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, April 26, 2011

New Chemo To Start This Week

Usual disclaimer - no spell check - Ugh!

On Tuesd., 4/19 Ed had a CT Scan on his entire mid-section; on Thursday 4/21 (our 5 yr. anniversary by the way) we met with the Oncologist for the results. It is quite funny how Ed and I hear the same words come out of the Doctor's mouth, but do not hear the same "meaning"; So folks, what you have all been waiting for... Ed's Pancreatic tumor has remained the same size, no change there, which the Doc felt was positive; there are new lesions on his lungs (I think he said about 4), small, but there none-the-less; there is one 1/2" lesion on his spleen; and there are "several" new small bone lesions - what the word "several" means, well, your guess is as good as mine. His liver is still clean, which is awesome, seeing that his liver is processing the gagillion medications he has to take & will be processing the new chemo med. Ed heard all this and thought it was pretty good news, I heard all this and was fairly devastated. We forgot to ask if the scans identified if his bone fracture had healed at all... Ed is meeting with a Pain Management specialist today (4/26) and he should find out what happened with the fracture. The bone cancer pain is just incredibly debilitating and we are hoping that the pain doc can find a way to decrease that pain without upping the already crazy amount of pain-med's he takes.

Also, either today or tomorrow, he will being a new chemo pill called Xeloda (capecitabine:
This is a two-week on, one week off treatment. He will take it in the morning and in the evening. We had received a message from a woman who's husband has had great success on this medication (22 months & still going) and we are desperately hoping/praying Ed can tolerate this medication and it will give us some more time. One never knows, if he hangs in there long enough, maybe another medical-break-through could happen and he could stay with us a bit longer than what the doctor had originally guess-timated. Seeing that in November he was given 6-9 months, and we are sitting at that 6 month mark RIGHT now - I am not ready to give up and neither is Ed.

His fishing trip really took a toll on him; he came back completely exhausted with two very swollen calves/feet - he was rockin' the c'ankles. Well, he rested all last week with his feet up and he is pretty much back to his old self. We had a lovely & relaxing Easter weekend. Drinks outside on Sat. night with the Furda's & Cigas' - that was an unexpected, but completely fun night. Easter was very chill, Ed had a nice big Easter Brunch and then napped quite a bit, which was just what he needed.

We leave in 18 days for our cruise out of San Juan and we couldn't be more excited! It will be 8 days of relaxation - no pressure to do anything but sit on deck and relax... We are only planning on doing one shore excursion in Barbados - which is snorkeling with sea turtles; if Ed doesn't feel up to it, he can just sit on the sail-boat & chill; All Good. I need this break more than anything... So Excited!

Ed continues to play with Newport on Tuesday evenings and they are working on recording so I am anticipating a full CD sometime soon - I am fairly excited to hear the finished product!

Thank you for continuing to keep us in your prayers - it is much appreciated.

Peace - Mk & Ed xo

Monday, April 25, 2011

Ohio - PurpleStride Cleveland 2011 - Home

HEY PEEPS.... If you are planning on joining us for Purple Stride on June 18th you must register on-line ASAP... Everyone needs to be registered, even the kids! Ages 3 & up all need to be registered & get a Zoo ticket for admission to the event which includes the entire day at the Zoo after the walk/run. Don't Wait! Registration on day of event goes up by $10 and you won't be guaranteed your awesome t-shirt!

Ohio - PurpleStride Cleveland 2011 - Home

Tuesday, April 12, 2011

Deagans in Lakewood - Awesome!

Here is the link:

Well, seeing that after I blogged about the B-Spot in Strongsville, and that post has already had 71 page views, I thought, hmmmmm, I might as well do another little plug.

Last Thursday, Ed and I attended a fund-raiser for our upcoming Purple Stride Event at Deagans in Lakewood - What a grand experience. They have a small back room and we had it filled to the gill! Thank You Kelly for putting on this oustanding event. She had great prizes and the people there couldn't have been more supportive.

But, let me tell you, the food that was served and the fun beer tasting made the event even more special. The owner seemed quite young (but then again, as I get older, everyone else seems younger) and he was a very gracious host. We were able to taste 4 different beers, of course, I don't remember the names of them. One sounded something like "heffa-vice-a", yeah, I know that is not even close to how it is spelled. I liked that one very much and as most of you know, I don't veer to far from my Miller Lite! The other beer I truly enjoyed was a Milk-Stout something - again, I don't remember, I'm old. But I tell, ya, I will be ordering one of those at the B-Spot next time I'm there cause I hear they have it also. It doesn't have carbination and it's a strange sensation. The food served that night was really great as well. There was a fig wrapped in bacon thingy, I'll eat anything if bacon is involved, it was quite good. Ed really enjoyed the wings and of course the cheese platter with some yummy meats was awesome.

Just thought I'd give them a plug seeing as they had to put up with us that night and it was truly a great evening!

So thanks Deagans! Maybe this will get you a few more visitors.

Oh, and Ed is having an alright time in the Key's this week. He has had some major pain flair ups, again reaching as high as a 10 on the pain scale. He was on a fishing charter yesterday with the guys and he got sea-sick. He wound up taking a 5 hour nap on the boat - that was one expensive nap. He said it was the best sleep he has had in over 3 months and he would gladly pay again for a nap like that - ha. They did catch two fish they were able to have for dinner last night. Today he and Michael are on a smaller boat doing some more fishing, hopefully he will actually be able to cast a line today! Oh, and they gave Rob a mohawk, yeah, these are 48 year old men, too funny! He misses me and the kids very much and leaves me the most awesome messages. I told him 7 nights was too many, but does he listen to me, nooooooo. :)~

When he gets back, I'm making him take me back to the Bspot for one of those vanilla-apple-pie-bacon shakes. I am dying to try that thing! OH,and one of those milk-beers, Ha.

Peace all - MK

Friday, April 8, 2011

B-Spot Strongsville - Awesome!

Usual Disclaimer - no spell check, expect errors & type-o's folks:

Oh, what a lovely day for a burger man. Yes, I know it's Lent; Yes, I know we should not have been eating meat today; Yes, I know most of you don't give a crap. But what a great lunch. I had the pink-squirrel, which was fab - u - lous, the Lola fries and the Brueben burger - best burger I have had since back in the day's of stopping at Whitey's on the way to Blossom - circa mid '80's! Ed had the simple salad, which he enjoyed very much, currently his taste-buds are all into lettuce. He also ordered a Brat, but it wasn't agreeing with him. No prob's there - brought home the leftovers and Paige had them gone within 15 min's of getting off the bus. I am too stoked to have a Michael Symon joint in our neighborhood. I love, love Lolita, have planned two business dinners there over the years for work in the private room and they were both just awesome! So Hooray Chef Symon and welcome to the 'ville!

I have been so excited about the Bspot opening in Strongsville that I knew I wanted to try it immediately! So, seeing that it has been open all of 3 days, I think we did pretty well on getting there. We tried to plan it so our wait would be minimal, I took 1/2 day off from work so Ed and I could have a neat lunch experience. And, neat it was! Our server was just a super, sweet bubbly blonde - she must have thought I was crazy, I was so giddy when I ordered!

Ed leaves all of us behind in chilly C-town tomorrow to go to the FL, Keys for 7 glorious days of sun with 7 of his boys. Needless to say, I am not thrilled about this little adventure. I worry endlessly about him when I am not around him, I know he will be fine, but my worry-gene is in super-high gear right now. On the bright-side, he did see his Oncologist yesterday and they were impressed with how well he is maintaining his weight and that he still, *wait for it* "looks so good". We all know how much I love it when people say that. He will get a CT when he returns from FL, then will reconsider starting another round of Chemo. He got a new prescrption for a higher does pain killer, hoping this works better than the last one. It will be difficult for him to sit through his upcoming flights if it doesn't work well. Rob and Cigar, you are the two I trust the most to be his "Mom", make sure he rests and remind him to take his Creon when he eats! Love you boys much, I know Ed is really excited to hit the road tomorrow. You know you love someone when you are willing to take them to the airport at 4:30 a.m.! And love that boy I do.

So, again, not much on the disease today, as things have not changed much recently - the pain is horrific, some points being as high as a 10 - the sleep doesn't come, and when it does, his phone will always ring - he eats as much as he can, when he can - and he remains fairly positive these days even though I know he is exhausted. Our hope with the new pain meds is for him to get some much needed & solid sleep. I know the Vitamin D from the warm FL sun will be great therapy for him as well.

Oh, and Ed's All Star Dream Team has raised $1200 already for our Purple Stride event at the Cleveland Zoo on June 18th! The link to our team is at the top of the page to the right of the posts - join us if you can!

With Love & Blessings - Ed and MK