My End of the Road

It's been awhile but rightfully so.  The last few of weeks have been different but not for better reason.  Each night I go bed, I come to the reality that today was not better than yesterday.  My energy level is becoming more and more decreased.  I got my daily shower today at about 5 this evening.  It's good that I got a shower but I really struggled with getting motivated to do that.  I'm often catching myself each day watching how I walk.  My legs are giving me a fight sometimes now where they don't have the strength to carry me through the house.  I'll have to stop and grab a stool to sit on for a second or I'll find a ledge to hang myself on temporarily while I plan my next course of step.  I don't always feel like this but it's happening a few times each day.  It's become depressing to watch myself and I know it's becoming depressing for Michelle to watch.  She's noticed and we talk it about it.   I don't try and do too much around the girls just so I'm not put in a bad situation that will make me look bad.  They are now fully accustomed to having me rest in my room in the back of the house with the door closed.  They don't see me too often.  Just looking at myself in the mirror, I can tell my downward spiral has begun.  I'm at my all time low of about 118 pounds.  I have an awkward time shaving my face because it is pure bone and I feel like I'm having to shave to every bony conture my face has.  My yellow eyes constantly remind my jaundice is settling back in.  This pretty much means things are going to eventually start shutting down.  There's nothing out there that makes sense for me to do to treat this that we haven't already looked at yet.  The approach is to treat all other sypmtoms like pain the best we can.  My other tell tale is that little bird that sits on your shoulder.  I have always been positive and remain positive with what is best for me, the little bird tells me it's that time and I'm not arguing with it.  The ugliness of the situation outweighs the needed fight.  I'm not really even really pleasant company right now with those that want to see me.  Chances are I'm sleeping or I'm just too tired to make it look like I want to carry a decent conversation.

The truth is my desired outcome from this situation is so very awesome.  The encouragement I have that my eternal life will be in Heaven and that I will be cancer free soon puts a smile on my face.  This has always been there, I've just fought the perceived need that I need to see my family as much as possible and do as much as I can for them.  My family does not need to see me anymore in the shape I'm in.  They need to see me at peace.  I have a million things to say here now but am overwhelmed with what I want to say so I think I'm going to have to come back with you in bits maybe from here.  I am very motivated about that the future has to offer me that there is a lot of reason to be excited.

I do know Michelle is keeping her chin high right now and it amazes me that she does what she is doing.  She's holding the family together all while watching me go through this.  The girls are awesome but they are still little girls which means there is a lot parenting needed.  They still need to be encouraged to eat dinner and help clean the table and do all the things that little ones don't love to do.  Watching her really tires me because she does it positively and she is still strong.  She's meanwhile putting a lot of finishing touches on funeral service that is needed like songs and scriptures.  You'd think this large "chore" would be overwhelming but it is so cool for me to watch her love being engaged in praise and music and scripture.  It definitely confirms I picked the right one.  She impresses me more and more each day with her godliness.  She is an awesome woman and I'm so lucky to have her.  Please continue to pray for her strength!!!!!!!!!! 

Thanks for all your support and I very much hope to share my thoughts going forward.  God is good!!!!!

Life can be hard, sometimes

Emily came home one day late last week and told me the sweetest story.
She has been down about Craig some at school and we are working through those sad moments one at a time. She said that she was sad outside in the bus line one afternoon sitting on the curb with her head laying down on her knees. Ben, one of her classmates, came up and squadding down in front of her and said

 "Life can be hard, sometimes"

Ben is a sweet little man with down syndrome. He is in her Kindergarten class. I would guess Ben knows how hard life can be but also knows how big of a blessing a little encouragement can be.
Emily told someone that story and they asked what she said back to Ben, she said it just made her smile.

Yep, I smiled too when she told me.
God works through the littlest people in the biggest ways.

Morgan's Birthday Pictures

Morgan's Pool Party with my Family last weekend.

Morgan and Hannah eating pizza



Party Animal

Emily and Claire

Sisters celebrating



Opening gifts



Birthday Dinner after going to see Beauty and the Beast (again)

Happy Birthday to you, Morgan!



Barbie for a 5 year old!

Hannah is excited.

the unknown and the ugly

Craig's hospice nurse came today. We discussed Craig's current health status, additional side effects as well as his goals and wishes.
I'm not going into too many details here today b/c there is no need and I am extremely emotionally right now and this post could get ugly really quickly.
Bottom-line is we are dealing with some ugly stuff and she would put Craig's life expectancy in the category of "weeks to maybe a couple months". The Tuesday before Thanksgiving Dr. Hamm said one month to three months. But with him being so young his body may take a while to give-in and as time goes on this could get uglier. We are in the unknown and the ugly. Period.

In a place where we are just plowing through?

Things are tough right now. Craig continues to decline but still has moments where he seems "fine". It is increasingly difficult to figure out how to navagate the day. Do I get full coverage of help where someone is  here with him when I need to run out or is he going to be okay for an hour? This is a struggle. One would think, get help just to be on the safe side but then he will rally and be able be by himself and even be productive around the house... the inconsistence makes me a crazy woman.

This morning I was pulling out of the driveway and Morgan wouldn't buckle in her carseat and I wanted to lose it. I buckled her in and then cranked up christain radio station and thought I need a HUGE dose of Jesus right now or this ship is going to sink. I began to think we have come to a point in this journey that it is just time to plow through. Just GET THROUGH this. There is not a lesson to learn here, just dig your heels in and survive through it. We have taken each struggle as a learning experience and clung to Jesus for guidance but I figured this was just the fork in the road where we are just going to survive it and learn a new path when Craig "moves" out. God stopped me right in my tracks. The lesson here is to continue to cling to Him in this stage of the game as well as the future. Thank you God for the awesome sound system in my car so when it comes to worship, I can do it loudly. (Yes, I was that crazy woman who sings in the car next to you at the stop light.)

Morgan's Birthday pictures to come...

thankful Thursday

Craig via Michelle typing b/c if you have recieved a text from Craig after 9:00 you know he shouldn't be typing. 

-I'm thankful that Uncle Brad made into town save and sound.
-I'm thankful the increase pain meds have worked
-I'm thankful the girls are excited about this weekend. Pool party for Morgan's B-Day with the fam.
-I'm thankful for the continuous prayers.

Michelle:
I am thankful for my peeps at church. My facing adversity group is so encouraging and wonderful. I am so thankful to have a great group to call home.
I am also so thankful great friends and the support of so many.

Have a good night.

Just an update...

...since my facebook is blowing up. (PS thank you for all the sweet messages)

Craig's pain level has elevated over the past 48 hours. He has increased his pain meds which intern will probably make him sleep more. He is jaundice. Hospice was here today and got some medicines adjusted and talked about some future plans. Overall we are in the unknown of how much time we have left with him. It could be days, it could be a couple weeks. We're not sure. He is out of pain now and watching mindless TV so for this minute now we are "fine".

Last night was tough, I was reading over many post I wrote in the past year. I never wanted to lose him but the cancer life I would like to lose. The reality that they are one in the same is really hard to come to terms with. It is a tough journey and I will be content to see the cancer life go but so incredibly sad to see my husband go with it.

Happy Valentine's Day continued...

Valentines Day from my account today:
6am, phone rang, it was the automated message from Oldham County Schools letting us know schools were on 2 hour delay which was a pleasant surprise, no huge rushing around for the majority of the morning for Michelle and the girls.
7:30, Emily worried that Michelle overslept becuase the sun was coming up and that wasn't normal so she got herself out of bed, got dressed by herself and came in to wake up Michelle.  I thought it was sweet she let mom have those extra few minutes to sleep in.
7:45 The girls were up and were surprised by their V-Day presents.  I was up a few minutes later and enjoyed breakfast with them.  Michelle got them ready and off to school and I was back in bed by 8:15 asleep soon after
11:30 I yelled from the room after waking up, you still want to go to lunch.  Looking back, that's not the most romantic thing to yell but I think she knew it was genuine because I have a hard to getting back up before noon.  I asked her the evening before if I could try and treat her to lunch.
12:15 Lunch at Chili's, it was something easy and more about being with each other.  I was pleased we made it out together and we cherish the time even though I'm so tired and uncomfortable.
1:30  Back at home and I've slipped into something comfortable...sweat pants and a long sleeve tshirt; I was back in bed asleep, Michelle spent quality time with the girls and learned about their parties at school
5:30  I was woken up for dinner time, Michelle made a heart shaped pizza for dinner and the girls enjoyed it.
6:15 Spent some quality time with the girls watching a movie and learning about their day, I was back in bed around 7 for some rest, the girls wear me out
9:00 Watching the Duggars new episode with the Michelle
I share this to shed some light on our day to day.  It's not pretty, it's the norm though unfortunately.  I've been in increased the pain the last few days and to put it bluntly, my liver hurts.  It hurts to sneeze, belch, take a deep breath, and those are harsh pains.  It's dull but consistently hurts around the clock.  We meet with the nurse tomorrow and may change up some of the pain meds.  My issue is I take pain meds so regularly that I think that takes a toll on my liver so it's hard to imagine increasing that.  Things are unfortunately getting worse and I've got that bad feeling.  I'm still optimistic I may bounce back some here soon.  Anyways, we'll continue to take one day at a time and thank God for each living day and let Him drive the ship.  I pray for as little ugliness as possible throughout the next weeks/months.  We are excited to have some of Michelle's family come to town this weekend including the beloved Uncle Brad.  Let's hope it a good one and we get to enjoy Morgan's birthday weekend and week next week.

Happy Valentine's Day

Just a little note from the Merimee's wishing you a Happy Valentine's Day. I did a little google history search. Did you know that "St. Valentine" was killed on February 14th. Goodness. What the heck are we celebrating?! He was killed because he was marrying Christians and refused to give up his faith. Anyway, here's your history lesson for the day, brought to you by google. http://www.catholic.org/saints/saint.php?saint_id=159

Happy Valentine's Day from the Merimee girls.

This is Hannah's smile when you tell her to say cheese. She is such a little ham.

Silly LOVEly faces

Love bears all things, believes all things, hopes all things, endures all things... Love never fails. 1 Cor 13

Come on - you can't have a V-Day post without a little Corinthians in the mix. You had to have seen that coming. :)
Happy Valentine's Day!!

We've been slackers

Okay so apparently we are slacking on the blog posts here lately. Craig update was short and sweet and even if you read between the lines I'm sure it didn't give a good pictures of what goes on in this lovely household. If you don't hear from us we are "fine". What does "fine" mean? "Fine" is defined for now as Craig sleeps most of the day, gets up to eat lunch and shower, the late afternoon is a mix of naps and watching cartoons with Emily after school. He sometimes eats dinner and sometimes just sits with us and munches on a snack. That is a "fine" day. Not so "fine" moment is stomach aches and a hunched over husband in the kitchen. A not so "fine" moment is the fatigued look that a simple shower can do to him. Another not so "fine" moment is simply sitting in the living room rather laying in bed is painful.
So if you don't hear from us it is usually a "fine" day with maybe a mix of not so "fine" moments.

I still have not lost faith. I know that His plan is still the best plan for our family. I hang on to the Hope that our story still has a fairy tale ending. I hold on to the fact that this is not our home and that Craig will simply have heaven before we do.
On the way home from church today Emily asked how old Jesus was when he died. We go over my age a lot. She tries to make sense of the situation. It is a tough lesson for a 6-year-old to figure out that some people get less than 80-100 years on this earth.
So that conversation in the car today was the following:
Emily: How old was Jesus when He died on the cross?
Me: 33
Emily: wow, that wasn't that long
Me: nope your right, but look at all He did in that short time. Healed the sick, taught people how to live.
Emily: He did a lot of good things.
Me: See it doesn't matter how much time He gives us, it is what we do with it that counts. Dad has done a lot of great things with the short time he has had. He ran two banks, had three kids, told a lot of people about God.
Emily: He is still here but he is going to heaven.
Me: yep
Morgan: (chimes in here and there)  I want to go to heaven but not for a while.
Emily: yeah me too. Mom, you going to heaven?
Me: Yep, b/c I know Jesus and He going to let me in.
Emily: What happens if you don't go to heaven? You just get buried?
Me: well that or you go to a place called hell. (why not? we're already knee deep.)
Morgan: I don't want to just get buried. I know Jesus.

It is about as simple as that. The rest of this "stuff" is just the pain of this world.                                                             

The past couple days have had more not so fine moments which of course is worrisome. Usually a bad afternoon is followed by a rebound but we haven't seen a rebound since maybe Wednesday or Thursday. Is this a couple rough days or not... ?? It is frustrating. It is hard. It is so hard to watch someone detearated in front of your eyes. The question that pops in my mind more often than once a week is "really how much more of this can I take." I found peace at church today. We started on The Story this week. We began with creation and then Adam and Eve and then on to Noah. To back up that far into our history has given a peaceful perspective that God is always in control. Always has been, always will be. So the answer to the question "how much more of this can I take?" is not in my hands, never has been. I have an addiction to Matthew West's new album. My theme song is  http://www.youtube.com/watch?v=knuHDPbE5es&feature=related.

The trip to Hilton Head next summer continues to come up with the girls. They know that Craig will be in heaven by then. They look forward to the trip all year but when the trip pops into their heads most of the time they remember that it will be "different" since dad won't be there. There are times that Morgan forgets that he won't be there. The other day she was asking if I would ride in the back with her in the car on the way down to HHI. In the past get them going on some games and then sit in the front seat about half the time. I have been driving 100% rather than Craig since mid-December so she was trying to figure out who was going to entertain her in the backseat for the long drive. I told her we would probably drive down with the Deitzs and then she asked if that meant that Daddy would ride in the back. It is heartbreaking to have to remind them that it will just be us going.

Tonight Morgan's bedtime prayer was for Dad to be alive on her birthday. I asked her if we were ever going to be ready to let him go. We all agreed we weren't going to be ready to let him go but we wanted him for Morgan's birthday for sure. Morgan will be 5 on February 22nd.

So to say it is hard right now is about the biggest understatement of the century. Pray for us.

Just Another Day

I'm still hanging in here physically but these days can be tough.  I feel mostly similar to how I've been feeling.  I'm still tired and the last few days seem as though I've been a little more tired.  After today I'm a little worn out.  This amount of stress builds up sometimes and it's hard to deal with.  I can become hard to deal with.  Somedays I'm great, some days I'm hanging on a string.  I do need some good time.  Michelle has been great to me and I hate it when I become hard to deal with, I'm sorry for letting the day get the best of me!  We'll take prayers for support and strength, this is hard.  I'm worried the being tired is taking over.  That's all I've got for today.

Pancreatic Cancer Action Network - Louisville

The Pancreatic Cancer Action Network, www.pancan.org, is the country's largest advocacy organization aimed at making advances with pancreatic cancer.  It covers everything from helping patients with education, clinical trials, support etc to creating awareness within government to raising funds to promoting research in the health care field.  The organization covers a lot of ground.  One important aspect of the organization is recruting and relying on volunteers throughout the country to help with all of the above.  Many cities across the country have a local "affiliate" status which means they have a significant amount of support and number of volunteers to hold regular meetings and organize large fundraisers like the PurpleStride walk which I participated in in Indianapolis last year.  Most major cities and many middle size cities have an affiliate status with PANCAN.  Some communities have a "community representative" which organizes events that create education and awareness.  These representatives do a significant amount of work but may not have enough local support from other volunteers to make the community a fully named affiliate.  In Kentucky, we do not have any affiliates but we do have some very hardworking community representation in Paducah, Lexington and Henderson.  We surprisingly have not had any official PANCAN volunteer support in Louisville.  The size of Louisville definitely should be able to support an affiliate chapter.  The good news is a few people here in the area have individually contacted PANCAN including myself about the starting some official representation here in the area.  I'm glad to say we have started a group here and Melinda Smith has stepped up to lead us and is listed as a "community representative" for Louisville.  Melinda currently works as a HR manager for the Salvation Army and her story includes losing her mom to pancreatic cancer last year.  One of our main goals right now is creating awareness about our group and getting our name out there.  Right now, we are simply asking you to consider "liking" our official facebook page for the group.  This will allow you to be made aware of any events we put on which could be a monthly meeting to discuss our initiatives or a social meet and greet to many different things.  I'm also going to include Melinda's email on this post which I would encourage you to contact her to be added to our our email list which will also keep you aware of any events we hold.  Getting this group started is a hope of mine because support is so needed in this area.  I'd love for our area to eventually reach affiliate status where we have a strong corp of volunteers and we are able to host our very PurpleStride Louisville or better yet, PurpleStride Kentucky.  The walk I did in Indy was so very uplifting and had over 800 people attend the event.  The Louisville community has always been so supportive and generous and i know the support is here, we just have to get the attention needed from the many families and friends that know and understand how devastating pancreatic cancer is.  Please join me in "liking" our facebook page and email Melinda if you'd like to be kept up to date with the group.  Here's some of our links for the group:

Pancreatic Cancer Action Network - Louisville Facebook
http://www.facebook.com/home.php?sk=lf#!/pages/Pancreatic-Cancer-Action-Network-Louisville/314763741901439

PANCAN Louisville Website (not very updated yet, work in progress)
http://www.pancan.org/section_get_involved/volunteer/affiliate_details.php?id=153

Melinda Smith, community representative for Louisville (email to get added to email distribution list, we will not be spamming you either): msmith@pancanvolunteer.org