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

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