It's been a little while for me. I guess not a lot of news can mean no bad news. I've been meaning to get on here about every night here for the last week. I'm sorry to say my last post was Dec 23rd. Michelle does a great job keeping you up on the emotions of the household. All in all, things are going relatively well right now. I'm generally feeling decent enough to enjoy quality time with the family. Christmas was a big goal of ours and it went as good as I could have asked. New Years was a little different, neither of us were feeling very well and it was tabbed an early evening. My biggest complaint of the last few weeks is that I woke up yesterday morning (Wednesday morning) with some serious pain in my neck. I tried to brave it for half a day but I eventually called into the hospice nurse to get some advice. My choice was go into the ER and get an xray or double up on my pain meds and increase the frequency. I chose to up the pain meds. It helped with easing the pain to an extent but also expectantly made me pretty groggy. In the back on my mind, I wondered if it was just a case of sleeping on my neck wrong. I called my chiropractor who I used to go to out here in Oldham County. I also know him from my job and he goes to same church as me as well. He offered to come out to see me at home this afternoon late in the day. He adjusted me in about 10 minutes and pretty quickly found the bad spot in my neck. It has helped tremendously with my pain and it's about 90% gone. This has really been my only anguish over the past few weeks other than the normail fatigue, digestion problems, etc.
My lack of health news has made things pretty normal BUT life is still far from normal. I've driven my car about twice in the last 30 days. I don't feel comfortable driving, it's an odd feeling and it's not easy to admit. I feel trapped when I'm not able to jump in my car and run an errand. I have to recruit friends sometimes to take me to the store or to get my haircut. I hate having to do that. Michelle does plenty of driving. I hate having to force all of the family driving on her. I don't really like riding in a car these days either. I don't like the back roads, I don't like going too fast. I get really light headed in the car and it can make me sick. We've got my car lined up and ready to be sold to my brother in law; it's just sitting in the driveway these days. The driving issue is just one of life's oddities these days. Other thoughts that go through my head these days are mind boggling. For example, I needed shampoo the other day, do I buy the travel size or the small bottle? I don't have much hair but this is a stupid question. Another example: I had a coupon where I got a nice discount for buying 2 sticks of deodorant; I had to ask myself if I really needed that other stick. I went through a recent debate on my new tv for the bedroom which was my only "desire" for Christmas and rationalized that if my wife did not like it, she had 90 days to take it back. These questions bother me and probably should bother me more but they are my new mindset. I'll reiterate I still want to be on the this face of the earth very long assuming I continue to feel good like I do right now. The conversations in this house would baffle you. Michelle and I sometimes joke about her next husband. Again, not a normal discussion, but we don't shy away from anything. Every conversation is fair game. I want her to remarry one day and be happy. My criteria for the new husband is a little lengthy and I joke with her about my required 7 year wait time frame :) I hope you don't think we are crazy reading this. Michelle has been making fun of me lately because I've learned what concoction of meds make loopy to where to she can't get me to be quiet at night. She jokes about how it used to take me a couple of drinks to make me "more social" since I'm generally a quiet person. One of our running jokes is about how she wants me to take Sammy our cat "with me"; you know since we picked out a double lot at the cemetery. Do you think we are crazy yet? Let's see what else is there? I guess there are more things to share but I don't really want you to think we really are crazy. In some ways, we can make some pretty dang on funny Seinfeld episodes around here our real life annoyances.
All in all, I'm happy right now and am in good spirits. I think Michelle is happy right now too, relatively speaking. It's not always like that and every day will have a bad hour or two. The underlying fear is still there. This can change at any moment. I very much crave continued quality time with my family. In reality, I'm still resting in bed most of the day but the quality time is blissful when I'm up to it. Over the holidays, I was given a very cool binder that many friends and family contributed to which included fond memories and lots of funny pictures. It has been very cool to through. It's actually emotional to go through so I interestingly still have a few pages to go; there were over 50 very personalized messages to me. I'm afraid to finish it up. Another cool thing I recently did was my fraternity brothers from UK got a big group of us together surprisingly to me and we got to share a bunch of old stories from back in the day. They shared a beer or few and I had an ice water. I loved my Lambda Chi Alpha days. One of my fondest memories was spending time in the Dean's office trying to explain why we deserved to stay on campus after going through some of the very normal fraternity occurrences. We were kicked out of our fraternity house for 6 months just 3 days before I took over presidency. I was successful in persuading the dean to let us back in the fraternity house by promising to never party again and that we didn't haze. I guess I could have done an entire post on fun memories from those days but I have to keep in mind that my mom still reads this blog. Another fond memory of the last few weeks include going through the hundreds of photographs my mom has of me growing up. If you haven't done that in a while, I recommend you do that.
I am still amazed at the vast amount of support we get from friends and family. It all is very humbling and in some ways hard to accept. I've always liked to be generous and give and that can make it hard. We get messages all the time about how much of an impact our situation has made in their lives. It's satisfying to see there is so much love in the world these days. Crappy situations do bring out the best in people, it's brought out the best in our family.
I had an important though to post here but I need to better figure out a way to say it. To be continued... (I'll continue what I wanted to say here in another post)
Thursday, January 5, 2012
Wednesday, January 4, 2012
What would this journey be like without God?
I got a close enough taste to that question on New Year's Eve evening. I got so ahead of myself with all the talk of new year resolutions and questions of big plans and the "Happy New Year's!" We stayed in for the night but I ended up on the couch most of the night. We have done well taking one day at a time but I took the whole year in one big panic attack. When I get so overwhelmingly stressed out I get incredibly nausea, the room spins and I feel 1st trimester pregnant (yuck).
I was making a mental list of all the things that would happen in 2012. 1. My husband will die in 2012. 2. Morgan will go to kindergarten and has trouble with transitions 3. potty training Hannah (BY MYSELF!) I hate potty training. 3. Emily will be in 1st grade and have homework, how are we going to manage that in the evenings. 4. weddings by myself, 5. holidays by myself. the list went on and on and on...
Knowing this will (probably) be THE hardest year of my entire life and making a mental list of all the events coming up made me sick. I had myself in such a tither that in 10...9...8...7 --- 3...2...1 was simply a count down to the trip to the bathroom. I can't say that I have never kissing the white throne on New Year's Eve before but those times were for much different reasons.
Plain and simple I hadn't recharged myself in two weeks. With Christmas festivities the first week of the Holiday break and post-Christmas blues and running around with three crazy kids the second week it is no wonder I ended up in a world of hurt for the night. I went from entertaining the kids to, lunches and dinners with friends, to doctors appointments, to staying up late talking to Craig. Not once picking up a devotional, listening to a sermon, not following any of the encouraging blogs I follow, not going to a support group, not taking a break to just do something quiet... so yes I ran myself square into the ground. Not pretty. Not pretty at all.
Monday and today were recharge days. Kids are back at school and I took some time for me and I got a manicure (which turned out to be frustrating - one manicurist that speaks English - just once in a while - that's all I ask!) and today I ran some errands and went to yoga. Starting to really love yoga, honestly I thought it was just a good way to stretch and any beyond that was just for the fruit-cakes out there but I might just be one of those fruit-cakes! It is so wonderful when you go in with the intention to rebuild your strength. Most of the time that I am in there I hear this song playing in the back of my mind. I feel an inch taller when I leave. Love it.
http://www.youtube.com/watch?v=6chgnpKmu58
Today I also prayed and prayed and prayed for two things: 1. regain strength and get God back in the center of my focus so that I could be there for my family and 2. for a wonderful old/new friend from high school. I can't go into too many details without his permission but he has been such an encouragement to me over the last couple weeks. It really is a God story (I have at least a million, ask me I LOVE telling them). Couple months ago I was truly sick of this situation talking about it, praying about it even thinking about it. I just needed a break from hearing myself talk about cancer. So I took a break, I read "The Help" rather than self help book or cancer help book. I went to my Facing Adversity group on a Thursday and told them I am truly sick and tired of this... and one guy said that he had started to pray for others when he was sick of himself. It renewed his relationship with God without wallowing in self-pity. So Friday morning I set out to do just that pray for others, stay close to God in conversation but I was DONE talking about cancer. So of course before starting my workday I procrastinated a bit and jumped on facebook. (don't judge, you do it too, don't lie). I saw a link to a story that I couldn't believe. An amazing, encouraging, courageous story of a friend in high school that had faced adversity in the worst kind and overcame (in a BIG way). So I FB emailed him and we began a dialogue back and forth. He is doing great things today and he is putting in a lot of hours (now) but he is walking a wonderfully righteous path and I am praying for him each step of the way. Praying for others has renewed my relationship with God in ways that I couldn't have imagined. So many people have emailed us and said they were praying for us and I have to believe that a part of His plan for this adversity is for each person that prays for us to renew their relationship with Him. It is a Beautiful Thing.
So what would each day of this journey look like without a daily renewal of my relationship with God? Like vomit. (there is no sugar-coating that) I would be terribly nausea ALL the time and probably throwing up most days from the stress. There has been so many times I have asked myself "Why are we so okay?" "Why are we not completely panicked?" "Why is this house not completely falling apart?" Most would say oh they are really religious (yuck!!), it is not that, saying you are a part of one church or the other isn't going to get you any further than believe in nothing at all. Some might say we have an incredible faith...kind of, but it is more than that... it is a relationship... it is conversations... it is renewal each day with God through His gift of the holy spirit. I was reading Kyle Idleman's book "Not a Fan" one night and came upon the chapter on the holy spirit. Let's be brutally honest, I really didn't get the holy spirit until recently. It was explained to me in school, I even went to Holy Trinity for grade school so I was explained the three as one thing but really the concept of the holy spirit is a little hard to get a handle on.
In the book the scene is set in heaven and you are asking Old Testament figures what it was like to be in their journey (example: David, what was it like to defeat a giant?) and they ask you in return these three questions:
Tell me what it is like on earth to have the Holy Spirit living inside you giving you strength when you are weak.
What was it like to live life on earth with the Holy Spirit giving you joy when you're depressed or giving you power to overcome that sin/adversity in your life?
What was it like to have the Holy Spirit giving you directions when you didn't know what to do or where to go?
I know what it is like to have the holy spirit giving me strength, giving me joy, overcoming sin and adversity and directing the decisions. It is like having super-hero powers. Superman can fly, Batman has the bat mobile, Wonder-woman - what did she have besides a good body and nice hair?, spider-man can scale walls with his web-thing. Followers of Jesus Christ have the holy spirit only it is fact not fiction. It is not a comic book or movie, it is real life.
I am not naive to think this will not be THE most difficult year of my life but I am confident in knowing that this past year we are living proof of my favorite scripture Phil 4:13 "I can do all things through Christ who gives me strength."
That was a lot about me (sorry), here is a running down of the rest of the Merimee crew:
Craig: um inconsistent would be the best word to describe it. Somedays are fine and he feels good and then he gets frustrated that he can't drive b/c of the pain meds. Mostly tired. Lots of naps. He usually picks one mid-day activity and rallies to do that, then he will eat dinner with us and help out with the girls, hang out with the family, read to the Emily and Morgan, Hannah wiggles too much it doens't go well. Then we hang out watching mindless TV or just chatting. We talk late into the night some times.
Emily: She started riding the bus home from school since she started back and she is really excited about this change in transportation. They went to art therapy this past week and she drew two pictures of her and Craig laying in bed watching cartoons and playing games on the iphone or Vtech. She loves her one on one time with him. They are two peas in a pod for sure.
Morgan: She is having a hard figuring out what to ask and some things seem to be bothering her but she doesn't say much. Adores being apart of this family even if she can't figure things out.
Hannah: Is saying a little more. She loves to dance. She has two new teeth so she is up to 10 total. She will come up to squeeze you for no reason at all without asking. I think those are hugs from God since her name means gift from God.
So that is the longest post ever...
Told ya I was recharged! :)
Please keep praying for peace in our house!
And add Pat who works at the Healing Place on your list (please). He is doing good things.
I was making a mental list of all the things that would happen in 2012. 1. My husband will die in 2012. 2. Morgan will go to kindergarten and has trouble with transitions 3. potty training Hannah (BY MYSELF!) I hate potty training. 3. Emily will be in 1st grade and have homework, how are we going to manage that in the evenings. 4. weddings by myself, 5. holidays by myself. the list went on and on and on...
Knowing this will (probably) be THE hardest year of my entire life and making a mental list of all the events coming up made me sick. I had myself in such a tither that in 10...9...8...7 --- 3...2...1 was simply a count down to the trip to the bathroom. I can't say that I have never kissing the white throne on New Year's Eve before but those times were for much different reasons.
Plain and simple I hadn't recharged myself in two weeks. With Christmas festivities the first week of the Holiday break and post-Christmas blues and running around with three crazy kids the second week it is no wonder I ended up in a world of hurt for the night. I went from entertaining the kids to, lunches and dinners with friends, to doctors appointments, to staying up late talking to Craig. Not once picking up a devotional, listening to a sermon, not following any of the encouraging blogs I follow, not going to a support group, not taking a break to just do something quiet... so yes I ran myself square into the ground. Not pretty. Not pretty at all.
Monday and today were recharge days. Kids are back at school and I took some time for me and I got a manicure (which turned out to be frustrating - one manicurist that speaks English - just once in a while - that's all I ask!) and today I ran some errands and went to yoga. Starting to really love yoga, honestly I thought it was just a good way to stretch and any beyond that was just for the fruit-cakes out there but I might just be one of those fruit-cakes! It is so wonderful when you go in with the intention to rebuild your strength. Most of the time that I am in there I hear this song playing in the back of my mind. I feel an inch taller when I leave. Love it.
http://www.youtube.com/watch?v=6chgnpKmu58
Today I also prayed and prayed and prayed for two things: 1. regain strength and get God back in the center of my focus so that I could be there for my family and 2. for a wonderful old/new friend from high school. I can't go into too many details without his permission but he has been such an encouragement to me over the last couple weeks. It really is a God story (I have at least a million, ask me I LOVE telling them). Couple months ago I was truly sick of this situation talking about it, praying about it even thinking about it. I just needed a break from hearing myself talk about cancer. So I took a break, I read "The Help" rather than self help book or cancer help book. I went to my Facing Adversity group on a Thursday and told them I am truly sick and tired of this... and one guy said that he had started to pray for others when he was sick of himself. It renewed his relationship with God without wallowing in self-pity. So Friday morning I set out to do just that pray for others, stay close to God in conversation but I was DONE talking about cancer. So of course before starting my workday I procrastinated a bit and jumped on facebook. (don't judge, you do it too, don't lie). I saw a link to a story that I couldn't believe. An amazing, encouraging, courageous story of a friend in high school that had faced adversity in the worst kind and overcame (in a BIG way). So I FB emailed him and we began a dialogue back and forth. He is doing great things today and he is putting in a lot of hours (now) but he is walking a wonderfully righteous path and I am praying for him each step of the way. Praying for others has renewed my relationship with God in ways that I couldn't have imagined. So many people have emailed us and said they were praying for us and I have to believe that a part of His plan for this adversity is for each person that prays for us to renew their relationship with Him. It is a Beautiful Thing.
So what would each day of this journey look like without a daily renewal of my relationship with God? Like vomit. (there is no sugar-coating that) I would be terribly nausea ALL the time and probably throwing up most days from the stress. There has been so many times I have asked myself "Why are we so okay?" "Why are we not completely panicked?" "Why is this house not completely falling apart?" Most would say oh they are really religious (yuck!!), it is not that, saying you are a part of one church or the other isn't going to get you any further than believe in nothing at all. Some might say we have an incredible faith...kind of, but it is more than that... it is a relationship... it is conversations... it is renewal each day with God through His gift of the holy spirit. I was reading Kyle Idleman's book "Not a Fan" one night and came upon the chapter on the holy spirit. Let's be brutally honest, I really didn't get the holy spirit until recently. It was explained to me in school, I even went to Holy Trinity for grade school so I was explained the three as one thing but really the concept of the holy spirit is a little hard to get a handle on.
In the book the scene is set in heaven and you are asking Old Testament figures what it was like to be in their journey (example: David, what was it like to defeat a giant?) and they ask you in return these three questions:
Tell me what it is like on earth to have the Holy Spirit living inside you giving you strength when you are weak.
What was it like to live life on earth with the Holy Spirit giving you joy when you're depressed or giving you power to overcome that sin/adversity in your life?
What was it like to have the Holy Spirit giving you directions when you didn't know what to do or where to go?
I know what it is like to have the holy spirit giving me strength, giving me joy, overcoming sin and adversity and directing the decisions. It is like having super-hero powers. Superman can fly, Batman has the bat mobile, Wonder-woman - what did she have besides a good body and nice hair?, spider-man can scale walls with his web-thing. Followers of Jesus Christ have the holy spirit only it is fact not fiction. It is not a comic book or movie, it is real life.
I am not naive to think this will not be THE most difficult year of my life but I am confident in knowing that this past year we are living proof of my favorite scripture Phil 4:13 "I can do all things through Christ who gives me strength."
That was a lot about me (sorry), here is a running down of the rest of the Merimee crew:
Craig: um inconsistent would be the best word to describe it. Somedays are fine and he feels good and then he gets frustrated that he can't drive b/c of the pain meds. Mostly tired. Lots of naps. He usually picks one mid-day activity and rallies to do that, then he will eat dinner with us and help out with the girls, hang out with the family, read to the Emily and Morgan, Hannah wiggles too much it doens't go well. Then we hang out watching mindless TV or just chatting. We talk late into the night some times.
Emily: She started riding the bus home from school since she started back and she is really excited about this change in transportation. They went to art therapy this past week and she drew two pictures of her and Craig laying in bed watching cartoons and playing games on the iphone or Vtech. She loves her one on one time with him. They are two peas in a pod for sure.
Morgan: She is having a hard figuring out what to ask and some things seem to be bothering her but she doesn't say much. Adores being apart of this family even if she can't figure things out.
Hannah: Is saying a little more. She loves to dance. She has two new teeth so she is up to 10 total. She will come up to squeeze you for no reason at all without asking. I think those are hugs from God since her name means gift from God.
So that is the longest post ever...
Told ya I was recharged! :)
Please keep praying for peace in our house!
And add Pat who works at the Healing Place on your list (please). He is doing good things.
Thursday, December 29, 2011
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.
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!!
Friday, December 23, 2011
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
Thursday, December 22, 2011
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....
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....
Tuesday, December 20, 2011
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.
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.
Monday, December 19, 2011
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!
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!
Friday, December 16, 2011
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
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
270-217-2328
Tuesday, December 13, 2011
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.
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.
Friday, December 9, 2011
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
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
Wednesday, December 7, 2011
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
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
Monday, December 5, 2011
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...
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...
Friday, December 2, 2011
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!
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.
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.
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