Went to the Oncologist today.... Tomorrow is the last day (day #33) of radiation and then Ed's body will get the break it so richly deserves. One month with No chemo (13 rounds completed) and No radiation - just let the medicine that is in his body work it's magic for 4 long weeks. On October 21, 2010 Ed will have a CT Scan, Blood Work and then meet with Drs. Meropol (Oncologist) and Hardacre (Surgeon) to see what our next steps will be. We pray that surgery is next on our plate. Although the surgery is scary and not without great risk, it is truly the only hope for any longevity of life. I am supposed to be supporting him but I'm an emotional basket-case. Thank goodness Ed is the supportive, positive, strong man that he is. He makes me laugh even when I do not want to, he makes me cry because he CAN do that. I cannot imagine living without that gift in my life.
I pray that with Dorothy in heaven, she is talking God's ear off and convincing him to let Ed stay with us for quite a while. He has a pretty big fan club up there and I ask them each day to help us.
He was incredibly strong over the last 6 days, he is tired, but resting a little better these last two evenings... I think with his Mom's passing, there is a bit of peace as she suffered greatly and it was time. Frannie was incredibly strong as well. I will need Frannie more than ever in the coming months.
Once again - thank you to everyone for your support, prayers and positive energey. Ed's band will be playing out on Friday, Oct. 22, 2010 at the Euclid Tavern and our sincerest hope is that this will be a night to celebrate. In the meantime, he has his children, his step-daughter, his sister, his band, his friends, his boat and an incredibly devoted fiance' to keep him busy.
Oh yeah, and there is this little wedding we get to go to in Hilton Head soon that should be a ton of fun.... Four days on the beach cann't hurt.
Peace! xoxo MK & Ed xoxo
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
RIP my sweet man ... 1963 - 2011
Thursday, September 23, 2010
Friday, September 17, 2010
Dorothy Demyan passed away today
Ed and Frannie's Mom passed away this morning. She was in terrible pain and she is now at peace. She had terminal cancer. Ed and I have decided that we know she is happy now because she can finally see Joey after all this time.
xo All xo
xo All xo
Thursday, September 16, 2010
It's been a rough week...
Man... These weeks that Ed is in Brooklyn and I'm in the 'Ville... take forever... I'm bored out of my mind and I need a hobby or something to keep me busy. Well, that is when I'm not being a certain teenager girls driver, maid, cook, slave, etc... you get the picture.
Ed has five more radiation treatments to go, chemo on Monday; will see the Oncologist on Thursday 9/23, which is the last radiation day... Then we see where we go from there... LIMBO right now... no set day for next CT scan. I'd give my left leg if they would just do one now. The waiting is so hard for me. Of course, Mr. Fantastic just takes it all in stride. Oh, maybe because he bought a BOAT this week, oh, yes, a boat... On E-Bay... Did I mention when I write my book, the title is going to be "Men are Idiots, Even with Cancer". I told him, don't will that thing to me... give it to Furda. Then of course, there is his weekly band practice... Oy. If he gets any busier I'll forget what he looks like. Good thing I take lots of pictures.
We have had no solid news on his status at this point, and I HATE that. I like answers. There are none. It seems there won't be any for atleast another 4 weeks. On the bright side, we have our Hilton Head trip coming up in less than a month for my baby cousin's wedding. Yeah yeah. I could use some R&R on the beach, even if it is only a couple days. What I really need is two weeks on a ship with just Ed... and some cocktails... and some sun... you get it.
Well, I'll be back on when there is something to report. For now, Ed has a boat, that is all the news we have. Pray for us... Well, for my sanity anyways. :) xo all.
Ed has five more radiation treatments to go, chemo on Monday; will see the Oncologist on Thursday 9/23, which is the last radiation day... Then we see where we go from there... LIMBO right now... no set day for next CT scan. I'd give my left leg if they would just do one now. The waiting is so hard for me. Of course, Mr. Fantastic just takes it all in stride. Oh, maybe because he bought a BOAT this week, oh, yes, a boat... On E-Bay... Did I mention when I write my book, the title is going to be "Men are Idiots, Even with Cancer". I told him, don't will that thing to me... give it to Furda. Then of course, there is his weekly band practice... Oy. If he gets any busier I'll forget what he looks like. Good thing I take lots of pictures.
We have had no solid news on his status at this point, and I HATE that. I like answers. There are none. It seems there won't be any for atleast another 4 weeks. On the bright side, we have our Hilton Head trip coming up in less than a month for my baby cousin's wedding. Yeah yeah. I could use some R&R on the beach, even if it is only a couple days. What I really need is two weeks on a ship with just Ed... and some cocktails... and some sun... you get it.
Well, I'll be back on when there is something to report. For now, Ed has a boat, that is all the news we have. Pray for us... Well, for my sanity anyways. :) xo all.
Thursday, September 2, 2010
September 2010 - What's happening....
Hello Everyone.... It's been a few weeks, but there has not been much to tell other than Radiation everyday with weekly chemo sucks about as much as you could possibly imagine. Ed doesn't sleep well, has an upset stomach about 99.9% of the time, is very tired, and, well, just not our "Ed" that we all know and love so much. He has completed 19 days of radiation and will have his last day on 9/23/2010... Following that, he will be off of radiation for 1 month. Next, our hope is a CT scan will be done in late October (I guess this gives the tumor shrinkage time). He will most likely continue on weekly chemo, however. After CT scan in late October, they will determine if he is a candidate for surgery.... We can only hope/pray! Cancer is a bitch of a mistriss and I hate that she is steeling my man from me... I have not had nearly enough time with him, I want MORE. Oh, I'm selfish by the way.
Other than that, we are looking forward to Labor Day Weekend - actually starting tonight with the Browns-V-Bears, we are taking Paige & Kalista to their first NFL game, hopefully the weather holds out for us. Friday is, of course, High School Football night with Ed going to the Brooklyn game and myself going to the Strongsville-V-Mentor game. We will continue our weekend with Taste-of-Cleveland on Sat. late afternoon with Michael Stanley on stage that night - Yeah for me (not so much for Ed, sooooo not a Michael fan). However, Dar and I will be in the 6th row being goof-balls! Sunday we have a family/friend picnic and on Monday we get to meet Logan, Nanci's beautiful new baby boy :)~
As most of you know, Ed and I, we love, LOVE, football.... So today I get an e-mail from our Best Benefits group through work... 4 club seat tickets available for Browns home opener against KC on 9/19... 1/2 price.... Hooray - I got two... I'm so excited about that. Would have loved to snag the 4 they had for the 1/2/11 game against Pittsburgh, but they went within 2 minutes of the e-mail being sent out... I called 4 minutes after the e-mail was sent, ugh. Day late/Dollar short.
Well, Wishing you all a very Safe and Fun Labor Day Weekend.... Please keep up the prayers and sending that good karma to my sweet Edward... I believe it helps.
November is officially Pancreatic Cancer Awareness month.... check out pancan.org to see how you can help! On Friday, 9/10/2010 George Clooney is hosting a telethon to raise money for cancer research... You gotta love that beautiful man from Cincinnati Ohio! We will be at Paula's wedding on 9/10... but I'll DVR that show and see what we can do to help!
Love to you all...... MK & Ed & Girls xoxoxoxo
Other than that, we are looking forward to Labor Day Weekend - actually starting tonight with the Browns-V-Bears, we are taking Paige & Kalista to their first NFL game, hopefully the weather holds out for us. Friday is, of course, High School Football night with Ed going to the Brooklyn game and myself going to the Strongsville-V-Mentor game. We will continue our weekend with Taste-of-Cleveland on Sat. late afternoon with Michael Stanley on stage that night - Yeah for me (not so much for Ed, sooooo not a Michael fan). However, Dar and I will be in the 6th row being goof-balls! Sunday we have a family/friend picnic and on Monday we get to meet Logan, Nanci's beautiful new baby boy :)~
As most of you know, Ed and I, we love, LOVE, football.... So today I get an e-mail from our Best Benefits group through work... 4 club seat tickets available for Browns home opener against KC on 9/19... 1/2 price.... Hooray - I got two... I'm so excited about that. Would have loved to snag the 4 they had for the 1/2/11 game against Pittsburgh, but they went within 2 minutes of the e-mail being sent out... I called 4 minutes after the e-mail was sent, ugh. Day late/Dollar short.
Well, Wishing you all a very Safe and Fun Labor Day Weekend.... Please keep up the prayers and sending that good karma to my sweet Edward... I believe it helps.
November is officially Pancreatic Cancer Awareness month.... check out pancan.org to see how you can help! On Friday, 9/10/2010 George Clooney is hosting a telethon to raise money for cancer research... You gotta love that beautiful man from Cincinnati Ohio! We will be at Paula's wedding on 9/10... but I'll DVR that show and see what we can do to help!
Love to you all...... MK & Ed & Girls xoxoxoxo
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