Thursday, September 29, 2011

Purple Light - November 20, 2011

volunteer for progress during

National pancreatic cancer awareness month in November

Cleveland, OH (November, 2011 ) - The Cleveland Affiliate of the Pancreatic Cancer Action Network, the national organization creating hope in a comprehensive way through research, patient support, community outreach and advocacy for a cure, is raising awareness about the fourth leading cause of cancer death in the United States during National Pancreatic Cancer Awareness Month in November. Local leaders of the organization are inviting more citizens to Volunteer for Progress by joining their efforts to advance research, support patients and create hope for the pancreatic cancer community.

“Pancreatic cancer is among the deadliest cancers in our country with a five year survival rate of just six percent. Volunteers with the Cleveland Affiliate of the Pancreatic Cancer Action Network are doing their part in helping to support the Pancreatic Cancer Action Network in its bold new goal to double the survival rate for pancreatic cancer by 2020. The Cleveland Affiliate is intensifying its efforts to raise awareness in the community, host fundraising events and contact our elected officials to gain support for the Pancreatic Cancer Research and Education Act (S. 362/ H.R. 733),” stated Megan Graham, Volunteer and Event Coordinator, Cleveland Affiliate. “But, we need help. We need more members of the community to join our efforts and Volunteer for Progress. Together we can know, fight and end this deadly disease.”

All members of the community are invited to participate in the following activities during National Pancreatic Cancer Awareness Month:

PurpleLight - On November 20, 2011 the Cleveland Affiliate of the Pancreatic Cancer Action Network will join thousands of people across the country to participate in one of over 45 PurpleLight Vigil for Hope events. The candlelight vigil will honor those who have fought pancreatic cancer and celebrate the survivors, while raising community awareness about the disease. To register, and submit the name you would like read during the ceremony, please visit www.purplelight.org

Tempur-Pedic® 2011 Hugs Back Campaign: Feel the Difference. Make a Difference. - During the month of November Tempur-Pedic has committed to contribute $10 to the Pancreatic Cancer Action Network for every individual who tests a Tempur-Pedic mattress at a participating authorized retailer. To find a retailer visit www.tempurpedic.com
Z Gallerie Awareness Month Shopping Weekend – In memory of Shirley Zeiden, mother of the company’s founders, Z Gallerie will donate 10 percent sales from November 5 through November 7. Shop or find a store near you at www.zgallerie.com.

This year, over 44,000 Americans will be diagnosed with pancreatic cancer and nearly 38,000 will die. In fact,
74 percent of patients die within the first year of diagnosis. The survival rate has not substantially improved in over forty years because early detection tools and effective treatments have yet to be developed. Despite these sobering statistics, just two percent of the National Cancer Institute’s (NCI) federal research funding is allocated to pancreatic cancer. Once enacted and fully funded, Pancreatic Cancer Research and Education Act (S. 362/ H.R. 733) will ensure that the NCI develops a long-term comprehensive strategic plan for developing early diagnostics and treatment options that will increase the survival rate for pancreatic cancer patients.

Pancreatic cancer has claimed the lives of many public figures, including actor Patrick Swayze, Carnegie Mellon University Professor and author of the Last Lecture, Dr. Randy Pausch, actor Michael Landon, and opera tenor Luciano Pavarotti.

To learn more about the Pancreatic Cancer Action Network and the Cleveland Affiliate visit:

www.knowitfightitendit.org.

About the Pancreatic Cancer Action Network

The Pancreatic Cancer Action Network is the national organization creating hope in a comprehensive way through research, patient support, community outreach and advocacy for a cure. The organization is leading the way to increase the survival rate for people diagnosed with this devastating disease through a bold initiative —The Vision of Progress: Double the Pancreatic Cancer Survival Rate by 2020. Together, we can know, fight and end pancreatic cancer by intensifying our efforts to heighten awareness, raise funds for comprehensive private research, and advocate for dedicated federal research to advance early diagnostics, better treatments and increase chances of survival.

Contact:

Mary Kaye Mackulin

Media Rep – Cleveland Affiliate
Pancreatic Cancer Action Network
e-mail: mmackulin@pancanvolunteer.org

Tuesday, September 27, 2011

Fund Raiser in Scottsdale AZ with Jim McMahon

If anyone reading this lives in Scottsdale, AZ - You should get a ticket - support this fund raiser - and you will have a BLAST. I guarantee it - if you don't have a blast - I will refund your ticket price. (Actually, no I won't - if I could I would, but if I could do that - I'd be at the fund raiser myself!)

http://www.prweb.com/releases/Shpoonkle/SponsorMusicJam/prweb8815364.htm

Thursday, September 22, 2011

Broken Heart

Well, I know that it is going to shock NO ONE, when I say my heart is just so broken right now.

I will be going to get Ed's bowling shirt tonight, and so do NOT want to go into HIS house. I know I am going to encounter sights that will just kill me, but again, I need to muster up the "it is what it is" 'tude. I guess I'm thankful that I can even get the shirt, I'm going to have it matted & framed with a picture of him & Dickey. Then I'm hoping Greg can hang it somewhere at the lanes. I think everybody would really enjoy that - I know Ed would love to be hangin' out at Dickey's Lanes with his friends.

I am missing his voice more than ever right now. I know this will pass, but it's not passing quickly enough. It is funny, Ed had a very strong feeling about how things would occur once he passed, and so far, almost everything he thought would happen has occurred in the past 5 weeks. It's funny how people's tunes change when cold-hard-cash comes into play. I would love to say that if I received a big fat gov't check that I'd be fine and oh so "life is good" - but I doubt it would matter. It was never about money or stuff with us, it was always about time - the only thing he truly did not receive enough of. He always knew that when I called him (or vice-a-verse) it wasn't to say - "hey, I need...." it was always just to hear each other and catch up on our day and be supportive of what the other was going through at that particular moment. We truly just enjoyed the hell out of each other, it was rare, it is gone.

The angry, bitter taste I have in my mouth will eventually fade away and this constant feeling of vomiting will also eventually be gone.... however, some feelings I have, I know I will have forever. For all the love, joy and happiness Edward brought into my life, the flip side of what he introduced me to has been one of the ugliest things I have ever witnessed and nothing can change that. I will probably never trust anyone again, 'cause that is just how I role. I certainly know that finding someone I get along with that well again, is about a 1 in a gazillion chance. So, I just get out of bed every day, breath and move forward, slowly, but still forward.

So for every person who continues to remind me how strong I am - I am not. I am just normal. I fought for Edward because I loved him unconditionally, he is gone, there is no more fight left in me right now. Strength will come again, and I will continue to battle this f'ing disease, but right now I am exhausted, physically, mentally and emotionally.

Sunday, September 18, 2011

I Love Carrie Bradshaw

Sex In The City Episode - The Thank You Note.... Carrie Bradshaw is sad about Big marrying a younger, more sophisticated woman... Ah, but you cannot buy brains people, she receives a thank you note from Natasha (I think that was her name) and the note contains some of the following... Thank you for coming, sorry I couldn't be "their". Carrie calls one of her friends, Miranda I think, and says it's a good thing she found someone to take care of her, cause she's an idiot! I recently read a sentence that reminded me of this episode, it was written something like this: "The Smith's are going to get there own house and we are going to move there belongings" Life imitating art, oh my yes - easing some of the pain of what has gone down in the last 4 weeks, oh my yes! And, like Carrie, I laughed quite hard.

My love, I know you must be cringing up in heaven right now about things that have occurred since you passed away - but I am going to try and go with the "it is what it is" attitude. And, you knew better than anyone, you cannot help someone that doesn't want your help. I tried, I was shut out, I walked away.

My heart aches every single day for you, but you might like to know that someone at the Gremm's house yesterday thought I was Jimmy Pope's "wife" - we had a huge laugh about it! I know you would have thought that was very funny. Getting to see Krissy & Raul in from Dallas and having some authentic Texas brisket made for a lovely evening on your 1 month anniversary.... ILYVM, always me xoxoxo

Monday, September 12, 2011

Looking back on his FB page

Thank you my love for your gift of words... I continue to search for anything and everything you ever wrote to me, it reassures me everyday of what we had... others remind me, but each day you are gone, I seem to forget just a tiny bit. This helps so much.

4/21/2011:

Ed Demyan

‎5 years ago today I began a relationship with the woman of my dreams. She is the strongest woman I know and I can only hope that I will be able to say "I love you baby" in another 5 years. MK you keep me fighting every day of my life.
Happy 5 year Anniversary,
Your EJD.

· · April 21 at 7:15am · Privacy:Shared with: Ed's friends

April 22 at 7:39am · · 1 personLoading...
MaryKaye Mackulin O.K., So - I was not at a computer ALL day yesterday.... 3 meetings in the a.m., then a surprise & unplanned anniversary lunch, then Oncology appt, then Pancreatic Cancer meeting... So, I just saw this now and it made me cry at work... I luv you back baby, more than the sky and moon... Our journey has been the BEST... Ups and downs, oh my yes... worth every second... oh my yes! Thanks Everyone! xo

April 22 at 10:22am · · 2 peopleLoading...·
Judy Roskavich Mackulin Thank you Edward for making my daughters life wonderful - and her making yours wonderful too. Happy 5 yr Anniversary . XOXO

April 22 at 6:47pm ·

Addendum - Found this from May of 2010 - just after we received the horrific news that Ed had PC, Stage III - we still had hope at that time:

Ed Demyan
Friends, family, fun and sun. A great weekend to be out fishing but an even better weekend hanging with the people I love. With that being said, I'm going to be around a long time and appreciate everyone reaching out to me but please reach out, be with and tell those near to you how much you love them. Do not put it off until tomorrow because tomorrow may be too late. Wow, that was a long paragraph. ;)

Hypocrisy

HYPOCRITICAL

[hip-uh-krit-i-kuhl]

Example Sentences OriginLike this word?

hyp·o·crit·i·cal

adjective

of the nature of hypocrisy, or pretense of having virtues, beliefs, principles, etc., that one does not actually possess: The parent who has a “do what I say and not what I do” attitude can appear hypocritical to a child.

possessing the characteristics of hypocrisy: Isn't a politician hypocritical for talking about human dignity while voting against reasonable social programs?

Related forms

hyp·o·crit·i·cal·ly, adverb

un·hyp·o·crit·i·cal, adjective

un·hyp·o·crit·i·cal·ly, adverb

Sometimes when you burn bridges by saying bad things about people, you cannot re-build those bridges. Sometimes it is just too late, because then you just come across as a hypocrit. I've done it, everyone has, but I guess it comes down to learning not to do it again, simply saying you're sorry; change your ways; repair the bridges while you can. Otherwise it might just be too late.

Tuesday, September 6, 2011

20 Days Later, who is reading this

I am a bit surprised to see the number of "hits" this blog remains to get on a daily basis; I mean, Ed's fight for life has ended, but his battle against that f'ing monster PC continues, is that maybe why you are all still reading?! I really cannot guess.

I'd love for people reading to post a comment, just to get an idea of what is going on in your heads. I am really perplexed by this.

I cannot believe it's been 20 days since Edward James took that last, labored breath. Sometimes I feel like it's been forever, sometimes it seems like a mere moment ago. All I know is that my heart is broken into a million pieces; I will not post what other people are feeling or thinking, because I am not them. This doesn't mean that his family and friends are not dealing with his loss just as deeply, and, I'm sure, it is just as hard for them, but this blog has always been about Ed and myself and our journey. I kept most other family/friends out of it unless it was something specific, not just an assumption of feelings or thoughts. I will not write for my child (much) or his children, I never have. I think somehow that has come across as that they are not important or were not involved in the journey, if you have thought that - you are wrong; I cannot speak for them, I could speak, however, for Ed and myself. So, there you have it. This was "our" story as a couple - not about anyone else; I could write a blog, I suppose, from other peoples perspective, but it would be a lie, 'cause I don't know their perspective. So the continued comments and implications that have been put out their about certain people being treated unfairly or as unimportant, are incorrect and those are assumptions, and well, we all know what that means. Again, I reiterate, Ed chose who he wanted involved in what - HIS wishes, no one else. And again, I reiterate, if you didn't communicate with him or contact him in the last 17 months, then where do you get off on making any comment at all .... Funny how people think they can speak for him now that he is not here to defend himself and he cannot disagree with what's being put out there.

I knew him better than anyone, some people don't seem to like that much, but it's the truth. We communicated openly and honestly about everything, from day one; there were no awkward silences when questions were asked, we just answered. Sometimes the answers wouldn't come immediately, but they always would in time. Ed put me on break once for about 3 weeks in the summer of 2009, during that time he sought counseling immediately to make a decision about our relationship. Needless to say my heart was completely broken, but he didn't wait on getting help - not a lot of men would do that. He called my every night while we were on that "break", but it didn't sooth me (this was prior to his diagnosis, obviously) cause I always felt like he was throwing away time that we would never get back. I still feel that way today. But in those three weeks (which, mind you, two of them we wouldn't have been together anyway, so really, he put me on a 7 day break which I still hated) he realized that he did want to spend the rest of his life with me and that 3 weeks of not seeing each other was more than he could bare as well. I lost quite a bit of weight at that time, I was sick to my stomach that entire separation period. But like I said, he didn't take it lightly, he sought professional help immediately and he found his way back. That is an extra special man my friends! If everyone was willing to admit when they needed a little help & seek it & take it seriously (that is key), how much better off would this world be. I myself will probably be seeking grief counseling soon, but right now I still feel like there are a million things to get finished, and then again, maybe I won't - time will tell. I have no problems spilling my thoughts to friends & strangers alike - um, hello, this blog for instance... I am honest to a fault, my heart and mind are an open book, and communication is something I value very much. I had a 13 year relationship with someone who just couldn't communicate and talk to me (oh, and lied to me, a lot)... I learned from that experience at a very tender age that I could never and would never spend time with someone like that again - be it "friend" or more. You cannot waste your time and energy on people who are not willing to communicate with you on an open and honest level (my own kid has this problem right now). And, it doesn't have to be verbal, writing things and feelings down is sometimes easier, but it is just as important, because it is still open and honest communication. So, if you love someone, make sure you let them know - don't assume they know, they don't. And, if you are not being told you are loved by someone you love, keep working on the communication - I guarantee you, it is worth it.

Believe me, when you communicate, the reward is more outstanding than you could ever imagine, and I was able to experience that for close to 6 glorious years.

So, again, I don't know who is still reading this or why - but there you have my thoughts on day 20 without the man of dreams sharing this planet with me.

Peace - MK

Monday, August 29, 2011

Tribute To a Great Man and Some of Ed's own Words

Thank you Terry for writing this tribute to Ed. He was an amazing person and I'm missing him more than words can express.

http://thepostnewspapers.com/terry-s-column-Strongsville-8-27--brlas-

Well, it appears the link will not work... I, of course, do not know how to fix that.. so, if you just go to thepostnewspapers.com, you can google Ed's name, and this article should pop up.

Yesterday, was by far, one of the worst days to date... I knew this would happen, but truly thought I'd handle it better than this. There are several of us who need to get his final arrangements finished so we can move forward and just let things be... It is definitely not happening fast enough, but again, we know that the legalities of such matters take time. Time right now is not my friend, I want to fast-forward to a point where the constant pain in my chest is much less and that only good things are remembered. However, I also know that one should never wish away time because my sweet Edward surely didn't get enough of that.

Addendum 8/30/2011: As I was looking through old e-mails from Ed, I found the following... The relief I felt after reading his words cannot even be explained... This was at a time very early in our relationship and Dar & Hal thought we were moving just a little too fast, LOL. Enjoy!

Wednesday, June 14, 2006 10:58 AM

From:

"ED DEMYAN" DEMYAN@>

View contact details

To:

emmyk

"Good morning my beautiful woman. I was just thinking about what you had said Hal & Darlene had felt. I started to feel a little bit sad but that is their feelings and they are entitled to them. It made me take a minute and view what they see from their eyes. So that is what I tried to do and I can see how they feel that we are moving so fast and that this may be just an infatuation. What I don't think they realize is that we have discussed just about everything and that we know that our lives have many complicated factors. We often say how scary this is. For me I try to live my life one day at a time and if I tried to tackle every issue at once I would drive myself crazy. That doesn't mean to say I don't care about the future or want to address the future. I can only prepare for the future the best I can. As I look back at these last 2 months with you I can honestly say to you and to myself that you and I have addressed the issues that have come up and may come up. You and I haven't hurried into decisions and always talk them out. Unlike if we were younger, we know things will not always be perfect and I think I can speak for both of us by saying that when obstacles come up we don't run away. What Hal & Darlene's concerns are is what great friends do. They want to look out for your best interests and make sure you have looked at all scenarios. As for me, I love you so much. You are my trusted best friend, my partner, my lover and everything I could ever want in a person. You are who you are and I love that. I would never want to make you do anything you would not want to do yourself. I'm glad I can be so open with you and know in my heart and in my mind that you came into my life for a reason. I may not know the exact reason only that you have made me whole. Your EJD XO "

What can I say - we were truly best friends from the very beginning, we took our time getting to know each other extremely well from Jan. thru April of 2006 - thinking only a friendship was developing, little did we know that it would turn into so much more - but turn it did, into something even more extraordinary than a great friendship - it was my honor to be all to him that he was to me... as he stated..."trusted best friend, partner, lover and everything I could ever want in a person". My future was so wrapped up in this man and our love, that I will remain quite lost for sometime to come... But never would I change one single minute with this man.

Friday, August 26, 2011

Sincere Thank You

As I have been overwhelmed this last week, I have not started working on the many, many Thank You notes that need to be sent.

Every day this week, my mail box has had no less than 6 cards each day - personal gifts dropped off - dinner delivered to me twice - and countless other messages by phone or e-mail; I just wanted to let you all know that it is greatly appreciated and such a tribute to what a great man Ed was, and continues to be on the other side.

My family - you rock in ways that cannot even be explained, you know who you are.... We are so lucky to be blessed with such a loving, warm, funny and supportive family.   There is not one of you that I do not love unconditionally and I would do anything for all of you - this includes my Barsa Boys as well...   Thank God for you all. You will all get Paige and I through this sad and grief filled time.

Our friends - gee, you rock in ways that cannot even be explained, you know who you are...   I mean, you are more than friends, you too, are family... Ed and I enjoyed every minute we spent with you all these past 17 months... your support and friendship made this battle bearable and brought us so much laughter at a time when it could have been hard to find - it was not, there was always joy and love.

To the Pella Peeps - you need to wear that logo - the support you showed Ed was amazing. He loved his job, he was so sad that he couldn't come back to work. Each one of your cards and the number of Pella people who came to the wake (I cannot believe that was one week ago) was incredible.

I will get to the official Thank You's soon, I promise, just please be patient and know that every card, phone call and private message is greatly appreciated.

I miss him terribly and every night at 10 p.m. when my phone doesn't ring, things just don't seem quite right in this world. I feel like he is just at his Brooklyn house, as we only lived together 50% of the time. Ed spent 7 days in Brooklyn, then 7 days with Paige and myself in Strongsville... Surely not the ideal living situation, but Ed would never have taken his children out of their environment and, of course, we thought it would only be that way until 2014, when we would have gotten married. In some ways now, I think it was a blessing that I only had him every-other week, the alone time doesn't seem as bad as I thought it would. And, ironically, it's not so much the not "seeing him" as it is the not "hearing him"... God I miss that booming voice, which would just piss Paige off to no end in the mornings when he would be on the phone with his friends. You just keep thinking, I want five more minutes just to talk to him... just 5. Not to be.

So, thank you everyone for your continued love and support....   I promise something will be coming in the mail soon.

Peace, MK

Thursday, August 25, 2011

Crab and the Fish

A look back to the beginning....

Tuesday - April 26, 2006.... Here is an excerpt from an e-mail I sent to Ed; Mind you, we only officially hooked up on 4/21/2006, so we were 5 days into our romantic relationship... I am the Crab and Ed was my sweet Fish... We continued to joke about how true the following was over the next several years. We were so compatible and, although neither one of us is big into astrology, we thought it was pretty accurate... Enjoy.

"Cancer and Pisces are both Water Signs. Since Water is
a tangible, physical entity, Cancer and Pisces are
generally very compatible. Pisces are in this world to
create human connections (um, that is so Ed - he lived to connect people),
and when they come together
with Cancerian intuition and nurturing, there is no
stronger bond. So that this union does not wash out in
a stream of romantic idealism, Cancer's stable view of
life holds them afloat. And it's not a case of Cancer
putting up with a dreamy Pisces mate: Cancer really
understands emotional ambiguity and can help Pisces
stabilize their ephemeral nature. Though Cancer could
grow weary of their Pisces mate's faraway nature, and
though Pisces could be bothered by Cancer's
self-centeredness (oh, my, yes - I could be very selfish sometimes,
but worked hard on it for Ed), it's easy for this pair to find a
compromise (and it was easy for us).

Cancer is a Cardinal Sign, and Pisces is a Mutable
Sign. Though intuitive, in love, as in life, Cancer
likes to get things moving with a good idea and a
solid plan, and they'll write it all down to keep
track. Pisces, on the other hand, is more about going
on instinct; they'd lose that plan as soon as Cancer
handed it to them! Cancer needs to give Pisces the
freedom to enjoy their external interests and to
occasionally follow a whim undeterred. Pisces can show
Cancer that completion is sometimes better than
initiation, and that compromise without struggle can
pay off. Cancer and Pisces feed off of each other's
energy well, and should be completely compatible in
romance.

What's the best thing about the Cancer-Pisces love
match? Their similar emotional natures. Both have a
great capacity for emotion and compassion, and both
can act as teacher AND student. They complement and
harmonize with one another very well. The overall
empathy and commitment that these two Signs value in a
relationship is what will keep the ties strong and
long lasting between the Crab and the Fish."

Forever my favorite Pisces.... Ironically, however, four of my very best girlfriends are Pisces and 3 or 4 of Ed's best male friends are Cancers - pretty funny if you ask me.......... Peace, mk

Monday, August 22, 2011

Good Night Edward

Edward J. Demyan...   You are missed so much. I will love you forever.

To those of you who have followed this blog for all the right reasons, thank you for your love and support of my sweet Edward.   He felt it and it meant a lot to us both.

Ed stayed strong until the end, Ed never complained, Ed never said "why me", Ed always, always kept a smile on his face...   He showed affection all the way to the end of his life. His last day was completely spent sleeping, but we just knew he could hear us. (Oh, try and only say positive things to a person on their death bed, I mean really) He was loved so much by so many and they all made sure he knew it. If anyone would have ever told me that I could sleep in a hospice room for six straight nights and remain sane, I would have said no way, but seriously, I would have done anything to protect that man and to make sure he knew he was not alone for one single minute on this journey.

For those of you who have followed this blog for reasons other than being supportive of him, wow, you proved Ed so right in these last couple of days.  Man, he called it right from the beginning. He knew exactly what would go down, what you would do and you did it.  My Sweet Edward - no more of that for you ever again. He specified his wishes directly to you, to your face by the way, he also knew that there was a good chance that his wishes would not be honored. Ed, himself said, why would you/they start honoring me now... That constant negativity and nastiness will no longer surround him. Too bad it had to be present in the room he was laid to rest.   And, piece of advice - one should never tell someone on their death bed that they gave-up and should have had more chemo, 'cause then Ed would be fine, when they don't know what they're talking about... So wrong, but again, just like Ed expected it to be.   If you know you didn't honor him & treat him like the rock-star he was while he was on this earth - you can live with that now. If you were left out of the planning of his final arrangement and his estate planning, it was because he didn't want you involved. This was about Ed and Ed's final wishes. I hope you learned something. Oh, and by the way, when the love of your life passes away, I'm sure you will be thrilled to see me at the luncheon to pay my respects.

I'm sure some of you just read that last paragraph and are thinking, WTF? (Or, you are so pissed off beyond belief and cannot believe I wrote it - too bad...) I just really needed to point out to the public, who may be getting a different story from a point of view that wasn't Ed's, that Ed made all his final arrangements himself, Ed specifically requested my Mom and Michael to help him with all his arrangements because he respected them and they him & wanted to make sure his wishes were adhered to. He also knew my Mom would never be bullied by anyone, anytime, anyplace....   He also knew if I had to deal with the situation, I would have blown a gasket and would have wound up in the Parma Jail, along with several other select friends that would have had my back (ladies and gentlemen, you know who you are, and I thank you).

Ed turned into the man he wanted to become because he worked on it every single day; Ed made a decision a long time ago to become the positive, glowing man he became. He lived for the future, never the past, he knew the mistakes he made and did his best to learn from them, he was a gift to us all.   He will be missed more than words can express.

Ed loved our girls, myself and our friends in a way that is not encountered often on this planet - I am forever a better person because he loved me. We left nothing unsaid and he knew how much he meant to all of us, that is the only good thing to come out of a slow process like Pancreatic Cancer, there are no regrets and nothing left unsaid. So, if you feel that you had things left unsaid with him, that is on you.

I will miss him every day and I will continue to move forward and make him proud.

Peace - mk

Thursday, August 18, 2011

The battle has ended and now he can rest without pain. Thank you to all who have been reading and praying for us along this tragic journey.

My heart is so completely broken right now that updating you all on the events of the last 9 days would be too entirely exhausting.

Know this, he went away very peacefully and had no pain the fast few days.

I am forever changed both good and bad because of this experience. I am the luckies gal on this planet, he picked me to go along for the ride, and believe you me, he could have anyone he wanted. He was THAT special.

Sunday, August 14, 2011

Sunday 11 am 8.14.11

Hospice decided Monday is not a "go home" day, possibly Tuesday now. He slept for the last 24 hrs., made it through the night sleeping, but also slept the entire day yesterday. He is now at a point where he is very confused and cannot really hold things in his hands. My heart aches in ways I didn't know it could. Michael O is taking care of him now while I'm home for yet another quick shower & back to his side. Thank you all for the kind thoughts & prayers, it is appreciated. MK & Ed xo

Saturday, August 13, 2011

In Hospice Now

Well, It looks like Alice Cooper was making Ed hold strong there this last week. After the show & the meet and greet - Ed slept, Ed slept until Wed. night, almost 24 hrs. Then he proceeded to have a panic attack in the middle of the night / early Thursday a.m. We took him to hospice on Thursday, early afternoon, and he is there resting now. I am only home for a quick shower & brief updates to messages left on FB, so am not going into detail as of now. Just know this, he is a much loved man with no less than about 25 visitors every day since Thursday afternoon. I am so tired, but I don't like being away from him for more than a couple hours... He is my heart and I just want him to be at peace... There is a chance he can come home on Monday, but will need round the clock care just to ensure he doesn't fall. I am so sad I cannot take FMLA and take care of him, but I will do the best I can to juggle it all - isn't that anybody would do really?! So, gotta blow my hair dry & throw on some make up. Love to you all who I know are praying for him and his loved ones.... Peace, and as always, good health - MK & Ed......... xoxo

Wednesday, August 10, 2011

8.9.11 Alice Cooper, Akron Civic Theatre

It's very late - all I can say is I am the newest Alice Cooper fan. What an outstanding show, and more important, what an outstanding man. (Ed likes to call him Vincent Fournier - I doubt I spelled that correctly - but that's his given name). I loved sitting in the front row with my sweet man. His adrenalin kicked in when Alice hit that stage and he hung in there for our private meet & greet. Thank You just isn't enough. But, Thank You to the staff at ACT - they could not have been nicer. Seriously a great show... Oh, I will see him again live - Fantastic is the word of the night.

Rob & Darcy, we couldn't have done it without you. You are the true meaning & spirit of friendship... The wheelchair was a god-send and your presence was very much needed to make this night the success it was.

The fact that I am still awake at 1:47 a.m. says quite a bit about the night. The adrenalin is obviously quite high in MK too. Hm, third person - that's never good. I will go into more detail later this week. Just trying to get some pic's on line in case Fox 8 does a follow-up story - they couldn't come to the show because the meet & great was after the concert and it was too late.

Love & Peace, and most importantly, good health & friendship to you all. xo xo Ed & MK

Friday, August 5, 2011

August 5

Hi everyone, I know a lot of you were anxious to find out what happened this week. Well, it wasn't good news. The stint could not be placed endoscopically on Wed. due to the area being to compressed by the pancreas and the tumor. Option was to have a drain placed through his side to let the bile drain into a "bag", however, it would not change his appetite, his pain levels, his ability to sleep and the risk of an internal infection is very low right now - in other words, all it would do is make him not yellow & alleviate some of the itching caused from the bile seeping out through the skin. Shit, he could be pink for all I care. So, we are sitting on the decision for now. Placing the drain would leave him with an open hole and this is not something we are quite ready for. Unfortunately, the ERCP did identify that he has a stomach ulcer due to the amount of motrin he has been taking, so he is off motrin for now in hopes that this could heal.

His pain medication was re-adjusted yesterday and we are in the process of having hospice visit him, possibly, on a daily basis. We will also be getting him a wheel chair so if he does want to get out of the house for a while, he won't have to walk and I think that will give him some incentive to stay a little bit active.

His physician and nurse were a little astonished that he still drives as much as he does, but I explained to them that he is very stubborn and isn't quite ready to relinquish a lot of his independence. His weight is a scary 143 lbs. and watching him waste away has, by far, been the hardest thing I have ever endured in this lifetime. I feel for the families who have endured this horrific disease. I know, my life is forever changed, some ways bad, some ways good.

I am feeling very bitter these days - but, family and our friends make this journey bearable for me. We have been blessed with outstanding friendships and have been able to make more as we have been on this path. Most of you know who you are.

We will keep you all posted as we move forward, but am saddened to say that the news from this point on will probably be of a sad nature.

All I know is - Alice Cooper is waiting for him this Tuesday and come hell or high-water, I know he will try to get himself to a point that he can at least make the show for a little while. I figure with the wheel chair & his meds adjusted, and maybe some help from his herbal supplement, we will find a way to make it work.

And, on a side note, Stefanie M. from the Pancreatic Cancer Action Network, Cleveland Affiliate, is working hard on our first ever "Casey Coleman Day" down in the Muni lot on September 25, 2011 before the Browns/Miami game - so if you are a tailgater, please find us and come pick up a free gift, get informed and see how you can help us in our battle!

Peace, MK & Ed

Tuesday, August 2, 2011

One of the worst weeks yet

Hi everyone - We have just gone through, what I think, has been one of Ed's worst weeks yet. His pain levels are unbelievably high, his weight is astronomically low and the jaundice is very prominent. I should have made him go to the ER on Friday, maybe then we could have had the shunt placed already and he could be putting some much needed weight back on. My fear now is that he won't be able to handle the procedure very well and lord knows what will happen next.

CT done on Monday 8/1 - trying to get the procedure to have shunt put in for Wed. 8/3 - however, seeing that it is already 3:25 p.m. on Tuesday - I don't have a good feeling about this. I tried to explain to the oncology staff this morning that he IS STARVING TO DEATH and that it was URGENT. Same as I did last Friday, but, ya know, whatever.... Needless to say that not being with him this week and dealing with the ever-so-slow health care system, I have lost it. I mean, we all knew it would happen eventually, and I think I hung in there pretty well for the past 17 months. I am toast. Stick a fork in her, she's done. Nerves, shot. Emotions, over the edge. This past week has seemed like an eternity. Here is what I hope for, that Ed can have his procedure and have enough time to recover to, at the VERY least, get to see Alice Cooper next week. He has been so excited about this - truly, if we just make that we will be lucky.

Thank you to everyone for your messages and posts, they are appreciated and are what help me get through.

A very special shout out to Rich & Peggy Hovan of Brookway in Brooklyn. They were kind enough to give, yes give, us a hospital bed and Rob & Cigar picked it up and brought it to my house yesterday - we are already for some serious recovery. Ed is also getting a hospital bed at his house and we are hoping this will help with recovery from the procedure and with controlling his pain levels. The Hovan's couldn't have been nicer and I truly enjoyed meeting them - I loved telling them that I have some very dear friends from their street, it was most definitely a "brooklyn" moment. So, thank you Hovan's, it is very much appreciated and we will honor your request to pay-it-forward when the time comes.

So, maybe a shunt tomorrow, maybe not.... Will continue to keep you all posted. MK

Tuesday, July 26, 2011

Our 9 months are up

Well, He did it - He hit the 9 month mark... Ed did exactly what we all knew he could do. In November 2010 the Doctor's said he would have about 6 - 9 months.  He has officially hit 9 months! Anything after this week is precious, precious, precious, precious time. Have I made myself clear - PRECIOUS time. TIME....   Time - the most important thing you can do right now is try to spend some time with him. This Means If You Choose, Right Now, NOT to spend time with him, and You Can , I assure you, you will regret this at some point down the road. I would cut off my left arm to be able to take a leave of absence from work and do what ever he wanted, whenever he wanted, however he wanted. Unfortunately, life goes on and this is not to be.  I take as much time off as I can possibly afford, but it will never be enough.

Due to the nature of my mood and feelings on this, I will refrain from writing too much more on the subject. It would only get me into trouble and would probably really piss Ed off.

We do have some fun things coming up and I hope Ed will be able to muster up the strength to enjoy them all, we have the Tribe game tonight - thankful that the weather today is a bit more bearable than it's been the last 10 days! Sucks that Brittany is down at the Q - traffic will be a beast. Frid. after Ed has his biophosphinate infusion, we may go to the lake for 1 night so he can fish. We have a big BD bash Sat. night for the outstanding Mr. Greg H. - Happy 50 Man - we luv ya. Please don't wear that kilt! I believe the Spiwak's will be in town the first week in Aug. and we are so looking forward to seeing them for a quick drink or two (BHS'ers, let me know if you want me to "make a plan"); Rex - man, the big "15" on 8/6 - You know we wouldn't miss that; AND, the BIG event - Alice Cooper show, 8/9 - Front Row tickets for his biggest fan! I believe I have to watch several Alice video's over the weekend so I am well prepared for the show; Paige is going on her first big solo trip to the ATL in August - oh, yes, I'm scared crapless about that; We have Ira Dean coming to town on 8/11 - show in Akron, Partying with Jennifer & Phil that same week - we hear a rumor that Brother Trouble may be in the OH-IO on 8/13 - if they are - we will definitely be partaking in that party! Another Tribe game 8/22. Our Yurt weekend at The Wilds got moved back to the 26th due to the mayhem of that 2nd week in August. This just means I can have another "alone" night with Ed :) School starts on the 25th - O M G! Then if we are blessed enough to make it to September, we can relax!    And, yes, we know that all of the above can change at any minute of any day - but we are going to try and make August as event-filled as Ed's health can handle... Because, It's Precious Precious Time!

I sincerely hope that everyone reading this enjoys the last bit of summer!   We wish for you all - Good Health!

Addendum: ** 7/27/11: Well, we did hit the tribe game last night, Ed only made it through the 6th inning; he became quite sick and his pain levels spiked to probably a 9. Sitting at the game, looking at his eyes & face, I realized he is becoming jaundice. We knew it would happen, but I was not prepared to be sitting at an Indians game and realize that the yellow in his eyes & skin is really setting in. You cannot tell so much in the house, and I believe that is why I had not noticed until yesterday. Sitting in the sun, it is pretty obvious. He has blood work today and will talk to the staff on how we proceed from here. He is so skinny and weak right now, that I don't think he would be able to survive surgery to have a stint/shunt put in, which so many pancreatic cancer patients have done.

So, again, I will reiterate - if you have not spent time with Ed this summer - you really need to check your priorities and make him a priority pretty damn quick. Anyone wanting to visit him is always, always welcome at my house! We are nearing the end of this battle, our hearts are broken but we remain hopefully that he can tough it out a while longer - because, you know Ed .... It's football season & he wants to see his beloved Brownies play some great ball!

To the outstanding woman at the Indians game who pushed him in a wheelchair all the way to our car... Thank You. Turns out her father is battling PC right now - What are the f'ng odds of that? God Bless you, I wish I could remember your name! You were a doll and we appreciate the kindness.
Ed and MK

Monday, July 11, 2011

Mid July

Well, when I posted on June 30th, little did I know that July would be a completely different experience for Ed... It has not been a good two weeks. And, it really started on the day I last posted. Ed decided he was going to shoot hoops in my drive-way that evening, I told him not to do it, but he really doesn't listen to me. Standing there shooting was fine, but once the ball got away from him and he kinda ran to get it - he stumbled. Now he twisted his back a little and the spot where his bone cancer is flared up big time... The look on his face when he stumbled was completely & utterly frightening. I swear I could feel his pain - plus it scared the crap out of me... What's the name of my book ladies... "Men are Idiots (Even with Cancer)"!!!!   Since that day, he has really not felt well at all. To top it off, the entire 4th of July weekend he had pretty bad stomach issues - turns out, he was forgetting to take his Prilosec, he did this for about 5 days then realized, oh, that's the problem. I wanted to strangle him.

So, lets move along to the next weekend.... Ed moved... Yes, he moved?! WTF...   I mean, moving is stressful enough when you are a young person & healthy - add to this our age & his illness - UGH. His boys came over Sat. and moved all the heavy stuff for him & got him pretty much situated in his new Acre house, and on Sunday, me and his girls moved the rest of the kitchen stuff and then I proceeded to clean the empty Acre house - I am so sore today! But, it is DONE. I did not support this move at all.... So, if anyone else asks me, why did Ed move - All I can say is - Ask Him.   Now he lives right next door to my Dad, another thing I was not too thrilled about - but that's a whole different book people.

I am hoping that Ed uses the brain God gave him and rests this week - He really needs to take it easy if he wants to enjoy our upcoming weekend at the cottage & for Friday's big Monsoon Lagoon Fest...   I have a feeling that this year's fest is going to be really calm & relaxing - which is fine with me!

Hope you are all enjoying your summer so far, it goes so fast.

http://www.monsoonlagoonwaterpark.com/ - Join us on Friday, 7/15/2011 from about 12:30 - 7 p.m. at the Lagoon - The kids can go-cart all day & us grown ups will be turning that pool-bar into a Par-Tay.

Peace - Ed and MK

Friendship, by Judy Bielicki

“It is often said that it is love that makes the world go round. However, without doubt, it is friendship which keeps our spinning existence on an even keel. True friendship provides so many of the essentials for a happy life-it is the foundation on which to build an enduring relationship, it is the mortar which bonds us together in harmony, and it is the calm, warm protection we sometimes need when the world outside seems cold and chaotic. True friendship holds a mirror to our foibles and failings, without destroying our sense of worthiness. True friendship nurtures our hopes, supports us in our disappointments, and encourages us to grow to our best potential.

Ed and MK came together as friends. Today, they pledge to each other not only their love, but also the strength, warmth and, most importantly, the fun of true friendship.”

Always Fighting for the Love of My Life