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, December 28, 2010

Chemo Chair Day 12/28/10

Hey Peeps,

I felt obligated to update the Blog... My mother's friends and some of my family apparently do not like it when I do not write regularly. Unfortunately, the Holiday's do not thrill me like so many other people and I hate to be a Debbie-Downer around this time of year. It's always about the "stuff", the stuff you give, the stuff you get, is there enough stuff, should I get more stuff, etc... Granted, I like gifts as much as the next girl, but really, it's just extra stress in what has already been an overly stressful year. Nine months, 9 months we've been dealing with this crap... It is too much on certain days and some days are fine. No, I do not want people to feel sorry for us or bad for us, it is what it is (sorry Judy, I know you hate that - but, well, it is)! I'm angry right now so it's hard to write with any kind of optimism. Ed is feeling o.k., his foot and ankle remain swollen because of his blood clot, he has nausea every day, he cannot sleep well because of the pain in his back/sacrum bone.... The radiation did a big fat nothing for that pain. He just plugs along the best he can, and 99% of the time he does it with a smile on his face.

Today Ed is in the chemo-chair again for 6 hours, then home with his chemo pump until Thursday at Noon, then he leaves me and Paige on Friday, New Years Eve for another long week without him. Truly, living like this has become almost unbearable for me, he is, of course, fine with our continued 1 week on/1 week off arrangement. It breaks my heart continuously to know that I loose so much time with him when the doctors continue to tell us he has so little left. Ah, sacrifice for our families.... being a responsible grown-up is just oodle's of fun! On the bright side, we may spend New Years Eve together and I get to spend Sunday with him for our Browns-Steelers game day.... I'm too excited about that! Hoping the weather warms up a little, but regardless, we have club seats (thank you Powell Family) so we can stay toasty warm. I ordered my Hillis Jersey, should have it on Thursday, so I will be all set. Mmmmmm, I love me some #40, en-how! I love football, it's just awesome. And, no, people, we do not know about the Super Bowl yet.... As soon as I know something - you will know something.... I realize it is just 5 short weeks away, keep those fingers crossed. The Dream Foundation did send the girls Christmas gifts, which was very cool. It really seems to be an outstanding organization and whether we get to Dallas or they send us on our 2nd request, a trip to New Orleans, they are all good in my book!

So, wishing you all a healthy and prosperous New Year, I say so long to 2010, and by the way, 2010 can kiss my a$$. Bring on 2011 - hopefully we will get to California to get tumor cell profiling done within the next few months.... We are checking into two labs (Rational Therapeutics and the Weisenthal Cancer Group) to see if they can test Ed's tumor cells to find a chemo that will actually work... wouldn't that be a nice new year gift! Again, fingers crossed!

Peace! Ed & MK xo

Wednesday, December 1, 2010

December 1, How is that even possible.

How is it possible that it is even December? How is it that almost 9 months ago we started on this horrific journey that led to the creation of this blog? How is it that someone like Ed could be sick when there are so many sicko's in the world who are living with no illness -or- only self-induced illness? How is that you finally get the gift of true love and then it can be taken away in a blink of an eye? How is it that I'm supposed to trust the higher power when He has done this to one of His most incredible creations? How is it that people can treat people like crap and still come up smelling like roses and the truth will forever be hidden? How is it that I can ramble on like this? O.K., I'm done with that.

I just want to thank the Powell family of Berea, Ohio. They are a St. Mary's family whose son, Andrew, and Paige were in Children's Letters to God together last year. They so graciously gifted Ed and myself club seats for the Jan. 2, 2011 Browns -v- Steelers game - with parking. How is it that just when you loose faith in people, people restore it in leaps and bounds - beyond imagination. So to Stephanie & Chris - our most sincere thanks!

Thanksgiving weekend was just a big old eating, drinking, family loving 4 days! With Dan, Lisa and Mark (and Jasmine) all home, it was wonderful to have everyone together for our special dinner. It was fantastic that Ed was able to have this Thanksgiving with us. We have never shared a Thanksgiving day together in our 5 years... for that I'm truly thankful. Plus THE Ohio State beat that nasty team from up north! Always makes for a great Saturday. Everybody sing, We don't give a damn about the whole state of Michigan, the whole state of Michigan, the whole state of Michigan.... 'cause we're from O-HIO ;)~

Ed will be completing his 10 days of radiation either on Dec. 7th or 8th. On 12/7 he will be having a medi-port installed (sounds like a car part). This will be used for his at home chemo hook-up. Can you say yucky. He will start his new chemo on 12/13; this is going to be a rough one. I guess it's supposed to be about 6 hours in the chair, then they hook up chemo to his medi-port and he continues at home with it for the next 48 hours - so about a 3 day process. He will get this every other week, or every 3rd week depending on how his body handles it. He will not be working and will be on short-term disability. He WILL go out of his mind... He LOVES to work (I know, he's insane). On the bright side, he has turned my very lovely girl living room into a man-cave of sorts; he bought me, yes, me, a 46" plasma flat-screen - just what every girl wants for Christmas (cough, cough *diamonds* cough, cough)... But, it is pretty cool. He will be watching ESPN a lot. I figure, if he is stuck on the couch, at least he will have a giant TV in my tiny living room to keep him company. I am going to get him a juicer, I am bound and determined to get some nutrients into that boy! So see, he gets me a TV I get him a kitchen appliance... turn around is fair play - no?!

Well, I will keep you all posted... Still have not heard anything from the Dream Foundation, but still keeping that wish alive for the Super Bowl in Dallas! Hopefully we will hear something next week.

Wishing each and everyone of you a very Merry Christmas and more importantly, a HEALTHY and Happy New Year.

Love Mary Kaye, Ed, Paige, Taylor & Kalista

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.

Wednesday, October 13, 2010

One More Week In Limbo

Well, what a crazy week...

We had our mini 5 day vacation in Hilton Head to celebrate my baby cousins wedding, Lisa and Mark what a fabulous wedding you had! The weather was incredible, 85 & sunny! My sunburn can attest to the weather, I turned into a lobster. The boys golfed on Friday - Ed loved every minute of it, even though he only golfs about once every two years! And, his foursome won! He loved being with Mark's Dad & Brother-In-Law out on the course, really got to know all the guys well! Came back in quite the good mood. He fell in love with Aaron (sp?), one of Lisa's friends husbands... Immediate Bro-friends! He enjoyed Dallas (as we all do)... We got to know Emily & Sam, Dan's friends, we loved hearing everyone say "The Kelly's", I had Josh the personal musician on the balcony above mine to keep me entertained, breakfast was always just a fantastic gathering of friends & family... it was truly a perfect weekend. Ed and I both hit the exhaustion wall on Sunday evening (the Browns loss didn't help our spirits) and are still continuing to recover!

The wedding was on the beach and was just beautiful. The food was fabulous. The friends and family together just couldn't be beat.

It was a great distraction for what we are waiting for next Thursday (10/21)... triple CT scan, blood work and meeting with the Oncologist & Surgeon right after all results are back. We are scared. For only the 2nd or 3rd time since this nightmare began, Ed is not feeling very positive right now. He thinks for some reason we are going to get bad news... I pray he is wrong and that we are granted a miracle. If surgery is an option, I'm sure it will be done very, very quickly. If Ed's cancer has metastatsized or the tumor has not shrunk away from his major arteries and surgery is not an option, I don't know what the course of action will be.

Remember, November is pancreatic cancer awareness month... I know everyone loves to save the tata's, but pancreatic cancer needs some major attention! There is still only a 6% survival rate, only 2% of the National Cancer Institutes money goes to pancreatic cancer research, pancreatic cancer has not had any improvements in survivability in over 40 years - 40 years - that is insane people, pancreatic cancer is the #4 cancer killer in this country.... Nuff said! Work needs to be done. So check out and see what you can do to help!

Love to all!!!

Thursday, September 23, 2010

One Month to Wait

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

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

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.

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 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

Sunday, August 22, 2010

Hate this

I f-ng hate, hate, hate radiation.... Nuff said.

Wednesday, August 18, 2010

CA19-9 Drops Again

Ed met with his Radiation-Oncologist today, 8/18/10(usually every Wed.), and was informed that his CA19-9 tumor marker number has again gone down.... Yeah! It is currently at 4,148 - down from the original number of aprox. 25,300. This is pretty good news seeing that he had 2 weeks off of all treatment since the last blood test. Radiation is continuing every morning. Ed had a horrific week last week, but is feeling back to his old-cherry self this week. I'm only sad that I cannot see his happy face until Sat. night when he will, no doubt, play his little heart out at the Winchester.

Remember - the Winchester in Lakewood this Sat. night - Family Friendly!!!! No Age Limit as long as minors are with a parent/adult!!! Newport will play from 9-10:15 p.m., but Ed would love to see everyone at least an hour before the show to chit-chat!!!! Darlene - Paige has changed her mind again and will be joining us, so don't tell Nat... Ugh, who knows with that one, she may change it again before Sat., one can never tell.... Teenager girls are almost as much of a pain-in-the-a$$ as men (ha) :)

Take Care Everyone and hoping to see some of you on Sat. evening!!!

Love to all - MK & Ed

Tuesday, August 10, 2010

8/9/10 - And so, Radiation Begins

Monday 8-9-10; Ed had his first round of radiation along with chemo on Monday... I can already tell that this is going to take a toll.

Tuesday 8-10-10; Not a very good evening after chemo; Poor Ed didn't sleep well at all. His stomach is upset and he is very tired today. I'm sad. He will be receiving chemo on Monday's for the next 5 weeks along with daily radiation. We have been told that in about the 3rd week of radiation he should start feeling the effects pretty harshly.

He has put on some much needed weight and has his buda belly back; unfortunately, this will be needed weight if he cannot eat in the coming weeks. My prayer is that his appetite will hang in there so we can keep that much needed weight on him.

His mother is currently in hospice with terminal cancer; one visit was more than I could handle, to say the least. I feel horrible that I am unable to visit her again, unfortunately, I am not strong enough to walk away and stay positive. This, too, breaks my heart. Please people, if you have any, and I mean any, strange lumps or pain - do not ignore it. Push your physician to investigate if you must... If you do not take matters into your own hands, no one will.

Please continue with your prayers, I believe they help and we appreciate it dearly.

Love to all - MK & Ed

Tuesday, August 3, 2010

Radiation to begin...

Well, Ed went and got his first markings on his stomach today to get ready for External Beam Radiation Therapy (EBRT)... Here is the definition of that:

External beam radiation therapy focuses a beam of radiation from outside the body onto the cancerous internal organ and/or tissue within the body. When treating pancreatic cancer, EBRT uses a high-energy X-ray machine called a linear accelerator to direct the radiation beams at the cancerous pancreatic tumor. These radiotherapy treatments generally last a few minutes at a time and are usually administered five days a week, over the course of six to eight weeks.

Specific advantages of external beam radiation therapy include the following:
EBRT is an outpatient procedure. This technique does not carry the standard risks or complications associated with major surgery for pancreatic cancer, which can include surgical bleeding, post-operative pain, or the risk of stroke, heart attack or blood clot.
The procedure itself is painless.
EBRT poses no risk of radioactivity to you or others with whom you have contact. Thus, as you undergo EBRT, you may continue normal activities with family and friends.

He didn't get his permanent circle-tatoo on his stomach yet, that will probably happen Mon. or Tues. of next week. The Radiation Oncologist noted that he will have 28 treatments (Mon-Frid) so about 6 weeks just like in the explanation above. He will have increased nausea, be very tired, change in appetite, will have to start taking digestive enzymes and possibly hormones of some-sort... Basically, same side effects of chemo, which he will also start again on a weekly basis either this week or next. I could not be there with him this morning and I was sad that I couldn't ask my bagillion questions. I have a feeling this will be a tough six weeks to get through... That is why we had the big celebration at the Lagoon this past weekend... We set a record at the bar (9 adults/8 kids on one tab)... It was a GREAT weekend! Be patient with us during this time if we seem to blow you off or not meet expected obligations, it will literally be one-day-at-a-time.

Love to you all...... MK & Ed

Friday, July 30, 2010

On our way to Surgery.....

Hi All,
Met with the Oncologist and the Surgeon yesterday, 7/29/10... Results were better than we anticipated by far. The tumor has shrunk, although they didn't say by how much, it was enough that the physicians feel Ed is ready to move on to daily targeted radiation with chemo... We were originally told that it would be atleast September before that would be a possiblity, so we are about one month ahead of what was expected. With Stage 3 Pancreatic cancer that is a BIG deal. The tumor is still pressing against one main artery, hopefully with the targeted radiation, the tumor will shrink away from that last artery and become operable. As I've stated before, the only way to have even a fighting chance with pancreatic tumors/cancer is for complete removal of the tumor and some of the surrounding area. We will meet with the radiation-oncologist hopefully next week. Right now he is on vacation and won't be back until Tuesday 8/3... However, Ed's Oncologist was e-mailing the radiation man yesterday and wants him to talk to Ed to get things moving immediately when he returns... So, starting next Tuesday a new plan of action will begin to be developed. Once Ed starts radiation, it will be on a daily basis with chemo still being once weekly... I don't know enough (yet) about radiation and what kind of a toll it will take on Mr. Fantastic, but know this, I will research my Ass off finding out. Oh, Ed now refers to himself as Mr. Fantastic because his body is working so well with treatment that what else could he be called. Ha. Lastly, the doctors took him off his daily chemo pill... They do not think the spot on his lung is cancer and appears that there has been NO spreading, also a huge big deal. If the cancer had metastasized, surgery would not be done, it would be considered "too late" to do antyhing. I realize I'm rambling but it is a very complicated and hateful cancer.

Anyway, the greatest thing he said to me last night right before I was finally calm enough to go to bed was this: "Looks like we can start to plan a wedding for next summer" Now, really, what man actually says that to a woman?! Wouldn't it be more like... "I think we should wait and see, maybe 4 or 5 more years, why rush into things" Ha. Looks like we'll be getting that french bull-dog, Hank, sooner than I thought!!! It is what I promised him when he hit remission. I'm NOT cleaning up after the dog, that's all I have to say about that.

Well, we are planning on celebrating big-time this weekend out at East Harbor and Monsoon Lagoon... Again, anyone interested in joining us is MORE than welcome at the Lagoon. We will probably be there from about Noon - 6 p.m. and then hit my Mom's cottage for the rest of the evening. Hopefully get out there tonight by 6 p.m. to get things ready for the Larkman's to join us - music, dinner & drinks on the deck tonight... Ed will be fishing until it's pitch black out - no doubt about that. He has been sorely deprived of his fishing time this summer and I miss reading my trashy novels...

Love to you all and please keep those prayers and good wishes coming... It seems to be working! XOXOXOXO MK & Ed

Sunday, July 25, 2010

Hershey PA... 100 Degrees F

New Week Ahead of Us

Sunday morning... I want this day to be near the end. I know I should not wish time away, but Ed comes home to me tonight for this week. We have another very special weekend coming up on the 30/31st, with Dar's family. Monsoon Lagoon on Sat., one of my favorite things to do when we are in Marblehead. If anyone has nothing to do on Sat., come join us at there swim up pool bar! It's only $20 for the day and we always have a blast! Pools, Water Slides, Go Carts, Putt-Putt, Bumper Boats... the kids always have so much fun and it's only 1 hr. 15 min's from home, ... check it out - the more the merrier! It's a really small park, so no matter where you are sitting, you can actually see your kids when they are in the water! Paige is Nat's personal life guard, so that is awesome. Oh, and Brad Paisely/Darius Rucker - O M G, what an incredible show. Ed and I were like two teen-agers all night long, soooo much fun. Check out my pic's on Facebook if you get a chance.

Tomorrow is CT scan day - I'm so trying not to get my hopes up, but it's hard not to. I realize the odd's are not in our favor, but I just cannot go down that road yet that surgery won't be possible. Chemo on Thursday as well as a sit-down with the Oncologist. I will let everyone know what the resutls are as soon as we know something.

I was thinking this morning how much I hate to date... There is a reason I was single for all of my late 20's/30's and the first 3 years of my 40's... Dating sucks. I hate getting to know someone, then you find out that it's all smoke & mirrors and the person is not who you thought they were. Turns out, that is true, Ed was not what he appeared. He had a reputation, I knew everyone loved him dearly, who needs that kind of pressure. I thought he was all cool and slick, I had gotten to know him better between our 20th & 25th reunions, but still - too cool for me. I mean, no one could be THAT nice or THAT good, right?! Wrong, not only was his reputation right on, there was so much more to him. He's honestly not that cool... It's more like this... He is sweet, kind, caring, generous, an outstanding father, a good listner (lord knows I need one of those), funny as hell, goofy beyond belief sometimes which is the most adorable thing ever, compasionate, the best friend anyone could wish for, good-looking beyond belief, a fantastic kisser, respectful, honest, and the one thing I needed most of all.... Trust Worthy. I never thought I would trust anyone again, and I do with my entire heart and soul. He will forever be the greatest gift in my life, 2nd only to my daughter. So, pray or hope or do what you do so the man upstairs knows that we need him hear, not only for me, but for his girls and Paige. And yes, Ed and Paige would tell me to stop being such a drama queen, but hey, it is what it is..... So, love those you have every day with whatever you have inside of you, because a gift as precious as true love is a rare and wonderful thing. So, being seriously single for 17 years was worth waiting for that right one, I don't regret a day of being alone all that time. If God knew I had to wait, then I'm praying he knows to leave him with me/us.

Don't forget -; there is a new post on the site about sending more letters to the house/congress for research. I keep sending my letters!

Much Love - MK

Wednesday, July 21, 2010

Week Off!!

Hi All... This is Ed's week off chemo (3 on/1 off). He is feeling fairly well. The Tarceva (erlotnib) is starting to reak havoc on him again. He has to take benadryl to tolerate the side effects. He hates this pill most of all. He can handle the weekly chemo drips, but this medicine makes him miserable. We are just patiently waiting for Monday 7/26 to arrive for the CT scan, then meet with his Oncologist on 7/29 for result review.......... For the first time ever, I want my man to have major shrinkage - we need to get that tumor out of his pancreas!!!

We are going to see Brad Paisley and Darius Rucker this Firday evening - Yeah.... VIP Tickets - but what else does Ed deserve really, nothing but VIP treatment! Strongsville home days start tonight, so needless to say, I will be taking Paige and her friends tonight & Sat., and I believe they are planning on a Friday visit as well. Oh, it's no St. Elias, but really, what is?! Ha. Tonight The Breakfast Club is playing at the home days, so at least we'll have some Rockin' 80's tunes. I believe Ed will be coming up there tonight as well with his girls & their friends.

Well, Enjoy the rest of your week everyone........ Stay Cool xo ;)

Thursday, July 15, 2010

Chemo Round 2 / Drip #3

Today is Chemo drip #3 in round 2 - hard to believe 2 months of chemo have been completed after today. At times it seems like this has been going on forever and other days it seems like the news was just given to us.

Ed will get next week off from Chemo, but should be starting a new prescription of Tarceva (erlotnib) today or tomorrow, depeding when it arrives. He is not happy about that, this med makes him feel like crap daily. With the chemo drip, he has about 36-48 hours of flu like symptoms and that he handles like a champ. He is my HERO every day! His attitude is excellent 99.99% of the time.

The next CT scan is schedules for 7/26 at 9:30 a.m. - our prayer is that his tumor has shrunk and that there has been no spreading and that surgery may become an option. I know that this is highly unlikely, but I pray for it daily. The only way to have a fighting chance with pancreatic cancer is to have it removed, then continue the fight with the rest of the body. It's entirely such a nasty and aggresive diesase. On the bright side, Ed is happy and feeling fairly well. We (well I) did yoga on Monday, Ed can only do a small number of the positions as to not promote organ cell growth, so I am sore - he is not! He had band practice on Tuesday and went fishing with Gus Ferrro last night - he's feeling pretty well!!!

Well - chemo is at 3 p.m., which means we will be downtown until atleast 5:30 p.m. They never start on time, they are usually so backed up by this time in the day that he is always pushed back... We may try and get his chemo changed to Friday mornings at 11 a.m., we did that after our Hershey trip and it worked so well. I also figure that would be a better time when snow starts to fly - Ugh. Hard to think about that when we've been having these incredibly hot days!

There is a book I need to get, off topic kinda, written by a woman with cancer in her 20's, a very severe form of Thyroid cancer... looks like a really good read for younger person's with cancer. Granted, we are not in our 20/30's, but we act like it most of the time, so I figure it would be beneficial. It's entitled "Everything changes, insiders guide to cancer in your 20s & 30s". Would like to pick that up at Borders, possibly tonight.

And finally, hoping to hit my Mom's cottage this weekend. We have not spent one weekend out there yet this summer with everything that has been going on, I miss it terribly. I usually am a nice brown-bear color by now and have read at least 4 or 5 novels - Nothing this year. I need about two weeks on a beach (or ship) with 4 good books and some ice-cold beer, then maybe I'd feel normal (well, normal for me).

Enjoy the rest of your July all.... - Know it. Fight it. End it. xo

Friday, July 9, 2010

Round 2 / Drip 2 / 7-9-10

Well, after a mini-vacation to Hershey,Pennsylvania (*cough* Steelers Suck *cough*)we had chemo today (Friday a.m.)... Emily was a god-send, she stuck Ed in a blink of an eye - Chemo Bag was hung pronto and his labs were all very good! He is not currently taking his "chemo" pill due to a bad reaction (doc thinks he may have an allergy to that med)... He was feeling good afterward and we had a nice lunch. Hopefully he is sleeping NOW. Sleep is still not something he gets nearly enough of.

He will start a new prescription-chemo-pill later this week, 1/2 the dosage and hoping for no reactions. His CA19-9 (tumor maker) dropped to 5,000 (it was originally at 28,350 just 6 short weeks ago... this gives us much hope, but is still a HUGE number... However, this feels like a victory in our battle. It made the ride home quite a happy event as everyone's mood was much lifted by this news yesterday.

Hershey is a great little park! Two days in record breaking heat, thank goodness they now have a water park area. We would never have survived all day without swimming in the mid afternoon, then back to the rides! No "huge" coasters, but some really fun ones... Also a good park for the non-riders in our group. For Ed and I this was fantastic - we had never done theme-parks together before and we have done Cedar Point & Hershey this summer! It is the summer of the Coasters!

Will keep you all posted as we continue to move forward in our battle.

Don't forget Know it. Fight it. End it. It is the silent killer and needs to be pushed to the forefront of research! Do what you can - even if it is just sending a letter to your state representatives - the website can show you how.

Friday, July 2, 2010

Round 2 Has Begun

Ed received his first chemo treatment for Round 2... Ugh... 3 p.m. appointment and they didn't hang his drip until about 5:30 p.m. It is already so stressful and the additional waiting just turns me into a monster, I swear, I'm like Shirley MacLaine in Terms of Endearment.... "Get My Boyfriend A Blanket - He's Cold". But it went well and Ed was tired but feeling fairly well. Today, the day after, is always difficult. He of course didn't sleep much, so hopefully he'll only pull a half day of work and come home and rest.

We went for some dinner after chemo then got to visit a little with my cousin Lisa & her Fiance, Mark, who are home for the holiday weekend.... Yeah. Oh, and Jassmine their entirely sweet pitbull whom I've fallen in love with. We Love when my cousins come home from Charlotte and Atlanta... Dan will be home today :)~ My family is completely awesome and I could not have hand picked a better family if I had the choice. Oh, and same for our incredibly wonderful and supportive friends - You All Rock!

We continue to pray for our miracle but try to remain realistic as well. Ed is a much loved man and I continue to remind God on a daily basis that we need him on earth for a very long time.

Happy and Safe 4th of July everyone! Hope your weekend will be filled with love and joy... I know ours will! xo xo xo MK & Ed

Thursday, June 24, 2010

Week Off

Ed has this week off from chemo - Yeah. He has been very tired this week and is having some trouble sleeping. Well, we start Yoga on Monday so maybe that will help! I love being engaged to him, he is truly the sweetest guy you could ask to know. We are taking the girls to Hershey, PA for three days in July and cannot wait for some fun in the sun! Yippee.

To everyone that supported us on Sat. night at Dickey's - Thank You doesn't seem to cover it, but THANK YOU. Ed had great fun seeing everybody and he hung in there until 1 a.m. which shocked us both. It took us three days to recover but was more than worth it.

Much Love MK & Ed xo

Thursday, June 17, 2010

Session 1 - Round 3 - complete

Johnny G took Ed today for his 3rd round of chemo in Session #1 - He's doing fantastic.... He gets next week off! Then Session #2 will start, he will do at least 3 sessions before we can CT scan again to see if surgery is an option... probably not, but we are praying! And, he proposed to me on Monday, very romantic and a beautiful ring! I couldn't be happier and more scared all at the same time. He is truly the love of my life and I would do anything for this man! xo All :)

Friday, June 11, 2010

Chemo Session 1 / Round 2

Thursd., 6/10 - Session #1 / Round #2 - Chemo Complete! Ed tolerated his treatment very well, we ate afterward & went for a walk, then he was done! He's feeling pretty good this morning! :) xo All!

Tuesday, June 8, 2010

New Week

Tuesday, 6/8.... Paige's graduation mass tonight / 9 years of catholic school, DONE! The only thing I will miss is the uniform, all kids should have to wear a uniform of some sort just so they look decent at school. I know, I know, a lot will disagree, jmo.

Ed is feeling fine this week - he will be at mass tonight then going to practice with Newport... will keep everyone updated on when he will be playing out!
Peace! MK

Saturday, June 5, 2010

A Good Saturday

Ed was feeling MUCH better today than on Friday... So, if he only has one bad day after chemo, we can live with that just fine! :)

Friday, June 4, 2010

Friday 6/4, Feeling a little "flu like" and tired. Paige has her graduation dance tonight, hopefully get some nice pics of the two of them together! Then I will Make, and I mean, MAKE him rest :) xo

Updates on Eddie Luv!

Wow, cannot believe I actually did it! Now, let's see if I can figure out how to work a blog?!

6/3/10 - First Chemo Treatment, 30 min's - went very well. Ed is feeling terrific and appreciates everyones good wishes and prayers!

Good place to check info on his specifice disease: