little bit better - Saturday 10/30

He is able to keep down food today and attempted to eat a couple things. Nothing sounds good to him so it is hard to know what to fix. This morning's first stop was Norton to get a shot that will help increase his white blood cells which will help him not pick up every cold that is around. The chemo will make your white blood cells tank about day 7.This shot (I forgot the name and I am not getting up to find the brochure) increases them so the goal is for the white blood cells to stay level as they normally would be.

Anyway we were downtown this morning for that scheduled appointment. Very nice nurse that gave him some practical advice on what to start eating and drinking to try to gain his strength back. She offered him a wheelchair b/c he seemed so tired and I completely vetoed it. I think she thought I was the meanest wife that ever lived. He just needed to walk. I worry about his overall health if he doesn't keep moving even if it is hard. This has been a very hard part for me to know when to push and when to leave him alone. It seems like the more you lay around when we are sick the more you feel sick. I want him to feel better sooner than later but at the same time I don't understand how nausea he feels. I can kind of relate b/c I was sick/nausea with all three of my pregnancies in the first trimester but I think is far worse than this. Or is it? I don't want to tick all the men off but you guys have a hard time with physical ailments. Sorry to call Craig out but it the past a cold has had him laid up for three days! come on! I was back in church couple days after I had a C-section. Anyway, I don't want to start a battle of the sexes I am just saying it is really hard to figure when to push him a little harder to try to feel better and when to just leave him be. Bottom line: I want my annoying joke cracking smart-a$$ husband back. It is tough to figure out this new way to communicate. We are sarcastic people and when he doesn't feel good it is hard to crack a smile. When it hurts to talk b/c he is so nausea it is hard to try to get out of him how I can help. I hope that next chemo treatment we can learn from this one and we will be more prepared. I wish it came with instructions. Seems like every time we call the doctor's off they call in another prescription and that has yet another set of side effects. I don't know what I expected but this has thrown me for a loop, I guess. I didn't realize how sick he was going to feel. I know this is the more aggressive treatment and this is what we wanted to increase our chances of keeping him around but I just didn't get it.

Our second stop today was soccer for Morgan. Mom stayed here with the girls so I didn't have to drag everyone downtown. So when we got back and Craig wasn't up for the game I asked mom to stay at the house so Hannah could finish her nap and Emily chose to stay here with her (shocking!). So Morgan and I were off to soccer. It is always great to get some one on one time with one kiddo. She did great. She kicked the ball off and stuck with the game pretty good. She was upset that she didn't make a goal yet but I told her it was a team sport. She really likes being on the team with some of her favorite friends.

Not much went on beyond that today. A trip to Kroger, we watched the Snoopy's Halloween, ate a little dinner, whatever around the house.

While I was rocking Hannah to sleep I heard Emmy (Emily - we call her Emmy) ask Craig is she could get sick being around him. He of course said no and she said b/c it is just the rock in your belly. Yep you can't catch cancer. Finally I laid Hannah down (I don't know why she took so long tonight to fall asleep) and started to read to Emmy. The hospital sent some coloring books and story books home with us to help explain the situation to the girls. So I grabbed one. Before tonight they really haven't asked too many questions. The question that CONTINUES to come up when I ask them if they have any questions here and there is "how did that rock get into his belly" GOOD FREAKIN' QUESTION! I always say, I don't know and the doctors don't know but they are doing what they can to shrink it. The book we look at was really good. I skimmed through some of the parts when it talked about Daddy will be on chemo for a long time b/c she really doesn't have a great sense of time yet. Sometimes she calls a day a week etc. She knows the days of the week but really time is still a little confusing so I didn't want to burden her heart with the statement that daddy will be on medicine for a long time. I think the fact that there was a book about it calmed her, if there is a book then she is probably not the only kid that has a daddy with cancer. I might be reading into that but she did like the book and she could relate to some of things in it so I think it was good. It is hard to figure out what to tell them and what not to. Their little hearts can't handle the magnitude of it (neither can mine!) but they need to know more than 'daddy is sick'. Tuesday night her and I were in the car running an errands and we chatted about it a bit and she got really quiet in the backseat. That doesn't happen very often with chatty Emmy so I asked if she was worried about something. She said she was worried about that rock in her daddy's tummy. I told her we just have to pray about it and it was in the bible to not worry about anything but everything prayer and petition. She said well what do you mean, I don't know how to talk to God. Oh my goodness, just when you think you are doing the right things... so I told her to talk to God and tell Him her worries were and He would fix it in His own way. Just talk to him? YES (what does she think we been doing before bedtime every night?). Tonight she said she wanted to learn more about the medicine daddy was taking. There is another book they sent home call the Kemoshark and I told her we could read it tomorrow night. We shall see how they goes over.
Silver lining: the sex talk in 5-10 years, is going to be a PIECE of CAKE compared to the Daddy has cancer talk! I think Craig should have to do that one since I took this one.

I hope tomorrow is a new day. He said that he may attempt to get to church but we will see. I don't like leaving him here but I need to leave the house for my own sanity too. I started to think today, am I kidding myself? Here I am hoping that the next six month will be the toughest we will endure and it will be taken care of with this round of chemo. Chances are that won't happen but whose to say what will happen. So I need to just stay positive, I guess, and hope and pray this chemo regiment and God takes care of this cancer and we can put this behind us. Stranger things have happened, right?

Sorry for the long post. I am insanely lonely at night. I get the girls down for the night for some peace and quiet and then I sit here and type up a post or watch something stupid on TV. Next round of chemo I may plan a girl's night in. We have done it in the past and it is so much fun. Everyone comes in sweats and we watch movies our husbands won't watch with us b/c they are chick flicks. really fun. might have to do that next time. I have some amazing girlfriends from high school and college. :)
I am off to watch the Oprah that I DVRed from the other day with the cast from Sound of Music. Love that movie! thanks for listening. I check our stats everyday to make sure I am not talking to myself on here since just a handful are posting comments. (thanks, handful of peeps!)

Hope everyone is having a great weekend with lots of family-fun!

today was a little bit better

I was afraid to post anything too early today since I jinxed myself yesterday.

I wouldn't say we have turned a corner but he is a little better. Little J-E-L-L-O has stayed down and I think he will be much better tomorrow. Home health was here to de-access the port around 1:00. He probably needs to be up and about a little more often but we are still getting use to the ins and outs of the treatments. Now that we know what to expect hopefully next time will be a little less stressful (maybe?).

The girls went to their Halloween parties at school. They are really excited about Halloween. Emily is a Mermaid, Morgan is a bumble bee (she goes around singing the rap song Imma Be) and Hannah is a pumpkin. Morgan has been my little helper bee lately. After I put Hannah to bed tonight I came out and she was wiping up the kitchen floor. She had spilled some water that she was getting for herself and she was cleaning it up. What 3 year-old gets their own water and cleans up their own mess? She is a very special little worker bee which is much appreciated right now.

spoke too soon

He is having a hard time with the nausea and the nausea meds that were called in are just helping a bit but really not enough to feel better.

Hope this passed. It has been a long day that seemed to start out on the right foot but went downhill.

hoping and praying that tomorrow is better.

fatigue, nausea and the office

He is doing a little better today just really really tired and nausea but keeping everything down. He is watching DVRed The Office episodes but I think he is too tired to laugh. He is really ready for that port to come out. They will be here tomorrow afternoon to de-access him. The girls are at Shellshouse, (the loved sitters house) they say it like it is all one word. I am working a little on one of my favorite projects, Kroger Food Angels.
Just one day at a time...

I caught myself saying last night, "if this isn't hell..."
It is a rough time, no doubt, but in hell there is not friendship or companionship. I have friends that I can call at anytime. I have had supplies dropped off at my doorstep twice today. I have dinner waiting for me at Janelle's. People have been ridiculously good to us. Folding towels while watching UofL football, power washing the deck, mowing the lawn, sending care packages, dinners, dinners, dinners, supportive emails, loads of laundry have left the house and returned folded, gift cards, inspirational cards etc. The support has been amazing. This blog is up to 12,000+ pageviews so I know that people are praying for us and I can feel it. There isn't a thank you note big enough to thank you for the support we have experienced. Thanks for everything.

rest of the day

sorry we couldn't catch an Internet connections this afternoon. They did the second chemo drug and Craig got sick on it so they delayed about a half hour and gave him some more nausea meds. He finished the drip and we got set with home health for the third chemo med. He is exhausted. Just drained right now. He was queasy coming home and I have a feeling it will be a hangover type nausea tomorrow.

I got Emily to dance but he stayed here to rest rather than coming along.

I hope that he gets a good night sleep and some of the effects from chemo are very temporary.

Very long day and we haven't eaten dinner yet. sighhhhh.

I can't say things are going well but this is the first round we will know better for next time what works.

Please pray for a recovery from the day of chemo and that we are on the road to healing.

First drip started

They just started the first bag of chemo called Oxaliplatin. It takes 2 hours to administer.
dear Lord, please let this chemo drug shink that ugly tumor. Please let the side effects be minimal.

We know that in all things God works for the good of those who love him. Romans 8:28

We are doing fine, just hanging out. It really isn't as scary as you would think. Craig is reading his Lance Armstrong book and I am checking emails. seems like a strange normal but none the less not really that big of a deal. I asked the RN if we would be out of here by 3:30 so we could get Emily to dance class. hmmm... strange new normal, chemo to dance classs... really? No reason to get down just keep moving on...

prayers for tomorrow

We will be at Norton for the majority of the day tomorrow. Please pray that this chemo will work God's miracle and and begins to take care of this cancer. Please pray that the side effects are at a minmum. Pray for a positive attitude and little anxiety. Pray for the doctors and nurses administering the drugs. Please pray for healing.

 

Wait for the Lord; be strong and take heart and wait for the Lord. psalm 27:13-14

new day, new plan

First, don't say that it can't get any worse b/c you will be proven wrong. Sitting in the oncologist office and what A TORNADO? seriously? I think everyone is okay, they evacuated the girl's school until it passed. really? come on. pancrease cancer isn't enough we need to tack on a tornado to the day?

anyway, moving on...

The billirubin has plateaued at 3.9. In a way that was a blessing. If it was going down we were at a crossroad on whether to wait another couple days to to see if we could qualify for another clinical trial that you needed to be chemo naive for but since it is really not budging we feel we need to move on with some kind of treatment. Before we got there today we assumed that would be the standard treatment, gemcidibine. But Dr. Hamm said based on our last conversation we seem to be more interested in something that is more aggressive. We are interested in what will work but they don't know that soooo...
He talked about a set of three chemo drugs (called FOLIFIRINOX) that have had more success than the standard treatment. They are using it more in Europe than the US. It is a hard regiment but with his age and overall health he can handle it (better than an 65+). There are strange side effects to each of them but you never how a patient will react and they have some medications to help with some of them. The weirdest one is he can't eat, drink or touch anything that is cold. If he drinks something that is cold it will feel like he can't breathe. If he touches something chilled it will feel a burning sensation. When it gets cold outside he will have to wear a scarf or something over his mouth. This will last 5-7 days after treatment. Just bizarre. The rest of the side effects are things that you have probably heard from other cancer patients, nausea, fatigue etc etc. I won't bore you with the details.

We are hopeful this is a good solution and it will shrink the tumor and get us moving in the right directions. The treatment will be every two weeks for 6 month. One drug takes two hours to administer and another an hour and half in the office. The third Craig will take at home. It comes in a pump and will take 48 hours to administer. They will start it in the office then we head home. It drips every so often chemo drug #3 into his port for 48 hours. Then someone from home health comes and deaccesses the port (again this seems very strange).

I add all this to the blog not for you to feel sorry for us. Although these seems a bit ridiculous if this is the new normal that keeps him here with us, bring it on. Today is a good day, a day of hope for the future. Of course it is all wait and see and feel hopeful this is a good treatment plan. We can still look for clinical trials but starting some treatment excludes out of some of them that want the patient to be chemo naive. We don't wait any longer to start treating the cancer.

There is a certain comfort being down at the oncologist office. It is "normal' to have cancer there. Your questions are answered by people that have had that question 10 times (maybe that day). I have been frustrated there too but it is good to have answers when they can give them to you. One thing that I am not sure I will ever get use to is the answer "well it depends". Most of the questions that is the answer. It depends how he reacts to the chemo if he will have all the side effects or just some. Will we have to live in a bubble this winter in order to dodge the cold and flu since his immune system will be compromised? it depends on his white cell count but he will take a shot the day after chemo to increase the white blood cell counts so it shouldn't be an issue but again it depends.
Will he lose his hair? It depends, some people do some don't.
Will he be able to work during chemo? well it depends how he feels.
Will it work? well it depends...
makes ya nuts. There is more that the medical field doesn't know than what they do, comforting huh?

No matter the treatment plan we put our trust in God. We pray that whatever treatment avenue we take He works his miracle through that medicine.
Proverbs 3:5-6 Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him and he will make your paths straight.

We report back downtown to start the chemo regime at 9:30 tomorrow morning. Craig will come home with the chemo drip and we will take one day at a time and one side effect at a time until this ugly tumor is gone or shrunk to a managable size.

still 3.9

Just got the billirubin count back and it is still a 3.9. haven't seen the doctor yet, more to come.

Sunday nights

I don't know what it is about Sunday nights but I seem to get waaaaay ahead of myself. I don't know if it is the agony of what will happen this week. I don't know if it is just exhaustion from entertaining little ladies all weekend but every Sunday night since the diagnosis I have gone off the deep end. "Normal" Sunday nights are usually about making sure sheets are ready for daycare, backpacks are by the door, clothes are laid out, load of laundry done etc. I still do those things it is just with tears in my eyes. reality sucks right now. We are hopeful and prayerful but reality really really sucks right now. No one is promised a certain number of days but when it is out there that someone somewhere is counting yours it really hits you like a ton of bricks. Even if Craig beats the odds, 15 - 20 years isn't long enough. No amount of time will be good enough. I want him at high school graduations, weddings, grand children's graduations and weddings, great grandchildren's weddings... so greedy about our time together.

It is Monday and it is a new day. I can sit here and continue the pity party from last night or I can get to the new week and thank God for my fantastic family that I have today.

Saturday night - date night

We do date night on Saturdays quite often when we can. My mom comes over about 4:30 and watches the girls while we go to church and then to dinner. I like taking the girls to church on Sundays b/c they get so much out of their classes but I am not going to lie it is so much easier to get in and out of there when it is just the two of us.
The question series continues. This week's question: What?
What do you want me to do with my life? What are the plans you have for me? etc. We went over Romans 12 and talked about circumstances builds character which made me think of Romans 5. Someone emailed it to me the other day to read.
Romans 5 Therefore since we have been justified through faith we have peace with God through our Lord Jesus Christ through whom we have gained access by faith into the grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so but we know that suffering produces perseverance, perseverance, character and character hope. And hope does not disappoint us because God has poured out his love for us into our hearts by the holy spirit.
great series, very timely

the song right before the sermon was AMAZING! I of course can't remember the title but the overall theme: LUKE 1:37 FOR NOTHING IS IMPOSSIBLE WITH GOD. (good news for us!)

After the service we went to Carrabas and ate our leafy green liver cleaning salads. :) That darn billirubin count better go down. I think we have eaten a garden and a half this weekend.
Craig said he felt like a real person having dinner out. I guess he meant he didn't feel like a cancer patient. I don't know.

great date night with a great date (minus the ugly pancreas)

Huber's for some pumpkin pickin'

Friday afternoon we took the girls to Huber's to do some pumpkin picking. This is usually my favorite day of the year. I usually get them matching tees that look cute with jeans. I love the pictures with the fall leaves in the background and pumpkins for those fall moments. We got our pumpkins and the girls picked pumpkin ice cream for an afternoon snack. Adorable picture taken - check, pumpkins picked - check, fall treat eaten - check... We got back home and it was fine. Another fall tradition down, but it was the same feeling as I had at the UK game, it just isn't the same. There was this THING lurking. No matter how good Craig feels or how normal the day might seem it is still there... cancer. I don't know whether to try to shake it, make the best out of it or what. We said the first week of the diagnosis we are still going to make our plans and do the things that we love to do and just work cancer in. It won't define us. But it is always there...just not sure what to do with it. Other than to pray it just GOES AWAY, sounds ridiculous but that has been my prayer the past couple days, just make it go away.
It was good to be able to go. I thought we were going to miss it this year since we normally go at the beginning of the month to try to beat the crowd. It wasn't crowded since it was a week day.
Pictures to come.

God's good timing

http://www.access.tv/sermon/you-anxiety-/

God's good timing. If I would have listened to this sermon BEFORE I posted the 3.9 blog post maybe it wouldn't have been so panicked. The email came through about 15 minutes before the bloodwork came back. I thought it was God's timing b/c of the absolute crappy night we had last night so I waited to listen to it. But it was b/c we can't put our faith in billirubin counts.

Couple Sundays ago I was down, really down. I questioned why THIS cancer. You know cancer is bad enough why one of the hardest to beat? We would have praised Him through another kind of cancer, why this one? Here is the answer I got: "without a shadow of a doubt it will be through God good grace this WILL be taken care of." WITHOUT A SHADOW OF A DOUBT IT WILL BE GOD.

I have learned that cancer will kick you square in the face when you are down. You will be hopeful one minute just waiting on things to happen and it hits you hard. One little criticism, and it hits and then it kicks you when you are down. But God doesn't, He is there. He is the rock that we have to put our faith in, not the counts.

thanks Lindsey for the sermon.
and thanks God for your timing.

3.9

Billirubin is at 3.9. not good enough to qualify for the clinical trial. Tuesday they will  redo the blood work again. If is it not down any more than they advise to start the standard treatment. if it is down to a 1.5 he can still participate in the trial.
I can not tell you how freaking frustrating this is. They have no advice on how to get this number down other than to drink more water. There has to BE something that we can do before Tuesday.
I think we are going to dig up the dietitians number to see if we can sit down with her to if there are better things that we can be eating.
I am so frustrated right now I could just scream. Standard treatment pisses me off. That maybe fine for someone without three kids and a wife but HELLO we have to be more aggressive here. But then I think maybe we are stressing over nothing maybe the standard will work even if it has a crappy track record in general. maybe Craig would be the exception.
It is so frustrating to not know what to do and to have some doctors be okay with going back to the "standard".
Anyway more to come...

if you have any scriptures on patience and guidedance and not stressing POST them. Somewhere in the spinning my go-to scriptures are lost in the what to do next.

this blog

I don't have anything to report at this time. They just blood from Craig's port to be tested for the billirubin counts and it usually takes an hour or so to get the results back. We are just waiting for the doctor. We do a lot of waiting.

I wanted to post about this blog and the future of this blog. I have been criticized for a post that I deleted yesterday b/c it sounded  not political correct. Let me tell you this disease is not politically correct. If you don't like what you are reading then don't read the blog. I can't make cancer pretty, it is UGLY with a capital U-G-L-Y. We haven't gotten a month into this and I can tell you that it is ugly. The physical side effects that I didn't post about to spare the integrity of my husband are ugly. The emotional side effects are UGLY. You can only sugar coat so much. Two/three weeks ago I set up the blog b/c I was send a billion and one text messages, emails and facebook messages a day and saying the same things over and over. Most have said wonderful things about the blog, they know what they need to pray for, they don't have to call us 10 times a day to see how things are going etc etc. I appreciate the support but here the facts, there may be post that you don't want to read. Don't read them.

One of my fears with this blog is for the people that don't know me. There are BB&T friends and grade school friends of Craig's that don't know that I am an extremely scarcastic person and what I say may come off as insensitive at times. Know that I love this man with all my heart. We have a different relationship but it works for us (most of the time). We are not perfect and we don't claim to be. We fought before cancer we will fight during cancer and after cancer. We are opposites and through God we have worked through our differences and our marriage gets stronger everyday and sometimes it doesn't. Generally I am a very black and white head-strong person, through God's good grace and being married to an EXTREMELY patient man my edges have soften over the years but this blog is the story of a journey through the struggles of cancer. You can either take it or leave it.
I am also really long winded and probably talk too much so sorry for the long tangent, I had no intention of this being this long...

In the future this blog will be private rather than public. More to come on that when I figure out the details.

PS it wasn't someone at BB&T or a grade school friend, I didn't mean that that way.

If you build it he will come...

Okay so we are on hold until Thursday so here is a semi-funny story (depending on your sense of humor). Disclaimer: We have a sick sense of humor around here.

Last week Craig was still getting use to his pain meds and didn't get a lot of sleep the first couple nights back at home. When you have never had anything wrong with you or never had any type of surgery then you never know the effects these meds are going to have. So when Craig would take his pain meds and try to go to sleep he would hear voices. He said they really weren't saying anything but they were annoying (um - yeah I would think so). So the second morning when we woke (to probably a child demanding to watch cartoons) I asked him if he heard the voices. He said "yes, they said "Build it and he will come..." Quickly I said, "We are NOT building a baseball field in the backyard."
This isn't Iowa buddy, it is Kentucky.

He is upstairs while I am working in the basement watching Field of Dreams. We are NOT building a baseball field in the backyard. (friends - do not show up with trucks to uproot my yard, Brent... Jason, do you hear me?!)

Another (not) funny story was in the hospital he said that he saw bugs all over the floor. I said I think you are hallucinating like I was in the hospital when I had Emily. (the pain meds made me see bugs and dirt around the room, it was so strange). He started laughing at me. He was just making fun of me. Hilarious buddy, hilarious...

These are the jokes people.

We're getting there...

4.5 for the Monday bilirubin count. They just called with the number. We were there at 11:00 but they didn't get to us until 12:30ish. We will have to go back Thursday for another blood count. If it is at a 1.5 then they will start the chemo if it is still on it's way down then they will have us back next Tuesday. That is the last call day. Has to be 1.5 by Tuesday or we will have to come up with a different game play on the clinical trails.

Keep praying for a 1.5.

Good Weekend

I'm happy to say to say it was a very long weekend but it's the better 2 days I've had in a few weeks. I learned that a strict and stepped up regimen of pain medication has allowed to be more full of life and not in as much pain. Some of the pain I've been I have been having my abdomen has really slowed me down lately but I was able to get out and about this weekend and actually enjoy the time. I was worried about having to send the family to the UK game last night without me. We also planned on leaving at halftime of the game because I assumed that's as far as we would be able to make it but we ended up staying the whole game. The game ended up being one to remember as Steve Spurrier falls to 17-1 against the Cats. Today was a good day as we formally "dedicated" Hannah at church as we, our family and friends and the congregation promised to raise her to know Jesus. Hannah has been such a blessing and such a good baby and we are excited to see what life has in store for her. We got to spend the day with much of the family and close friends. I am extremely grateful for how much support we continue to receive and it was a great pleasure to spend some quality time together. We feel extremely lucky and blessed and I can't say enough about that.
Tomorrow brings a big day as we have another doctor's appointment at 11 to see how my bilyrubin levels are doing. I have felt so much better this weekend that I am optimistic those levels are going to be a lot less. It will be hard to get us down to the 1.5 we need right now but I've got to be on my way. The temporary plan is for me to start chemotherapy on Thursday along with the clinical trial. If I'm not at the 1.5 tomorrow, I believe I should still have a few days to get my bilyrubin down. While they want to start me on Thursday, it is possible I could have until next Tuesday to get started if permission is granted by the clinical study. There will be about 5-6 other patients a different centers across the country that will start the clinical study on Thursday so it a very formalized process and study. I'll try and explain a little more later once we know I will definitely be a part of the study. I am optimistic about my appointment tomorrow but it will tell us a lot. Michelle thought I was a little crazy today when I told her I was looking forward to chemo. My attitude can change very quickly but I want to get this started and I want to start beating this. I want to get to feeling better without relying on pain meds and be a fully contributing member of this family. I want to be the dad I've been which means rolling on the floor and tickling the girls until they can't take it. I want to go on walks with my wife and I want to be able to keep up. I've got a lot to look forward to right now and I'm ready to get this ball rolling. I'm still keeping my prayers in check and I know God is in charge so I'll roll with whatever comes. I'll certainly take advantage of anything positive He sends my direction though.

UK wins!

It was tougher than I thought being on campus yesterday. Usually it is a day of absolute joy, reminiscing about the days we lived on campus and making new memories tailgating. I am not sure if it was tough b/c the days on campus were so much easier than what we are facing now or if I was scared that was the last time we would walk campus together. There has been very few times that I am walked that campus without Craig. We met October of our freshman year and although our dating relationship was rocky at times we were always friends regardless. We both went to business school so we walked to classes together, we were both in fraternities and sororities so we partied together (a lot - probably too much). I don't want to ever walk on that campus without him. With God's power I hopefully won't. It was a great game in the second half. Both girls made it all the way through the game but said it was a long game. It was a long game but worth it to see the wildcats pull it off it in the end.

Today is a new day and a full on at that Hannah's will be dedicated to Christ today at SECC at the 11:15 service. More to come on that... sorry awake baby waiting to be fed. :)

On! On! UofK!

We are heading to Lexington today to watch the Cats play the Gamecocks!! It will be awesome to get to do one of our fall family traditions! 
Go Cats!

busy Friday

We have been trying to get a very dirty house in order for Hannah's dedication on Sunday. Tomorrow we are still hoping to make it to the UK game for the annual family trip. We shall see. This year we had planned on taking both Emily and Morgan. We normally just take Emily b/c Morgan has issues sitting still. I love taking the girls on campus and showing them all the places that Craig and I use to hang out in college. Most of you know we met at UK in 1996, our freshman year. I hope to make it but one day at a time. Nothing really new to post today. Semi-normal day here at the house except Craig is at home with us and my brother is around doing some things to help out. Craig had some trouble with pain mid-afternoon and he called the doctor's office and they said to just keep on top of the pain meds so that's what we will do.
Go Cats!!

Bilirubin still high

Craig's bilirubin count is still too high. It is still at an 8.1 and it needs to go down to a 1.5 (sorry I thought it was a 2-3) to qualify for the clinical trial. We have until Tuesday to get it down. They will do more blood work Monday and see if it is down. Dr. Ham expects it to be down based on the fact that Craig's eyes are not as yellow as they have been so he thinks it is on its way. There is not much to do to help except stay away from fried foods, high fatty foods and drink a lot of water so that is what we will do this weekend. I have to say I am anxious about it but there is no use in that it won't help anything.

"Do not be anxious about anything but in everything prayer and petition..." Phil 4:6-7

They went ahead and gave us the information on the clinical trial and Craig signed the consent form to reserve his seat. They have another patient doing the same type and he is doing well three months out. His tumor has shrunk in half since he started. I think it is the same guy that she was talking about last time we were there, that rides the bicycle. Today she said travels too. She is Russian, so sweet and pretty funny. She was trying to explain the how cancer cells work. She says "you remember Biology 101 when they talk about the cells..." Lady, you don't even want to know what I got in biology 101. Most of the things she said today I didn't understand and there is so much to it. Finally I asked if there was a chart that I could look at, ah yes, there it is page 12 of 25... geez. We are just going to have to take it one week at a time. It is measured in 4 week cycles and then you do some test to see how things are going.

The regular chemo that Craig will be on is called Gemicidibine (sp?). It has little side-effects but if they do happen they should be easy to manage. They have drugs for nausea etc. He probably won't lose his hair... hahaha like that was a concern! He will go once a week for about an hour or two. The clinical trial drug is a pill taken at home daily. It has to be stored in the frig (move over butter, chemo coming through, freakin' ridiculous). Umm... what else.

He feels pretty good today after eating a little better. We had lunch at Qdoba after the appointment. He needs to eat smaller meals more often so he can maintain his weight better. It is so refreshing and wonderful when he feels good.

We have soccer tonight with Morgan and I hope that we will get to go as a family again tonight but we will see.

Anyway, we just need to pray for the bilirubin to drop drastically this weekend. Craig may add more to this later today.
Thanks for all the prayers keep them coming.

bits of normal today

Today we don't have much going on. Our big girls went to school like a normal Wednesday and I am working a little bit here at home. Hannah is with me (I work at home, thanks S+A!) like normal. Craig says he is just tired today from yesterdays events. Hope he is feeling better later today. The billyrubin should drop within 24 to 48 hours after the stet, typically. We are praying for ease with that. He had a rough time in the hospital the first time. Sounds like he had pancreatitist which is a risk of the procedure. We are hoping to dodge that this time. Praying for no infections and low billyrubin by tomorrow's blood work. 2-3 is the goal before he can start any clinical trials.

I also pray that once we get this on track Craig can get bits of normal back. The research gal (insert fancy title that I forgot here) said that one of their other pancreatic cancer patience is doing amazing on his treatment. I asked what was considered amazing. She said (she is foreign so you have to say this with an accent) "You know he is working and he ride bike." We don't have a bike but whatever. Craig loves his job so it would be nice to see him get back to something when the time is right.

Thankful for bits of normal today (as Hannah giggles behind me - she is just so darn sweet) and praying for healing from the stet procedure.

Thanks for every one's prayers.

New bigger and better stet

Dr. Vitale replaced and installed a new longer stent today. They wrote Craig in at the beginning of the day but some 84 year old had an emergency overnight so we got bumped. We started our day at 6:00a at the hospital and they didn't get to Craig until 1:30ish in the afternoon. One hour procedure, recovery, parking... blah blah, we were home at 4:00ish. So tired. Craig is feeling better but groggy but hopeful that this time it worked. His billyrubin was going down before they even redid it, at a 8 before surgery, so that is good but it just wasn't fast enough for their liking. The oncologist will do labs Thursday morning to see if this one is good to go and doing its job.

As far as a treatment plan, at this point, we are leaning toward staying and doing the clinical trail in Louisville. After an extended conversation with a friend of a friend of my brothers who is a GI doc at MD Anderson we are about 80% sure that we need to stay here and give the one here a try before uprooting the whole family. Although MD Anderson is not out of the question for the future it would be best to start at home. He assured us that the clinical trails that they have going on there are not magic, they are not a micracle drug or he would tell us to get on a plane tomorrow. The trial at MD Anderson that would fit Craig best would be once a week for a long time so we would be moving to TX rather than visiting for a day or so once a month. So that is where we are tonight. We will sleep on it and pray about it again again again to make sure it is the right plan for Craig's health.

Emily (4) and I read the story tonight at bedtime about Jesus healing 10 lepers and only one comes back to thank Him.
Dear God, If you choose 10 pancreatic cancer patient to heal and Craig is one of them, we WILL be the one that comes back to thank you.
Luke 17:19 Rise and go, your faith has made you well. 
And thank you God for sending us our Angel doctor, Chris that just spent 45 minutes on the phone with a total stranger to try to help them out. You provide in so many ways.
amen

Tomorrow we have nothing and I like it that way. I should reschedule Hannah ped. appt but I would like to go one day without someone in my family getting poked with a needle. poor baby.

Quick Monday Update #2

I'm scheduled to be at Norton Pavillion downtown tomorrow morning at 6:30am for 7:30am procedure; Dr Vitale is going to go through the same procedure I had last week and try to reposition the stint for me. It will be outpatient but I'll be under anesthesia and will have some recovery time. We'll talk to you tomorrow.

Monday's updates

To update you on today, keep in mind I'm still waiting a few phone calls so this may not be the last update. We saw Dr John Mann today who works down at Louisville Encology to discuss a clinical trial that I may qualify for. They do in fact have one starting next week and it sounds like a good trial that a number of centers across the US are doing right now. It's on a small number of patients and in very early trial stages but they feel I'd be a good candidate. These clinical trials are important because we need to hope to find something that can greater help me. The regular chemo treatment would "buy" me some time but probably won't give me what I'm looking for. With all that being said, I HAVE to get my bilyrubin level down before I can qualify for any trial and unfornately we just found it is still at 10 which is high. I wasn't surprised though because I don't really feel better than last week. Basicially I'm not getting a good flow through where my pancreas and liver are. The stint we placed in the bile duct last week hasn't really worked and it should have by now. Dr Mann has referred me to a different GI surgeon to probably redo the stint and hopefully get it done this time (not get'er done). I can't wait to get this relief, pain meds are fine but it's down right annoying. We are waiting on a phone call because there's a good chance I'll be headed in to see this new doctor tomorrow to have this outpatient procedure done again. It's the ERCP thing where they stick a camera thingie down my throat all the way the down to this important intersection of everything and place a stint in there keeping the passage ways entirely opened. My main focus is getting this thing taken care of. If that still doesn't work, we'll still have a few more things to try but they start to get a little more evasive (like sticking tubes in my liver to suck stuff out). We've got a referral into MD Anderson down in Houston and are awaiting a phone call back from them. This still looks like this is what we are leaning towards but that's a lot to say without actually speaking to someone there yet. We'll fill you in once we know what is going on tomorrow. I'm glad this trial is available that I mentioned above includes Louisville but we have to tell them whether we are in by next Monday so timelines aren't fun. Again, just pray that we and my doctors receive the wisdom to make some good decisions.
Craig

He vs. We

When I post updates on the blog I usually type "we are ...." then backspace over the "we" and put "he". Although it felt like we were both being diagnosed with cancer in the hospital we aren't. When Dr. Bowls came in I was laying in bed with Craig like we do when we talk about anything. Parents with multi kids and jobs etc know the only time you normally get to chance up is laying in bed 10 minutes before you dose off. Although that is not ideal it is normal. So I wasn't going to sit in the chair aside my husband and stare at him like a hospital patient. He wasn't a hospital patient he is my husband. "To have and to hold, in sickness (gulp) and in health." So when they came in to say the spots on the liver were cancer I was laying right there. The doc was looking at me too like I had it too. He is the one that has to fight this physically and in ways I am just a cheerleader on the sidelines and in other ways this is just as much my diagnosis as it is his.

I had a rough afternoon and late evening yesterday. And Craig was the one talking hope and God is bigger than this. And anything can happen with God's love. Cheerleaders get tired too.

We have an oncologist appointment downtown today at 1:00. They will check the billyrubin count. They have a clinical trial in town that we/he could do. We are still thinking about going to TX and we will probably make that decision today after this appointment. Please pray that the billyrubin has gone down and they don't have to go back in and do another stet surgery this week. And pray for guidance on next steps.

thanks for all the prayers.

Church

We made it to church this morning. It was great to see some uplifting friends and have some support in our row. This sermon series in on questions you wish you could ask God. Seriously this blog is just not long enough. This week question was "Why?"
Geez.
The sermons for SECC are posted on their websites on Tuesdays if you want to peak in and not fight the traffic in the parking lot. (which is never that bad by the way) http://www.southeastchristian.org/

"For I know the plans I have for you, declares the Lord...plans to give you hope and a future."

I'm a little aggravated today so I just hope my plans match God's plans.
Craig is in good spirits other than a little tired this morning. He is not sleeping that great at night with the pain meds. P.S. He is not medicine that help heal him from the procedures he had last week. Which will set him up for chemo and eliminate some issues. Nothing to really do with the actual cancer just yet.

My First Post

First I'll say my wife likes to talk more than I do so you'll probably hear from her more than you will fromme :)  Anyhow, I'm very appreciative of all the kind words and prayers that have been shared with me and my family over the last week.  I guess I'll start off with some thoughts from the past week.  I'm high in spirit but unfortunately low in energy more often than I'd like to.  However, the last 2 days have allowed me to really enjoy some quality time with the family.  Unfortunately cancer is a disease that goes around too often these days.  The craziest thing to me is how rare it is for me to end up having a problem with the pancreas.  My family has lots of history of heart problems so I knew a life to 80 was improbable.  In a lot ways I'm just shell shocked.  I made the mistake of jumping on google the very first hours I was in the emergency room and they were running tests on a mass on my pancreas.  I remember the stats weren't flattering to say the least but I also don't remember anything saying 100%.  I'm taking solace right now in the fact that the avg patient with stage 4 pancreatic cancer is in the 60's to 80 and by golly I've got a lot more energy than that average patient.  I have so much to live for with my wife and 3 little girls so I'm 100% dedicated to keep fighting this as long as I can.  I've been warned that this a type of cancer that will never really fully go away but I can also hope for future advances in medicine.  I've got my family, friends and tons of prayer support but if you ask me, I've got all my chips cashed in and I've handed this over to God.  I think a lot of people would be mad at Him if they were given this news but if anything, I'm kind of mad at myself because he probably knew I could handle this.  I'm not pissed at anyone, only thing that upsets me that if my day should come, I leave behind my wife with 3 of the most adorable little girls in the world and me not there to love and help raise.  This week we'll have some appointments with cancer doctors from Norton and we may possibly be sliding down to Houston to learn more what "the best" have to say.  We'll see how monumental this week will be and just help us pray that we make some right decisions if they are to be made this week.
Craig

soccer

We made to soccer this morning. Craig said it was great to get out. It is so pretty outside. It is good to breathe different air. The team did great. It is 3 years olds so they don't keep score but I am pretty sure the purple team won. They were a little intense with the drills before the game. (geez, they are three!) Some of our guys think it is football. Morgan really just likes to run, not much for getting near the ball. Our super star is Ashleigh our niece. She is small but mighty. She makes it down the field in no time flat. I hope he feels up to coaching next week. He really loves it. It has been his dream to coach his kids and we decided to sign them up for soccer early before they had opinion on the sports they wanted to do. Emily has already bailed on soccer and does dance.

Craig is anxious to get to church and wanted to go tonight. I think the morning would be best. Too much crammed in the first day out is a recipe for disaster.

We just finished up a series at SECC on prayer and prayer is so powerful in groups. I am tempted to ask people to join us Sunday but I am afraid that Craig won't feel up to it and we might be a no show. We are day by day but at times we are hour be hour. Anyway, if you want to pray and worship with us tomorrow we always sit on the third floor in a section close to the middle. I have to admit I am ready for a little worship to lift up. Sounds crazy but I need a good anthem in my head and nothing is sticking right now.

Hope everyone is enjoying this pretty afternoon with their family. :)

Bye Bye 313

Craig was released from Norton tonight. He is doing great at home. He had a 100 temperature when we left and it increased to 101.5 when we got home. Home 2 hours and already calling a doc. Dr. Bowld  (surgeon)called back within minute. He is so nice. He called an antibiotic to start tomorrow and said that he wasn't concerned. so we are here now, watching baseball (i will give him the remote for now) and making charts to keep up with the medication. sigh.

BUT everyone is in their own bed and my poor mom isn't on the couch and i don't have an alarm set so run up to the hospital to check on everything there. so glad all 5 of us are in this house tonight together.

soccer tomorrow at 9:00a. That is the goal. I am looking forward to seeing our team. they are so darn cute. craig isn't going to coach this week maybe the next one (Rich? you good? got the play book? hayden and emma in at the same time so they can hold hands down the field) yeah for 3 year old soccer! Our team is awesome! If I can figure out how to post pictures I will.

Good night to all. Hope everyone's family is tucked in all under the same roof. Be thankful for that.

people look at me funny

people look at me funny when I tell them what he has and what we are going through. Like i should just sit around and cry all day. i have my moments and monday night lost my mind (thanks janelle for taking that call)
but what I learned from that night is it didnt take it away. the cancer is still there. it isnt production and I have three kids too. why drag them down? why would I spend my time googling horrible news when I can spend that time praying and researching how I can help my kids understand. research case studies that worked. Look at diets that might help him feel better and less nausea? sitting around crying and being down isnt going to help this.
I will have my days and nights I am sure in the future where I am just done with it. and there are going to be days that i just sit my kids in front of the tv b.c i dont have the energy for anything else. but right now we are positive that we are not going to take the answers from the google search or the stats from the gloomy docs. this 6 months crap just isn't going to work. we have the resou rces to make this better. we have family and we have a billion friends praying. I need him more than God does and I have told God that.

Friday 10/8

this morning has been busy with visitors. doctor visitors.  Craigs billyrubin (sp?) went down .5 which is really not good enough but we are hopeful that it will continue to go down. He was so tired after the surgeon came in and another doc came in so he was resting but not in pain. he is much better spirits today. his sense of humor is back which is refreshing. (never thought that i would miss it but man he is not the same without the corny jokes in between).

Okay so the onocologist came as he was dozing in and out. we know (and kinda knew along) that is stage 4 Pancreatic cancer.

They are looking at a clinical trail here in Louisville but his billyrubn has to go down before we can do anything.  unlike other cancers we dont have to rush into starting chemo today or even next week. So we have time to make some decsions. we are talking about going to TX to MD Anderson to see what they have to offer. Everyone raves about the success there and how they treat the patients. We need to make a decsion probably over the weekend if we are going to TX. we have an appointment with the onocologist monday that is doing the clinical trail here and he will check the billyrubin count then and get his opinion on MD Anderson too.

surgery is not an option to even discuss until wayyyy down the line and maybe not even then. the goal is partial remission and shrink the cancer by 50% and then complete remission for the mass to not show up on the CT scan. there is no cure for this and he will always have cancer but plenty of people have cancer and live normal lives. we have to find ways to manage it and keep it in check.

ummm... what else did she say...

his tumor marker is 219ish and the goal is 30s. the 1000s are bad bad bad.

needs to gain some weight back and not lose any more.

we probably wont find anybody in our age group going through this in support group so we should sign up for under 40 support groups for cancer in general rather than Pan. cancer.

i think that is about it....i think she is coming back.

we hope to be leaving the hospital today. craig is sleeping now and he is trying to take the pain meds orally rather than IV so we can see if he can tolerate them at home.

we will  take it day it day by day. tomorrow is hopefully soccer and that is about it. sunday is hopefully church and that is about it. and monday is the onocologist. rest in between.

we wont have visitors at home. the girls havent seen him for more than an hour for over a week. he will be spending time with them.


so here are the facts:

Pancreatic cancer stage 4 (b/c is it in the liver)

and our God is bigger than this.

Morgan - that girl is just too much

the girls have come to visit twice. i put them in PJs after dinner and then they come on into the hospital. I have told them that dad has a "rock" in his belly and it is cancer. they are not even afriad of that word. it could be because their friend ViviAnne just finished treatment for leukmia in September and we use it often. but they didn't flinch when i said cancer. they saw his "button" (port) to get the medicine into him tonight. they miss their daddy terribly. emily melts down in tears at times and all the sudden the troubles of the world come pouring out and you can't answer it quick enough. morgan not so much, she gets nervous and can't sit still (can't tell where she gets that - ha!).
anyway this was supposed to be a cute story and I got side tracked. at times we play high/low at the dinner table. What was the best part of your day and what was the worse? So Craig asked Morgan tonight, what was the best part of her day. "well seeing you, daddy" do you need another reason to kick this?!

I came back up to the hospital after I got everyone down for the night at the house (mom is staying with us) and Craig seems in great spirit and much better mood than this afternoon. what can a little dose of daughters can do...

side note: i dont know why the times are incorrect on here. and if there is anything that you want to know let me know. i am leaving details out about craig bc well cancer and what he is dealing with physically just isnt pretty.

ugh

i am not going to lie. this is just really hard. the days are long and it is hard to figure out the right answers and we haven't even started the journey. even the day to day is tough. i feel like a wimp sometimes, it is just the first week and I am already so tired of it. we have so long to go.

it is hard to get back on the positive train.

we are still hoping for a release tomorrow but Craig has to be a lot stronger and feel a lot better. we are waiting for his billyrubin (sp?) to come down and the jaundice will stop and he will feel better.

then we will be on to the next step...

and we are back in the room

I am probably updating this too much but it is just easier. we are back from the port placement surgery. everything went well. God provided a wonderful ray of sunshine in post-op. Her name is Kim and her brother had the same cancer as craig will probably be diagnosised with later today. He is 15 (!!!!!) years out and doing awesome. She was saying dont let them give you a timeline. there are so many things out there they are doing. She also gave us a book about a cancer diet that might help. i am sure some docs would say it is a load of bull but you know what we are going to do EVERYTHING. If make some crazy juices in the morning might help, bring on the crazy juice! she was also saying keep making your family plans and stay up beat. that is what we are going to do. If you are reading this then you are a friend or a family member. that is your task TO STAY UPBEAT!!  And doom and gloom will be left at the door.

Dear God,
Thank you for Kim. jsut at the right time after a hard night. You are soooo in control!

port

craig is in surgery getting his port put in. they finally found some pain medicine this morning that got his pain down to a 0 which hadn't been there since lunch yesterday. That was great news going into another procedure. we will probably stick with that medicine until he feels better. I still hope to get out of here tomorrow but he has to be feeling better.
prayers for a smooth port placement.

PS thanks S+A for the loaner laptop, much easier to write everything on this rather than 20 text messages. 

4:00 am

CT scans came back with nothing new to worry about. looks the same as yesterday. no blood clots on the chest or growth to the golf ball. Whouldn't it have been nice if she came up to say "hey it's gone, your miracle arrived earlier than expected you guys can go home now"? we could get back to the challenges of parenthood, a baby that doesn't sleep through the night, sight words with a Junior Kindergardener and gearing up for the soccer game on saturday. i would love to be stressed about media buys and a dirty house.

not the case.

thursday's prayers need to be of healing of these couple procedures craig has had this week. we need a strong body to move onto the next step. we need to sleep and relax  throughout the day. we need to be able to hear the onogolist tomorrow. we will have absolutely NO VISITORS. I want to get home with him Friday if possible and he has to be much better  than he was tonight.

Please also pray that we don't get too far ahead of oursleves. day by day. each day a new challenge to face. we need focus on today rather than the next couple months. It is too much to take in. we need prayers of positive thoughts filling our heads rather than cancer stats.

God is bigger than this cancer. we just need to keep that in mind as we hear the next steps later today.

please also pray for my big girls. they have minimum knowledge of what is going on. and over the weekend we will need to tell them more. not sure how much more but they know something is up since different people are around and daddy isn't.

thanks for the prayers.

now i hope to be able to get some more sleep. 3 hours isn't going to cut it.

tonight

we are heading for a CT scan of the chest and the abdomen due Craig's elevated pain level tonight they want to double check to make sure there are no changes since yesterday. he had a stet place in the liver and the surgery has left him in pain. the pain should have been managed better throughout the day and now it has caught with him. at least that is what we are hoping and nothing on the scans have changed for the worse.

Wednesday 10/6

It is cancer. Our 1% chance of nothing is gone and it is cancer. More to come with biosy results tomorrow.

Tuesday 10/5

God is so GOOD! After a few hours of sleep I woke to a crying baby and positive thoughts filled my head. God's thoughts. He will be there and there is hope. It might be nothing but if it is there are options. With His good grace we can do this. A doctor friend had said to use my negotiating skills when we don't like what the doctors are saying. Look for clinical trials if need be. Some are out there and they are doing well. Don't settle for something that you aren't okay with. I wasn't going to settle for being a single mom anytime too soon. The focus for the day was to stay positive. God is Good!!

Monday 10/4

It was a normal morning at the house. We had had a great weekend with not much planned. Morgan's soccer on Saturday and Sunday church and dinner with friends. Craig had been feeling tired and a little sick for a couple weeks and Saturday looked yellow so he finally agreed to call the doctor Monday morning when he got into the office. When he called the doctor and gave him a list of symptoms they instructed him to go into the hospital for blood work. He had just had blood work done a couple weeks prior with nothing alarming to show so we really thought nothing of it. He arrived at Norton Brownsboro and started some blood work. Levels in the were elevated in the liver and that lead them to do a CT scan of his abdomen. The CT scan showed a mass about the size of a golfball in his pancreas and spots on the liver. Very troubling. He was admitted Monday evening and Dr. Morris visited with us and clarified that it is probably cancer and the fact that that there were spots on the liver were especially troubling. We were probably looking at pancreatic cancer which is not a good one to have.
Tears fell...