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 24, 2010

For Celiac Disease / Gluton Free

Alicia Booth has done a wonderful story for people needing gluten-free food... I post this in Honor of my Sweet and Adorable Aunt Dorothy in Chicago... She's a doll and has to battle this horrific disease every day:


Happy Thanksgiving Everyone........... Love MK & Ed

Thursday, November 18, 2010

Chanel 5 Interview with Alicia Booth

Today we had our interview with Alicia Booth, the News Chanel 5 Health Reporter. What a great experience it was. She made things as easy for us as she could have! I was of course a nervous wreck, Ed was his normal, calm, fantastic self! Hoping that I don't look like a big duffus tomorrow!

Our interview should air, tomorrow, Friday - Nov. 19, 2010 on the 5:00 evening news.
Make sure to set those DVR's!

I would like to personally thank my good friend, Barbie B., for helping make today possible, along with her boss, Jill Manuel and the gracious Alicia Booth.

We need to bring this cancer to the public eye, improve research funding, and ultimately, improve lives!

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

Friday, November 5, 2010

No surgery - misinformation given earlier today.

Sorry everyone, turns out the Surgeons secretary jumped the gun, the surgeon called about 7:40 p.m. tonight, Ed has bone cancer. No surgery. Needless to say, we are devestated right now.

Total Pancreatectomy - Monday 11/8/2010

Total Pancreatectomy

A total pancreatectomy is performed in the rare (that's Ed - Rare) situation that the tumor has invaded the head, neck, and tail of the pancreas. Similar to a Whipple procedure, the gallbladder, part of the duodenum which is the uppermost part of the small intestine, bottom portion of the stomach called the pylorus, and local lymph nodes are removed along with the entire pancreas. The spleen will also be removed.

Because the entire pancreas is removed in a total pancreatectomy, the person will be diabetic after surgery and must use insulin to control blood sugar level. The patient will also need to take pancreatic enzyme supplements with meals in order to properly digest food.

O.K. people - We Are On For Surgery Monday 11/8/2010.... Thus meaning that the CT-Biopsy for his pelvic bone was NEGATIVE for the big C.... Although that dept. didn't contact Ed personally, the call from the surgeons office telling us we had to be downtown by 6 a.m. on Monday pretty much confirmed the No Cancer diagnosis for the bone.

O M G...... I'm scared, I'm happy, I'm freaked-out, I'm sad, I'm elated... So, anyone wanting to have drinks with us - we will be down at Dickey's for our monthly couples bowling tomorrow night around 7 p.m.'ish... Obviously, I'll be bowling alone so I could use a partner.... ***crickets*** Anyone?!

Will keep you posted next week on how things are going?! Deep breaths,,,, Deep breaths,,,, Thank you all for your continued support, prayers & good wishes!!!!

MK & Ed

Tuesday, November 2, 2010

Set backs, set backs, set backs

Today - 11/2/2010.......... A day of hope for many politicians, a day of more fear for my household.

Ed has been in tremendous pain for the last 3 weeks, the last 5 days have been down right unbearable. As we went to UH today for pre-admission testing because Monday, 11/8, was "supposed" to be the big surgery day, they did an emergency spinal block for him. He slept this evening for about 2 hrs., the most amount of consecutive sleep he has had in over a week. It has been night-mare'ish to say the least.

So, after blood work, EKG, chest-exrays, pre-admission paper work and the spinal... we finally get to the surgeons office about 1:30 to find out exactly what to expect on Monday... STOP.... Well, Ed had an MRI last week to figure out what was causing his back pain, turns out it "could be", could be, cancer that has metastasized from his pancreatic tumor. W T F MAN. Are you even kidding me. Less than a week from surgery and this is the news we get. So, Ed will have a CT-biopsy on his pelvic bone on Thursday 11/4 and we are hoping that the results will be rushed. Here are the scenarios:

1) Bone lesion is just a degenerative area, not cancer - Surgery to go forward, which will include removal of pancreas and most probably, spleen/gallbladder/partial duodenal bypass,and some stomach; 7-14 days in hospital; about 3 more weeks recovery at home, this assuming there are no complications. This surgery has a 20-50% complication rate ranging from very minor to highly serious. You can google pancreas removal (pancreaectomy) and see all kinds of fun stuff.

2) Bone lesion is Cancer - No surgery; ever; just try and manage it with chemo and enjoy life the best you can.

So, we are back in a wait & see pattern for the next few days. On the plus side, he should finally be able to get some much needed rest. It has been HELL to say the least.

And Finally, on our way home from UH I get a phone call from my Aunt - my Mom was admitted to Fairview Hospital today with an irregular heart beat, all clammy and just a "something is very wrong" kinda feeling. She had a CT scann on her aeorta (sp?) and is resting; Not a heart-attack; but not sure if something screwy is going on with her pace-maker?! Good Times. Glad I drink beer!

Well, that is it in a nut shell..... Will let you all know what is going on as soon as we know what is going on!

Ed says - hey, if I don't have surgery - I get to play out with Newport on 11/13 at the Winchester... The Show Must Go On!

Wishing you all good health - more than you could possibly imagine.