Friday, November 5, 2010
Friday - stay home day
Most mornings Emily wakes up and ask what kind of day is it? School day? Shellshouse day? church day? or Stay at home day? I have Friday off of work (could I have a better gig?) So I stay at home play with the girls, catch up on housework (or call the cleaning lady :)) etc etc. So today is a "stay at home day" and Craig is of course here so they are playing wii (he got it to work after all). Not much going on with him, he seems normal which is comforting and stressful at the same time. Wednesday night I think it was he was good-to-go and I got so stressed out I couldn't feel my neck. It was like okay, we got through the first treatment but we are far from done. It is like waiting for the other shoe to drop. I am trying to enjoy "the normal" but at the same time I am anxious about next Wednesday and starting all over again and again and again. And after all that what if this doesn't work. There are no guarantees with cancer.
I keep going back to one of my favorite scripture. "Be anxious about nothing, everything prayer and petition." It is on repeat mode in my head 24/7. Still tough to do. I think I should tattoo that on the back of my hand. Actually most Type-As should have it tattooed somewhere.
Yesterday was a busy day, dropped off at Shellshouse, worked a couple hours, dentist appointment and then some elders from Southeast came to visit us in the afternoon. After that we picked up the girls and went down to Gilda's club for the first time.
One of the men from SECC said the scripture that has been on my mind since about Sunday. It was just mentioned in the sermon. But is stuck with me, actually one word stuck. CONFIDENTLY
"Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need" Hebrews 4:16
Confidently? CONFIDENTLY?!! Is He serious? How do I go confidently to to throne with your prayers? How could I go to Him with this when we are hanging on Him by a string. He can direct the path and with a blink of an eye it can go the other way. The first week in the hospital I about went horse pleading with God to let me keep Craig. I was begging a parent to be able to keep a dog that I found on the street. I fell asleep most nights saying "PLEEEEEEASE let me keep him." The more I said PLLEEASE the more my throat was strained. I fell asleep most night begging Him to just let ME keep him, PLLLLEEEASSSEE!
I heard this scripture last weekend and was completely baffled. Confidently? How can I go confidently to Him when SOOOOO much is at stake? He is the one that decided whether I will get to continue to be a wife and my kids with have their dad. I thought what do you want Lord, a PowerPoint presentation on the reasons why I need him more than one do? You want a top ten list bullet pointed? You want me in my new business suit (which I haven't worn since I was 5 weeks pregnant with Emily so it wouldn't fit anyway) and approach you confidently with my request? I keep going over the thought, I didn't get it.
Then I thought about my girls. I can't stand whining. I about lose my mind when they start on me. It is like nails on a chalk board. So one morning someone started (I think it was Morgan) and I always stop them before they get the full sentence out and I say stop whining and start again with the request. Then they have to say it without the annoying whining voice. Come confidently with your request.... I don't think God likes whining. Just like any parent you will take any request at any time no matter how it comes and He will listen. But just like any parent He wants me/us to have confidence that He will take care of the situation. I want my girls to know that I will take care of their needs. I make decisions for them that are best for them. It may not be what they want but it is the best decision b/c I am the mom and I know what it best for them (most of the time). Just as He knows what is best for our life (all the time). He is the best parent and He always know what is best whether we agree with Him or not. So I/you can go CONFIDENTLY to God with your request b/c you can trust that His way is the best way. Took me three/four days to figure that out (lil slow) but I know that He will do what is best for my family in this situation and every situation. So today and everyday I can go to confidently with this request.
Please let me keep him. I want him here with us. I trust you to make the best decision for our family.
But let me keep him.
Please pray that we have a good "normal" weekend as a family.
Happy Friday.
I keep going back to one of my favorite scripture. "Be anxious about nothing, everything prayer and petition." It is on repeat mode in my head 24/7. Still tough to do. I think I should tattoo that on the back of my hand. Actually most Type-As should have it tattooed somewhere.
Yesterday was a busy day, dropped off at Shellshouse, worked a couple hours, dentist appointment and then some elders from Southeast came to visit us in the afternoon. After that we picked up the girls and went down to Gilda's club for the first time.
One of the men from SECC said the scripture that has been on my mind since about Sunday. It was just mentioned in the sermon. But is stuck with me, actually one word stuck. CONFIDENTLY
"Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need" Hebrews 4:16
Confidently? CONFIDENTLY?!! Is He serious? How do I go confidently to to throne with your prayers? How could I go to Him with this when we are hanging on Him by a string. He can direct the path and with a blink of an eye it can go the other way. The first week in the hospital I about went horse pleading with God to let me keep Craig. I was begging a parent to be able to keep a dog that I found on the street. I fell asleep most nights saying "PLEEEEEEASE let me keep him." The more I said PLLEEASE the more my throat was strained. I fell asleep most night begging Him to just let ME keep him, PLLLLEEEASSSEE!
I heard this scripture last weekend and was completely baffled. Confidently? How can I go confidently to Him when SOOOOO much is at stake? He is the one that decided whether I will get to continue to be a wife and my kids with have their dad. I thought what do you want Lord, a PowerPoint presentation on the reasons why I need him more than one do? You want a top ten list bullet pointed? You want me in my new business suit (which I haven't worn since I was 5 weeks pregnant with Emily so it wouldn't fit anyway) and approach you confidently with my request? I keep going over the thought, I didn't get it.
Then I thought about my girls. I can't stand whining. I about lose my mind when they start on me. It is like nails on a chalk board. So one morning someone started (I think it was Morgan) and I always stop them before they get the full sentence out and I say stop whining and start again with the request. Then they have to say it without the annoying whining voice. Come confidently with your request.... I don't think God likes whining. Just like any parent you will take any request at any time no matter how it comes and He will listen. But just like any parent He wants me/us to have confidence that He will take care of the situation. I want my girls to know that I will take care of their needs. I make decisions for them that are best for them. It may not be what they want but it is the best decision b/c I am the mom and I know what it best for them (most of the time). Just as He knows what is best for our life (all the time). He is the best parent and He always know what is best whether we agree with Him or not. So I/you can go CONFIDENTLY to God with your request b/c you can trust that His way is the best way. Took me three/four days to figure that out (lil slow) but I know that He will do what is best for my family in this situation and every situation. So today and everyday I can go to confidently with this request.
Please let me keep him. I want him here with us. I trust you to make the best decision for our family.
But let me keep him.
Please pray that we have a good "normal" weekend as a family.
Happy Friday.
Wednesday, November 3, 2010
New Week
Sorry, you get Craig tonight. I'm happy to say I turned a leaf today and actually feel like posting on here. I got to act like a normal person today. It started with missing the alarm this morning a little, or too many deservedly snoozes this morning by our normal blogger. We both saw 7:55 am and I jumped up (rolled off the bed) and said I can get the kids ready while you get yourself ready. I only share this because this was a milestone for me not waking up feeling like absolute fill in the blank. I've been wanting to get to that point in a big way for a certain reason but I'll come back to how much my wife means to me near the end of this. We got the girls out of the house quickly and on time to school. I then got to rest and catch up on all of the political victories of the previous day. The highlight of the afternoon is Scott and his little buddy Hayden and I got to do what might wife calls a play date. We went to Qdoba for lunch and I crushed about a 1/3 of a naked burrito, which I was proud of; you get leftovers too for other meals. I've got my taste back up and running officially but its hard to eat a lot. After that we went back to Scott's house (after riding in the Odyssey) and hung out. I found the wii as my friend because it's perfect to keep me moving and not sitting idle but it doesn't take as many brain cells to function appropriately. I went 0-5 in table tennis and got crushed in bowling against Scott. My energy level has been one of my biggest fights. My wii at home isn't working (not powering on) so I've got to figure that out or I may be calling one of my high tech friends here soon to think for me because it's not easy. Anyhow, moving on, I went to Emily's dance class this early evening for the first time and got to see her smile and have a lot of fun, which never gets old. These were my highlights and it was a good positive day. There's still a rock in my abdomen which has no problem reminding me often throughout the day causing physical pain. This is why I got to say I got to act normal today even though I know I'm not normal. I struggle with envy and jealousy when I'm out and about watching people do what normal people do. I've been to Qdoba at least 1,000 times and I remember how it was just lunch during the workday, I really miss that. I go to dance class and see the main worry from most folks is what's for dinner. I did get to see our dear friend ViviAnne though and I pray to God the little 5 year old never has to see another chemo treatment again because it sucks. I wanted to focus on the positives for this post but its hard to leave out how difficult this past week has been. It's been by far the most trying thing I've done and it's knee buckling. I was kind of hoping and in someways expecting the treatment to knock me down a few notches but unfortunately it gave me a knock down blow. It unfortunately made me so sick I had to question myself as whether I can do this. The biggest thing that has me scared is that I feel like it's whittled me down to skin and bones. Being young and energetic to fight this is one thing but it's hard when your stamina has been thrown out the door. Right now I'm fighting getting back on my 2 feet so I can withstand the next fight a week from today. This treatment, which we/I chose was a more toxic one but I have to have faith (which I've got). The treatment is every 2 weeks and we hope to have a better gameplan in place as far as handling meds at home. It did end up that one of my main naustious meds was kind of inadvertently a lower dosage than what I should of been using. I am going to enjoy this week as much as I can to get my head and body ready for round 2 next Wednesday. The great news is my faith has not stumbled and I don't have to do this alone. "Footprints" comes to mind in explaining my journey; sometimes I just have to be carried and that's fine. I'm getting long winded now but I have a little catching up to do with you. Our family has received so much love and support that I can't explain how much it means. We hang by a thread some days and it's that love and support that keeps us above water. I know I can do this so I'm going to fight even though stats aren't in my favor, I have hope and faith in my favor. My 3 little girls CONSTANTLY remind of why I'm fighting this. They are so perfect in my eyes and they deserve their dad for a long time. Lastly, I debate in my mind every day who this cancer effects more, me or my wife? I lean heavily towards her. She's the one wearing 20 hats per day taking care of 3 little ones including a 4 month old, taking care of me, taking care of the house, taking care of her work, taking care of keeping everyone updated what is going on, etc. Let's see I forgot something, o yeah, she has to take care of herself. The worst case outcome of this cancer will wrestle with your soul more than anything in the world. So when you pray, please help carry her through this. She has been everything in the world to me for this treatment and more. She deserves God's grace more than anyone I know. The taking care of herself part is often the last thing she gives time if any time is left over. I thank God for her every day and have never been more certain about anything more.
Tuesday, November 2, 2010
slowly but surely (11/2)
Craig is feeling pretty good. Still a little nausea at times and tired but he is able to do some things around the house. etc. Not much to report here. Tomorrow will be a week since chemo-day and they said a week on a week off. It is hard to tell if the side effects are still lagging are from the cancer itself, the chemo or the medicine that are suppose to help the nausea. Everything seems to have a side effect. He is to the point where it is hard to weigh the options of being a little nausea vs. a little loopy from the nausea meds. I still struggle with when to push and when to keep my mouth shut. When I say something I regret or push too hard then I tell him I am saying this for his own good. He always says he knows my intentions are good.
The girls went to school today and yesterday and Hannah stayed home with us. I am working a bit since I work from home. I love my job and it is great to do something that doesn't involve cancer. I hope that Craig gets to the point in his treatment that he will have time and energy for something else. I think it would be good for him to think about something else for a change. He started reading Lance Armstrong's book but he says it makes him more nausea to concentrate on one thing. It would be good to get back to that or another book that will help him get back up for the next treatment.
I signed up for cancerwise on the MD Anderson website. It is a cancer newsletter with a TON of information in it. I found this pod cast on it about pancreatic cancer. http://www3.mdanderson.org/streams/AudioPlayer.cfm?xml=communications%2Fconfig%2FCNL-Pancreatic-Cancer--mp3
If you haven't read the stats on this cancer it may shock you but if you listen until the end the doctor tells a story about a patient that wanted to refuse treatment b/c of the stats and the docs at MD Anderson talked him out of it. I am not sure what treatment plan he went on but the spots on the liver are gone and his CT scan is clear after 2 years! This of course not typical but still gives me a lot of hope!! He also mentions the chemo regime that Craig chose, Folfinox (sp?). Anyway, might be worth listening to, it is about 12 minutes long.
Can you believe it is November already? I went to say where did my October go? But it was eaten up by cancer. Stupid cancer, I really like October too.
Craig just got ice cream out of the freezer and it didn't hurt his fingers so that side effect has gone away. He was especially concerns about that one b/c so many nurses had said you will only make that mistake once. geez.
I also wanted to thank everyone for the cards. Looks like a Hallmark in the living room. We do pick them up quite often and read them again. I am always looking for inspiration scriptures.
Here is my favorite today: Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12
Joyful? hmmmm.... tough one but He wants us to be joyful and I think the more trust you put in Him the easier this it is to be joyful. We still have so much to be thankful for. There is still joy in our house. There is struggle but there is joy. We have three amazing little girls. If you tip Hannah over and squeeze her collar bone she giggles so much she can't catch her breath, so hilarous. Emily is doing art and crafts a lot these days and the stuff that she draws is actually recognizable. :)
There was another scripture I was going to post and now I can't find it. I am sure it is at the bottom of a diaper bag or something... more to come.
Hope everyone is having a good week.
The girls went to school today and yesterday and Hannah stayed home with us. I am working a bit since I work from home. I love my job and it is great to do something that doesn't involve cancer. I hope that Craig gets to the point in his treatment that he will have time and energy for something else. I think it would be good for him to think about something else for a change. He started reading Lance Armstrong's book but he says it makes him more nausea to concentrate on one thing. It would be good to get back to that or another book that will help him get back up for the next treatment.
I signed up for cancerwise on the MD Anderson website. It is a cancer newsletter with a TON of information in it. I found this pod cast on it about pancreatic cancer. http://www3.mdanderson.org/streams/AudioPlayer.cfm?xml=communications%2Fconfig%2FCNL-Pancreatic-Cancer--mp3
If you haven't read the stats on this cancer it may shock you but if you listen until the end the doctor tells a story about a patient that wanted to refuse treatment b/c of the stats and the docs at MD Anderson talked him out of it. I am not sure what treatment plan he went on but the spots on the liver are gone and his CT scan is clear after 2 years! This of course not typical but still gives me a lot of hope!! He also mentions the chemo regime that Craig chose, Folfinox (sp?). Anyway, might be worth listening to, it is about 12 minutes long.
Can you believe it is November already? I went to say where did my October go? But it was eaten up by cancer. Stupid cancer, I really like October too.
Craig just got ice cream out of the freezer and it didn't hurt his fingers so that side effect has gone away. He was especially concerns about that one b/c so many nurses had said you will only make that mistake once. geez.
I also wanted to thank everyone for the cards. Looks like a Hallmark in the living room. We do pick them up quite often and read them again. I am always looking for inspiration scriptures.
Here is my favorite today: Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12
Joyful? hmmmm.... tough one but He wants us to be joyful and I think the more trust you put in Him the easier this it is to be joyful. We still have so much to be thankful for. There is still joy in our house. There is struggle but there is joy. We have three amazing little girls. If you tip Hannah over and squeeze her collar bone she giggles so much she can't catch her breath, so hilarous. Emily is doing art and crafts a lot these days and the stuff that she draws is actually recognizable. :)
There was another scripture I was going to post and now I can't find it. I am sure it is at the bottom of a diaper bag or something... more to come.
Hope everyone is having a good week.
Monday, November 1, 2010
Halloween
He walked to a couple houses trick or treating with me and the girls then headed back home. The girls had a blast. Emmy had an Ariel wig and we put some make-up on and she was just so pleased. Morgan went around stinging people in the house, funny funny. Could they be any different in personalities?!
Pictures when we get the software on the laptop.
He is a little frustrated that he is not getting his energy back quicker and is worried about how much weight he has lost. All in good time and with patience.
Emily, Morgan and I read the kemoshark book and it was good but not as good as the other one. It was a little over their heads with what the kemoshark was doing. It went into cancer cells and good cells etc. It was also made to explain breast cancer so the patient was a mom. Some of the side effects weren't the same so it was just okay. After we read that we looked through our kid bibles for stories of Jesus healing people. I wasn't going to let kemoshark take the credit for this healing!! They had a few more questions but nothing out of the ordinary. Morgan wanted to read the kemoshark again but it was mainly for the shark part of it not for the learning about chemo.
Hopefully this week is uneventful and he continues in the right directions.
more to come...
Saturday, October 30, 2010
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!
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!
Friday, October 29, 2010
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.
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.
Thursday, October 28, 2010
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.
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.
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.
Wednesday, October 27, 2010
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.
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...
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...
Tuesday, October 26, 2010
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.
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.
Monday, October 25, 2010
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.
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.
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