Post Christmas Blues

I think everyone gets the after Christmas blues. It is like there is a wall in your plans of life, before Christmas and after Christmas. You just have the get all the Christmas "stuff" done, planned, wrapped, baked, cameras charged, blah, blah blah. Then the day after Christmas you look around and just think what do we do now? What did we talk about before the topic of Christmas came up? So we have been in a little bit of post-Christmas funk, well it may be more than just post-Christmas funk... but that is what I am tagging it as b/c I really can't put my finger on the true emotion. We have been living in survival mode for so long with treatment plans and cancer talks but this is a very strange normal. Christmas was a great celebration but it was also a great distraction. I am really not sure what to do with myself now. It all seems to be settling in, in a real way.

Craig was feeling great Christmas Eve, no issues at all. We even bickered after church, just like old times. We have been so far from "normal" I don't even remember what normal looks like but then I saw a glimpse of it and I was right back to a year ago of "I want my life back!!" Some of the emotions of October 2010 were right there all over again. Geez.

I am thankful for a great Christmas with a great family. It was wonderful to celebrate like we always have...at least one last time...

The girls are doing great. Loved their toys Santa and everyone else bought them. Hannah received a (not real) dog that walks, barks and pants. Morgan received a Barbie house and Emily received a Vtech gaming pad. Plus much much more and they loved it all. They got sleeping-bags from my brother and they have been "camping out" in their bunks for the past couple nights.

Margarit, Craig's hospice nurse, is coming over for a visit tomorrow morning. Some days he is good with only a couple naps and day a goes out for lunch or dinner and some days there is more napping than being awake and not a lot of eating. It is not very consistent either way.

So that's where we are, just in a funk. It has been great to catch up with friends that have taken some time off of work. We have an amazing support system that hears the tough conversations. anyway. I'm reading the book "Living With Thorns" for about the fourth time (maybe fifth). It is such an insightful read. I have highlighted and underlined more than I leave blank. I highly recommend it to anyone that's life has taken a turn in a direction they hadn't anticipated.

 

Hope everyone received the peace and joy that the birth of Jesus promised us and had a very merry CHRISTmas!!

Merry CHRISTmas 2011

For unto you is born this day in the city of David a Saviour,

which is Christ the Lord.

 Luke 2:11

(three of the best gifts I have ever received)

A Christmas princess with three little princesses at the Galt House Kaleidoscope event

Santa with Emily and Morgan.

Hannah was a bit too shy.

Merry CHRISTmas to all and to all a good night!

P.S. If you are still looking for a Christmas service, SECC (Blankenbaker campus) has services at

1:00p, 3:00p, 5:00p, 7:00p, 11:00p 

Hope to see you there!

(There have been a lot of break-ins in Louisville so I don't want to post when we will not be at our house on a public blog but if you want to meet up with us, email me.

 That is not very Christmasy is it? sorry. )

Posted by Michelle, on Craig's laptop

I can't say it was a good day...

Nothing out of the ordinary but Christmas chaos for a 6-year old and 4-year-old, on top of a stressed trying to keep everything together wife and a tired but not tired enough to sleep all day husband is a UGLY combination. Kids are Nuts the week before Christmas. I think they might be more sane if they were on crack (insert sarcasms here).  You add that to a mix of emotions and questions that don't have great answers and you have a mess on your hands. Then you have a mom that is trying to keep this train moving and watching for kids who need help you have a mess on your hands. Then you have a husband that feels a little bit better the last two days but not good enough to chase an 18 month old or play a game with the older girls but is not tired enough to sleep... you have yet another mess on your hands. So we were a mess this afternoon and into the evening. Sisters fighting, baby grabbing things that will break, mom trying to scrub the kitchen floor, dad trying to feel like a human, caroling toys going off just when you think you are going to lose it, calls to friends... I think I am going to lose it... hang on, their might be blood-shed from all the sisterly love going on in their bedroom over a cardboard box, screaming "it's NOT fair!", mom chasing screaming little girl, that is not going down in my house sister, baby crying b/c favorite sister gets in trouble, poop b/c of too much fruit consumption at dinner, mean diaper rash.... It was like a calgon commercial. Ugh.

I don't know, I can just say that I am glad that every child in this house is nestled snug in their beds and I can only hope that visions of sugar plums are dancing in their heads...

I hope we have a better day tomorrow.
I hope to post our CHRISTmas card post but this chick has got to simmer down for a bit tonight....

What do the girls know?

For a long time we kept the information that the girls had at a minimum. They always knew what was going on day to day, we read books about cancer for kids, what chemo is supposed to do etc etc. They were never brought into the know about how deadly pancreatic cancer was until Saturday afternoon.
We spent late morning at the Galt House for the Kaleidoscope Christmas lights and then lunch afterwards. Hannah went down for her nap after we returned home and Emily and Morgan retreated to the basement as usual so they don't have to hear "SHHHHHH Hannah is sleeping!!" a thousand times. When they came up about an hour later we watched "Elf on the Shelf" (for the 10000 time) and then I started to bring up really how sick their daddy is. Friday when our Hospice team came over the chaplain that came in gently prompted me that they probably needed to know more than Craig has stopped chemo since they have no frame of reference on what exactly that means.
I can tell you how I began the discussion but from there it was about 25 minutes of me just simply trying to keep up with questions and comments. They were all over the place. So I started by asking what they thought it meant that Daddy stopped taking chemo. They weren't really sure and I got a couple blank stares. I then asked what happens to someone when there isn't any medicine left to take for their illness. Blank stares still. So I asked what happen to Paw-Paw (Craig's dad) when we ran out of things to help his heart? They responded with "Oh he went to heaven." like it was a game show and they were trying to get the right answer. Then mention that the cat, Grace was there as well...I'm telling you this conversation was all over the place. So Emily commented well I hope Daddy doesn't run out of medicine to take. And then I had to look at her square in the eye and tell her "we are out of medicines to help Daddy" and then she asked, so is he going to heaven and I had to answer not today but soon. The questions began to flood in and I was simply trying to keep up. They were not panicked or upset but they wanted facts and they wanted them quickly. They wanted to know about heaven and NOW! We got the Bible out and read scriptures about how Jesus told Peter the night before His death he was going to prepare a room for Him (and his followers). Emily got her Bible out and followed along with some of the scriptures we were pulling. (There were questions why the pages looked different...ugh stay on the subject and then they came back around). It is more than awesome to have the such an incredible story to tell them about what heaven is like. I have told them that Dad will get a brand new body that will not be tired or sick any more but since we focus so much on the fact that Jesus came back after He died on the cross it is hard to convey the finality of passing away. So I asked them if they understood that once Daddy gets to go to heaven we won't be able to talk to him any more. They quickly corrected me, "oh yes we can. we can pray to him and he will hear us." I stand corrected, yes you can pray to Jesus and ask Him to tell Daddy something that you want him to know anytime. And they quickly pointed out they don't even have to say it out loud, Jesus can hear you even when you don't talk... and that is what praying is... WOW! They are so much further along in their spiritual journey then I am sometimes. They did continue to say so it will just be a girl-house? There will just be four of us then? (role call is a big deal to 4 years old, Morgan seems to go through who will be included in certain activities and one of her favorite things to do is to name members of her family starting with her favorite and moving down the list). So they understood what it meant when Craig is not with us, he will not live in this house, and it will just be the four girls. Morgan thought for a couple seconds and then moved on with her evening. Throughout the conversation Morgan was insistent to know HOW Craig was going to get there? I didn't have a go-to scripture so I told her we would ask a pastor at church b/c they have studied the Bible much more than mommy. She even mentioned it in the car on the way to church Sunday morning. "don't you forget to ask him, mommy!" So I did Sunday... scripture to come... hopefully.

I have always been told not to give a time frame since they don't get what later or one to three months will mean. I did let them know that Daddy will be here for Christmas (probably a little risky but he has been feeling okay and we are in the week of Christmas so I felt okay saying that) but then I asked what the next holiday would be. January is next after Christmas... what is in January? Daddy's birthday. So I let them know that we weren't sure if he would be here for his birthday, we would just have to see. Morgan accepted the "we will just have to see" and I anticipate that when that event comes closer we will have to watch her closer for her signs of anxiety. Emily looked heart broken. After a little more discussion we moved on with our evening. Emily came up to me a couple times after letting some of the facts discussed sink in. She came up to me in the kitchen while I was throwing dinner together and asked what would we do if Daddy was still here for his birthday. I replied we will celebrate like we have in the past with lunch out or cupcakes at lunch or whatever he wanted to do. And then she asked what we would do if he wasn't here... I replied with whatever you want to do, we can write cards for him, or have cupcakes and celebrate like he was here. She then said that she wanted to get in a plane. I wasn't getting the point, "a plane!? Where do we need to go?" She replied, "It doesn't matter. We just need to be in a plane so we can be as close to him as we can." I told her we would work on that when the time came but it sounded like a good idea if that is what she wanted to do. I was floored that she would come up with such a plan that would put her physically closer to him. So sweet.

We have had a couple follow up conversations with her so we know it is on her mind. Tonight she asked how old I was and how old Daddy was eluding to the fact that I might die at the same age that Daddy would. I told her that most people get 70 to 80 years on earth but some die younger. She then asked what age my Daddy was when he died. I told her 49 and she said that is not old either. Yeah, I know this is not helping explain "normal", believe me I KNOW. She also asked why people can't go to heaven, get their new bodies and then come back. Just not the way it works and things are so awesome there that I don't think we would want to come back. Tough questions but I am SOOOO thankful she is asking them.

I wish I had a camera to video tape the discussion. It sounds pretty straight forward when I talk about it but I am telling you we were all over the place. The dead cat was mentioned a lot... the bible... some normal school talk not related to anything...why I had posted notes in some pages of the bible... what did those say... etc etc. I am telling you it was tough to keep up with... but I am so relieved they have a better understanding of what is going on.

John 14:2 Do not let your heart be troubled. Trust in God trust also in me. In my Father's house there are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. You know the way to the place where I am going.

Everyday is a blessing

I love blogging but it always takes a lot of me...and I don't have all the energy in the world.  I'd like to blog every evening and keep you updated on things.  Once I get 3 days behind, then I'm just overwhelmed by having too much to tell you and it really makes blogging seem like a bid undertaking.  The truth is everyday is a blessing and I cherish pretty much anything I get to do.  On Saturday, our family went to Christmas Kaleidoscope light show downtown at the Galt House.  Is this really big news?  Would a big smile appear on my face if I read on Facebook that one of my friends took their kids to see some Christmas lights?  It is actually big news in my eyes.  I was tired before we got in the car and Michelle gave me "I can do it, you don't have to go."  I didn't want to miss that time though.  No matter the days events, I love to lay my head down at night and say today was a good day.  It was a normal day by any account.  Time is very precious.  A day spent with the family is heaven on Earth.  I've been doing good these last 2 weeks.  I still take a few naps each day but I revolve my naps around that precious time and the precious event of the day we have scheduled.  I feel like there's so much to get you caught up on.  I don't have tons of enerngy right now but here's a few short excerpts:
We met my Hospice nurse last Friday morning.  She was very nice with a lot of experience in hospice care.  She's going to be lots of help over the next steps.  She'll basically see me in my home on a weekly basis and help me combat any symptoms of discomfort I have.  Hopefully we'll get to form a long relationship with her.  I'm happy and content with my day to day life these days and I hope this continues.  I'm enjoying life right now, especially being off chemo treatments.  My nurse is definitely vested with me and this situation.  Her warning to me was she was going to do her best at being more of a nurse than trying to be a motherly figure to me.  She has a son close to my age with kids and she mentioned at how much this situation hits close to home for us.  She is a real person and I truly feel she will truly be there for us.
Michelle had the big talk with my girls on Saturday.  There's too much to cover here so I'm hoping she'll try and fill you in when she has the time.  In summary, it went well but it's weird.  They know I'm sick but are convinced, we think, that I can be better served in heaven, where I'm not always sick.  I'm so glad my kids have been brought up knowing of Jesus.  They love Him and in a toddler way, trust in Him.
Sunday was week 3 of going to church with many friends.  It's hard to see of all of my friends who want to see me so we started a trend of, if you want to see me, go to church with us on Sunday and lunch afterwards.  It has worked out and we love doing that.  I love sharing my faith and it's good to see my friends.
Monday morning (today), I ended up going to the meeting that my new friend Jason Chambers set up with Mitch McConnell's office.  The two of us met with Terry McCarmack who is the state director for Mitch McConnell's office.  We are trying to gain support for the proposed legislation called the Pancreatic Cancer Research and Education Act.  The bill will force the National Cancer Institute to put together a strategic plan to fight pancreatic cancer among a few other things.  We currently have the support from 42 senators but neither of our KY senators have pledged being a cosponsor.  Today did some good and I pray Mitch can get behind it.  The initial response is it's not Mitch's philosophy to pick and choose which cancer he wants to put more support into.  On the eye level, this is not an unfair response but we left the understanding that this cancer have not been giving the "fair" awareness.  It is the 4th leading cause of cancer death in the US with 36,000+ deaths this year yet it receives 2% of the funding budget and there has not been any progress in 40 years.  The cancer has been largely ignored and every other large cancer has seen great strides.  I basically told him that 36,000+ Americans are not giving any hope, they are being told to pack up your stuff and get things in order.  There's lots of hope in cancer these days, except for PC.  I think we hit home with our closing and Mr. Carmack did say he would bring our attention and argument to Mitch.  This was AT LEAST what we could ask for.  We could have been completely been blown off and had our efforts been basically go ignored.  Next, I can just hope and pray that it is brought to Mitch's attention and the argument can be placed.  Thanks for the many of you that have called and also written letters.  Being part of the governmental process is definitely new to me but it feels good that a half way normal person like myself can raise an argument and have it heard. 
I'm done for the evening, I've been on here for over an hour.  I don't really feel like spell checking tonight so hopefully my thoughts will come out making sense.
As always, thanks for the support and prayers out there!  God is good!

Urgent Advocacy Opportunity

I copy and pasted the below email and message from a good friend of mine in Paducah.  One of our volunteers has a meeting set up with Senator McConnell's office next Monday.  I just called the office to express my support of this legislation, it took less than a minute.  Below, you'll find the number to call, exactly what to say.  I just called and it was easy, they'll take your address down after you are done.  You won't have to answer questions so don't be afraid of having to do more than reading your spiel.  You can talk with the person that answers the phone and go right into what you are supposed to say.  Obviously, we need a number of people to call to make an impact so please take one minute out of your day if you can.  To make the biggest impact, we need to call today or Monday.  Here's Carol's email to me below:


We URGENTLY need OUR ADVOCATE/VOLUNTEERS to TAKE ACTION!!!! We are calling Senator Mitch McConnell's office (502) 582-6304 in Louisville Kentucky on Friday 12/16 or Monday 12/19


To update you on the Senate: Right now we have 42cosponsors ...... we need 8 more to have half of the Senate.



On Monday 12/19 @ 11:15AM Jason Chambers will be meeting with Terry Carmack (State Director) We would like to have as many calls go through that office in support S.362 and Jason's efforts. PLEASE call on either Friday 12/16 or on Monday 12/19 during business hours



Hello, my name is _______ from ______, KY and I'm calling to ask Senator McConnell to co-sponsor S. 362, the Pancreatic Cancer Research and Education Act. I'm aware that Jason Chambers will be/is meeting with Terry Carmack on Monday to discuss this life saving legislation and I want to add my voice with Jason's in urging the Senator to join our call to the NCI to create a strategic plan to make real progress in the fight against pancreatic cancer - the most under-funded, most deadly and least known of the top cancer killers - one that hasn't seen significant progress in the 40 years the NCI has existed. This cause is important to me, and as his constituent, I ask for Senator McConnell's support.




Be firm, but respectful. We will not take NO for an answer. You may share your story or why you are asking....but keep it brief.



After you make you call please email me and let me know if any comments you receive.



PLEASE make this viral to ANYONE in the State of Kentucky (Family, friends, colleagues). This call could be the call to finally get a Kentucky Senator on board as a cosponsor of the Pancreatic Cancer Research & Education Act. S.362





Thank you for your support and for everything that you do in this fight.



Sincerely,

Carol
--

Carol Foreman LPN, Volunteer

Community Representative -Western Kentucky

Pancreatic Cancer Action Network
270-217-2328

www.pancan.org

www.knowitfightitendit.org

Other stuff

I was going to just add a note at the bottom of Emily's birthday post but it would just ruin a perfectly wonderful post about a cute little 6-year old. Had to draw the line.

Things have been pretty normal around here if you count not working (we have both taking leaves of absences from work) and Craig napping a lot, normal. We have been fortunate enough meet a lot of friends at church on Sunday mornings. It has been really great seeing so many friends together and getting to visit over lunch afterwards. The girls get in the car and ask who is going to meet us at church now. If we get to the point where no one meets us there, they would be mighty disappointed. They love showing new friends the ropes in chapel.

Last week was full of not-so-fun "pre-planning" appointments. The funeral home takes the cake for the least amount of fun. Fortunately they came to us but still on a scale from 1 to 10 measuring fun that appointment was in the double-digits negative! I am glad that most of the decisions are made. We still need to work on the service but that is more uplifting than the other details. Anyway... hope everyone is ready for Christmas. I am signing off here... I took Tylenol PM again tonight trying to get rid of this cold and I am to the point where I'm not going to be able to make sense...

Emily is 6!

Today was Emily's big day. Craig went to school and read her favorite Christmas book to the class and had lunch with her. She came home and there were some cute flowers from some Lexington friends, (thanks Aidan and Ethan). We had a Hello Kitty lasagna dinner and Grater's ice cream cake. She enjoyed opening gifts which included some new outfits and a new bike. Loved it all.

She looks older today. She has shed her toddler checks completely and really looks like a little girl. She is really maturing into a great little lady.

Birthday breakfast tradition! Love the feather clippy. :) It is sooo Emmy.

Daddy with the girls.

Emily is an AWESOME big sister! She is letting Hannah take a turn on her new bike.

Yum! Graters ice cream cake. Chocolate cake with vanilla ice cream.

There is nothing better than clean babies in clean PJs. Hannah is hamming it up.

She had an off night but calmed down after her bath long enough to take some cute pictures.



Thankful Thursday and Believe

Michelle:
I haven't done Thankful Thursday in a while and we have had a good week, tough appointments but none the less a good week.
I am thankful that Craig is feeling good and we can spend some time together during the day.
I am thankful for online shopping. It gives us the opportunity to Christmas shop on our couch since Craig is too tired to go out to the stores. We attempted Kohl's yesterday and it was a short trip. So I am so thankful for modern conveniences that help us make life easier.
I am thankful that we caught the mouse that has been living in my car... long story... hilarious story if you want to laugh hysterically like Emily did all the way to school.
I am so thankful Morgan's Christmas program was so cute and she had a great time with friends.
We are so thankful for the prayers and support.
We are so thankful for an amazing church that has made pre-planning so easy. The services that SECC provides is amazing and we are so blessed.

It is hard to write this and be able to express the magnitude of my gratitude. I have been moved to tears twice this past week just thanking God for a place for Craig to go. A place to be out of pain and suffering. I have never felt this level of gratitude in my life. He gave up His son so that we had a model to follow and pave the way to eternity. I have known this all my life being raised in a Christan home and going to Catholic Schools. It has never effected my life in such a big way until now and I feel so thankful for His ultimate sacrifice. So often we take for granite the Christmas and Easter story but when a love one is weeks or months away from getting to take advantage of His promise you realize the full magnitude of His love.

Craig:
This song has been on mind pretty much all day today.  To be fair, this is probably my favorite song and was before my diagnosis.  Just wanted to share this evening.
I can't quote the Book, the chapter or the verse;
you can't tell me, it all ends in a slow ride in a hearse.
You know the more and more I'm convinced the longer that I live,
yeah this can't be, no this can't be, no this can't be all there is.
Lord I raise my hands, bow my head, I'm finding more and more truth in the words written in red.
They tell me that there's more to life than just what I can see, I BELIEVE.

http://www.youtube.com/watch?v=Z9-FQMxO_-Q

Feeling Better

Skipping treatment on Monday was not an easy decision to be made but it has brought me a few good days.  The last 3 days have been about my best days in the last 4 weeks.  I guess it is true I feel best when I'm off treatment.  If I would have taken the treatment, I'd still be laid up in bed most likely and probably miserable.  The treatement may have helped me but the truth is I'd be facing another treatment next Monday.  I have so much anxiety that goes on with those treatments looming and I feel like I'm free right now.  I'm still taking naps and am still tired but I'm up and about and I've been out of the house a bunch lately.  I went to lunch with a few friends today.  Michelle and I got out yesterday and got to see the diamonds we picked out for my girls for the first time.  They are beautiful  We got a round for Emily, a square cut for Morgan and a pear shaped diamond for Hannah.  Tomorrow is Morgan's big Christmas appearance in her school's "Holiday" (We call it Christmas) Presentation.  Friday is meet with the funeral home to do some preplanning.  We've got a Merimee X-mas party this weekend and Emily's big #6 birthday is next Tuesday.  We've got a lot going on so helpfully my health buys some precious time over the next few weeks.  Thank you to all of you hanging in here with us.  My days are precious and I thank God for each and every day and ask for more days.  Tonight is short and sweet for you.

If you never got the chance or are willing to do it again, PANCAN is making it's last big push of this year to encourage our Congress to push the Pancreatic Cancer Research and Education Act to a vote.  We have some representatives here in Kentucky that have not pledged their support yet of the bill, namely Rep. Geoff Davis and senators Mitch McConnell and Rand Paul.  Here is a link to PANCAN's website that allows you to send a quick note to these representatives.  John Yarmuth of Louisville has pledged his support but we still need the senators.  Davis represensts Oldham County and all of the counties through Northern Kentucky.  Please consider taking a few moments to take part in this.  The bill will force the National Cancer Institute to put together a strategic plan in fighting pancreatic cancer which currently allots about 2% of it's budget to fight the 4th biggest cancer killer out there.
http://www.pancan.org/section_get_involved/advocate/advocacy_action_center.php

No chemo today...maybe ever

After Craig was feeling better Thursday night and into Friday the question of whether to continue chemo was brought back up. The appointment was held on the calendar. Hospice came Friday and at that point chemo was still in question and he couldn't be a hospice client and stay on Gemzar. There are some chemos they cover and you can be a hospice patient but Gemzar is not one of them. At that point we were suppose to call the insurance company to see if they would create a loop-hole so we could both.

We talked in length about it Saturday night and were leaning in the direction of not going to chemo.
Would it do any good? probably not
Would it make him feel worse? probably
Where was most of the anxiety and pain for Craig? the side effects from the treatment
Are we at the point of choosing quality or quantity? Yes, we have probably been there longer than we would like to admit to ourselves. And your first thought is quantity since he has such young kids, but is that fair to them or to him?

After an up and down weekend and a really rough Sunday Craig opted out of chemo today. Hospice really didn't weigh into the decision. He feels like crap most of the time. Whatever he eats makes him feel like crap. We watched a little bit of mindless TV together last night in the living room and I could hear the war going on in his digestive system right now. It is like his liver, pancreas, stomach are all SCREAMING at this cancer, YOU ARE IN THE WAY of us doing our jobs! And they are so exhausted. (that is a really strange image of organs yelling but you get the point). He is just tired all the time. His body is just tired. And chemo and side effects on top of that war may only make the war that much more hateful to his overall condition.

So here I sit in my living room trying to talk myself into get something (anything!) done while he sleeps/rest.
Not going to chemo today is very hard. It is a reminder that this is really happening. It is really happening.
To be (brutally, non-PC) honest, there have been moments where I have ask God to just take him. I can't bare to see him struggle like this. I can't stand the conversation at the breakfast table about Daddy waking little girls up throwing up any more. I have had moments where I have said this is just too much, just take him and I will figure out whatever new normal that means. It sounds harsh and some of you will probably think I am a horrible person but if you have seen someone suffer like I have seen Craig suffer you want whatever is going to take it away to happen! (Don't judge, you don't know.) I know that heaven is a place where there is no pain. With this type cancer there isn't a place on earth (hospital, doctors office, universities etc. ) that the disease can be taken from his body for good so if it means moving to heaven then at those low points that is what made the most sense to me. I use the term "moving" on purpose. I see Craig moving not leaving us. This is not our Home. He gets to go Home sooner than we would have liked (by about 50 years) but he can help prepare our Heavenly house until we meet again. And when you love someone as much as we love him, just take him and I will figure the rest down here.

But today, I am just so tearful that this is actually happening to my husband and best friend.

God can't have him until after Emily's birthday or Christmas, my heart can't handle that. I need a year to prepare for Christmas without him so please pray for more time... just get us into 2012 and then we will deal with it...

Life and Perspective

First of all, the outpouring of support has been awesome and helps drive us everyday.  I thankfully regained some strength back yesterday after a very scary day and I'm holding onto it.  I'm still tired and am taking naps and rests but being coherent and an actual person in the room is a great feeling these days.  I have tons of thoughts that run through my head and I've had one that came to me early this year but I saved this post.  The real truth is I do feel I have been very blessed.  I've obviously been blessed in the manner I know Jesus but I truly feel I have got to experience so much in my life and I wouldn't trade it if it meant I lost anything that I have experienced:

I first picture the 70 year old grandfather and dad who is staring down his death sentence of "fill in the blank."  He has kids that love him dearly and a wife of 45 years.  His grand kids are little but he loves every minute he gets to spend with them.  He also loves that he gets to go home at the end of the night when they are wound up and he gets to sleep peacefully in his own home.  5 more years would buy him the hard to achieve 50 year anniversary.  5 more years would have allowed his little girl who always looked up to him to have 5 more years with him.  It's never easy.  I next think of the 50 year old mom facing cancer.  50 is young.  This lady has got 2 kids probably in their younger 20's.  She got to see her kids graduate from college and helped mold them through the difficult teenage years.  She desperately wants 5 more years but she'd give anything to have a grandchild.  She prays hard but time proves to be elusive.  It's never easy.  I now picture the extremely handsome and unfairly intelligent 33 year old male facing a tough pancreatic cancer sentence.  He has a wife of 9 years and 3 beautiful young little girls.  He has been blessed with as much as you can fit into 33 years.  5 more years would be a God send and it would allow him to grow 3 relationships in particular that would ensure him he has daughters that remember him.  He could spend more time to ensure his girls have a father in their home that is there to be that "first man" and much needed man in their life.  A newborn baby would know what it's like to have a dad. 10 years, still a very proud achievement in this world, would be realized in marriage and that young woman wouldn't be forced into single motherhood.  Time though is still elusive, and it's never easy.  I then think of the 20 year old that is killed in a car wreck by a drunk driver.  The teenage years are hard but they are also an awful lot of fun.  That young female often has the dream everyday of what they are going to do when they grow up and move out of their parent's home.  Meeting the man of her dreams and raising a family are at the top of the list.  The dream never gets realized and the parents are heartbroken and wonder how could this happen.  This situation isn't fair.  Just 5 more years would have brought an entire life full of memories.  It's never easy.  I next think of the 9 year old little boy who gets a brain tumor and is not giving a shot.  His parents cry "why" everyday and for anything, they would do anything to change places with their little one.  If the 9 year old had facebook, he'd probably have about 50 friends.  He wouldn't have a lifetime full of friends but he sure would have some people that miss him.  All his friends get to play little league while he's got to do weekly treatments so he can maybe live another 5 years.  A nine year old has not seen enough of the world to know what he is missing but I can tell you, 9 years is not enough to fully experience life.  It's never easy.  Next up, the 2 year old who was the dealt the wrong hand of cancer; as if there is a right hand but you get my drift.  Losing someone this old is a head scratcher to say the least.  The parents feel absolutely horrible and are mad as hell.  It's still weird, the parents know that kid more than anything but by in large, people are going to feel bad for the parents because they don't know the kid.  Everyone feels for the parents.  That little girl did get to experience love for a while but 2 years is short.  I should end here because you know, comparatively, I've been EXTREMELY blessed.  I'd love to be the 70 year old in the above "crap" situations.  I can't end here.  The real tragedy in life is that there are little ones who never get to experience it.  They never get to be held by a parent or get loved on.  They never get to be told that can be anything they want to be.  They don't get to cry and keep their parents up all through the night.  These little ones without a voice are lovingly lost before birth but even that is unfortunately not always the case.  These babies are remembered by their parents but aren't remembered by everybody else for very long.  They didn't get a million messages from friends letting them know they made an impact on their life.  They didn't get to play little league or drive a car or be parents.  There's a lot they didn't get to do.  My personal story doesn't include losing a little one before birth but I know a heck of a lot of people who have experienced this and tonight, my heart goes out to you!  Whether you are 70 or 50 or 33 or whatever, the truth is it's never easy; but I am blessed.  The one constant in any scenario up above though is the importance of having a relationship with God.  I'm also grateful that Jesus loves the little children!

Today

Last night was scary. Craig wasn't feeling well and in a different way than before. I was really scared. This morning when I woke up he didn't get up with me to help get the girls off to school. When I returned from all the school drop-offs I called the doctor's office to see if they had insight on what might be going on. We were suppose to go to the cemetery and the funeral home together to do some pre-planning but Craig just wasn't up to it. I went to the 9:30 appointment by myself while Patty (Craig's mom) stayed at home with him and waited for a call back from the doctor's office. After I got back I got antsy. I couldn't take another night of so scary so I went ahead and called the general Hospice of Louisville number, if nothing else to get some information.

Craig was just so fatigued and remained that way throughout the day. He complained of additional pain and a "swirly head" which he couldn't pick up off the pillow. He asked if they could come out today but the earliest appointment was tomorrow at 9:30a. I moved some appointments around and cancelled the funeral home pre-plan appointment until next week. I decided one of these "lovely" appointments is enough for a day. It is too much for this heart to do more than one a day.

Saturday morning I am meeting the girl's art therapist to get together a plan on what to tell the girls, when and how. I broke down on the phone with her today and asked if they were going to be productive  and wonderful people even though they will just have a mom. And she said yes, they have two loving parents and even when they have just have one they know that Craig loved them and it will be a matter of working through their emotions through their loss. So there you go, parenting tip of the day: make sure that your kids know you love them. They spoke volumes to me. I can't change the situation but I can ensure them they are loved (ridiculously loved) and that is a good start to anything, right?

After dinner I went to my facing adversity group at SECC. Craig gained some strength and work on some videos with his mom this evening while I was out. I was shocked to walk in and see him on the couch with the laptop checking Facebook rather than in bed like he had been all day.

I have to say one of the biggest blessing in the past year + is the facing adversity group at SECC. Amazing people working through tough situations, God's way. They prayed around me and there wasn't a dry eye in the room. So wonderful to have that kind of love and peace come over you all at once. They have been an incredible encouragement every step of the way. The good the bad and the ugly. This whole week I have just been craving that group. I have just been saying to myself, I just need to make it Thursday night. It is like the feeling of home. They are just so good to me. So many people even before I updated them on the situation at home they came up to me and said, God woke me up so many times in the past week so that I could pray for you. They have tears in the eyes even before they knew anything. That is God's work. We have seen it so often through this journey. God is so Good.

tomorrow will be tough to say the least

This seems very surreal. This can not actually be happening. This isn't the life that I imagined. I keep weighing myself wondering how many Thanksgiving pounds I have gained and nothing. It is just the weight of the world on my shoulders. I can feel it. I feel like I am 300 pounds.

I worry about the timing that this journey will concluded. Emily's birthday is the 13th. She has been talking about it for 6 months. Christmas seems so far off but also so soon. Craig has been taking a lot of naps and hasn't felt well. What does that mean? As much as I have hated what Dr. Hamm has said in the past, he hasn't been wrong which is just devastating.

The majority of the day I am not panicked or crying. I am just here. I try to talk myself into keeping calm and taking one day at a time. I remind myself of my favorite scriptures and pace myself throughout the day. I trust that He will work all the details of timing down to His perfect plan.

We have some appointments tomorrow. Not looking forward to them at all. It will make this too real. I am not sure how the thought of taking one day at a time will work at a funeral home. I'm not 95 years-old I shouldn't need to go and plan a funeral unless it for a grandparent!! Just seems unreal that this is actually happening.

Feel like we took a turn somewhere and we are in someone else's life. We just need to find our way back to where we took the wrong turn and there we will have a healthy family of five bickering about who is going to change the last diaper of the day or who is going to do bath night tomorrow. We just need to get back to that live that I recognize. I haven't recognized my life since October 4th 2010. Looks like I am a long way off from anything close to "normal".

Tough Day Again

Good news, I have not gotten sick which was a big worry of mine.  I'm a little fraile and I'm worried if I get sick, I'm going to end back up in the ER needing fluids.  I was however very worn down today and had to take multiple naps.  We upped some of my pain meds in the last day to try and curb having to take pain meds so often but I'm worried that was the cause of making me extremely drowsy.  We also took so many pre meds before yesterday's treatment and I'm worried that is what knocked me out more.  I just have a lot of worries, I'm by in large, more unhappy and not feeling well through the day which makes me question going through these treatments.  We are at such a crossroads.  I haven't been able to enjoy my family the last few days and I'm not sure what tomorrow will look like.  I'm not feeling up to work and that is a another big decision that is looming on me.  Lots and lots of big decisions are made right now.  Please pray for direction.  Please also wrap your prayers around my girls.  I so much want to protect them but I feel I'm limited with what I can do.  We'll follow up again here shortly, it's late and I'm tired.

I did get to do one thing cool today.  Michelle and my-drowsy-self made it to J Staples Jewelry today to check one thing off my "get things in order" check list.  I'm getting my little ones each a nice diamond necklace that will be given to them down the road very possibly as a wedding present.  If you want to get me teared up in about two seconds, I think the quickest way to do that is to remind me I can't walk my daughters down the aisle.  The first thing I thought of when I held each one as a baby for the first time was how proud I'd be walking them down the aisle. I even the had the daddy-daughter songs picked out from day one.  I'm done for the night, good night.

How did it go this morning?

I'm getting a bunch of text messages asking how today went.
Not much to say. We were home by 11:30 after the start of Gemzar and Craig slept all day.
He may have slept b/c of too many anti-nausea meds to start the day off with or it could have just knocked him down b/c of the shape he is in at this point. Not sure.
One day at a time.

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
This scripture is pinned to my bulletin board downstairs in the office. It still speaks to me. I know His plan for our life is far better than what I would have imagined. At this point it is hard to say that but I trust Him enough to ride the roller coaster to see what He has in store.


I will post later. Kyle Idleman had an AMAZING sermon this weekend about being filled with the Holy Spirit. I felt like I was in a pep rally... so much to say...I have to get it all together... we are so blessed to have him at SECC.

Thanksgiving Weekend

This weekend has been tough. I am having a hard time getting going in the mornings. I don't want to get out of bed and my stomach is in knots. Craig is the one that keeps saying lets make this day a good one. So I get up and start the day. This weekend has been super busy so that helps since there is a millions things on the to-do list. So every morning I get moving through the day thinking how am I going to get going when Craig isn't there to get me moving? I can't say there is one thing that really worries me except him simply not being here, period. I have not been without him for more than a week in our 15 years together. I am not sure I remember how to function without him here. I am not sure I even know who I am. I guess some independent people might think that is a bad thing and one day long ago I did too. But when someone as wonderful as Craig makes you a better person for just knowing him let alone getting the privilege of being his wife it is not a bad thing to not know who I might be without him.

So we are taking one day at a time. It seems so surreal and unbelievable that we were handed the news that we did on Tuesday afternoon. There are hours of the day that I would say Dr. Hamm has it all wrong there is no way that Craig has "not a lot of time left." Wednesday we had pictures done (which were a little disappointing) and we got the house ready for Thanksgiving etc etc. He never stopped to rest until the end of the day. Minus the pain meds it all seems very normal. I am haunted by other blogs have said the same things only a couple months before the cancer victim's body surrendered to the disease.
It just seems like there is no way this is actually happening.
But it is... and reality stinks.

Our girls don't really get our reality right now. I have told them that the chemo that he was taking in TN didn't work and he is trying something new on Monday. I have mentioned to Emily there are not a lot of "medicines" out there for this cancer. With the weekend being so busy they haven't really stopped to ask questions. They are pretty use to him not feel well. They say stuff like I hope Dad feels okay so we can play fill-in the blank with whatever crazy thing they have on their agenda. But they do not understand the reality of the situation. We have laid some groundwork talking about heaven in general and people who live there that we know/knew but that is about it. I'm not sure what else to add to it to that will prepare them for what is to come.

Please pray for our family in the upcoming weeks/months/years.

Thee appointment

To follow up on yesterday's post, today was another harsh day; might qualify as thee day.  I went in this morning and had a CT scan done to see what was really going.  The huge jump in my tumor marker caused some worry.  Michelle and I met with Dr. Hamm this afternoon around 2 at his office downtown at Norton.  He didn't have my scan results back yet when he came into the office but it was because the scan was only done a few hours earlier and it takes sometime to get those back.  We discussed treatment plans and talked about the Vandy experience for a little back.  He then went back and checked and had the scan results back in hand.  The results were every spot and tumor I had has grown in a significant manner.  There were an estimated 20 something spots in my liver (though some may not have been cancerous).  That's a lot.  It was compared to my last scan at Norton which was September which was about 2 months ago.  The underlying result: it's growing and it's growing pretty fast.  All cancers are different and one notable characteristic is that when PC is growing, it's pretty bull-headed.  There are countless stories of people being diagnosed and not making it a week.  It typically doesn't stop to ask for directions.  I then went ahead and asked the tough questions:
What is the chance of this treatment working and what should I expect?
Basically, while there is a chance things could stop growing and actually shrink, a more realistic hope is that it will slow the growth down.
Is this really my last treatment option because I've tried most things?
If my weekly treatment does work to a degree, I can add the abraxine maybe in a month.  I mentioned this drug in my last post and that drug can maybe even more help slow things down.  But basically, trying anything else, wouldn't be too smart because you are making yourself miserable in your last days.
If I don't do a treatment, what are we looking at?
"You don't have much time." We discussed this a little more because they underlying question unasked was, what really are the chances this next treatment is not going to work based on how aggressive this cancer has become?  I know the answer...higher than it actually working.  I've learned so much about PC, it is relentless.  We aren't close to figuring it out in general.  I am still optimistic this treatment may put up a fight and buy me time and I will fight that fight.  There is so much riding on this first treatment which will be next Monday morning.  If I'm getting sick, it will mean my cancer is pretty mad.  It was very mad at me this past weekend, hopefully it will lie down and rest this next go around.  A lot is going to be determined very soon.
I also have that not so good feeling.  My digestion is horrible right now and I could only eat about 1/4 of my dinner tonight.  Was it a bad day or is it because my digestive system is shutting down?  My pain has progressively got worse over the past month.  I'm in urgency mode right now.  I want a great Christmas with my family.  I'll take the prayers right now but mine are focused on Michelle.  I've told her I have all the faith in her to make it through this.  What she's got faced in front of her is a mountain but I strongly feel if anyone can do it, she can do it.  Please pray for her.  For strength, for confidence.  3 girls are a lot but those 3 girls are remarkable.  They rally around her when they sense I'm down.  I could go on and on but right now, I just want to comfort her so I'm signing off for the night.  Have a happy thanksgiving if you don't hear from us tomorrow.  I still have a lot to be thankful for so I'm going to try and enjoy the day.

Some bad news (but now that I've finished the blog and know what I wrote, some good news)

We've got some updates on what has transpired over this last week.  I ended up in the ER on Friday after my treatment last Thursday due to continuous vomiting that was literally sucking the life and weight out of me.  I was down to 132 lbs before I left the house.  It took the hospital about 12 hours themselves to be able to get things to stop.  We didn't know what was the cause as it could have been been the recent chemo treatment (though it hadn't effected me that way on previous ones), the cancer itself, a combination of too many meds or a possible virul infection.  Due to blood tests not showing too much out of the ordinary, the hospital doc literally had to guess that it was probably something virul.  I was willing to accept that because it meant it was maybe a one time thing and things were still going all right.  I messaged my Vandy doctor on Sunday evening after getting home Sunday afternoon to let him know how my weekend went.  I was expecting to here from him on Monday by telephone because he was going to follow up with me regarding my tumor marker number that was drawn by blood before my last treatment.  He called me today and was quick to say that it was most likely a reaction to the chemo.  My tumor marker jumped from 270 something (I believe) 4 weeks ago at the onset of my new treatment to the current number of 681.  I was at 70 something about 2 months ago.  My highest number ever pulled was mid to upper 300's which was when I was first diagnosed.  The conclusion is the clinical trial is not working.  The only positive from today is I no longer have to put together weekly treatments to Vanderbilt.  I wish it would have worked but it what it is, I don't regret things in hindsight.  I am having a CT scan in the morning which should confirm things and I get the results back tomorrow afternoon.  The recommendation by my Vandy doc who still wants to be involved in my treatment (which I appreciate, because he's probably the best one for me) recommends I go the standard gemcitibine treatment.  This is the treatment that is usually given first to anyone diagnosed.  It's results are mixed, it can be very beneficial, it also can not to do too much.  These days, the most common thing to do is gemcitibine and add another drug as a complement.  The 2 two most popular drugs are tarceva, which has a lot of data and is said to add some value to the treatment, and another one is abraxine, which does not have a lot of data but shows some more possible value than tarceva in it's briefness of being studied.  Abraxine is used a lot with other cancer therapies like breast cancer but has not been studied for a long time regarding the pancreas.  He told me that because of the shape I'm in, he'd recommend I do gemcitibine alone briefly and allow my body to build back up and then add abraxine shortly down the road.  He gave the stat that 27% of those that take gemzar (abbrev for gemcitibine) and abraxine realize grade 3 fatigue which means it's hard to get up the next day and brush your teeth.  Gemzar by itself is probably, on average, the therapy with the least amount of side effects.  That part sounds appealing but I'd feel pathetic if it knocks me down hard.  Gemzar and abraxine on average is also pretty tolerable regime.  The wish and prayer is this next round of treatments works and is tolerable.  Part of the scary thing is we are reaching the end of viable treatment options.  I will be worried if the next months do not go well.

So, things have been real but are getting more real for me.  My body right now is not in the best of shape though I'm not supposed to complain because I can function well most of the time.  I'm still experiencing pain and my stomach makes me afraid to leave the house sometimes if I'm going out.  The pain is coming from this damn tumor.  Michelle and I are so used hearing not fun news so today hasn't been earth shattering.  I got in my 15 minutes of laying down by myself and I got to relieve my emotions.  I don't believe Michelle has had time to get her brief moment in.  Typing this long post makes my back hurt and I hate that.  It kills me to not know if this is another bump in the road or I've reached the top of the hill and I am going to start to coasting.  I'm still obviously positive but my cancer may have complete disregard for my attitude.  I've got to admit, especially when I'm in pain or getting sick, that dying does not sound like the worst thing in the world.  It absolutely pains me to say this.  I'm still not scared to die, I know where my home is.  I just hate that I can cause pain and anguish in the people's lives that have the highest amount of respect for.  I hate that.  I absolutely hate that.  I never want to hurt my kids and I never want to hurt my wife who has put her whole life into me.  I hate hurting my friends and family.  I hate that when my day comes, many friends, colleagues, etc will have to sit at work and just shake their heads and ask why does terrible stuff like this have to happen.

I know one thing and it's the most important thing I feel deeply about to my core, God did not stand by and choose not to prevent to let this happen because he doesn't care.  He will allow this to happen because this place is not my home.  My prayer and my begging is that someone will know me and choose to meet God because I opened a door for them.  To me, if one person sees my faith and TRULY seeks out God because of me, I've lived a fulfilled my life on earth because they will find their everlasting home.  I also know one other thing, I have always believed in God since I can remember.  I also remember when I actually made a commitment to trying to be a godly person and seek to fulfill His mission here on earth.  It was in my twenties when I started a family and I owe it to my wife.  My wife is the person that really brought me to Him and words do not express how grateful I am for her.  She truly helped make my light bulb go on.  My church took it from there but many people have that person or that experience and I am so lucky I got to experience this.  My question is do you A) just believe in God and try to be a good person or do you B) have that confidence deep down down in your heart that no matter what, no matter what, you don't have anything to really worry about.  If you aren't at B, you are missing out, it is truly awesome.

Update11/23

Craig will probably be released today. We will not know the cause of this episode and since there seems to be a difference of opinions I won't weigh-in with my opinion.
With God's love and patience we are moving through this bump in the road.
We will touch base with Vanderbilt tomorrow to get the results of the tumor market they pulled Thursday. If it is still evaluated in the 200+ then we might move the scan up to ensure this treatment is getting some results.
Will update more later.

ER on Friday night and admitted for the day Saturday

We went to the ER with Craig Friday evening for continuous vomiting, nausea, and pain that wasn't able to get under control. He was admitted and will stay there again tonight until he can eat without vomiting and the pain is manageable with the pain meds at home.

The cause of the sudden evaluated discomfort could be the cancer, the chemo or a simple stomach bug. We shall see.

Following Up

Starting to get the emails and the questions so I guess I need to follow up on what's been going on with me lately since I never posted after the last treatment last week.  Last week was the same as the first 2 treatments at Vandy.  I handled the chemo session well, walked away feeling a little icky but it was a huge breath of fresh air compared the days in the past.  The following day started out fine again but my stomach turns sour usually in the middle of Friday and it is very uncomfortable.  It's nothing pain medication can control.  It hurts to get up or stand up and it doesn't hurt as much when I lay down but it's still very uncomfortable.  It lasts through about 2 more days with some relief off and on over the weekend.  Truth be told, I can handle it.  It's still a lot easier than the past treatments.  I at least have my mind in the game where I can talk and watch tv and spend time with the family.  Michelle and I were guests of our friends Chris and Janelle last Friday night and I ended up laying on their couch for the evening and fell asleep.  Wasn't my proudest moment but they are good friends and understand.  Each day after the treatment is just a roller coaster.  As far as the treatment goes, this is my 4th week which means...NO CHEMO.  I live for these weeks.  I feel half way normal.  I'm still having the pains and taking pain medication around the clock.  I'm OK with that even thought its frustrating I still have pain and I'm taking 2 different pain meds on their regular schedules.  You always envision being in that la-la land when on those meds but I don't get that, unfortunately.  Anyways, I'm off treatment this week.  It worked out I'm actually off work tomorrow for Veteran's Day.  Thanks Veteran friends (for your service first and foremost)!  Is the treatment working or when will I know is the most common question I'm getting.  We don't know if it's working.  We'll do treatments the next 3 weeks consecutively and then December 15th, I'll have a CT scan and we'll pull a tumor marker that will tell us the verdict.  If it's working or things haven't changed much, I'll continue on the treatment for another 2 months.  I hope it's working obviously.  I will say the treatment, if working, should start alleviating this pain.  It's not alleviating the pain but I also need to be patient.  That's the story for now.
My presentation to Oldham County Fiscal Court for the Pancreatic Cancer Awareness Month Proclamation went very good.  The presentation is shown on the government channel here in Oldham County over and over and a few have got to see me on tv.  I'll give myself a B, I said um a few too many times which I um didn't realize when I was given the um presentation.  Michelle said that would have made a good drinking game back in college.  It was and is great awareness which was my goal of doing the presentation.  I reached out to the Oldham Era newspaper and they happily reached back out to me to do an interview on a possible story.  We'll see what that leads too but I'm all about spreading awareness and hopefully using my story for good.  I'll let you know what this leads to.  It was an emotional interview.  I've shared a lot about the disease with many people and am well versed and knowledgeable on the subject but as soon as the questions change gears and the words kids or family are mentioned, I break down...just like the flip of a switch.
Chicago, one of my favorite places, is turning their skyline purple for the month of November for PC Awareness Month.  I haven't got to see a picture yet but I hope to find one soon.  I love the Chicago skyline as it is.  It's a little sentimental for me.
Um, I guess that's all I've got for right now.  That's all the stuff on the surface.  What's below the surface?  That might be another post.  I love my wife, I know that.

anxiety has gotten the best of me lately

The past couple weeks the anxiety of this disease has gotten the better of me. It is extremely stressful to see someone in this kind of pain. It is hard to plan for it when it hits when you least expect it. It is hard to plan family outings or figure out if I am going to be doing the bedtime routine on my own or have help. It is stressful to hear the heavy sighs or painful groans and not knowing what they mean. We are unsure whether the abdomen and back pain is from the treatment, medication or the growth of the cancer itself. It is really stressful keeping the "what ifs" at bay.

I haven't done thankful Thursdays or anything like that b/c I am exhausted to be looking for the silver lining. I know that we have a lot to be thankful and I have not lost the faith but I am tired. Even Jesus took time to rest. It is not the kind of tired that I need a break or to get away. It is just the kind of exhaustion that allows honesty to settle in. I have wrote and re-wrote this post. I can't quite get into words why there is so much pressure on the day to day of this disease. I think I am going to just move on and post this or I will never get it posted. I don't think that words can describe where I am right now.

http://www.southeastchristian.org/?page=3476&project=116707&program=514253

Last week's sermon is a great one. Very challenging but a great message for each of us.
Nice vs. kind and compassionate.
Which path are you are today?
Which path are you following?
worldliness? or God's path?

Gungor "God is not a white Man"

This has nothing to do with cancer. But this video makes me laugh every time. Slightly fitting going into election day. I don't want to open a can of worms on politics, I just thing this is cute. So often we try to fit God into our agenda when really we should ask Him what our agenda should be for each day. 
My favorite line is "He will not be boxed in."
He is not limited.
Enjoy. :)

Happy Halloween 2011

Dressed for school

 Morgan's wig is 30" long, you just can't see it in the picture. She loved it.

Proclamation Details

Here's the details for tomorrow's proclamation

Tuesday Nov. 1st @ 2pm

Oldham County Fiscal Court Building

The Fiscal Court meeting is held on the 2nd floor of the Fiscal Court building which is a tall 2 story building with big white columns in the front.  The county clerk's office is on the first floor.

The easiest way to get to the building is taking I-71 north to exit #22 LaGrange.

Take a left onto Highway 53 off of the exit.
Go about one mile and the building will be on the left side on the corner of Hwy 53 and Jefferson St.  Jefferson St. is the next street after crossing over the railroad tracks which runs down the middle of downtown LaGrange.  The is a small parking lot across Hwy 53 at Jefferson St and there are also spots on the street in that whole area.
100 W. Jefferson St.
LaGrange, KY 40031

Dilaudid

My pain medicine has become a very good friend of mine.  Thursday's treatment went pretty good.  I walked out of the treatment feeling better by far than I ever have after a treatment.  I wasn't sick or worn out.  I had a fun 3 hour trip back with Jason.  I got home and hung out with the wife for about 2 hours before I went to bed around 11.  Friday morning got off to a good start but later that morning, my stomach turned upside down on me and I'm still recovering.  It's frustrating, not sure if it's the treatment or the cancer.  I've been taking the pain meds around the clock and starting yesterday, I've been double dosing and hitting it every 4 hours.  I set the alarm last night to take it at 3am.  I really hurt in the night if I just try to sleep as long as I can.  The pain has been very uncomfortable.  Friday I got about 3-4 hours in the afternoon of limited feeling of the pain and got to go to Vanguard's trunk or treat and watched Hannah and Morgan go around for their first round of candy.  We wanted to go out to dinner as a family bit I nixed that after my stomach couldn't be settled again. The feeling is a constant knot that won't go away.  I didn't get to sleep much Friday night.  I was crossing my fingers on Saturday that things would turn around but I had to unfortunately bail on the trip to Lexington.  Michelle's family always gets together for one UK football game and we all go up and do the all day tailgate the right way and take in a game.  We take the girls as well and show them the campus and they always have a ball.  I stayed home and Michelle, Emily and Morgan made the trip up.  Michelle's mom took care of Hannah for the day and she treated her to some toy store action and Barnes and Noble for a new book.  I was bummed about not going but did have a few friends come over and visit.  My friend Scott was dropped off who was doped up on percocets from his shoulder surgery and I was doped up on my dilaudid, kind of funny.  Anyway, I've been double dosing and had a pretty good day today.  I got to go to church, visit with Brad (brother in law) who was in from Chicago, took a nap and felt well enough to allow Michelle to get out and have some time to herself and me and the girls played Candyland, Sorry and played outside for a good 2 hours.  We got to carve our pumpkin this evening as a family which is always messy and fun.  Anyways, this pain is annoying and I want it to go away.  The double doing makes me a little more tired but I've been able to function all day (nap helped).  I'll have another treatment this week and Brent Bohannon will be this week's wing man.  I'm going to try to go to work tomorrow and I'm hoping for a good Halloween.  Emily will be a 50's girl (pink poodle skirt is cute), Morgan will be Rapunzel and will be sporting 30 inches of hair extension and Hannah will be our little ladybug.

Tuesday is the Oldham County proclamation day.  I will be getting more details tomorrow and will pass those along on the blog because people have been asking.  Judge-Executive Voegele will be issuing an Official Proclamation recognizing November as Pancreatic Cancer Awareness month for Oldham County.  He'll present it to me and then I'm going to give a short presentation on some not so fun facts about pancreatic cancer.  Purple is our color by the way.  If you've got time available, you are welcome to join.  I do know the governement meeting starts at 2pm and is located on the 2nd floor of the Oldham County Clerk's building in LaGrange.

Why did we decide on the clincal trial at Vandy?

I haven't updated the blog which much of anything lately except status updates b/c as the old saying goes "If you don't have anything nice to say, don't say anything at all." I am tired of this situation in ways that is not politically correct to talk about it. The anniversary of diagnosis was just horrible. It wasn't just replaying the day in my head a million times it was the fact that I no longer have the luxury of our past being normal. Cancer is our past, present and future. On October 4th 2011 I longer can say "this time last year we were..." and fill in the blank with something normal... having a baby, etc. etc. But on October 5th 2011 we were looking for treatment options, in and out of doctor's offices, waiting for results, looking for answer, preparing for the next steps... etc etc. the same crap we are were doing a year ago. It is now not only our present but our past and our future. It is heartbreaking. I miss thinking "This time last year..." and filling in with a non-cancer related thing.

So I have kept quiet for a while now on the blog but I do want to tell you why Craig signed up for the clinical trial at Vanderbilt. This is my version of the story and it may have played out in Craig's mind much differently but for me here ya go.

We came home from the trip thinking the treatment wasn't worth the trouble of getting down to Nashville once a week. It doesn't have any more promise than anything here in Louisville. They flat out don't know if this will work. The theory has worked on other cancers but when you are talking about one of the most aggressive cancers that doesn't really mean it will work on this one. Most of us when making a decision will make a list of pros and cons on each side and weigh your options and come to some kind of logical conclusion which we did several times. We were staying home and doing the standard care. It made sense for Craig's career goals, it made sense for the logistics of the kids, it made the most sense for my sanity, the decision was made... except it wasn't. I think every parent can picture this scenario, you give your child two options and one options is the easiest and they of course right off the bat choose that one and then you ask again, not telling them what your preference is but letting them make the decision on there own...well kind of.
For example, "Emily, do you want cupcakes or carrots for dinner?" What is a 5 year old going to choose? cupcakes! so you ask again hoping they choose the one that is better for them "Emily, do you want cupcakes or carrots for dinner?" Cupcakes. "Emily, Do you want cupcakes or carrots?" As parents you ask and you ask until they make the right decision (if you have that kind of patience). You want them to think through the two choices but clearly you have the better option in mind so you keep asking. So eventually they choose carrots b/c really it isn't going to be really decided until they make the "right" decision.

In my mind that was the scenario that played out for the decision of standard treatment at home vs. clinical trial at Vandy. Oh the decision was made several times, we were staying home! But then the question kept coming up, and not in a doubting way, it made sense, we were staying home. But like a patient parent He kept asking and until Vandy called and the appointment was made without discussion of pros and cons or what we were going to do. The decision was made and the questions stopped being asked.

I am not sure why He wanted on this clinical trial. Is it the best form of treatment for Craig at this time and the next step in healing? Or did He want Craig is be a part of the research puzzle? Not sure. Either way we are honored that He kept asking and it is a part of the journey and obedience to follow Him. Craig is the youngest person in the trial at Vandy. So it could be at the end of the trial Dr. Berlin could say, "this is a break through treatment and here is our poster child and a clear scan" or he could say "this treatment doesn't work on PC, if it was going to work for anyone it would have been Craig." 
Either way we are walking through this journey His way and regardless where that leads, healing on earth or in heaven, it is fine.
I have always felt that this journey is part of something much bigger than us. He has a purpose for all this adversity. We will follow His way, no matter what His purpose is for this journey.

So Craig is at Vandy getting the second treatment with his "wing man", Jason. I have no idea how things are going but someone will update tonight or tomorrow. Going into the treatment he was on pain-killers and still had back and abdomen pain.

Prayers for no side effects and ease of the pain.
Please pray for me. I have been down a very selfish road these past couple days and was Bitter Betty. That road is not joyful, not tolerable and there is no way that I can fulfill His will for our family on that road. After a long conversation with a dear friend I am getting back on track. God put Gwen in my life and I am forever grateful. forever grateful. She hears the worst of the worst and is somehow is still willing to be my friend.

246

As Michelle previously posted, I didn't experience any real nausea and fatigue wasn't too bad but I have been experiencing abdominal pain which ranked as about a 7 on the pain scale.  We didn't know why I was having the pain as its not really a normal side effect from a treatment.  I talked to Vandy today and they expressed they were not overly concerned about the pain being something out of the ordinary for my situation as long as I wasn't experiencing other symptoms like a fever or nausea.  They recommended I keep up with my pain meds.  I have been eating normal and not having any other problems so I figured something might be inflamed or something like that.  We really aren't certain what exactly is causing the pain but I asked what my tumor marker was that they pulled last Thursday before my treatment.  My number was 246, up from seventy something.  So that means my tumor and my cancer has become much more active.  The highest reading I ever had was in the mid 300's which was around the time I was diagnosed.  This number goes into the 1000's so my number is still manageable but we are a little concerned it's shooting upwards.  We have to hope this treatment starts to knock it back down.  The pain is most likely being caused by my pancreatic tumor pressing against the nerves in my back.  The pain shoots through my back if I'm late on meds.  I'm still on course to go back down to Nashville on Thursday for another treatment (#17).  This will be the first time I'll be doing a treatment without Michelle.  We're going to let her stay here and keep the family in order.  Jason Breit will be my wingman this week.  I never could let anyone do a treatment with me because of the ugliness but this treatment is a lot more manageable (other than the pain).  I'm not freaking out by any means because of the above news.  It's not reason to.  Reason for concern is valid.  I'm also prepared for any news a doctor can give me.  So that's the update, not much else to say.

Side note, prayers go out to my friend and coworker Melinda Dytrich Briscoe.  She married the love of her life, Jamal Briscoe, about 2 years ago and she recently unexpectedly lost him.  Jamal was 29.  Jamal and Melinda both have a strong faith and that's simply what will get them through this.  Jamal was a very friendly, always smiling, genuine person.  Hang tough Melinda!  You've got our support, prayers and love.

update for tonight

Craig has had a rough day. Fatigue is not the biggest obstacle as anticipated but cramping pain in his abdomen. Not sure what it is from or what has caused it. He has taken his pain medicine that he hasn't had to take for quite some time and put a heating pad on it. The heating pad loosen his abdomen enough to run out for dinner but after a short visit he was back in bed in pain.

It has been a frustrating day for all of us. It is frustrating to see him struggling with little that we can do and little reason for the pain. I am not really sure what to say at this point.

Although treatment is the obvious choice to ensure more time on earth it is a bit frustrating that he feels perfectly normal off treatment and when he is on treatment he feels like crap. It makes you question whether you are doing more harm than good?

I guess it was just a rough day. I hope tomorrow is better.