends and family in attendance. Ed had the true "concert" experience and was just thrilled that he could do the set. Having our very dear friends son, Rex Larkman, on stage to play the drums for "Eighteen" was thrilling to say the least! Rex is a 14 year-old Rock God already :) Some people who had never seen Ed play out before were truly impressed, this quiet, humble, kind, sweet extraordinary man turns into this dark, deep, guitar mad-man on stage. One good friend dubbed him Clark Kent.... "Who Knew Ed had that side"... I know the feeling, the first time I saw him play out in May of 2006 I was quite astonished myself. He brings it on stage. Unfortunately, due to the blood clot, he moved around less than he normally would. He paid the price on Sunday as his foot ballooned up and the pain increased in the left leg quite a bit. But, he wouldn't have traded that night for anything.

Ed went to get the new markings on his abdomen for the next round of radiation for the bone cancer... No news yet on when that will begin. As far as I'm concerned, it needed to start YESTERDAY... My feelings of "urgency" do not seem to be all that important to the medical folks - UGH. It's very frustrating waiting. But, that is how it is and I cannot change the system. Ed sometimes is too polite, I'm trying to coach him into being more of a "squeaky wheel", he's getting better. Unfortunately, or fortunately, depending on how you look at it, he is just too kind and has patience beyond belief. Me, I have ZERO patience. To my family and good friends reading this, you know this to be the most honest statement of the decade.

Once the 10 days of radiation are completed, he will start chemotherapy once again. This chemo will be aggressive. It is a combination of Irinotecan, Oxaliplatin and Fluorouracil (5-FU) (oh, yeah, FU). He will have a medi-port inserted. He will go to UH and have about 6 hrs. of Chemo on site, then a pump will be attached to his medi-port and he will continue with 48 more hrs. of chemo at home. Then he will have the pump disconnected and be off chemo for about 11 days. It is an every-other week treatment that should prove to be a bit of a challenge. Do I think he can handle this, I DO. Does he think he can handle it, not sure yet. Do I think he can beat this 6-9 month life expectancy and hang in there longer, I DO. Does he, not sure yet. Will he, I think so. You got all that!

Ironically, when we first started going out 4 1/2 years ago, I always had a sense of urgency about us living together and spending a lot of time together. Somewhere in my gut I always felt, for some reason, that I would not have enough time with him (this of course always drove him crazy). We discussed this a little yesterday, he thinks I'm insane obviously. I have made up my mind to stop being a cry-baby for as long as possible and just enjoy whatever time we have together. If nothing, Ed has tried teaching me to be somewhat optimistic, even though it is truly against my nature. I'm a "realist" and people tell me that that is actually being a pessimist... I disagree. I may not express when I'm feeling optimistic, only because I know that when you tell God your plans, he will throw a monkey wrench into them every single time. This is so we remember He is really in charge. One of Ed's favorite things to tell me is keep my expectations low, then disappointment isn't as bad as it might be. I'm learning to keep things on a more even keel, avoid the high-highs and the low-lows - keep yourself on an emotional middle-ground. I realize I will have trouble with this, but I am certainly going to try.

We love you all much and continue to ask you to check out PANCAN.ORG and see how you can help. Research is sorely lacking for pancreatic cancer and this is just unacceptable. The web-site makes it SOOOO easy for you to help. You click a few buttons and you can address your local and state representatives to help back crucial bills for research and funding decisions. It's time to take the purple to the streets and fight this monster. As one of Ed's cancer care nurses said on Friday, Pancreatic Cancer is where Breast Cancer was 40 years ago - this needs to change. There is a 90% survival rate at the 5 year mark for Breast Cancer patients, for pancreatic it is 6%, 75% of pancreatic cancer patients do not even survive one year.... This is so wrong.

We will continue to keep you all posted as Ed progresses in this treatment. Also, Alicia Booth, the Chanel 5 Health Reporter, is coming to my house tomorrow afternoon (11/18) to interview us on bringing awareness to this important cause. It is November - It is Pancreatic Cancer Awareness Month. We will let everyone know when the interview will be on TV. I'm fairly stressed about this.

Wishing you all good health over the upcoming Holiday Season... Enjoy time with your loved ones, Ed and MaryKaye

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