It has been a couple of weeks since I last decided to write on "The Blog". It has been sort of stretching for me over the last several weeks. And I'm not thinking this is a bad thing. Well at least right now I'm not thinking it is a bad thing ;-)
I will hopefully be taking my Comprehensive Exam in the next couple of weeks. I'm hoping by December 14th to officially have my MSN. I'm of course sick of studying, but oh well, got to just get it done. It is terrible, I downloaded my review CD on my I-Phone, not the smartest thing I have ever done. I keep getting distracted by my songs, which I switch to while I'm trying to figure out what I listened to last. I can figure out all kinds of ways not to study.
We went to Seattle for Thanksgiving to see my bestest buddy and her sweet family. It was quite an adventure with 5 children and flying. It was their first time flying! Serious adventure! It went pretty slick though. Lil' Jeremie was a bit freaked out at first about the whole security thing, getting on the plane and taking off. But ended up doing quite well. Seattle was beautiful. The ocean was quite mind opening for me. The whole trip sort of changed my whole perspective on my life.
I had several epiphanies...which I'm not quite sure I'm ready to go into here. But there will come a time ;-)
I have definitely felt Jeremie close to me. And I'm feeling more confident in myself, and my ability to be myself again. I'm finally feeling like I'm moving in some sort of direction. I'm not so paranoid anymore that it is even the wrong direction. The staying still, the not progressing, the not moving forward or not making mistakes is not what my life is about.
The last several weeks have been mind and body changing for me. I have laughed so hard I have cried. I have felt excitement and had loads of fun. It feels good to have those fun emotions again. I'm not going to say it has been easy by any means. At times it has been so anxiety producing I have difficulty in controlling the shaking my body seems to do when I'm scared out of my mind. BUT I'm learning to embrace this!!! I haven't regretted it! Not a single time! So I'm stretching and growing.
I can say that I'm happy. And it doesn't break my heart to feel that way. I think about this last year, and I don't know how we all did it. But we did, and we are all better for it. We are so strong, and love each other so much, and don't want to take a single day for granted. I love the life that Jeremie and I worked so hard to build, and this last week I was reminded why we worked so hard for it. I'm so grateful, so so so grateful for this sweet gift he left me.
Well that is sort of the gist of our lives at the moment. I'm actually okay. Kids are okay. We are okay. Does that mean we don't have our challenges? Duh...of course not! But life is short, move on. Breathe, soak in the tub and buy new sweat pants! Key to happiness ;-)
Lots of Love...
Cori
Saturday, December 3, 2011
Friday, November 18, 2011
11-18-11
I must be needing to study. The blog seems more interesting right now. Actually everything seems more interesting right now. Something is wrong with this picture. A) I'm writing on the blog on Friday night and B) I'm studying on Friday night. These are not my greatest days...eck. This is supposed to be my date night...grrrr! Where is my date? He better be doing something really cool right now, cause I'm getting really annoyed at having to find other things to do with my time ;-) Yeah, I miss him. Duh, huh?
So do you think there is anything wrong with wanting to duct tape your children? I'm debating on buying Costco size bulk duct tape package's. Again...miss the other parent around. He used to do the whole student/parent meeting nightmare. I love doing it...nothing makes me happier (insert heavy sarcasm). Mix with that the challenges of having an 18 year old that is driving me NUTS!!!
I'm fighting with every fiber in my being to be nice and polite to the sweet little children that share our home. But I'm thinking of asking them to call me something different than Mom. I miss when they were little. I could bath them, feed them, love them and easily entertain them. Now I feel like I haven't left work when I come home. Cause it just continues ;-)
I'm finding myself, doing anything and everything different that I can. Doing things that are quite stretching and growing for myself. I find that I become quite proud of myself, and exhausted because I have sent my anxiety through the roof. But I have learned that life is short (get out of town...right?).
Well my kids are little monsters, nothing has changed on that front. I'm still not on the behavioral health unit (amazing I know!) and I'm hopefully going to be taking my test super soon. So I will get done with whining and on with studying...but thanks for letting me take the break :-)
Love to all...
Cori
So do you think there is anything wrong with wanting to duct tape your children? I'm debating on buying Costco size bulk duct tape package's. Again...miss the other parent around. He used to do the whole student/parent meeting nightmare. I love doing it...nothing makes me happier (insert heavy sarcasm). Mix with that the challenges of having an 18 year old that is driving me NUTS!!!
I'm fighting with every fiber in my being to be nice and polite to the sweet little children that share our home. But I'm thinking of asking them to call me something different than Mom. I miss when they were little. I could bath them, feed them, love them and easily entertain them. Now I feel like I haven't left work when I come home. Cause it just continues ;-)
I'm finding myself, doing anything and everything different that I can. Doing things that are quite stretching and growing for myself. I find that I become quite proud of myself, and exhausted because I have sent my anxiety through the roof. But I have learned that life is short (get out of town...right?).
Well my kids are little monsters, nothing has changed on that front. I'm still not on the behavioral health unit (amazing I know!) and I'm hopefully going to be taking my test super soon. So I will get done with whining and on with studying...but thanks for letting me take the break :-)
Love to all...
Cori
Wednesday, November 9, 2011
11-9-11
Fair warning...I'm super whiny.
My brain feels like mush. I used to know how to think. And I used to be really clear in the direction I wanted to go in my life. I used to be really confident and know exactly who I am and what I wanted to improve on.
Cori, or who was formerly known as Cori ran away. I'm not quite sure where she went or if she is ever going to be back. I hope wherever she is, she is enjoying herself. Because who is left behind is seriously freaked out, and really doesn't want to do this anymore.
The more time that goes by without Jeremie, the more difficult it seems to be getting. I think it was easier in the beginning. Odd huh? My best friend, the other side of my brain, the tender, sweet, funny half of me died. I'm left with a shell, and don't know how to fill it anymore. I used to think that I understood what existence was for. I used to think that I could get through all of these challenges that life threw at me. That with faith, hope and love all things would be alright. Do I still have those things? Of course. But they feel different. I feel different. It certainly isn't pleasant.
Grief and pain are so individual. I'm blessed to work with amazing people everyday, who I attempt to throw at them what is floating around in my brain, and they come up with amazing ideas and thoughts that might help me better deal with my day to day life. For moments these are helpful. Frequently, however I am left still empty. Alone in my head trying to figure out how in the world I am supposed to figure this all out.
The soul-crushing pain that has decided to make an appearance lately is quite a surprise. Jeremie used to say his bone pain could be described as an exquisite sort of pain. I understand what he means by that now. I'm taken by surprise when it hits me. The oddest of moments. The oddest of circumstances. My breathe is taken from me daily. I want to hear his perspective, I want to hear him get mad, I want to hear that he loves me and I want him to laugh at his kids.
I have this wall that jumps up in front of me and I slam into it every time I expect to hear his comments or see his face and expression. I am so honored and touched by people that want to help me through this. I just don't know how to go about it. I think I just have to go through it, there is no way around it. There is no way to pretend it doesn't exist. And trying to be patient enough with myself to work through this terrible pain is difficult.
I'm struggling with day to day existence of not having Jeremie by my side to raise a large family and maintain our home, cars and life. Even though he was sick the last year, I could call him, or run something into him, or talk to him about what I was attempting to fix or do. Just having him laugh at me because I was swearing at the toilet, made it all okay. I know I am surrounded by people that want to help me. But I just want to be able to do it myself. I sound like a 4 year old! Trying to figure out how to do this on my own is a process. I know it is painful to look at or be around. Be patient with me. I promise I will ask for help if I need it. At some point I have to learn to do this...alone. I know, I know...I'm not alone. But I am.
It is funny I was asking a friend how they did the whole single-parent thing. I laughed because it struck a cord with me. I'm hard-wired for certain things. Like laundry, cleaning, making my kids brush their teeth, herding them etc. But I'm not hard-wired for other things, such as school projects or Halloween, or jokes. Trying to put a package together in myself to make-up for those other things is a real struggle, while also mixing in Who is Cori...where did she go...is she going to be different forever?
I decided to play with Jeremie's Ipod yesterday. This song popped up first...ugh...just pain, and a perfect description...Youtube had the video...of course I just cry...http://youtu.be/5anLPw0Efmo
I just miss my friend. He knew me like no other. Inside and out. I just ache and feel a bit broken. But again, duct tape is an alternative.
Love you all...
Cori
My brain feels like mush. I used to know how to think. And I used to be really clear in the direction I wanted to go in my life. I used to be really confident and know exactly who I am and what I wanted to improve on.
Cori, or who was formerly known as Cori ran away. I'm not quite sure where she went or if she is ever going to be back. I hope wherever she is, she is enjoying herself. Because who is left behind is seriously freaked out, and really doesn't want to do this anymore.
The more time that goes by without Jeremie, the more difficult it seems to be getting. I think it was easier in the beginning. Odd huh? My best friend, the other side of my brain, the tender, sweet, funny half of me died. I'm left with a shell, and don't know how to fill it anymore. I used to think that I understood what existence was for. I used to think that I could get through all of these challenges that life threw at me. That with faith, hope and love all things would be alright. Do I still have those things? Of course. But they feel different. I feel different. It certainly isn't pleasant.
Grief and pain are so individual. I'm blessed to work with amazing people everyday, who I attempt to throw at them what is floating around in my brain, and they come up with amazing ideas and thoughts that might help me better deal with my day to day life. For moments these are helpful. Frequently, however I am left still empty. Alone in my head trying to figure out how in the world I am supposed to figure this all out.
The soul-crushing pain that has decided to make an appearance lately is quite a surprise. Jeremie used to say his bone pain could be described as an exquisite sort of pain. I understand what he means by that now. I'm taken by surprise when it hits me. The oddest of moments. The oddest of circumstances. My breathe is taken from me daily. I want to hear his perspective, I want to hear him get mad, I want to hear that he loves me and I want him to laugh at his kids.
I have this wall that jumps up in front of me and I slam into it every time I expect to hear his comments or see his face and expression. I am so honored and touched by people that want to help me through this. I just don't know how to go about it. I think I just have to go through it, there is no way around it. There is no way to pretend it doesn't exist. And trying to be patient enough with myself to work through this terrible pain is difficult.
I'm struggling with day to day existence of not having Jeremie by my side to raise a large family and maintain our home, cars and life. Even though he was sick the last year, I could call him, or run something into him, or talk to him about what I was attempting to fix or do. Just having him laugh at me because I was swearing at the toilet, made it all okay. I know I am surrounded by people that want to help me. But I just want to be able to do it myself. I sound like a 4 year old! Trying to figure out how to do this on my own is a process. I know it is painful to look at or be around. Be patient with me. I promise I will ask for help if I need it. At some point I have to learn to do this...alone. I know, I know...I'm not alone. But I am.
It is funny I was asking a friend how they did the whole single-parent thing. I laughed because it struck a cord with me. I'm hard-wired for certain things. Like laundry, cleaning, making my kids brush their teeth, herding them etc. But I'm not hard-wired for other things, such as school projects or Halloween, or jokes. Trying to put a package together in myself to make-up for those other things is a real struggle, while also mixing in Who is Cori...where did she go...is she going to be different forever?
I decided to play with Jeremie's Ipod yesterday. This song popped up first...ugh...just pain, and a perfect description...Youtube had the video...of course I just cry...http://youtu.be/5anLPw0Efmo
I just miss my friend. He knew me like no other. Inside and out. I just ache and feel a bit broken. But again, duct tape is an alternative.
Love you all...
Cori
Monday, October 31, 2011
10-31-11
I've been running a little crazy the last several weeks. I haven't had time to blog. But I'm at work, everyone has left, and I have a moment of peace.
A year ago Jeremie and I had the best Halloween! It was our first Holiday together in our house. He dressed up as a Rock-Star and I was a sloppy pink bunny. It was so much fun! He took the kids trick-or-treating and I stayed at home and passed out the candy. The kids had so much fun with him. He felt good, he looked good and we where getting ready for the next day for Salt Lake. Jeremie would be receiving his third consolidation. Sadly November 1st, is when we found out he had two chloromas or leukemia tumors on his spine. Our whole world changed yet again. So this time of year is turning very difficult for me.
I have struggled over the last several weeks with the logistics of being a single parent of five children. It is awful. I wish Jeremie was here, even if he just could hear me whine. I'm afraid my poor co-workers just can't hear about it anymore. Poor things, they try so hard to be here and there and accommodating to me. And it is the epitome of my worst fear. To be the pathetic, widowed, single-parent. I'm just not digging that whole role right now. I have worked so hard in my life to be independent, and self-sufficient. This is really putting me out!
I have a lot of things I'm debating on changing or making my life simpler right now. I have been thinking about selling the motorcycle and the Yukon to get a more efficient and cheaper car to run. I just hate making these types of decisions by myself. I have no feedback. I have no other perspective of making life-changing decisions. I'm good at the whole priority thing, and which comes first. But trying to put some sort of order and resemblance of life and role back into my being is proving to be the most difficult.
I haven't been able to study this past week for my test. I've been too overwhelmed with my children and their individual crisis's and issues. I'm again really missing the man that took such good care of me. He just babied me and loved me. I can't tell you how much I miss being me, and I miss him close.
Well here is for praying for a better week. Today wasn't the greatest day, but tomorrow the sun will shine again.
I miss you all so much...I love my wonderful friends and family.
Love to all!
Cori
A year ago Jeremie and I had the best Halloween! It was our first Holiday together in our house. He dressed up as a Rock-Star and I was a sloppy pink bunny. It was so much fun! He took the kids trick-or-treating and I stayed at home and passed out the candy. The kids had so much fun with him. He felt good, he looked good and we where getting ready for the next day for Salt Lake. Jeremie would be receiving his third consolidation. Sadly November 1st, is when we found out he had two chloromas or leukemia tumors on his spine. Our whole world changed yet again. So this time of year is turning very difficult for me.
I have struggled over the last several weeks with the logistics of being a single parent of five children. It is awful. I wish Jeremie was here, even if he just could hear me whine. I'm afraid my poor co-workers just can't hear about it anymore. Poor things, they try so hard to be here and there and accommodating to me. And it is the epitome of my worst fear. To be the pathetic, widowed, single-parent. I'm just not digging that whole role right now. I have worked so hard in my life to be independent, and self-sufficient. This is really putting me out!
I have a lot of things I'm debating on changing or making my life simpler right now. I have been thinking about selling the motorcycle and the Yukon to get a more efficient and cheaper car to run. I just hate making these types of decisions by myself. I have no feedback. I have no other perspective of making life-changing decisions. I'm good at the whole priority thing, and which comes first. But trying to put some sort of order and resemblance of life and role back into my being is proving to be the most difficult.
I haven't been able to study this past week for my test. I've been too overwhelmed with my children and their individual crisis's and issues. I'm again really missing the man that took such good care of me. He just babied me and loved me. I can't tell you how much I miss being me, and I miss him close.
Well here is for praying for a better week. Today wasn't the greatest day, but tomorrow the sun will shine again.
I miss you all so much...I love my wonderful friends and family.
Love to all!
Cori
Monday, October 17, 2011
10-17-2011
Despite last week being particularly challenging. We had a wonderful weekend. Sweet Jeremie Jr. turned 11! Yay! He decided he wanted to go to Salt Lake and have Grandma give him a birthday (THANK YOU GRANDMA). We had another great surprise when we went up. Carla (my Aunt & Uncle), Chris and their boys! And sweet Travis, his wife Stephanie and their DARLING baby boy Gage. Just what my soul needed! We had a lot of fun hanging out with them. We went to the zoo on Saturday for Jeremie's birthday. Haven't been there forever! It really was a lot of fun.
It's sort of fun to have a blog sometimes. Instead of studying for my test I can write dumb things on and on in the middle of the world wide web ;-) ha ha ha. It feels weird to be finished with school. I mean I know I'm not until I finish my comprehensive exam. But I don't have any more papers, no more classes, nothing. CRAZY! I have been looking at my next degree...I have to apply January 15th for my post-masters. But if accepted I won't have to start until next fall. So a nice break. OOh and then I found out the University of Utah has a distance PhD program ;-) super interested in that. Half thinking if I don't get into the post-masters for psych I will apply for the PhD program in Genetics. That fascinates me. Especially in terms of cancer and genetics. So many places to go with that.
Funny huh? I'm incredibly disgusted and frustrated with cancer and absolutely fascinated by it in the next breath, that I want to go into research? Yeah...maybe a good stay in B-Med would be beneficial. Speaking of b-med. I had one of my clients last week tell me that I'm a good psych nurse because I "understand" what it is like. Hmmm...how do I take that? I didn't have the guts to ask what was meant by that. I can only assume ;-)
This week I'm attempting just to focus on each day. I'm not going to dive into anything too major emotionally this week. I wasn't ready last week when I attempted. There is never a moment my sweet Jeremie is not on my mind. Sometimes it is hard not to sound depressing. Breathe in and breathe out. That is what I'm practicing this week. I don't know, its a theory anyway. I'll let you know next week if it works.
Love you all...
Cori
It's sort of fun to have a blog sometimes. Instead of studying for my test I can write dumb things on and on in the middle of the world wide web ;-) ha ha ha. It feels weird to be finished with school. I mean I know I'm not until I finish my comprehensive exam. But I don't have any more papers, no more classes, nothing. CRAZY! I have been looking at my next degree...I have to apply January 15th for my post-masters. But if accepted I won't have to start until next fall. So a nice break. OOh and then I found out the University of Utah has a distance PhD program ;-) super interested in that. Half thinking if I don't get into the post-masters for psych I will apply for the PhD program in Genetics. That fascinates me. Especially in terms of cancer and genetics. So many places to go with that.
Funny huh? I'm incredibly disgusted and frustrated with cancer and absolutely fascinated by it in the next breath, that I want to go into research? Yeah...maybe a good stay in B-Med would be beneficial. Speaking of b-med. I had one of my clients last week tell me that I'm a good psych nurse because I "understand" what it is like. Hmmm...how do I take that? I didn't have the guts to ask what was meant by that. I can only assume ;-)
This week I'm attempting just to focus on each day. I'm not going to dive into anything too major emotionally this week. I wasn't ready last week when I attempted. There is never a moment my sweet Jeremie is not on my mind. Sometimes it is hard not to sound depressing. Breathe in and breathe out. That is what I'm practicing this week. I don't know, its a theory anyway. I'll let you know next week if it works.
Love you all...
Cori
Tuesday, October 11, 2011
10-11-11
Ka Ka...Leukemia sucks. What a soul crushing, devastating disease. I'm such a dummy, I just open my heart up to tragedy and see if I can cause myself some more pain. I have read a couple of other blogs on AML. Does anyone survive? Is everyone just tortured for a while with chemo and radiation...throw in a transplant for some extra torture...and then die? Good Heavens.
I made another really dumb mistake and decided to watch Jeremie's tribute video by his brother Robin. Yeah I pretty much spent last night bawling my eyes out. I'm not sure what I'm searching for, I'm not sure what I'm looking for. What I'm grasping at?
How do you make sense out of all of this? How do you go forward? What does that really mean? It's so odd...I think in the back of my head that something magical would happen, or I would wake up and this would be a nightmare. Just pretend...right? I want to understand it all. But then I don't, cause I can't make sense of it in my brain.
Sorry for the negative post...this is the reality of my life. The up and down of everyday. I'm always grateful for our gifts and blessings. I'm also so incredibly sad. I wanted to read those blogs and see miracles that people live after leukemia. That for some, all of the sacrifices and pain was worth it. I just didn't find those stories today.
Hmmm...praying for those sweet families who have lost those sweet loved ones, praying for those families battling this disease. Praying I can get a grip.
Here is the link for Robin's incredible video for Jeremie. I'm so blessed to have been loved by this man. To have been accepted 100% for everything I am, to have been told that I'm beautiful and sweet and smart everyday...especially when I was feeling ugly, mean and dumb. That is all I see in this video, how much he loved us. http://youtu.be/tkgulAZRPE0
Breath in and breath out...all I have to do right?
I made another really dumb mistake and decided to watch Jeremie's tribute video by his brother Robin. Yeah I pretty much spent last night bawling my eyes out. I'm not sure what I'm searching for, I'm not sure what I'm looking for. What I'm grasping at?
How do you make sense out of all of this? How do you go forward? What does that really mean? It's so odd...I think in the back of my head that something magical would happen, or I would wake up and this would be a nightmare. Just pretend...right? I want to understand it all. But then I don't, cause I can't make sense of it in my brain.
Sorry for the negative post...this is the reality of my life. The up and down of everyday. I'm always grateful for our gifts and blessings. I'm also so incredibly sad. I wanted to read those blogs and see miracles that people live after leukemia. That for some, all of the sacrifices and pain was worth it. I just didn't find those stories today.
Hmmm...praying for those sweet families who have lost those sweet loved ones, praying for those families battling this disease. Praying I can get a grip.
Here is the link for Robin's incredible video for Jeremie. I'm so blessed to have been loved by this man. To have been accepted 100% for everything I am, to have been told that I'm beautiful and sweet and smart everyday...especially when I was feeling ugly, mean and dumb. That is all I see in this video, how much he loved us. http://youtu.be/tkgulAZRPE0
Breath in and breath out...all I have to do right?
Sunday, October 9, 2011
10-09-2011
Well I made it to work 3 1/2 days last week! Woo Hoo! Kicked my ever lovin' behind, but I think it was good to get back to normal life. I missed work too! Plus I'm obnoxious when I'm sitting at home. All I see is carpets I need to clean, blinds that need to be dusted and bathrooms that need to be washed. At work I walk, sit, chart and do some injections. A little bit easier on me physically than home ;-)
Then I thought if I can go to work, then I can go to church. So after 15 months of living in my ward we went to church. All 3 meetings! Yeah...I'm pretty impressed with us too :-) It was nice, and very uplifting. We all felt good after church today. I think we have been missing that in our lives. Of course I love the first Sunday of the month. Babies being blessed! My favorite! It is such a sweet reminder of what gifts there are in this life. Another really cool thing...my kids are all older. I look around my ward and smile and giggle at the cute little toddlers and babies. It sort of relaxing for me now. Kids are quiet, listening and taking in sacrament, instead of figuring out a way to make me insane.
I felt Jeremie so close to me today. I have been struggling a bit this week. Just missing him like crazy. I miss him making me laugh. And boy he was gorgeous. I miss his green eyes, his smile and his laughter. I miss how he could distract me more than anything or anybody in this world. He occupies my thoughts all the time. I was having a hard Thursday last week. All I wanted to do was call him and tell him it was hard, I hurt, I was stressed and I needed to hear that he wished he could fix it, and hearing him say that....would fix it. I woke up Saturday morning, and I swear he was right next to me. Before I opened my eyes I just felt so happy, and was thinking how I was going to wake him up and we were going to have an adventure today. I must have been in a dream. I turned towards his side...no Jeremie...eck...awful emptiness.
Being with Jeremie the night he passed away was such a gift. It reminds me that he is close by, not far, and what I believe is true. We are eternal companions. When I think about how everything unfolded, it was a gift. To have him in my arms, telling him how much I loved him, how much his kids loved him and that he could go home now. What a truly sacred and intimate experience. The joy that was surrounding us both as he was passing from this world into another is difficult to describe. I didn't understand that is what I was feeling until I called my children and his parents to tell them he passed away. Their grief, sadness and loss hit me hard, from the opposite feeling I had been engulfed in. To share in the emotion/feeling that was there is what holds me together today. I do not know the "plan". I have whispers in my ear sometimes, that he is always here now, and can be with us in a way he wasn't able to be before. It's funny when I am struggling most, is when these little whispers come to me. I was feeling like it isn't fair to have the love of my life taken from me and from my kids, and a whisper came to me that I'm not alone. This happens everyday. I'm not being picked on. It just is. Sounds weird, but it comforted me. No wonder I like to work in psych huh?
Well enough of my ramblings...We are doing good. I'm healing fast and feeling good. I again, am so thankful for the sweet things in our lives. We are truly blessed, even in our sadness. Sounds so corny but it's true.
Love you all...
Cori
Then I thought if I can go to work, then I can go to church. So after 15 months of living in my ward we went to church. All 3 meetings! Yeah...I'm pretty impressed with us too :-) It was nice, and very uplifting. We all felt good after church today. I think we have been missing that in our lives. Of course I love the first Sunday of the month. Babies being blessed! My favorite! It is such a sweet reminder of what gifts there are in this life. Another really cool thing...my kids are all older. I look around my ward and smile and giggle at the cute little toddlers and babies. It sort of relaxing for me now. Kids are quiet, listening and taking in sacrament, instead of figuring out a way to make me insane.
I felt Jeremie so close to me today. I have been struggling a bit this week. Just missing him like crazy. I miss him making me laugh. And boy he was gorgeous. I miss his green eyes, his smile and his laughter. I miss how he could distract me more than anything or anybody in this world. He occupies my thoughts all the time. I was having a hard Thursday last week. All I wanted to do was call him and tell him it was hard, I hurt, I was stressed and I needed to hear that he wished he could fix it, and hearing him say that....would fix it. I woke up Saturday morning, and I swear he was right next to me. Before I opened my eyes I just felt so happy, and was thinking how I was going to wake him up and we were going to have an adventure today. I must have been in a dream. I turned towards his side...no Jeremie...eck...awful emptiness.
Being with Jeremie the night he passed away was such a gift. It reminds me that he is close by, not far, and what I believe is true. We are eternal companions. When I think about how everything unfolded, it was a gift. To have him in my arms, telling him how much I loved him, how much his kids loved him and that he could go home now. What a truly sacred and intimate experience. The joy that was surrounding us both as he was passing from this world into another is difficult to describe. I didn't understand that is what I was feeling until I called my children and his parents to tell them he passed away. Their grief, sadness and loss hit me hard, from the opposite feeling I had been engulfed in. To share in the emotion/feeling that was there is what holds me together today. I do not know the "plan". I have whispers in my ear sometimes, that he is always here now, and can be with us in a way he wasn't able to be before. It's funny when I am struggling most, is when these little whispers come to me. I was feeling like it isn't fair to have the love of my life taken from me and from my kids, and a whisper came to me that I'm not alone. This happens everyday. I'm not being picked on. It just is. Sounds weird, but it comforted me. No wonder I like to work in psych huh?
Well enough of my ramblings...We are doing good. I'm healing fast and feeling good. I again, am so thankful for the sweet things in our lives. We are truly blessed, even in our sadness. Sounds so corny but it's true.
Love you all...
Cori
Saturday, October 1, 2011
10-01-2011
Man...what a rough week! Seriously LOVE my mother. Don't know what I would have done without her. My last "surgery" was in 1997 when I had an ectopic pregnancy. That was crazy painful. BUT this was NUTS! I'm never, ever having surgery again. Yuck! It went well though. I'm still just way whiny about it.
I think about everything my sweet Jeremie went through with all of his various medical procedures. It definitely gave me a different perspective, and helped me to suck it up a bit ;-) I know in the end I will feel better, have some more energy and less inconvenience. Holy Cow that was hard though.
Well I finished clinical last week! Woo Hoo! In fact technically, I should be working on finishing my paper work for getting ready to take my last exam. But I decided it was a lot more fun to write on my blog. Plus I'm sick of writing erythema and exudate. Blah.
I miss my sweet Jeremie, especially right now. Even though me and sick were never high on his "like" list. I just wanted him to rub my back and tell me he felt sorry for me. He was really good at that! I am glad I don't have to hear "you NEED to get a hysterectomy!" from him. Poor guy, I wait until he is gone to do it. But I couldn't imagine doing this at any other time. And I know he is with me.
There are struggles that each of us are going through. I know I'm not alone in mine. This time in clinical really was therapeutic. This is a difficult time we all live in. So many people without jobs, health care and struggling with health problems. It was perhaps the most healing thing that I could have done. Of course I can say that cause I'm done. I think last week I was saying I'm nuts. But this week, I'm seeing how it is helping me move a little forward.
I continue to be so thankful for my neighbors, friends and family that continue to love and pray for us. We feel it, and thank you for staying with us.
Love you all...
Cori
I think about everything my sweet Jeremie went through with all of his various medical procedures. It definitely gave me a different perspective, and helped me to suck it up a bit ;-) I know in the end I will feel better, have some more energy and less inconvenience. Holy Cow that was hard though.
Well I finished clinical last week! Woo Hoo! In fact technically, I should be working on finishing my paper work for getting ready to take my last exam. But I decided it was a lot more fun to write on my blog. Plus I'm sick of writing erythema and exudate. Blah.
I miss my sweet Jeremie, especially right now. Even though me and sick were never high on his "like" list. I just wanted him to rub my back and tell me he felt sorry for me. He was really good at that! I am glad I don't have to hear "you NEED to get a hysterectomy!" from him. Poor guy, I wait until he is gone to do it. But I couldn't imagine doing this at any other time. And I know he is with me.
There are struggles that each of us are going through. I know I'm not alone in mine. This time in clinical really was therapeutic. This is a difficult time we all live in. So many people without jobs, health care and struggling with health problems. It was perhaps the most healing thing that I could have done. Of course I can say that cause I'm done. I think last week I was saying I'm nuts. But this week, I'm seeing how it is helping me move a little forward.
I continue to be so thankful for my neighbors, friends and family that continue to love and pray for us. We feel it, and thank you for staying with us.
Love you all...
Cori
Sunday, September 18, 2011
09-18-2011
I'm trying to find anything to do but my homework! One last paper!!!! Of course it is my big paper. Next week is my last week of clinical!!!! WOO HOO!!! Not that school ends there. I then get to take my comprehensive exam and then my boards. So I'm still a bit away from being "finished". But the hard stuff is out of the way.
Next Monday I will be getting rid of my girlie parts or I'm having a hysterectomy. Something I have been contemplating for years. Now I'm just done. So part two of taking care of me will be happening Monday. Thank goodness for Moms, mine will be coming to help take care of the kids while I recover.
Our poor PePe (Jeremie's dad) has been so sick. He had a surgical procedure performed last Tuesday and Wednesday was admitted to ICU for aspiration pneumonia. He was released Friday. It hurts me to see him so sick. Jeremie's was/is a lot like his dad. You can't sit on either one of them! They are just workers that Saville Family!
For Jeremie's birthday we went to Oscar's in Springdale (by Zions National Park). It hurt my soul, but was wonderful at the same time. It is a place my best friend and I would go after we would take our exams in nursing school. A reward we would give ourselves. Then I introduced it to Jeremie. So many different adventures we have had at that wonderful restaurant.
Well trying to get through each day. This has been a good week. I think this next week will be as well. I'm so grateful for our friends and family and neighbors. I can't believe how blessed we are. Thank you all for helping me and my kids through this.
Love to all...
Cori
Next Monday I will be getting rid of my girlie parts or I'm having a hysterectomy. Something I have been contemplating for years. Now I'm just done. So part two of taking care of me will be happening Monday. Thank goodness for Moms, mine will be coming to help take care of the kids while I recover.
Our poor PePe (Jeremie's dad) has been so sick. He had a surgical procedure performed last Tuesday and Wednesday was admitted to ICU for aspiration pneumonia. He was released Friday. It hurts me to see him so sick. Jeremie's was/is a lot like his dad. You can't sit on either one of them! They are just workers that Saville Family!
For Jeremie's birthday we went to Oscar's in Springdale (by Zions National Park). It hurt my soul, but was wonderful at the same time. It is a place my best friend and I would go after we would take our exams in nursing school. A reward we would give ourselves. Then I introduced it to Jeremie. So many different adventures we have had at that wonderful restaurant.
Well trying to get through each day. This has been a good week. I think this next week will be as well. I'm so grateful for our friends and family and neighbors. I can't believe how blessed we are. Thank you all for helping me and my kids through this.
Love to all...
Cori
Friday, September 9, 2011
09-09-2011
What an interesting week. Jeremie used to hate when I said "interesting" cause it usual meant something was wrong with him! So..perhaps he is right...something is wrong. I'm trying to figure out so many things. Comprehending my life at the moment is a challenge. Sometimes I wonder where lil' Jer got the autism spectrum disorder ;-) I can be a bit on the analytical side of things.
Well I did something really fun last week...or I should say Jess my darling hair dresser did something fun for me...I have long hair! So much fun. At least I didn't shave it huh? Well I think my mom is happy I didn't shave it. You can usually tell if I'm in crisis as my hair will be very short. Thank goodness for a smart, beautiful and creative friend who does extensions! So my morning now is spent figuring out my stupid hair. Yeah...I'm not really into that stuff. But I have to say it is a welcome distraction ;-)
A very momentous day is coming up...I'm scared, to be honest. September 12th is Jeremie's Birthday. And all I can think about is where I want to whisk him off to, what I want to give him, and how special I want to make the day. My heart just hurts.
Sometimes I feel him so close to me, that I swear I can hear him. Other times, I just ache to hold him. And then sometimes I am so stinking tired I just miss having the extra adult body in the house with me! I miss being able to say "I can't do it anymore...will you?". How do single parents do this? Really...it is crazy! I keep thinking...I HAD FIVE...ON PURPOSE...jeez Louise.
I think...just think mind you...that I am getting the hang of this whole family nurse practitioner thing. The panic is starting to wear off, and I'm starting to be able to think through things a bit. At least I think I can get through the exam, diagnosing and prescriptions. Charting...my next problem. So awesome to be thrown into a student situation. You get to chart on the clinics stupid system, then you get to chart on your school system, then you get to write case studies after all this stupid charting!
I went to work on Wednesday. It was heaven to actually know what in the world I was doing. Felt like a vacation. So excited to get this part of my life over so I can return to some normalcy. Again...what was I thinking? I'm pretty sure though I am going to get my post-masters in psych and focus on children and adolescents. I like psych...cause I'm psycho ;-) hee hee hee!
Jeremie is definitely with me during the more challenging parts of clinical. It is usually when I know what he would be saying if he was a fly on the wall. He would just die seeing some of this stuff. It cracks me up! I sure miss his sense of humor...and sarcasm. I miss him asking me if I wash my hands! Ha Ha Ha....that used to annoy me to no end! Duh...I wash my hands. But he JUST had to ask.
I miss him most when I'm frustrated, excited, bored, happy, sad, depressed, pretty much all the time. It kills me every time I have a break or get to my car to go home and I reach for my cell-phone to call him. So usually I end up talking to myself in the car as if he was sitting right there.
I have to share a dream I had. I was talking to Jeremie asking him if I could come visit him every night. If I could just do that I would be fine. I promise. He told me I couldn't because I wouldn't go back and he wouldn't be able to make me go back. I was so sad. When I woke up I just laughed because I realized he was right. I'm stubborn, I would get there and say too bad, I'm staying! And he wouldn't have the heart to tell me no. I'm trying to hold on to that. I can't go.
I wish I could say it is getting easier, but it just isn't. Am I living without him...obviously, grrrr just selfish and whiny. I sure love you Jeremie. Someday I can't wait to hear about your day, and what you did today and what you created today...I miss that most.
Well...off to write a paper on ethics....blah
Love to all...
Cori
Well I did something really fun last week...or I should say Jess my darling hair dresser did something fun for me...I have long hair! So much fun. At least I didn't shave it huh? Well I think my mom is happy I didn't shave it. You can usually tell if I'm in crisis as my hair will be very short. Thank goodness for a smart, beautiful and creative friend who does extensions! So my morning now is spent figuring out my stupid hair. Yeah...I'm not really into that stuff. But I have to say it is a welcome distraction ;-)
A very momentous day is coming up...I'm scared, to be honest. September 12th is Jeremie's Birthday. And all I can think about is where I want to whisk him off to, what I want to give him, and how special I want to make the day. My heart just hurts.
Sometimes I feel him so close to me, that I swear I can hear him. Other times, I just ache to hold him. And then sometimes I am so stinking tired I just miss having the extra adult body in the house with me! I miss being able to say "I can't do it anymore...will you?". How do single parents do this? Really...it is crazy! I keep thinking...I HAD FIVE...ON PURPOSE...jeez Louise.
I think...just think mind you...that I am getting the hang of this whole family nurse practitioner thing. The panic is starting to wear off, and I'm starting to be able to think through things a bit. At least I think I can get through the exam, diagnosing and prescriptions. Charting...my next problem. So awesome to be thrown into a student situation. You get to chart on the clinics stupid system, then you get to chart on your school system, then you get to write case studies after all this stupid charting!
I went to work on Wednesday. It was heaven to actually know what in the world I was doing. Felt like a vacation. So excited to get this part of my life over so I can return to some normalcy. Again...what was I thinking? I'm pretty sure though I am going to get my post-masters in psych and focus on children and adolescents. I like psych...cause I'm psycho ;-) hee hee hee!
Jeremie is definitely with me during the more challenging parts of clinical. It is usually when I know what he would be saying if he was a fly on the wall. He would just die seeing some of this stuff. It cracks me up! I sure miss his sense of humor...and sarcasm. I miss him asking me if I wash my hands! Ha Ha Ha....that used to annoy me to no end! Duh...I wash my hands. But he JUST had to ask.
I miss him most when I'm frustrated, excited, bored, happy, sad, depressed, pretty much all the time. It kills me every time I have a break or get to my car to go home and I reach for my cell-phone to call him. So usually I end up talking to myself in the car as if he was sitting right there.
I have to share a dream I had. I was talking to Jeremie asking him if I could come visit him every night. If I could just do that I would be fine. I promise. He told me I couldn't because I wouldn't go back and he wouldn't be able to make me go back. I was so sad. When I woke up I just laughed because I realized he was right. I'm stubborn, I would get there and say too bad, I'm staying! And he wouldn't have the heart to tell me no. I'm trying to hold on to that. I can't go.
I wish I could say it is getting easier, but it just isn't. Am I living without him...obviously, grrrr just selfish and whiny. I sure love you Jeremie. Someday I can't wait to hear about your day, and what you did today and what you created today...I miss that most.
Well...off to write a paper on ethics....blah
Love to all...
Cori
Friday, September 2, 2011
09/02/2011
Well each day keeps turning into another day. Weird how the sun keeps coming up each day. I've definitely battled some very difficult days in the last several weeks. Hardest of my life. I miss that darn man so much. I have had to tell myself to pull it together and get a grip. So I'm attempting to fake it until I make it.
Clinical has been well...clinical. Super difficult. Definitely not in my comfort zone. And is that a good thing right now? That is what I keep asking myself? But I really have no choice. I have to get it done. I can say today it has been good this week. I am learning so much, and really find I love the work I am doing. I do like seeing it "all", as opposed to just one thing. It is definitely "family" practice.
I'm struggling coming out of this fog my brain has been in for so long. I have a couple of papers to write. I have been writing various papers for the last 7 years of my life, in APA format. On Monday in the middle of attempting to write my paper I couldn't for the life of me remember how to format my title page?? It took me hours to write a 6 page paper on APRN credentialing! Grrrrr....so frustrating! So I am easily overwhelmed. I can't wait to get back to work, and just work and come home every night, and not have to worry any more about this junk.
Kids are doing ok. I think they are also attempting to get the hang of life. They seem to be adjusting well. We just go through the motions of our life, trying to make sense of it, trying to find our place and understanding of what we are doing. We are all "here" but it's a numb sort of here. All of us trying to sort out our homework, sort out each day, and keep going. Miraculously we do it.
Sometimes I actually think the pain is less. I think that it will be okay, and we will be happy again. Then I get whacked upside the head with overwhelming emptiness. I guess normal. I can only imagine how this hurts Jeremie, it is the only thing that will pull me out of it sometimes. He just hated it when I would say I was depressed or upset. So I imagine the hurt on the poor mans face thinking he can't fix this.
I am such a blessed person. I have healthy kids, a wonderful job, an opportunity to go to school, I live in an amazing neighborhood, surrounded by amazing people, and wonderful friends and family. I know that not everyone is surrounded such as we are. I'm so thankful...I really couldn't do it without you all. I'm so blessed to have the amazing life I have.
Thanks for letting me ramble today. Definitely turning into my own personal diary!
Clinical has been well...clinical. Super difficult. Definitely not in my comfort zone. And is that a good thing right now? That is what I keep asking myself? But I really have no choice. I have to get it done. I can say today it has been good this week. I am learning so much, and really find I love the work I am doing. I do like seeing it "all", as opposed to just one thing. It is definitely "family" practice.
I'm struggling coming out of this fog my brain has been in for so long. I have a couple of papers to write. I have been writing various papers for the last 7 years of my life, in APA format. On Monday in the middle of attempting to write my paper I couldn't for the life of me remember how to format my title page?? It took me hours to write a 6 page paper on APRN credentialing! Grrrrr....so frustrating! So I am easily overwhelmed. I can't wait to get back to work, and just work and come home every night, and not have to worry any more about this junk.
Kids are doing ok. I think they are also attempting to get the hang of life. They seem to be adjusting well. We just go through the motions of our life, trying to make sense of it, trying to find our place and understanding of what we are doing. We are all "here" but it's a numb sort of here. All of us trying to sort out our homework, sort out each day, and keep going. Miraculously we do it.
Sometimes I actually think the pain is less. I think that it will be okay, and we will be happy again. Then I get whacked upside the head with overwhelming emptiness. I guess normal. I can only imagine how this hurts Jeremie, it is the only thing that will pull me out of it sometimes. He just hated it when I would say I was depressed or upset. So I imagine the hurt on the poor mans face thinking he can't fix this.
I am such a blessed person. I have healthy kids, a wonderful job, an opportunity to go to school, I live in an amazing neighborhood, surrounded by amazing people, and wonderful friends and family. I know that not everyone is surrounded such as we are. I'm so thankful...I really couldn't do it without you all. I'm so blessed to have the amazing life I have.
Thanks for letting me ramble today. Definitely turning into my own personal diary!
Saturday, August 20, 2011
08/20/2011
My Jeremie has been gone for 4 weeks. I think I'm just going to plan on every Saturday being my hardest day of the week. Thursday is the day is starts going downhill. That was always the day he would start saying "Tomorrow is Friday!". Then Fridays are even more of a struggle...our favorite day! The beginning of our weekend. All I can think about is when he would come and visit me on Friday at work during lunch. Then I would rush home to get dinner done for the kids and out the door we would go!
My memories lately are of when he wasn't sick. He struggled so much during this last year. That was all my focus. I forgot about that vibrant, energetic, non-stop man. I found these videos on his phone that he had transferred to his new phone. They were all before he was sick. I laughed, and laughed! He was so funny! I will have to figure out how to post them. He is so cute!
I started clinical (again) this last Tuesday. I have the opportunity to be learning alongside a nurse-practitioner that serves basically the under served, or those without insurance, or can't obtain state health insurance etc. It has been amazing. It is a community health clinic. I'm hoping and praying I can keep myself and my mind together that I can get through this in the next month. I hope to be finished with clinical by or around September 19th. Then to have my last comprehensive examination done by October 1st. And I will be officially finished with school. My goal is to have my board exams done by December and to have all licensing etc finished for January 2012. It better be a better year.
I know this is something Jeremie wanted me to finish. I feel him pushing me out of bed, when I just feel that I can't do it. I know he is by my side as I'm starting to panic at what lays a head of me. And I know he is whispering in my ear and to my heart. I dream every night of him holding out his hand and I'm reaching to grab his, and all I'm captured by is his smile, and the calm that I feel when I see his hand.
My kids seem to be doing pretty good. Everyone started school...well except Scarlett. Still working on that one. Hopefully, fingers crossed we can really get that figured out next week. Meanwhile, I don't know what I would have done without her this week. The poor boys bicycles are being fixed, and I don't want them walking in the 107 degree heat for 45 minutes. It probably could take a normal person 20-30 minutes but these are the little boys we are talking about! They find trouble! So riding their bikes cuts that down to 15 minutes out in this yucky heat.
I try to think about Jeremie not being in pain anymore. I think about all the wonderful parts of our lives. And I think about how mad he would make me sometimes ;-) and how much he would make me laugh! I really try to focus on the day. If I move past the day, my heart just hurts and I can't think straight. He is my love, and unfortunately I think this is something that time will not heal. What other choice do I have but to continue living the life that we worked so hard to build.
Well those are my ramblings today...lets see if I can get out of this soul sucking bed...and clean my house!
Love to all....
My memories lately are of when he wasn't sick. He struggled so much during this last year. That was all my focus. I forgot about that vibrant, energetic, non-stop man. I found these videos on his phone that he had transferred to his new phone. They were all before he was sick. I laughed, and laughed! He was so funny! I will have to figure out how to post them. He is so cute!
I started clinical (again) this last Tuesday. I have the opportunity to be learning alongside a nurse-practitioner that serves basically the under served, or those without insurance, or can't obtain state health insurance etc. It has been amazing. It is a community health clinic. I'm hoping and praying I can keep myself and my mind together that I can get through this in the next month. I hope to be finished with clinical by or around September 19th. Then to have my last comprehensive examination done by October 1st. And I will be officially finished with school. My goal is to have my board exams done by December and to have all licensing etc finished for January 2012. It better be a better year.
I know this is something Jeremie wanted me to finish. I feel him pushing me out of bed, when I just feel that I can't do it. I know he is by my side as I'm starting to panic at what lays a head of me. And I know he is whispering in my ear and to my heart. I dream every night of him holding out his hand and I'm reaching to grab his, and all I'm captured by is his smile, and the calm that I feel when I see his hand.
My kids seem to be doing pretty good. Everyone started school...well except Scarlett. Still working on that one. Hopefully, fingers crossed we can really get that figured out next week. Meanwhile, I don't know what I would have done without her this week. The poor boys bicycles are being fixed, and I don't want them walking in the 107 degree heat for 45 minutes. It probably could take a normal person 20-30 minutes but these are the little boys we are talking about! They find trouble! So riding their bikes cuts that down to 15 minutes out in this yucky heat.
I try to think about Jeremie not being in pain anymore. I think about all the wonderful parts of our lives. And I think about how mad he would make me sometimes ;-) and how much he would make me laugh! I really try to focus on the day. If I move past the day, my heart just hurts and I can't think straight. He is my love, and unfortunately I think this is something that time will not heal. What other choice do I have but to continue living the life that we worked so hard to build.
Well those are my ramblings today...lets see if I can get out of this soul sucking bed...and clean my house!
Love to all....
Monday, August 1, 2011
08/01/2011
I wanted to post today to tell you all who have supported Jeremie and I throughout this year...Thank you!
I so appreciated seeing so many of you at his viewing and funeral. I wish time could have been slowed down for just a day. I would have loved to spend more time with everyone. I'm so grateful for the love, prayers and sweet thoughts everyone has shared with us, not just on Friday and Saturday but this last year too.
I think the only way I'm gonna try and get up everyday is knowing we have such incredible people in our lives. It was so nice to have a Mom here to take care of kids and food and just being another adult in the house. It really took some pressure off. I'm definitely sad that her presence is gone. But I guess I have to get used to this sometime.
I'm not gonna lie and say I don't hurt and don't just want to curl up in my bed and never come out. I'm seriously fighting that more today then I have in this whole experience. But I guess that is when you make yourself get out of bed. My kids are amazing...they really are trying to make ME feel better. They are incredible little human beings. I think the fog is definitely lifting...and I'm not appreciating feeling and having such clarity of thought at the moment.
I'm hoping I can figure out how to do this without physically having him by my side. I know he is with me. I'm feeling selfish. I want to hear his voice and want him to hug me.
So I personally can use some of your sweet prayers. Hopefully what sanity I have left will remain with me, and really in time I won't hurt so bad. Isn't that what every body says?
Again, Thank you all! Love you all....
Cori & Kids
I so appreciated seeing so many of you at his viewing and funeral. I wish time could have been slowed down for just a day. I would have loved to spend more time with everyone. I'm so grateful for the love, prayers and sweet thoughts everyone has shared with us, not just on Friday and Saturday but this last year too.
I think the only way I'm gonna try and get up everyday is knowing we have such incredible people in our lives. It was so nice to have a Mom here to take care of kids and food and just being another adult in the house. It really took some pressure off. I'm definitely sad that her presence is gone. But I guess I have to get used to this sometime.
I'm not gonna lie and say I don't hurt and don't just want to curl up in my bed and never come out. I'm seriously fighting that more today then I have in this whole experience. But I guess that is when you make yourself get out of bed. My kids are amazing...they really are trying to make ME feel better. They are incredible little human beings. I think the fog is definitely lifting...and I'm not appreciating feeling and having such clarity of thought at the moment.
I'm hoping I can figure out how to do this without physically having him by my side. I know he is with me. I'm feeling selfish. I want to hear his voice and want him to hug me.
So I personally can use some of your sweet prayers. Hopefully what sanity I have left will remain with me, and really in time I won't hurt so bad. Isn't that what every body says?
Again, Thank you all! Love you all....
Cori & Kids
Monday, July 25, 2011
07/25/11
Well I guess I have to post this week. Most of you know by now that on July 23rd, 2011 at 11:55 p.m., my soul-mate, my love, my best friend and my eternal companion passed away.
My Jeremie...my Jeremie. I miss him terribly, yet feel him by me constantly. To be with him as he passed from this world into another existence was a beautiful and sacred experience. Jeremie is finally not suffering. He finally is at peace. And I like to think of the many things he might be experiencing now that he is not under the constraints of a physical body.
I've made myself quite ill from the last several days. I'm a dork and didn't eat or drink or go to the bathroom for 3 days. You think that I would have had the thought process of needing to feed and take care of basic needs. Amazing how those needs are unnoticed when you don't want to blink your eyes 'cause you might miss something.
Our family was with us this weekend. What a blessing to have everyone, all together. I think this is why Jeremie could go home, he said goodbye.
My sweet mother is staying with me this week as I attempt to prepare for Jeremie's funeral. What a blessing. See...sometimes I do know that I need help.
Jeremie's viewing will be on Friday, 07/29/2011 from 7-9 p.m. at our Stake Center, and the funeral will be on Saturday, 07/30/11 at 1 p.m., same Stake Center. Following the funeral there will be grave-side services in the Ivins City cemetery.
Washington Fields Stake Center
1297 S 3000 E
Washington, UT 84780
Obviously this is a time my sweet kids and myself are really struggling. I'm so grateful for the last year that I got to have with him. I'm grateful for the adventures that we have been able to share in our life. I'm sad because we wanted to do so much. But this life is short, and we aren't meant to be here for eternity. Somehow, some way, some time, I will understand why. Right now I'm just focusing on how he just doesn't hurt anymore. He loved his life, his children and he made me feel like a loved, beautiful princess everyday.
So his funeral arrangements have been made. There is some peace with having that finished. Next will be trying to duct-tape myself together, and keep myself together so that I may continue to live each day as he would have me live it. With intention.
Love you all...
Cori
My Jeremie...my Jeremie. I miss him terribly, yet feel him by me constantly. To be with him as he passed from this world into another existence was a beautiful and sacred experience. Jeremie is finally not suffering. He finally is at peace. And I like to think of the many things he might be experiencing now that he is not under the constraints of a physical body.
I've made myself quite ill from the last several days. I'm a dork and didn't eat or drink or go to the bathroom for 3 days. You think that I would have had the thought process of needing to feed and take care of basic needs. Amazing how those needs are unnoticed when you don't want to blink your eyes 'cause you might miss something.
Our family was with us this weekend. What a blessing to have everyone, all together. I think this is why Jeremie could go home, he said goodbye.
My sweet mother is staying with me this week as I attempt to prepare for Jeremie's funeral. What a blessing. See...sometimes I do know that I need help.
Jeremie's viewing will be on Friday, 07/29/2011 from 7-9 p.m. at our Stake Center, and the funeral will be on Saturday, 07/30/11 at 1 p.m., same Stake Center. Following the funeral there will be grave-side services in the Ivins City cemetery.
Washington Fields Stake Center
1297 S 3000 E
Washington, UT 84780
Obviously this is a time my sweet kids and myself are really struggling. I'm so grateful for the last year that I got to have with him. I'm grateful for the adventures that we have been able to share in our life. I'm sad because we wanted to do so much. But this life is short, and we aren't meant to be here for eternity. Somehow, some way, some time, I will understand why. Right now I'm just focusing on how he just doesn't hurt anymore. He loved his life, his children and he made me feel like a loved, beautiful princess everyday.
So his funeral arrangements have been made. There is some peace with having that finished. Next will be trying to duct-tape myself together, and keep myself together so that I may continue to live each day as he would have me live it. With intention.
Love you all...
Cori
Tuesday, July 19, 2011
07/19/2011
Well Jeremie was discharged from the hospital. Woo Hoo!!! Took stinking forever! Good heavens. Jeremie is doing really well today. It seems the pain is under control. No small feat!
So the results from yesterdays CT scan. Jeremie has tumors on/in the pleural space in his chest. Tumor on his chest wall and a mass on his adrenal gland, and the numerous tumors we see right under his skin. Needless to say the last couple of treatments with the Dacogen haven't been effective. And that the leukemia is progressing despite treatment and the transplant. We had started backing off of the steroid over the last two weeks, and Jeremie started having stomach problems again (graft vs host disease, without a good anti-leukemia effect).
We had a wonderful, real and thoughtful conversation with our oncologist last night. We have decided to go on IHC's hospice services. This will allow better pain control for Jeremie. In some ways it has freed us. It is like we are just entering the next phase of treatment and our life. I personally feel some pressure that has been lifted. We of course asked The All Pertinent Question (I'm sure you are all wondering as well), what is our time-frame? That question is a question we do not have an answer for. We were told that there isn't a crystal ball. We do know Jeremie's disease is progressing, and we have wonderful nurses and an incredible doctor that will make sure Jeremie will live his life as pain free as possible. And I can't ask for anything more.
Officially being moved to hospice doesn't really change anything in our life. Except access to pain medication/pumps/staff etc at all times. And hopefully no more hospital admissions! So that is kind of it in a nutshell.
We plan to go have some more adventures...and will definitely update them here :-)
Love to all...
Cori & Jeremie
So the results from yesterdays CT scan. Jeremie has tumors on/in the pleural space in his chest. Tumor on his chest wall and a mass on his adrenal gland, and the numerous tumors we see right under his skin. Needless to say the last couple of treatments with the Dacogen haven't been effective. And that the leukemia is progressing despite treatment and the transplant. We had started backing off of the steroid over the last two weeks, and Jeremie started having stomach problems again (graft vs host disease, without a good anti-leukemia effect).
We had a wonderful, real and thoughtful conversation with our oncologist last night. We have decided to go on IHC's hospice services. This will allow better pain control for Jeremie. In some ways it has freed us. It is like we are just entering the next phase of treatment and our life. I personally feel some pressure that has been lifted. We of course asked The All Pertinent Question (I'm sure you are all wondering as well), what is our time-frame? That question is a question we do not have an answer for. We were told that there isn't a crystal ball. We do know Jeremie's disease is progressing, and we have wonderful nurses and an incredible doctor that will make sure Jeremie will live his life as pain free as possible. And I can't ask for anything more.
Officially being moved to hospice doesn't really change anything in our life. Except access to pain medication/pumps/staff etc at all times. And hopefully no more hospital admissions! So that is kind of it in a nutshell.
We plan to go have some more adventures...and will definitely update them here :-)
Love to all...
Cori & Jeremie
Monday, July 18, 2011
07-18-2011
I was going to post yesterday. But it was a hectic crazy day. Jeremie's poor mom has shingles. And she is down for the count with that nasty virus. That disease has literally made her bed ridden for the last two weeks. I feel so bad for her. Plus I had this nagging feeling that I would just end up posting again. And really why add to the writing...you know?
Jeremie has had these tumor like growths popping up on his body over the last several months. Usually they are small, around a 1/2 centimeter in diameter and just under the skin. Most of them have been on his arms. Well about a month ago two big ones pop up on each of his lower legs. One on the front right of his right leg and the other one in the middle of his left calf. The right one is not movable and feels like it is attached to something deeper. They have worried Jeremie and I as his legs feel numb and weak. We of course have brought these up. But again, kind of assumed what they were and that we really weren't going to do anything about them. And in all reality there isn't a whole lot to do about them.
Saturday I felt a small one on his rib cage, and on Sunday I could feel a large on on his left chest, with something underneath it as well. His pain since Friday night has increased to out of control levels. We tried adding a pain patch on Friday night and Sunday night a higher dose pain patch. Today, Monday it was VERY out of control. Called our Doc this morning. Jeremie was going to start his Dacogen treatment today. We went to the infusion clinic to have Jeremie's lab's drawn and my sweet nursing buddy was there. I kind of snagged her and asked if she could call Dr. Lemon to get something for Jeremie's pain. So he received pain medication and then we were off to see Dr. Lemon.
So the easiest course of action and quickest, is to have Jeremie admitted. YUCK! Seriously was working really, really hard on making that NOT happen. But oh well. Jeremie is going to have a CT scan of his abdomen and chest. And he was started on a pain pump (again). This is the part that is the hardest. I'm definitely experiencing some PSTD at the moment. I feel like we are back on the super scary pain pump road that wasn't working so well.
We are both so scared right now. We have had such fun over the last several weeks. And we just aren't ready to give that up. I'm scared about what I need to say to my kids. We keep talking about everything, but I just haven't let it escape from my mouth that it really might be getting close to the end. I of course haven't had a moment of letting that thought go out of my head. But it is different to verbalize it. It makes it a bit more real. I'm really tired of this reality. But I'm also getting to the point of wanting to hear some real, live possibilities of what our future holds for us in the next day, week or month. I truly have no idea what to expect. And trying to nail down what is exactly going on with Jeremie is liking holding on to jello. I know the man has leukemia. But how do these tumors play a role? Do they shorten his time? Are they going to be decreasing quality of life? Is there anything to be done about them? And for the first time I am desperately wanting to know what to expect. Humph! There got it out!
Can we go back to la la land for a minute? I just want to be at home with him. Out of pain. With our kids. Going through our life. I'm so tired. And I just can't imagine how tired my Jeremie is. He just doesn't want to hurt anymore.
Well I wish I could write that everything works as it should, and he is just going to survive with leukemia and we could go about our life (just adjusted), and watch our babies grow together. And make fun of each other when we are really old and wrinkly. Unfortunately he will be forever beautiful, and non-wrinkly. I don't think even Shakespeare could right a tragedy so sad as this.
Sorry to leave on a sad note...off to help Jeremie choke down some barium...
Love to all...
Cori
Jeremie has had these tumor like growths popping up on his body over the last several months. Usually they are small, around a 1/2 centimeter in diameter and just under the skin. Most of them have been on his arms. Well about a month ago two big ones pop up on each of his lower legs. One on the front right of his right leg and the other one in the middle of his left calf. The right one is not movable and feels like it is attached to something deeper. They have worried Jeremie and I as his legs feel numb and weak. We of course have brought these up. But again, kind of assumed what they were and that we really weren't going to do anything about them. And in all reality there isn't a whole lot to do about them.
Saturday I felt a small one on his rib cage, and on Sunday I could feel a large on on his left chest, with something underneath it as well. His pain since Friday night has increased to out of control levels. We tried adding a pain patch on Friday night and Sunday night a higher dose pain patch. Today, Monday it was VERY out of control. Called our Doc this morning. Jeremie was going to start his Dacogen treatment today. We went to the infusion clinic to have Jeremie's lab's drawn and my sweet nursing buddy was there. I kind of snagged her and asked if she could call Dr. Lemon to get something for Jeremie's pain. So he received pain medication and then we were off to see Dr. Lemon.
So the easiest course of action and quickest, is to have Jeremie admitted. YUCK! Seriously was working really, really hard on making that NOT happen. But oh well. Jeremie is going to have a CT scan of his abdomen and chest. And he was started on a pain pump (again). This is the part that is the hardest. I'm definitely experiencing some PSTD at the moment. I feel like we are back on the super scary pain pump road that wasn't working so well.
We are both so scared right now. We have had such fun over the last several weeks. And we just aren't ready to give that up. I'm scared about what I need to say to my kids. We keep talking about everything, but I just haven't let it escape from my mouth that it really might be getting close to the end. I of course haven't had a moment of letting that thought go out of my head. But it is different to verbalize it. It makes it a bit more real. I'm really tired of this reality. But I'm also getting to the point of wanting to hear some real, live possibilities of what our future holds for us in the next day, week or month. I truly have no idea what to expect. And trying to nail down what is exactly going on with Jeremie is liking holding on to jello. I know the man has leukemia. But how do these tumors play a role? Do they shorten his time? Are they going to be decreasing quality of life? Is there anything to be done about them? And for the first time I am desperately wanting to know what to expect. Humph! There got it out!
Can we go back to la la land for a minute? I just want to be at home with him. Out of pain. With our kids. Going through our life. I'm so tired. And I just can't imagine how tired my Jeremie is. He just doesn't want to hurt anymore.
Well I wish I could write that everything works as it should, and he is just going to survive with leukemia and we could go about our life (just adjusted), and watch our babies grow together. And make fun of each other when we are really old and wrinkly. Unfortunately he will be forever beautiful, and non-wrinkly. I don't think even Shakespeare could right a tragedy so sad as this.
Sorry to leave on a sad note...off to help Jeremie choke down some barium...
Love to all...
Cori
Saturday, July 16, 2011
Pictures :-)
Hee hee hee lets see if I figured out how to post our pictures :-)
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Our Family:-)
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Our oldest son Alex...almost 18
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My beautiful daughter Scarlett...15
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My sweet Har-bear (Harrison)...13
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Ahhh...my lil' Jeremie...sweet, sweet baby....10 years old
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My little desert baby Phoenix...mommy & daddy's baby...9 years old
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One of my favorite pictures of all time...captures everything I love about our life....
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This is the one shot...that I asked or had in my brain before we went to have the photos done. I've seen this image in my head when I see Jeremie doing the things he loves. When he leaves this earth this is how I see him leaving...
Kellie...sweet Kellie, you have an amazing gift of capturing children and families...thank you for sharing your gift and capturing my family as I see them everyday...beautiful. http://www.elementsphotographystudio.com/
Love to all....
Cori
Kellie...sweet Kellie, you have an amazing gift of capturing children and families...thank you for sharing your gift and capturing my family as I see them everyday...beautiful. http://www.elementsphotographystudio.com/
Love to all....
Cori
Sunday, July 10, 2011
07/10/2011
I love the theme song to "The Love Boat"...remember that T.V. series? "Love boat...exciting and new...love boat...". That is sort of my theme for today ;-) Ha Ha Ha! I always have the weirdest songs pop up in my head when I start thinking of what is going on at various times. To be so gross, but absolutely on topic, I had that diarrhea song stuck in my head the other day. But that song was stuck in my head because I was thinking of the show "Parenthood", you know the one with Steve Martin in it. I love that show.
Anyway...on to better things besides the scary thoughts in my head. Jeremie has popped up with some interesting things lately. It has been somewhat hard to find my motivation for posting about it. It seems as if I post everything that poor man pops up with I would be writing all day long. And we know how I feel about writing.
So July 4th we got to go to ER again! Seriously the hole stinking day was spent in ER. On Sunday July 3rd, Jeremie was driving the Yukon and said that he needed to tell me something, but that he couldn't because I would make him pull the car over and not allow him to drive. I got that lovely adrenaline feeling pumping through my veins when he said that and just asked him to pull the car over immediately without asking why. He then proceeded to tell me he was having double vision and that he was having difficulty seeing and focusing. Oh man! Heart definitely pumping, having one of those moments of panic. I'm of course immediately thinking "CHLOROMA IN THE BRAIN!". He also told me he was having numbness and tingling in his legs, especially his left leg. Grrrrr!!!!
On July 4th, his left eye would track and move with objects. His right eye would move towards the left, but not the right, so he looked like he had a lazy eye. Very disorienting to look at. He said it was very disorienting to look through! We went to the infusion clinic, and I was starting to get a yucky feeling. I decided to text Dr. Lemon, not panic poor Jeremie. Dr. Lemon who wasn't on call, texted us back and said we had to go to ER and get an MRI immediately. We did what we where told.
We arrived to ER, at least we had a purpose and knew exactly what we needed. In the meantime of being put into a room. Oh yeah...Jeremie had a neutrophil count of 500! And we are in the ER!!!! He had to wear his mask the whole stinking 6 hours! The ER is sooo GROSS! While we where in the room waiting, the infusion clinic nurse called and reported that Jeremie had a critical value level on his potassium and that we needed to go to the ER. Well Howdy! We were already there. How convenient.
So first they did the MRI. I'm thinking yup...chloroma of the brain. And thinking oh my gosh, what is the next few months going to look like now? Jeremie had already been struggling the past week. He had been feeling like everything has been slowly taken from him. His strength...and now his sight...what else was going to be next? Miraculously the MRI can back CLEAN!!!!! WOO HOO!!!!!! Seriously if I could have jumped for joy it would have been 10 stories high. I felt such relief. While waiting for the MRI results. The on-call oncologist spoke with the ER doc and asked if they could repeat the labs. The did a repeat and Jeremie's potassium was actually higher. They wanted to admit him. We of course already talked this out and had a united front of saying NO! Seriously he has leukemia, we know this. Why admit and waste more of our time in the dumb hospital. They gave us a prescription to give Jeremie to get rid of the excess potassium and we went home for fireworks!
Thinking the story is over? Of course it isn't...don't you know our luck yet? As my mother would say if I didn't have bad luck I wouldn't have any at all. We went to see the Doc on Tuesday last week. They can't rule out anything really going on the in the brain, relating to leukemia. The actual nerve that is effecting Jeremie's vision is his right cranial nerve vi (6). This is the nerve that allows the eyes to move laterally or side to side. This is of course the nerve you cannot see on his MRI. While they could rule out large masses or lesions. They cannot rule out a leukemic cause. Since Jeremie didn't have a TIA, ocular stroke or have vascular problems. It leaves leukemia. The opthamologist said the nerve could heal anywhere from 4 weeks to 6 months. Some viruses can also cause this problem. We have also had those ruled out. And what does Jeremie have? Leukemia. Oh and the potassium is still high (the high 5's it was 6.8 for my medical friends out there and his sodium is 120...know why I have a headache now?)
So my gorgeous man is a devil of a pirate. He can orient better if his right eye is covered. We got him a patch :-)...totally adorable too. They can't rule out chloromas or masses on his spine that also might be effecting nerves leading to the brain. And of course there is always a part of you that wants to go running down the rabbit hole to follow Alice, but you have to ask yourself...to what end? What information will this bring. Will we know something different than we know right now? Will it change our direction? Will it bring a better life? Will it cost money, time, energy and cause pain? We already know and knew the answer. Jeremie has leukemia. It is a bit frustrating. 'Cause we have constant reminders that Jeremie has leukemia, there isn't a moment or a day that will go by that we don't have a reminder. He is worn out from it. Tired of it taking little pieces of him and his life he likes to live. I keep saying, "I'm not ready, I'm not ready, I'm just not ready". Even though I know there isn't a loop hole...I keep trying to find one. My brain just won't stop.
Ugh...my heart and mind is a bit heavy. Jeremie had a difficult day Friday. We had to be at the infusion clinic by 8:00 am, then over to the Doc's office by 9:30, then me back at work. Jeremie will have a bad day if he is made to be up and going earlier than 1:00. It wears out his poor body, and breaks my heart. So I have a special request of my family and friends. Please, please, please...do not call him, leave a message or text him before 2:00. He can't turn off his phone as he uses it for a flash light at night. The light from the room disorients him, and he doesn't want to sleep with the eye patch on. If you need something from him or whatever reason you can always call me or text me with your questions or just wait until around 2:00. Thank you!!!
On a happier note. WE HAVE A BACKYARD!!!! Our amazing Ward put our yard in on Saturday. I got up to be helpful with laying sod (was told to expect it to be ready around 8 am to lay). I was out by 8:16 am and the lawn was finished! It is beautiful. I was so excited. It was hard not to go shake Jeremie awake and make him come look at it with me. I probably looked like an idiot. All I could do was stare...so afraid it was going to disappear if I closed my eyes. I spent 5 minutes of my day inside yesterday. I stayed outside the whole day. We ate dinner out there last night and tonight. Jeremie was so excited when he got up. We keep walking around and around it. THANK YOU!!! THANK YOU!!! What an amazing gift. We love being outside. Jeremie loves the back yard and now has a chance to enjoy it :-)
Well I'm gonna go nurse my dumb migraine. Man I'm sick of those...
Love to all of you....
Cori
Anyway...on to better things besides the scary thoughts in my head. Jeremie has popped up with some interesting things lately. It has been somewhat hard to find my motivation for posting about it. It seems as if I post everything that poor man pops up with I would be writing all day long. And we know how I feel about writing.
So July 4th we got to go to ER again! Seriously the hole stinking day was spent in ER. On Sunday July 3rd, Jeremie was driving the Yukon and said that he needed to tell me something, but that he couldn't because I would make him pull the car over and not allow him to drive. I got that lovely adrenaline feeling pumping through my veins when he said that and just asked him to pull the car over immediately without asking why. He then proceeded to tell me he was having double vision and that he was having difficulty seeing and focusing. Oh man! Heart definitely pumping, having one of those moments of panic. I'm of course immediately thinking "CHLOROMA IN THE BRAIN!". He also told me he was having numbness and tingling in his legs, especially his left leg. Grrrrr!!!!
On July 4th, his left eye would track and move with objects. His right eye would move towards the left, but not the right, so he looked like he had a lazy eye. Very disorienting to look at. He said it was very disorienting to look through! We went to the infusion clinic, and I was starting to get a yucky feeling. I decided to text Dr. Lemon, not panic poor Jeremie. Dr. Lemon who wasn't on call, texted us back and said we had to go to ER and get an MRI immediately. We did what we where told.
We arrived to ER, at least we had a purpose and knew exactly what we needed. In the meantime of being put into a room. Oh yeah...Jeremie had a neutrophil count of 500! And we are in the ER!!!! He had to wear his mask the whole stinking 6 hours! The ER is sooo GROSS! While we where in the room waiting, the infusion clinic nurse called and reported that Jeremie had a critical value level on his potassium and that we needed to go to the ER. Well Howdy! We were already there. How convenient.
So first they did the MRI. I'm thinking yup...chloroma of the brain. And thinking oh my gosh, what is the next few months going to look like now? Jeremie had already been struggling the past week. He had been feeling like everything has been slowly taken from him. His strength...and now his sight...what else was going to be next? Miraculously the MRI can back CLEAN!!!!! WOO HOO!!!!!! Seriously if I could have jumped for joy it would have been 10 stories high. I felt such relief. While waiting for the MRI results. The on-call oncologist spoke with the ER doc and asked if they could repeat the labs. The did a repeat and Jeremie's potassium was actually higher. They wanted to admit him. We of course already talked this out and had a united front of saying NO! Seriously he has leukemia, we know this. Why admit and waste more of our time in the dumb hospital. They gave us a prescription to give Jeremie to get rid of the excess potassium and we went home for fireworks!
Thinking the story is over? Of course it isn't...don't you know our luck yet? As my mother would say if I didn't have bad luck I wouldn't have any at all. We went to see the Doc on Tuesday last week. They can't rule out anything really going on the in the brain, relating to leukemia. The actual nerve that is effecting Jeremie's vision is his right cranial nerve vi (6). This is the nerve that allows the eyes to move laterally or side to side. This is of course the nerve you cannot see on his MRI. While they could rule out large masses or lesions. They cannot rule out a leukemic cause. Since Jeremie didn't have a TIA, ocular stroke or have vascular problems. It leaves leukemia. The opthamologist said the nerve could heal anywhere from 4 weeks to 6 months. Some viruses can also cause this problem. We have also had those ruled out. And what does Jeremie have? Leukemia. Oh and the potassium is still high (the high 5's it was 6.8 for my medical friends out there and his sodium is 120...know why I have a headache now?)
So my gorgeous man is a devil of a pirate. He can orient better if his right eye is covered. We got him a patch :-)...totally adorable too. They can't rule out chloromas or masses on his spine that also might be effecting nerves leading to the brain. And of course there is always a part of you that wants to go running down the rabbit hole to follow Alice, but you have to ask yourself...to what end? What information will this bring. Will we know something different than we know right now? Will it change our direction? Will it bring a better life? Will it cost money, time, energy and cause pain? We already know and knew the answer. Jeremie has leukemia. It is a bit frustrating. 'Cause we have constant reminders that Jeremie has leukemia, there isn't a moment or a day that will go by that we don't have a reminder. He is worn out from it. Tired of it taking little pieces of him and his life he likes to live. I keep saying, "I'm not ready, I'm not ready, I'm just not ready". Even though I know there isn't a loop hole...I keep trying to find one. My brain just won't stop.
Ugh...my heart and mind is a bit heavy. Jeremie had a difficult day Friday. We had to be at the infusion clinic by 8:00 am, then over to the Doc's office by 9:30, then me back at work. Jeremie will have a bad day if he is made to be up and going earlier than 1:00. It wears out his poor body, and breaks my heart. So I have a special request of my family and friends. Please, please, please...do not call him, leave a message or text him before 2:00. He can't turn off his phone as he uses it for a flash light at night. The light from the room disorients him, and he doesn't want to sleep with the eye patch on. If you need something from him or whatever reason you can always call me or text me with your questions or just wait until around 2:00. Thank you!!!
On a happier note. WE HAVE A BACKYARD!!!! Our amazing Ward put our yard in on Saturday. I got up to be helpful with laying sod (was told to expect it to be ready around 8 am to lay). I was out by 8:16 am and the lawn was finished! It is beautiful. I was so excited. It was hard not to go shake Jeremie awake and make him come look at it with me. I probably looked like an idiot. All I could do was stare...so afraid it was going to disappear if I closed my eyes. I spent 5 minutes of my day inside yesterday. I stayed outside the whole day. We ate dinner out there last night and tonight. Jeremie was so excited when he got up. We keep walking around and around it. THANK YOU!!! THANK YOU!!! What an amazing gift. We love being outside. Jeremie loves the back yard and now has a chance to enjoy it :-)
Well I'm gonna go nurse my dumb migraine. Man I'm sick of those...
Love to all of you....
Cori
Sunday, July 3, 2011
07/03/2011
Well today, or I should say this weekend has brought up a lot of memories of the last year. July 5th 2010 marks the beginning of our nightmare starting in the emergency room on July 5th (twice) continuing through ER visits on July 7th & 9th. With in between visits with our primary care doctor. Searching for a reason that would explain Jeremie's terrible pain.
In some ways this last year has been the most amazing and touching year of my life, and dare I say even our families life. We have experienced the sharing of love, generosity and kindness that I can't believe we have been the recipients of.
So a quick short snap-shot of our last year...
We had some issues getting into our new home on the expected date of June 14th, 2010. We finally closed on our house on July 7th, 2010. Poor Jeremie, I told him to "act healthy" at the closing. I was sure at that point he was having gallbladder issues. Still wish he was having gallbladder issues.
It was a miracle that we got through the closing, now that I look back on it. He was hurting so bad. We rented a U-Haul truck that night, and started moving stuff over to our new home. Jeremie was too sick. Some of the shop helpers of Saville Furniture helped us load the U-Haul to get it over to our house. Jeremie, through the grace of God was able to help unload the truck, along with one of our new neighbors. This neighbor needs a medal, I decided he is the energizer bunny ;-)
Jeremie went to ER again on July 9th. His poor dad took him for me. I was sick and hurting from a minor surgery I had that day. It was such a mess! That was the night the ER doc told Jeremie not to come back, as they can't find anything wrong with him. Gotta love that. Seriously can't focus on that or I get really cranky. And that was so three weeks ago ;-)
I ended up the next day running over to my two neighbors we had met while building our house. I asked them to come and give Jeremie a blessing. These two men just popped up and ran over. At least I felt a little peace with that.
Monday July 11th I went to clinical. I just couldn't stop thinking about Jeremie. I was researching and researching and researching. I had not requested a copy of Jeremie's labs up to this point. I really just kept believing that everything was coming back normal (well except for the horribly high D-Dimer...which we were told some people walk around with high D-Dimers...seriously they told us that). Noted that one to myself, I never, ever trust that everything is normal, no matter who the person is. Jeremie was not able to go to work as his pain was unbearable. This man had not taken a day off in the 10 years he had been working at the shop. And he had not been to work since July 2nd.
Tuesday July 12th, we had an appointment with our primary care doc, as obviously we couldn't figure out what was going on with Jeremie. At one point in the visit I explained that I was starting to get very upset and paranoid as something was very wrong with my husband. That this isn't him. He pulled up the labs on the computer and said they all show normal, "oh well, all except for his hematocrit". I said "do you think it is normal for a 34 year old man to have low hematocrit?". He replied that no, he didn't, and that we would repeat the labs. Jeremie went home and I went back to work. I decided to obtain a copy of Jeremie's labs.
This is where I kick myself over and over again. Jeremie's labs were only normal on his first ER visit at 2 am on July 5th. Three hours later when we returned to ER, as Jeremie's "virus" (yup that is what they diagnosed him with first) was causing him extreme pain, they had labs pulled again. This is when his labs became abnormal (oh, and every single visit there on out they were abnormal). Grrrr....If I had just asked exactly what they were, not taken their word for it, he wouldn't have hurt for so long.
Doctor Lemon became my hero on July 12th at 4:00 p.m. It took a five minute conversation with him...explaining what was happening with Jeremie and what Jeremie's labs were over the last week for him to know exactly what was wrong with Jeremie. Of course he didn't say what he thought. He just said to bring Jeremie to the 3rd floor of the hospital, he was getting admitted and Jeremie was going to have a bone-marrow biopsy.
That night Jeremie's platelets were so low, along with an out of whack clotting time he was at risk for bleeding to death. Jeremie had sneezed that night and had a terrible bloody nose that was hard to stop. By that morning of July 13th, they knew that Jeremie had leukemia. However at that time they thought he had APML or acute pro-myleocytic leukemia (with that leukemia you look like you have DIC or disseminated intravascular coagulation, you can't clot correctly in your blood, you make tiny little clots and really thin blood, super-duper dangerous). It has a cure rate of 95% and is treated with high dose Vitamin A and chemo. But they were going to have to life-flight Jeremie to LDS hospital as he wasn't hemodynamically stable. Or he could have bled to death.
Over the next few days of being at LDS hospital we learned Jeremie's cytogenetics of his leukemia and began this new and scary road of having cancer at 34, along with a wife and five young children. I love reading about AML because it is "primarily a cancer of elderly men". Yeah right.
This emotional, scary road has been made easier and tolerable by the amazing people we call neighbors and friends. Our ward, although they didn't know us, didn't even know we were LDS came to our rescue. They brought and continue to bring us meals. They help with my kids, picking them up for scouts and activities. They have fasted for us and prayed for us. As a ward they decided to help get our back-yard finished. I can't tell you how touching this is. To be able to enjoy our home to its fullest with my sweet Jeremie here on this earth...is amazing. They are giving their time, talents and generosity, that they just don't have to do. Plus in the heat of this summer. I wish I had words to express the thankfulness in my heart for all of them.
My work has been incredible. What would I do without them? Constantly making sure we are ok. Asking if I need to take time off. And again, people generously making it possible for me to go back and forth to Salt Lake. Through their generosity, I didn't have to worry how to put gas in my gar for the 9 trips during Jeremie's transplant. And specifically my sweet Cedar office making sure I had a Christmas for my babies.
Through all these wonderful, incredible and giving people, I have been eased into being a one income household. I don't know how else it could have been done (not saying it is easy). I'm so grateful, so touched...how could I not see miracles around us. I think God does know us...my sweet mother-in-law feels that we were inspired to come to our neighborhood when we did. I think she is right.
Of course our family...how can I leave out our family? Man...mom, dad and Perry...really, what would I do without you? MeMe and PePe...I know you all would do everything in your power to fix this for us. I mean MeMe...you are working so hard on winning that $33 million! Favorite thing to do is make wish lists for MeMe for when she goes to Vegas ;-)
So stayed tuned for our next anniversary date on July 13th...Jeremie might actually blog that day!
Again, thank you all for being our rays of sunshine through our big dark gray cloud...
Lots of Love,
Cori & Jeremie
In some ways this last year has been the most amazing and touching year of my life, and dare I say even our families life. We have experienced the sharing of love, generosity and kindness that I can't believe we have been the recipients of.
So a quick short snap-shot of our last year...
We had some issues getting into our new home on the expected date of June 14th, 2010. We finally closed on our house on July 7th, 2010. Poor Jeremie, I told him to "act healthy" at the closing. I was sure at that point he was having gallbladder issues. Still wish he was having gallbladder issues.
It was a miracle that we got through the closing, now that I look back on it. He was hurting so bad. We rented a U-Haul truck that night, and started moving stuff over to our new home. Jeremie was too sick. Some of the shop helpers of Saville Furniture helped us load the U-Haul to get it over to our house. Jeremie, through the grace of God was able to help unload the truck, along with one of our new neighbors. This neighbor needs a medal, I decided he is the energizer bunny ;-)
Jeremie went to ER again on July 9th. His poor dad took him for me. I was sick and hurting from a minor surgery I had that day. It was such a mess! That was the night the ER doc told Jeremie not to come back, as they can't find anything wrong with him. Gotta love that. Seriously can't focus on that or I get really cranky. And that was so three weeks ago ;-)
I ended up the next day running over to my two neighbors we had met while building our house. I asked them to come and give Jeremie a blessing. These two men just popped up and ran over. At least I felt a little peace with that.
Monday July 11th I went to clinical. I just couldn't stop thinking about Jeremie. I was researching and researching and researching. I had not requested a copy of Jeremie's labs up to this point. I really just kept believing that everything was coming back normal (well except for the horribly high D-Dimer...which we were told some people walk around with high D-Dimers...seriously they told us that). Noted that one to myself, I never, ever trust that everything is normal, no matter who the person is. Jeremie was not able to go to work as his pain was unbearable. This man had not taken a day off in the 10 years he had been working at the shop. And he had not been to work since July 2nd.
Tuesday July 12th, we had an appointment with our primary care doc, as obviously we couldn't figure out what was going on with Jeremie. At one point in the visit I explained that I was starting to get very upset and paranoid as something was very wrong with my husband. That this isn't him. He pulled up the labs on the computer and said they all show normal, "oh well, all except for his hematocrit". I said "do you think it is normal for a 34 year old man to have low hematocrit?". He replied that no, he didn't, and that we would repeat the labs. Jeremie went home and I went back to work. I decided to obtain a copy of Jeremie's labs.
This is where I kick myself over and over again. Jeremie's labs were only normal on his first ER visit at 2 am on July 5th. Three hours later when we returned to ER, as Jeremie's "virus" (yup that is what they diagnosed him with first) was causing him extreme pain, they had labs pulled again. This is when his labs became abnormal (oh, and every single visit there on out they were abnormal). Grrrr....If I had just asked exactly what they were, not taken their word for it, he wouldn't have hurt for so long.
Doctor Lemon became my hero on July 12th at 4:00 p.m. It took a five minute conversation with him...explaining what was happening with Jeremie and what Jeremie's labs were over the last week for him to know exactly what was wrong with Jeremie. Of course he didn't say what he thought. He just said to bring Jeremie to the 3rd floor of the hospital, he was getting admitted and Jeremie was going to have a bone-marrow biopsy.
That night Jeremie's platelets were so low, along with an out of whack clotting time he was at risk for bleeding to death. Jeremie had sneezed that night and had a terrible bloody nose that was hard to stop. By that morning of July 13th, they knew that Jeremie had leukemia. However at that time they thought he had APML or acute pro-myleocytic leukemia (with that leukemia you look like you have DIC or disseminated intravascular coagulation, you can't clot correctly in your blood, you make tiny little clots and really thin blood, super-duper dangerous). It has a cure rate of 95% and is treated with high dose Vitamin A and chemo. But they were going to have to life-flight Jeremie to LDS hospital as he wasn't hemodynamically stable. Or he could have bled to death.
Over the next few days of being at LDS hospital we learned Jeremie's cytogenetics of his leukemia and began this new and scary road of having cancer at 34, along with a wife and five young children. I love reading about AML because it is "primarily a cancer of elderly men". Yeah right.
This emotional, scary road has been made easier and tolerable by the amazing people we call neighbors and friends. Our ward, although they didn't know us, didn't even know we were LDS came to our rescue. They brought and continue to bring us meals. They help with my kids, picking them up for scouts and activities. They have fasted for us and prayed for us. As a ward they decided to help get our back-yard finished. I can't tell you how touching this is. To be able to enjoy our home to its fullest with my sweet Jeremie here on this earth...is amazing. They are giving their time, talents and generosity, that they just don't have to do. Plus in the heat of this summer. I wish I had words to express the thankfulness in my heart for all of them.
My work has been incredible. What would I do without them? Constantly making sure we are ok. Asking if I need to take time off. And again, people generously making it possible for me to go back and forth to Salt Lake. Through their generosity, I didn't have to worry how to put gas in my gar for the 9 trips during Jeremie's transplant. And specifically my sweet Cedar office making sure I had a Christmas for my babies.
Through all these wonderful, incredible and giving people, I have been eased into being a one income household. I don't know how else it could have been done (not saying it is easy). I'm so grateful, so touched...how could I not see miracles around us. I think God does know us...my sweet mother-in-law feels that we were inspired to come to our neighborhood when we did. I think she is right.
Of course our family...how can I leave out our family? Man...mom, dad and Perry...really, what would I do without you? MeMe and PePe...I know you all would do everything in your power to fix this for us. I mean MeMe...you are working so hard on winning that $33 million! Favorite thing to do is make wish lists for MeMe for when she goes to Vegas ;-)
So stayed tuned for our next anniversary date on July 13th...Jeremie might actually blog that day!
Again, thank you all for being our rays of sunshine through our big dark gray cloud...
Lots of Love,
Cori & Jeremie
Friday, June 24, 2011
06/24/2011
I'm a bit late on the whole posting on the blog thing this week. Exhaustion doesn't seem to be a good enough word to describe how tired I am. Dang it! I started off whiny! Okay...change of gears! It has been a busy week full of all kinds of adventures (that better?).
It seemed like the end of last week Jeremie was becoming increasingly weak, and having more and more difficulty eating and keeping any food down. It was really starting to scare me. He appeared to have lost more weight, was really weak, and light-headed. He was also so pale. Now mind you he had his Dacogen treatments all last week. So I know in the back of my head that he is going to start to have some side-effects. But it seemed different. I felt panicky and unsure. And then of course my mind just starts to go. Searching and searching around in my mind for loop holes, answers, something that will make sense of the change coming over his body. He had blood work on Monday. He was definitely low on blood, platelets starting to fall a bit, liver looking a tiny bit on the cranky side and his kidneys looking like he was dehydrated. Sometimes being a nurse stinks. My mind is constantly working the physiology of what is happening.
Jeremie didn't have an appointment with our oncologist until Wednesday. Meanwhile, I was thinking of things that could possibly help him feel better, or help him gain strength. And here is where my struggles started. My "hospice" nurse mind kept popping up with the body getting rid of what it doesn't need, and starting the process of dying (didn't like that thought). While the other side of my mind, the one where I am Jeremie's wife thought about TPN or giving nutrition through his central line. But then I was thinking about not wanting to make him so miserable. Then I had all of the thoughts of how is this supposed to go? Where are we going from here? What do we get to expect? Is he going to be gaining strength? Is that a possibility? Is attempting to get food down him just cruel? UGH!
So I called Dr. Lemon's office on Tuesday. That sweet man called back that night. Aaah it was awesome! I probably sounded like a panic stricken crazy woman by that point. He answered all of my questions. My favorite part of the conversation is that we "are in uncharted waters". There is a possibility of Jeremie becoming stronger. Jeremie was probably having a raging case of graft vs host disease (where the transplanted cells fight his cells, and in this case, his gastrointestinal tract). That he was going to order blood for Wednesday and start a steroid to get it under control.
The possible plan is around the 3rd or 4th treatment with the Dacogen, is to perform a bone-marrow biopsy to see how well the Dacogen is working at keeping leukemia contained. That information will determine if Jeremie stays on the Dacogen (cause it would be working) or going off of the Dacogen (because it had no effect, or the effect was negligible). Right now is the challenge of graft vs host disease control. It obviously can make Jeremie quite sick and miserable. But it is also what is fighting to keep leukemia contained as well.
So anyway....on to the good stuff. Jeremie had 2 units of blood on Wednesday along with some extra fluid and a high dose of I.V. steroids. He was so ill going in. His poor blood pressure was so low, he was constantly dizzy. He came out of the infusion with pink cheeks and feeling better than he had in weeks. That night he ate dinner with us (chili and cornbread!), and kept it down! It felt so good to have a bit of anxiety leave my body :-) Jeremie had family come over and visit that night, and he was able to be out in our living room.
Yesterday he went to the pharmacy to pick up the oral form of the steroid on his bike! Then went to the shop to visit his sweet Aunt Deanna (I hope I'm spelling it right) and Uncle Paul. We haven't seen them in 7 years! It was so much fun to visit. I was just ecstatic that he felt good enough to do it all. By last night I wanted to sit on him, he was running me ragged! Makes me so nervous when he puts so much into his day. I worry he exhausts himself.
We enjoy the time we get to spend with him. Especially when Jeremie is feeling good. I just like the poor man. He is such a blast to hang out with. I love when he makes me laugh, which is a sign he is feeling better for that crass, sarcastic, dry humor to make a debut. It is funny the small things you notice that aren't there when someone isn't feeling good. I'm quite spoiled and I really miss being spoiled. When Jeremie feels good I just can't get him to stop trying to do everything. That people, is why I was able to go to nursing school, go to work and work on my masters. No wonder I'm struggling. I'm used to being babied! And dang it I liked it! I miss our orbit around each other. Our energy levels definitely matched. A dumb game of how much can you add to your plate was definitely something we have played for too many years. Seriously regretting the amount of "have too's" I have. Someday I look very forward to having nothing on my plate :-)
I'm praying this week is one full of strength for him. That he will be able to enjoy doing what he likes, that I will be able to keep up!
I continue to feel so thankful for our friends, family and neighbors. We are so touched by the love we continue to receive and feel. We know this life isn't meant to be eternal, the people who surround us have made this scary, difficult part of this short life full of sunshine and love. Thank you again...
Also our family's thoughts and prayers are with Brooke Bennion and her sweet family. She lost her husband last Sunday. What a sweet, incredible man Curt was. He has been on my mind everyday. My thoughts and my prayers turn to him and his family he left behind. To Jeremie and I, it was unexpected. I guess it always is? I never remember a time of not seeing him smile. That is how I see his face, always smiling. So happy that we were able to spend some time with him in the last couple of months. Love you Bower's Family and please know how much we appreciate your prayers and love, ours are definitely with you at this time.
Well that is all for this week...
Love to all of you....
Cori
It seemed like the end of last week Jeremie was becoming increasingly weak, and having more and more difficulty eating and keeping any food down. It was really starting to scare me. He appeared to have lost more weight, was really weak, and light-headed. He was also so pale. Now mind you he had his Dacogen treatments all last week. So I know in the back of my head that he is going to start to have some side-effects. But it seemed different. I felt panicky and unsure. And then of course my mind just starts to go. Searching and searching around in my mind for loop holes, answers, something that will make sense of the change coming over his body. He had blood work on Monday. He was definitely low on blood, platelets starting to fall a bit, liver looking a tiny bit on the cranky side and his kidneys looking like he was dehydrated. Sometimes being a nurse stinks. My mind is constantly working the physiology of what is happening.
Jeremie didn't have an appointment with our oncologist until Wednesday. Meanwhile, I was thinking of things that could possibly help him feel better, or help him gain strength. And here is where my struggles started. My "hospice" nurse mind kept popping up with the body getting rid of what it doesn't need, and starting the process of dying (didn't like that thought). While the other side of my mind, the one where I am Jeremie's wife thought about TPN or giving nutrition through his central line. But then I was thinking about not wanting to make him so miserable. Then I had all of the thoughts of how is this supposed to go? Where are we going from here? What do we get to expect? Is he going to be gaining strength? Is that a possibility? Is attempting to get food down him just cruel? UGH!
So I called Dr. Lemon's office on Tuesday. That sweet man called back that night. Aaah it was awesome! I probably sounded like a panic stricken crazy woman by that point. He answered all of my questions. My favorite part of the conversation is that we "are in uncharted waters". There is a possibility of Jeremie becoming stronger. Jeremie was probably having a raging case of graft vs host disease (where the transplanted cells fight his cells, and in this case, his gastrointestinal tract). That he was going to order blood for Wednesday and start a steroid to get it under control.
The possible plan is around the 3rd or 4th treatment with the Dacogen, is to perform a bone-marrow biopsy to see how well the Dacogen is working at keeping leukemia contained. That information will determine if Jeremie stays on the Dacogen (cause it would be working) or going off of the Dacogen (because it had no effect, or the effect was negligible). Right now is the challenge of graft vs host disease control. It obviously can make Jeremie quite sick and miserable. But it is also what is fighting to keep leukemia contained as well.
So anyway....on to the good stuff. Jeremie had 2 units of blood on Wednesday along with some extra fluid and a high dose of I.V. steroids. He was so ill going in. His poor blood pressure was so low, he was constantly dizzy. He came out of the infusion with pink cheeks and feeling better than he had in weeks. That night he ate dinner with us (chili and cornbread!), and kept it down! It felt so good to have a bit of anxiety leave my body :-) Jeremie had family come over and visit that night, and he was able to be out in our living room.
Yesterday he went to the pharmacy to pick up the oral form of the steroid on his bike! Then went to the shop to visit his sweet Aunt Deanna (I hope I'm spelling it right) and Uncle Paul. We haven't seen them in 7 years! It was so much fun to visit. I was just ecstatic that he felt good enough to do it all. By last night I wanted to sit on him, he was running me ragged! Makes me so nervous when he puts so much into his day. I worry he exhausts himself.
We enjoy the time we get to spend with him. Especially when Jeremie is feeling good. I just like the poor man. He is such a blast to hang out with. I love when he makes me laugh, which is a sign he is feeling better for that crass, sarcastic, dry humor to make a debut. It is funny the small things you notice that aren't there when someone isn't feeling good. I'm quite spoiled and I really miss being spoiled. When Jeremie feels good I just can't get him to stop trying to do everything. That people, is why I was able to go to nursing school, go to work and work on my masters. No wonder I'm struggling. I'm used to being babied! And dang it I liked it! I miss our orbit around each other. Our energy levels definitely matched. A dumb game of how much can you add to your plate was definitely something we have played for too many years. Seriously regretting the amount of "have too's" I have. Someday I look very forward to having nothing on my plate :-)
I'm praying this week is one full of strength for him. That he will be able to enjoy doing what he likes, that I will be able to keep up!
I continue to feel so thankful for our friends, family and neighbors. We are so touched by the love we continue to receive and feel. We know this life isn't meant to be eternal, the people who surround us have made this scary, difficult part of this short life full of sunshine and love. Thank you again...
Also our family's thoughts and prayers are with Brooke Bennion and her sweet family. She lost her husband last Sunday. What a sweet, incredible man Curt was. He has been on my mind everyday. My thoughts and my prayers turn to him and his family he left behind. To Jeremie and I, it was unexpected. I guess it always is? I never remember a time of not seeing him smile. That is how I see his face, always smiling. So happy that we were able to spend some time with him in the last couple of months. Love you Bower's Family and please know how much we appreciate your prayers and love, ours are definitely with you at this time.
Well that is all for this week...
Love to all of you....
Cori
Tuesday, June 14, 2011
06-14-2011
Oh my gosh! We got our pictures back! They are amazing! Better than I could have imagined! I'm so excited to get the finishing touches done and post them. Thank you Kellie (http://www.elementsphotographystudio.com/), amazing, amazing work she does!
I think..maybe...I'm in a slightly better mood this week. I don't know it is only Tuesday ;-) so we will see. Jeremie started the Dacogen again this week. He had an amazing week last week. He took Scarlett to get her drivers license permit, ran errands, etc, and did great. The weekend came and all his energy was out the door. He did get a ride on the Harley with his brother on Sunday. But he is still recovering from going too hard. It ends up being a cycle for him. He feels yucky, then feels yucky cause he feels yucky. His whole mood is down right now.
I wish he could just spend a couple of days in bed, and just re-coup. But he has to have those treatments everyday this week. And I definitely think it affects him. I noticed if he just doesn't wake up and get going on his own, the whole day seems shot. If he has to get out of bed or is awakened before he naturally gets up, he is so worn out. Eating of course is still a never ending issue. He is now off of his I.V. fluids with the magnesium so that is nice not to be tethered to something for 4 hours a day. Yay!
I actually made it this week to Clinical. I knew I was going to be going to Beaver. I was however, educated on where my preceptor was located which is Milford. I, being the uneducated person I am thought Beaver and Milford were right by each other. Kind of like Washington and St. George. Milford, however is 30 miles west of Beaver. It was a beautiful drive though. I was only like 45 minutes late for Clinic. Always a good impression on your first day! But what an awesome experience. That was a blast. A beautiful little hospital, clinic and long-term care center. And we got to do all three!!!
My sweet neighbors and wonderful church family have been amazing and helping as usual. It never ceases to amaze me others love, kindness and thoughtfulness. Thank you all for taking the edge of this scary overwhelming time off of us. Thank you all for helping my kids to have some fun as well.
Well, thoughts and prayers are appreciated and hoped for. Please pray my sweet Jeremie can gain some strength. I think he needs to have some fun!
Love to all...
Cori
I think..maybe...I'm in a slightly better mood this week. I don't know it is only Tuesday ;-) so we will see. Jeremie started the Dacogen again this week. He had an amazing week last week. He took Scarlett to get her drivers license permit, ran errands, etc, and did great. The weekend came and all his energy was out the door. He did get a ride on the Harley with his brother on Sunday. But he is still recovering from going too hard. It ends up being a cycle for him. He feels yucky, then feels yucky cause he feels yucky. His whole mood is down right now.
I wish he could just spend a couple of days in bed, and just re-coup. But he has to have those treatments everyday this week. And I definitely think it affects him. I noticed if he just doesn't wake up and get going on his own, the whole day seems shot. If he has to get out of bed or is awakened before he naturally gets up, he is so worn out. Eating of course is still a never ending issue. He is now off of his I.V. fluids with the magnesium so that is nice not to be tethered to something for 4 hours a day. Yay!
I actually made it this week to Clinical. I knew I was going to be going to Beaver. I was however, educated on where my preceptor was located which is Milford. I, being the uneducated person I am thought Beaver and Milford were right by each other. Kind of like Washington and St. George. Milford, however is 30 miles west of Beaver. It was a beautiful drive though. I was only like 45 minutes late for Clinic. Always a good impression on your first day! But what an awesome experience. That was a blast. A beautiful little hospital, clinic and long-term care center. And we got to do all three!!!
My sweet neighbors and wonderful church family have been amazing and helping as usual. It never ceases to amaze me others love, kindness and thoughtfulness. Thank you all for taking the edge of this scary overwhelming time off of us. Thank you all for helping my kids to have some fun as well.
Well, thoughts and prayers are appreciated and hoped for. Please pray my sweet Jeremie can gain some strength. I think he needs to have some fun!
Love to all...
Cori
Sunday, June 5, 2011
06/05/2011
I wanted to start out this week by saying Good Luck to Kacie and her sweet family. Her husband has started the process of a cord-blood transplant as well. They are a young, sweet darling family. My thoughts and prayers are with them. I hope some of my friends and family might also pray for their family.
Jeremie continues to have struggles this week. Still with the nausea/vomiting. Our oncologist thinks that it is a manifestation of graft vs host disease as our "tools" are not as effective as they have been. So he started on another medication to help with motility of his gut. I don't think that is very effective. But Jeremie's schedule is also pretty whacked. Regularly eating hasn't been his priority. It is all such trial and error. We get something under control, to have something else pop up.
Oh by the way those people who suggest marijuana as an effective anti-nausea medication, it is also an amazing way to directly give Jeremie a fungal and bacterial infection in his lungs. FYI- they make a pill called Marinol. It is for cancer patients. And no it isn't magical. I'm getting a little exhausted at suggestions at the moment. I think people forget that we are being very well cared for. And even though we don't share every single thought we have or idea we are trying, please keep illegal ideas to yourself.
Which brings me to another point...yup I'm gonna rant. I know most things said or suggested are from the heart or really from fear. I know that others do not want us to be going through this. But we are. There are no magic foods, herbs, thoughts, dances, incense, or multivitamins that can make this go away. Cancer is not given to people because they are good, bad, weird or odd. Cancer is a genetic mutation at the cellular level. SOME people have increased risk of cancer based on genetics, environment and personal lifestyle. There is no special food, herb or thought that will go into Jeremie's genes and fix it. While they have been able to map the human genome, they have not found a cure to fix a gene. There are some medications that ease the effects or symptoms caused from the aberrant gene, no cure.
We need love, support and strength. Again, we are private people who do not share every single moment of what we are trying to do to give Jeremie the highest quality and quantity of life, nor do I think that is necessarily appropriate. This is such a personal road we are on. At 35 & 34 years old with 5 children, we are having to deal with real life and death choices. These are the most difficult in our life. What might be good or great for your neighbor down the street, isn't going to be good for us. Like we always have, Jeremie and I see the road we want to be on and work our hardest to be on it. And for some people they just don't agree. At this point I would just ask if you don't like it or agree, please keep it to yourself.
Maybe the cranky is starting to leak out, or I'm feeling a bit frustrated, or I just want some resemblance of my life back. I miss people calling before they come over. And I miss sincerity. And I really miss having any sort of control in my life. I tell you, I just want to pick up my 5 babies and Jeremie and move to New Zealand, and attempt to get my head around my crazy life. Maybe I just need a nap.
I really appreciate the love that everyone shares. I can't tell you how it fills my soul, and makes the burden less. It honestly makes up for the stuff that wears me out. I'm happy for the sweet neighbors I have surrounded myself by. I'm so blessed for the friends I have chosen to be close to. It seems as if they were just meant to be here at this point in my life. As I'm surviving on their love and kindness. While I have my rants, my cup is full of others strength and love. Thank you for your continued support that you provide. I wish I could adequately describe the thankfulness that I feel.
Well...may I will get that nap today ;-)
Love,
Cori
Jeremie continues to have struggles this week. Still with the nausea/vomiting. Our oncologist thinks that it is a manifestation of graft vs host disease as our "tools" are not as effective as they have been. So he started on another medication to help with motility of his gut. I don't think that is very effective. But Jeremie's schedule is also pretty whacked. Regularly eating hasn't been his priority. It is all such trial and error. We get something under control, to have something else pop up.
Oh by the way those people who suggest marijuana as an effective anti-nausea medication, it is also an amazing way to directly give Jeremie a fungal and bacterial infection in his lungs. FYI- they make a pill called Marinol. It is for cancer patients. And no it isn't magical. I'm getting a little exhausted at suggestions at the moment. I think people forget that we are being very well cared for. And even though we don't share every single thought we have or idea we are trying, please keep illegal ideas to yourself.
Which brings me to another point...yup I'm gonna rant. I know most things said or suggested are from the heart or really from fear. I know that others do not want us to be going through this. But we are. There are no magic foods, herbs, thoughts, dances, incense, or multivitamins that can make this go away. Cancer is not given to people because they are good, bad, weird or odd. Cancer is a genetic mutation at the cellular level. SOME people have increased risk of cancer based on genetics, environment and personal lifestyle. There is no special food, herb or thought that will go into Jeremie's genes and fix it. While they have been able to map the human genome, they have not found a cure to fix a gene. There are some medications that ease the effects or symptoms caused from the aberrant gene, no cure.
We need love, support and strength. Again, we are private people who do not share every single moment of what we are trying to do to give Jeremie the highest quality and quantity of life, nor do I think that is necessarily appropriate. This is such a personal road we are on. At 35 & 34 years old with 5 children, we are having to deal with real life and death choices. These are the most difficult in our life. What might be good or great for your neighbor down the street, isn't going to be good for us. Like we always have, Jeremie and I see the road we want to be on and work our hardest to be on it. And for some people they just don't agree. At this point I would just ask if you don't like it or agree, please keep it to yourself.
Maybe the cranky is starting to leak out, or I'm feeling a bit frustrated, or I just want some resemblance of my life back. I miss people calling before they come over. And I miss sincerity. And I really miss having any sort of control in my life. I tell you, I just want to pick up my 5 babies and Jeremie and move to New Zealand, and attempt to get my head around my crazy life. Maybe I just need a nap.
I really appreciate the love that everyone shares. I can't tell you how it fills my soul, and makes the burden less. It honestly makes up for the stuff that wears me out. I'm happy for the sweet neighbors I have surrounded myself by. I'm so blessed for the friends I have chosen to be close to. It seems as if they were just meant to be here at this point in my life. As I'm surviving on their love and kindness. While I have my rants, my cup is full of others strength and love. Thank you for your continued support that you provide. I wish I could adequately describe the thankfulness that I feel.
Well...may I will get that nap today ;-)
Love,
Cori
Monday, May 30, 2011
05/30/2011
Tomorrow is the end of my favorite month. But it sort of was the hardest month of my life. This past year has been one crazy ride. I was thinking about a year ago...we just baptized the 3 little boys, moved out of our home in Bloomington, and getting ready to move into our newly built home in Washington Fields. We were so excited! And to think of that moment of moving out of our home was really the start of crazy!
So I'm sort of hoping that this year is gonna be a little less exciting. I'm really hoping to graduate this year. Just finished two papers yesterday, have one left! I have around 200 clinical hours left. I'm just going to take it nice and slow on that though. Yeah, yeah, yeah you say? I know I'm inpatient, competetive and things left undone make me nuts. BUT, I have to slow it down. Can you tell I'm talking myself into this? How do you eat an elephant? One bite at a time.
We had family pictures taken this week, courtesy of my sweet co-workers and friends. It was actually a ton of fun! I'm so excited to get them back. We were really able to encorporate a lot of what and who Jeremie is into these photos. Got the bike and the Les Paul in them too :-) I've never had fun doing family pictures before. Definitely will be doing that again! So stay tuned for those (I asked her to photoshop me to look great...she promised she would...hee hee hee!)
Jeremie is seeming to do better this week. He has struggled with calf and leg pain. Most likely a side-effect from the Cyclosporin. He said the edge is off today in terms of his pain. He is walking around more this week. Still struggling with nausea/vomitting, but I even think that is a little better then it has been. He is skinny as a rail, but gorgeous! Stinker now officially weighs less than me. I'm a bit bitter about that. So of course I'm trying to fill him full of the highest calorie foods I can find. Which I'm probably the only person in the store looking for the highest calorie, fat and sugar content I can find.
Hoping that this week proves to be even better, and that he can keep gaining strength. He needs to be able to have a little bit more fun. His bike is screaming for him to ride! Hopefully the weather will be more cooperative as well.
Lots of love...
Cori
So I'm sort of hoping that this year is gonna be a little less exciting. I'm really hoping to graduate this year. Just finished two papers yesterday, have one left! I have around 200 clinical hours left. I'm just going to take it nice and slow on that though. Yeah, yeah, yeah you say? I know I'm inpatient, competetive and things left undone make me nuts. BUT, I have to slow it down. Can you tell I'm talking myself into this? How do you eat an elephant? One bite at a time.
We had family pictures taken this week, courtesy of my sweet co-workers and friends. It was actually a ton of fun! I'm so excited to get them back. We were really able to encorporate a lot of what and who Jeremie is into these photos. Got the bike and the Les Paul in them too :-) I've never had fun doing family pictures before. Definitely will be doing that again! So stay tuned for those (I asked her to photoshop me to look great...she promised she would...hee hee hee!)
Jeremie is seeming to do better this week. He has struggled with calf and leg pain. Most likely a side-effect from the Cyclosporin. He said the edge is off today in terms of his pain. He is walking around more this week. Still struggling with nausea/vomitting, but I even think that is a little better then it has been. He is skinny as a rail, but gorgeous! Stinker now officially weighs less than me. I'm a bit bitter about that. So of course I'm trying to fill him full of the highest calorie foods I can find. Which I'm probably the only person in the store looking for the highest calorie, fat and sugar content I can find.
Hoping that this week proves to be even better, and that he can keep gaining strength. He needs to be able to have a little bit more fun. His bike is screaming for him to ride! Hopefully the weather will be more cooperative as well.
Lots of love...
Cori
Monday, May 23, 2011
05/23/11
Sometimes I sit and think about what I should post on our blog. Should I share every single experience and happening in our family? Do I share each precious moment or miracle? Should I just get down to business and do bare-bones updates? I don't know...so I guess it sort of depends on my mood. Which is definitely connected to how Jeremie is doing.
Maybe today I will share a little bit more...It is difficult for me to be less private than I am. Sometimes I wish we hadn't told anyone and we could just pretend nothing was different and we could just go about our lives. But then I regret that thought, because I think it is through others love, prayers and hope that I'm currently living on. Aaah pretending can be so fun.
Jeremie started Dacogen (the chemo therapy that is more of a containment type, than eradication type) last week. He had 5 days of treatments. They went pretty well. It was hard on him though. He had to travel everyday to the infusion clinic. Had to have 2 units of blood last week and have labs done. So every single day Jeremie was out and about. This is quite a bit of work for him. The good news is that it seems that the Dacogen doesn't have a major nausea/vomiting side-effect. He now has 3 weeks off until the next treatment round. He was also started back on the Cyclosporin for his immuno-suppresant. He started having severe joint pain. Which they think was a result of graft vs host disease. So he went back on a small amount. It will take several days of taking the medication to get a good blood level. We will wait and see if that helps.
Usually the weekends are when Jeremie does the best. We try a little something new each weekend. The prior two weekends involved the Harley Davidson store :-) Ha Ha Ha. Man I'm a sucker for him. Or we try a different thing for him to eat. Right now he likes the Mocha Frappachino's from Starbucks. They have serious calories! I usually indulge myself in some yummy Chai. Trying to get food down him is harder than any two year old I've encountered. It is even more difficult to keep it down. He was quite disappointed that he wasn't feeling good enough to go out this weekend. He is exhausted and has been quite nauseated over the last few days. Last night was the hardest night I have had with him since he was first diagnosed in the hospital. He decided every single thing that he has ingested over the last several months should be evacuated from his body. It is wrong to see a human being so miserable. I felt so bad for him. All I can do is stand there, and clean everything up as fast as I can. I'm hoping this is a latent side-effect to the Dacogen. It also can be a result of graft vs host disease...UGH. My brain never stops thinking!
My kids are out of school on Wednesday. I'm so stinking excited I can't see straight. The stress that is relieved at them not being in school is enormous. Plus, I like someone home during the day with Jeremie. I think they are pretty excited too. It will be our first memorial day weekend in 4 years that we haven't moved. That alone is pretty cool. Not sure if we will do anything. It is hit and miss with what Jeremie feels up to. Some days I think he can run a marathon, and others I'm not sure if he can get up to eat. We are still trying to figure this all out. It is so hard not knowing what to expect.
He tells me that some days he feels like he is going to live forever. And yesterday he said he wasn't sure he was going to make it through the night. I guess that is normal. Having these up and down moments. You never know if he is just trying to recover from the transplant, having a side-effect from medication, or is just severely anemic. The balance of everything astounds me. Our bodies are perfect, sticking things or medications in there disrupts the perfect balance, not crazy to feel yucky from them. But don't like what happens without them either. Sort of just stuck.
Well I think I'm done rambling...
Love,
Cori
Maybe today I will share a little bit more...It is difficult for me to be less private than I am. Sometimes I wish we hadn't told anyone and we could just pretend nothing was different and we could just go about our lives. But then I regret that thought, because I think it is through others love, prayers and hope that I'm currently living on. Aaah pretending can be so fun.
Jeremie started Dacogen (the chemo therapy that is more of a containment type, than eradication type) last week. He had 5 days of treatments. They went pretty well. It was hard on him though. He had to travel everyday to the infusion clinic. Had to have 2 units of blood last week and have labs done. So every single day Jeremie was out and about. This is quite a bit of work for him. The good news is that it seems that the Dacogen doesn't have a major nausea/vomiting side-effect. He now has 3 weeks off until the next treatment round. He was also started back on the Cyclosporin for his immuno-suppresant. He started having severe joint pain. Which they think was a result of graft vs host disease. So he went back on a small amount. It will take several days of taking the medication to get a good blood level. We will wait and see if that helps.
Usually the weekends are when Jeremie does the best. We try a little something new each weekend. The prior two weekends involved the Harley Davidson store :-) Ha Ha Ha. Man I'm a sucker for him. Or we try a different thing for him to eat. Right now he likes the Mocha Frappachino's from Starbucks. They have serious calories! I usually indulge myself in some yummy Chai. Trying to get food down him is harder than any two year old I've encountered. It is even more difficult to keep it down. He was quite disappointed that he wasn't feeling good enough to go out this weekend. He is exhausted and has been quite nauseated over the last few days. Last night was the hardest night I have had with him since he was first diagnosed in the hospital. He decided every single thing that he has ingested over the last several months should be evacuated from his body. It is wrong to see a human being so miserable. I felt so bad for him. All I can do is stand there, and clean everything up as fast as I can. I'm hoping this is a latent side-effect to the Dacogen. It also can be a result of graft vs host disease...UGH. My brain never stops thinking!
My kids are out of school on Wednesday. I'm so stinking excited I can't see straight. The stress that is relieved at them not being in school is enormous. Plus, I like someone home during the day with Jeremie. I think they are pretty excited too. It will be our first memorial day weekend in 4 years that we haven't moved. That alone is pretty cool. Not sure if we will do anything. It is hit and miss with what Jeremie feels up to. Some days I think he can run a marathon, and others I'm not sure if he can get up to eat. We are still trying to figure this all out. It is so hard not knowing what to expect.
He tells me that some days he feels like he is going to live forever. And yesterday he said he wasn't sure he was going to make it through the night. I guess that is normal. Having these up and down moments. You never know if he is just trying to recover from the transplant, having a side-effect from medication, or is just severely anemic. The balance of everything astounds me. Our bodies are perfect, sticking things or medications in there disrupts the perfect balance, not crazy to feel yucky from them. But don't like what happens without them either. Sort of just stuck.
Well I think I'm done rambling...
Love,
Cori
Sunday, May 15, 2011
05/15/2011
Whew...what a rough couple of days it has been. I really haven't looked forward to writing this. It has been such a struggle to comprehend, process and think through this haze of information. Before we posted on our blog, we needed to talk to our families face-to-face.
Jeremie's bone-marrow biopsy came back positive for leukemia. So it is considered "systemic". Not hiding behind the blood brain barrier, but throughout his body. Our oncologist here in St. George is going to be following us from now on. No more traveling to Salt Lake! Yay! Gotta have some good news right?
Our game plan from now on? Well Jeremie went off of his immunosuppresants on Thursday. This will help increase the growth of the transplant, and help "contain" leukemia. The immunosuppresants helped decrease the risk of graft vs host disease. But it also decreases the anti-leukemic effect of the transplanted cells. He will also be starting on a type of chemo-therapy that will help "contain" the leukemia. None of these options will cure Jeremie from his leukemia. The hope is to keep his pain away with these techniques. If you ask our oncologists they will say our time frame is weeks to months. Of course we are not asking our oncologists how long we can expect ;-).
Over the next few weeks we hope to have every thing in order. So that we can concentrate on Jeremie increasing in strength and living our lives. My dream and hope is that Jeremie's pain can be kept under control, he can gain strength and ride his Harley into the ground. My sweet husband loves life. He is a young, vibrant soul. Never has any day passed since I have known him that he doesn't live each one of his days with intention. He is an inspiration to me, and to our children. I'm hoping to get in a couple more adventures over the summer.
Thank you for your continued love, support and prayers. Sincerly I appreciate it all. It fills me with such joy to know that we are surrounded by such amazing people. We are truly a blessed family.
Love to all...
Cori
Jeremie's bone-marrow biopsy came back positive for leukemia. So it is considered "systemic". Not hiding behind the blood brain barrier, but throughout his body. Our oncologist here in St. George is going to be following us from now on. No more traveling to Salt Lake! Yay! Gotta have some good news right?
Our game plan from now on? Well Jeremie went off of his immunosuppresants on Thursday. This will help increase the growth of the transplant, and help "contain" leukemia. The immunosuppresants helped decrease the risk of graft vs host disease. But it also decreases the anti-leukemic effect of the transplanted cells. He will also be starting on a type of chemo-therapy that will help "contain" the leukemia. None of these options will cure Jeremie from his leukemia. The hope is to keep his pain away with these techniques. If you ask our oncologists they will say our time frame is weeks to months. Of course we are not asking our oncologists how long we can expect ;-).
Over the next few weeks we hope to have every thing in order. So that we can concentrate on Jeremie increasing in strength and living our lives. My dream and hope is that Jeremie's pain can be kept under control, he can gain strength and ride his Harley into the ground. My sweet husband loves life. He is a young, vibrant soul. Never has any day passed since I have known him that he doesn't live each one of his days with intention. He is an inspiration to me, and to our children. I'm hoping to get in a couple more adventures over the summer.
Thank you for your continued love, support and prayers. Sincerly I appreciate it all. It fills me with such joy to know that we are surrounded by such amazing people. We are truly a blessed family.
Love to all...
Cori
Monday, May 9, 2011
05/09/2011
Jeremie made it through his surgery pretty slick. He is sore, but starting to feel a little bit better. The growth was definitely malignant. Just read the path report today, and the malignancy is leukemia.
Questioned poor Dr. Lemon to death on Saturday. One positive is that the growth was pretty "contained", but I really don't know what that means. Or even what we do next, if anything. Still waiting on the results from the bone-marrow biopsy. We are possibly looking at decreasing some of Jeremie's immunosuppressants based on the biopsy. This would hopefully help increase the graft vs leukemia effect, that would again have no bearing on the blood brain barrier. So basically I have no answers or ideas what is going to happen this moment forward.
I'm trying to be calm and open to the universe on this. Really I am. I have moments that are better than others. Trying to hold myself together is proving to be a challenge. I really don't want to imagine any sort of life without my Jeremie. He tells me he is at peace. Will I get to that point too? I just can't stop thinking about how much I love him and our incredible life together. Was that the gift? I used to say that we were so lucky to have met each other when we were so young, and how much life we have lived together since meeting. We have lived a life time in 19 years. I'm selfish...I want more. My life and my dreams are intertwined with him and our children. How does one let go of that, and start imagining such a different existence?
Ok...done with feeling and talking about that...I'm pulling a Scarlett O'Hara and thinking about that tomorrow!
Well...I will keep updating. Definitely looking forward to Jeremie feeling stronger and better.
Love to all...
Cori
Questioned poor Dr. Lemon to death on Saturday. One positive is that the growth was pretty "contained", but I really don't know what that means. Or even what we do next, if anything. Still waiting on the results from the bone-marrow biopsy. We are possibly looking at decreasing some of Jeremie's immunosuppressants based on the biopsy. This would hopefully help increase the graft vs leukemia effect, that would again have no bearing on the blood brain barrier. So basically I have no answers or ideas what is going to happen this moment forward.
I'm trying to be calm and open to the universe on this. Really I am. I have moments that are better than others. Trying to hold myself together is proving to be a challenge. I really don't want to imagine any sort of life without my Jeremie. He tells me he is at peace. Will I get to that point too? I just can't stop thinking about how much I love him and our incredible life together. Was that the gift? I used to say that we were so lucky to have met each other when we were so young, and how much life we have lived together since meeting. We have lived a life time in 19 years. I'm selfish...I want more. My life and my dreams are intertwined with him and our children. How does one let go of that, and start imagining such a different existence?
Ok...done with feeling and talking about that...I'm pulling a Scarlett O'Hara and thinking about that tomorrow!
Well...I will keep updating. Definitely looking forward to Jeremie feeling stronger and better.
Love to all...
Cori
Saturday, May 7, 2011
05-07-2011
This week has been incredibly difficult. May is usually my most favorite month. I was married 16 years ago to my sweet Jeremie on May 6th, 1995. I just LOVE the month of May. Spring-time, new growth, flowers and the beginning of life. That is what May symbolizes to me.
So on May 2nd, my little kitty-cat Tigger was put to sleep. He had been struggling with health problems for the last month. He probably should have been to the vet sooner to be put down. But I just couldn't do it. He is and was my baby boy, just another one of my boys. Jeremie and I held him as he passed this life, into the next. It was especially hard and it made me face death, decisions, comfort, and quality of life. Poor vet has seen more of my tears in the last month than anyone. I keep choosing that venue to let it all out.
This week Jeremie has been struggling with pain in his shoulders and an abnormal growth. Unfortunately it is so difficult to differentiate between "leukemic bone pain" and "activated bone-marrow pain". On MRI the two would look similar as well. He had an ultrasound to to check the abnormal growth on Wednesday. Also unfortunately, it came back as malignant, most likely a return of leukemia.
Jeremie is having this abnormal growth removed today at DRMC. We are here now. Waiting for him to go into surgery. Dr. Lemon our local oncologist will also perform a bone-marrow biopsy while Jeremie is under general anesthetic (Again, why I love this man). This area or abnormal growth is another area that is protected by the central-nervous system or blood brain barrier. Meaning that his "new" immune cells do not cross this barrier and provide no long lasting anti-leukemic effect. He did receive "extra" irradiation to the cranial and spine while preparing for transplant. This is the treatment for leukemia in the central nervous system and blood brain barrier. Unfortunately it did not cure this problem. Darn leukemia cells can cross back and forth between blood brain barrier, peripheral blood system and bone-marrow. It has access to everything. So it can "grow" anywhere.
Until we have the exact results from this abnormal growth and the bone-marrow biopsy it is considered malignant until proven otherwise. So of course we are so disappointed and sad. And very frustrated. It seems no matter what has been done, tried, prayed, or begged for leukemia is going to keep running its course.
I'm laying out the very basics right now. I'm trying to reserve some privacy while Jeremie and I figure out everything with our family. As more details and information come I will post. I know sometimes with just giving the bare-bones of what is going on, it can create more questions. At this time it is difficult to hear "what next". So let me explain that nothing is next. Jeremie has received his life-time supply of radiation and chemotherapy. Plus it just becomes cruel to keep giving poison and watching people suffer. And none of it is without consequence. Jeremie's surgery today is to biopsy and to provide physical comfort.
I will not post time frames. We want to live our lives like we are alive and are a family, not by a clock. None of us know when it is our time to leave this earth and enter another life, so it will be with us as well.
As I gain strength and understanding over the next little bit, more details will follow. I'm so thankful Jeremie went through the transplant, I got to have him for 3 more months. The last several weeks he has been doing so well. Despite this new growth and his pain, his energy has increased in little increments. He is driving, loving and laughing. I'm hoping he can gain enough of his strength back to ride his bike soon.
I love you all...please feel free to post any questions you have. I don't mind answering them. I realize Jeremie and I live this every moment of our lives. So when he have news good or bad, it is easy for us to assimilate and start the process of moving through it. For others though it is a shock, so please know I'm open.
Love to all...
Cori
So on May 2nd, my little kitty-cat Tigger was put to sleep. He had been struggling with health problems for the last month. He probably should have been to the vet sooner to be put down. But I just couldn't do it. He is and was my baby boy, just another one of my boys. Jeremie and I held him as he passed this life, into the next. It was especially hard and it made me face death, decisions, comfort, and quality of life. Poor vet has seen more of my tears in the last month than anyone. I keep choosing that venue to let it all out.
This week Jeremie has been struggling with pain in his shoulders and an abnormal growth. Unfortunately it is so difficult to differentiate between "leukemic bone pain" and "activated bone-marrow pain". On MRI the two would look similar as well. He had an ultrasound to to check the abnormal growth on Wednesday. Also unfortunately, it came back as malignant, most likely a return of leukemia.
Jeremie is having this abnormal growth removed today at DRMC. We are here now. Waiting for him to go into surgery. Dr. Lemon our local oncologist will also perform a bone-marrow biopsy while Jeremie is under general anesthetic (Again, why I love this man). This area or abnormal growth is another area that is protected by the central-nervous system or blood brain barrier. Meaning that his "new" immune cells do not cross this barrier and provide no long lasting anti-leukemic effect. He did receive "extra" irradiation to the cranial and spine while preparing for transplant. This is the treatment for leukemia in the central nervous system and blood brain barrier. Unfortunately it did not cure this problem. Darn leukemia cells can cross back and forth between blood brain barrier, peripheral blood system and bone-marrow. It has access to everything. So it can "grow" anywhere.
Until we have the exact results from this abnormal growth and the bone-marrow biopsy it is considered malignant until proven otherwise. So of course we are so disappointed and sad. And very frustrated. It seems no matter what has been done, tried, prayed, or begged for leukemia is going to keep running its course.
I'm laying out the very basics right now. I'm trying to reserve some privacy while Jeremie and I figure out everything with our family. As more details and information come I will post. I know sometimes with just giving the bare-bones of what is going on, it can create more questions. At this time it is difficult to hear "what next". So let me explain that nothing is next. Jeremie has received his life-time supply of radiation and chemotherapy. Plus it just becomes cruel to keep giving poison and watching people suffer. And none of it is without consequence. Jeremie's surgery today is to biopsy and to provide physical comfort.
I will not post time frames. We want to live our lives like we are alive and are a family, not by a clock. None of us know when it is our time to leave this earth and enter another life, so it will be with us as well.
As I gain strength and understanding over the next little bit, more details will follow. I'm so thankful Jeremie went through the transplant, I got to have him for 3 more months. The last several weeks he has been doing so well. Despite this new growth and his pain, his energy has increased in little increments. He is driving, loving and laughing. I'm hoping he can gain enough of his strength back to ride his bike soon.
I love you all...please feel free to post any questions you have. I don't mind answering them. I realize Jeremie and I live this every moment of our lives. So when he have news good or bad, it is easy for us to assimilate and start the process of moving through it. For others though it is a shock, so please know I'm open.
Love to all...
Cori
Monday, April 25, 2011
04/25/2011
Feeling not so grouchy :-)
We went up yesterday to Salt Lake. Jeremie had an appointment with LDS this morning. Then we came right around and came back home. The end.
Ha Ha Ha...kidding! So Jeremie and I had worked ourselves up into quite a pair of paranoid messes last night. He was starting to have some shoulder pain. Which got my mind back to what if'ing to death. What if leukemia came back, what if, what if, what if. And apparently my poor spouse was thinking the same thing!
So what a pleasant surprise to go to our appointment today and have our minds set at ease. This isn't usually the case you know. Usually it is the down and dirty everything is terrible and here is why. But today Jeremie's numbers are still climbing their way toward normal. White-blood cell counts are all normal. Hematocrit is super fabulous. Liver looks better than it has since November and his kidneys look magnificent. Jeremie's low grade fevers are probably due to his body working hard. And his pain isn't to be unexpected with bone-marrow activity. And honestly if it was disease coming back, what would we do? So we both left the appointment very excited to get home :-)
Jeremie is stronger than he has been for months. He drove most of the way up to Salt Lake and he drove to Fillmore today. He is eating better. We switched around some anti-nausea med's. Worked like a charm. Received some validation that he really is doing well. Oh and of course this weekend we went to the Harley Store. Nothing means healed like Jeremie having to visit the Harley Davidson Store :-) Ha Ha Ha.
I was so excited after our appointment today I jumped up and down in the elevator and smacked a big kiss on his cheek! Today is one of those days I could just skip everywhere I go. I know, I know it could all change tomorrow. But today I'm excited. It just feels good to be excited.
Like usual...your prayers, your thoughts are keeping us going! Miracles continue to surround us!
Lots of Love,
Cori
We went up yesterday to Salt Lake. Jeremie had an appointment with LDS this morning. Then we came right around and came back home. The end.
Ha Ha Ha...kidding! So Jeremie and I had worked ourselves up into quite a pair of paranoid messes last night. He was starting to have some shoulder pain. Which got my mind back to what if'ing to death. What if leukemia came back, what if, what if, what if. And apparently my poor spouse was thinking the same thing!
So what a pleasant surprise to go to our appointment today and have our minds set at ease. This isn't usually the case you know. Usually it is the down and dirty everything is terrible and here is why. But today Jeremie's numbers are still climbing their way toward normal. White-blood cell counts are all normal. Hematocrit is super fabulous. Liver looks better than it has since November and his kidneys look magnificent. Jeremie's low grade fevers are probably due to his body working hard. And his pain isn't to be unexpected with bone-marrow activity. And honestly if it was disease coming back, what would we do? So we both left the appointment very excited to get home :-)
Jeremie is stronger than he has been for months. He drove most of the way up to Salt Lake and he drove to Fillmore today. He is eating better. We switched around some anti-nausea med's. Worked like a charm. Received some validation that he really is doing well. Oh and of course this weekend we went to the Harley Store. Nothing means healed like Jeremie having to visit the Harley Davidson Store :-) Ha Ha Ha.
I was so excited after our appointment today I jumped up and down in the elevator and smacked a big kiss on his cheek! Today is one of those days I could just skip everywhere I go. I know, I know it could all change tomorrow. But today I'm excited. It just feels good to be excited.
Like usual...your prayers, your thoughts are keeping us going! Miracles continue to surround us!
Lots of Love,
Cori
Thursday, April 21, 2011
04/21/2011
Barf...for someone who hates writing I sure do a lot of it. I had a paper to write today. I have another one tomorrow. And I'm pretty much sick of charting at work too. I'm pretty tired...so today I'm having a mental pity party for myself. Tomorrow is another day, so I'm making the most out of it today :-)
Well moving onto bigger and better things. Jeremie is still home and doing pretty good. When you compare Jeremie to other cancer patients going through what he is, he is doing pretty good compared to that scale. When compared to the rest of us, he is doing pretty crappy. On paper he looks amazing! His white blood cell counts are normal. His neutrophil counts are normal. His platelets are at 101,000 (normal 150-450,000) so he is just about there. Monday his hematocrit was at 24.0, but we re-did his labs on Wednesday and they had increased to 26.4 on their own. So his bone marrow is just trying so hard!
He had a transfusion yesterday, even though he was above the threshold (which is 24). But he had been feeling dizzy and lightheaded when he was trying to stand up and walk. So they went ahead and transfused 2 units of blood. We also did it here (St. George) just in case his hematocrit dropped lower than 24 while we are in Salt Lake. It takes between 4-5 hours to complete a blood transfusion for 2 units.
Jeremie has been experiencing low grade fevers for the past several days. Unfortunately we pushed things pretty hard this last weekend. He wanted to try and go to Village Inn (he ate Rice Crispies! Grrrr...I buy Rice Crispies by the gross..I'm a little tight with money...seriously need to learn to say NO to that man!). Then on Sunday he ran to Home Depot with me (I needed to replace my dryer vent). Then we hung out a MeMe and PePe's that night and he sat up at the dining room table for several hours. Usually you think that wouldn't be a big deal. But Jeremie literally was laying down for 6 solid weeks. His muscles throughout his body have atrophied (shrunk). So sitting up, is quite a work out for him. Then Monday we spent...literally...three hours at the opthamologists office! Three hours!!!! Three hours!!! (Oh and he has dry eyes that are causing excessive tearing. Probably because of damage to tear producing cells from radiation. Possibly will heal on their own, possibly not. He was prescribed some eye drops, and they are working well.) And he had spent an hour at the infusion clinic that day as well. Tuesday we had an appointment with the oncologist here. Wednesday he spent the day at the infusion clinic getting blood. So needless to say, Jeremie has had a very active and busy couple of days. We are thinking (hoping) the low grade fevers are because of all this activity.
Meanwhile this is such fun with five little monster children, a full-time job, oh and I'm trying to finish my stinking Master's program!!!! Ugh...seriously...do you know what I want to do? I just want to play in my yard. I want to pull my weeds. Then I want to come in and re-organize my laundry room and house. Then I want to take a couple hour nap and eat. And maybe find a little time to have a real good cry, have a migraine, and take two days to get over it. Ah well...just feeling a bit on the whiny side today. I need to re-find my center. I keep trying to remember all my blessings, and all the things I'm grateful for. Because there are so many! Just have to keep it pulled together for a bit longer.
Even though I'm swimming in my little pity party for myself today. I'm so excited for the future. I'm so excited that Jeremie is doing well (albeit, I'm always a nervous wreck anticipating the worst all the time), I love the opportunity I have everyday to learn. I love my school. I love my sweet children and want to give them everything. And I love the opportunity I have to pick weeds at my house.
Well I hope all I have to report over the next several forever is that Jeremie continues to grow strong, continues to stay in remission, and continues to heal. Please continue your prayers, good thoughts, good vibes and good energies. They are healing him/us...I KNOW IT! Thank you so much! And Aunt Rexann, thank you so much for keeping him in the Temple :-)
Love to all,
Cori
Well moving onto bigger and better things. Jeremie is still home and doing pretty good. When you compare Jeremie to other cancer patients going through what he is, he is doing pretty good compared to that scale. When compared to the rest of us, he is doing pretty crappy. On paper he looks amazing! His white blood cell counts are normal. His neutrophil counts are normal. His platelets are at 101,000 (normal 150-450,000) so he is just about there. Monday his hematocrit was at 24.0, but we re-did his labs on Wednesday and they had increased to 26.4 on their own. So his bone marrow is just trying so hard!
He had a transfusion yesterday, even though he was above the threshold (which is 24). But he had been feeling dizzy and lightheaded when he was trying to stand up and walk. So they went ahead and transfused 2 units of blood. We also did it here (St. George) just in case his hematocrit dropped lower than 24 while we are in Salt Lake. It takes between 4-5 hours to complete a blood transfusion for 2 units.
Jeremie has been experiencing low grade fevers for the past several days. Unfortunately we pushed things pretty hard this last weekend. He wanted to try and go to Village Inn (he ate Rice Crispies! Grrrr...I buy Rice Crispies by the gross..I'm a little tight with money...seriously need to learn to say NO to that man!). Then on Sunday he ran to Home Depot with me (I needed to replace my dryer vent). Then we hung out a MeMe and PePe's that night and he sat up at the dining room table for several hours. Usually you think that wouldn't be a big deal. But Jeremie literally was laying down for 6 solid weeks. His muscles throughout his body have atrophied (shrunk). So sitting up, is quite a work out for him. Then Monday we spent...literally...three hours at the opthamologists office! Three hours!!!! Three hours!!! (Oh and he has dry eyes that are causing excessive tearing. Probably because of damage to tear producing cells from radiation. Possibly will heal on their own, possibly not. He was prescribed some eye drops, and they are working well.) And he had spent an hour at the infusion clinic that day as well. Tuesday we had an appointment with the oncologist here. Wednesday he spent the day at the infusion clinic getting blood. So needless to say, Jeremie has had a very active and busy couple of days. We are thinking (hoping) the low grade fevers are because of all this activity.
Meanwhile this is such fun with five little monster children, a full-time job, oh and I'm trying to finish my stinking Master's program!!!! Ugh...seriously...do you know what I want to do? I just want to play in my yard. I want to pull my weeds. Then I want to come in and re-organize my laundry room and house. Then I want to take a couple hour nap and eat. And maybe find a little time to have a real good cry, have a migraine, and take two days to get over it. Ah well...just feeling a bit on the whiny side today. I need to re-find my center. I keep trying to remember all my blessings, and all the things I'm grateful for. Because there are so many! Just have to keep it pulled together for a bit longer.
Even though I'm swimming in my little pity party for myself today. I'm so excited for the future. I'm so excited that Jeremie is doing well (albeit, I'm always a nervous wreck anticipating the worst all the time), I love the opportunity I have everyday to learn. I love my school. I love my sweet children and want to give them everything. And I love the opportunity I have to pick weeds at my house.
Well I hope all I have to report over the next several forever is that Jeremie continues to grow strong, continues to stay in remission, and continues to heal. Please continue your prayers, good thoughts, good vibes and good energies. They are healing him/us...I KNOW IT! Thank you so much! And Aunt Rexann, thank you so much for keeping him in the Temple :-)
Love to all,
Cori
Tuesday, April 12, 2011
04/12/2011
Another day that will go down in history. Well at least for our family! Jeremie is home! Woo Hoo!!! Such a wonderful day. Almost as significant as 02/24/11, the day of his transplant. Jeremie came home at day 49 of his transplant.
We were a bit sneaky and brought Jeremie home this weekend. Kind of a dry run, see where we were at. It was a wonderful weekend. I had not been home on a weekend for 9 weeks. It was absolutely wonderful. It felt so good to be normal. So it was so difficult to take him back last night.
We had our appointment with LDS Hospital at 10:00 am this morning. We were sort of nervous how it would go. But ultimately this is Jeremie's ride. He gets to decide how this is going to go. Like usual we needed to take what information they gave us. Wrap it into our family, our goals and how we hope to live this out. So our oncologist came in (I won't go into the parts where I want to scream...we will leave that for a future rant session). He gave his "prepared" speech on how/why we should stay in Salt Lake...blah, blah, blah. Obviously nothing screamed out at us that we should stay. So he finished, and Jeremie said thanks, but I'm going home. And our oncologist smiled, and said "Ok". Then we started in on how this plan was going to work out. We are going to Salt Lake every other Monday, seeing Dr. Lemon in St. George on the Monday's we are not in Salt Lake. And then living our lives to its fullest.
This has been the scariest ride I have ever been on. I've never seen so much pain and experienced so much heartache in my life. I've mentally and honestly, physically prepared myself for my husbands death. I have prayed along side him that it would end, and end now. I have pleaded to please let him stay. I have prayed and hoped that something, anything would get rid of this cancer. I have been angry and frustrated that we never seem to have anything easy. That finally we had reached this period in our life that should have been relatively smooth sailing. Ha! Joke was on me! I have learned that I'm stronger than I ever thought possible. That energy I never even knew existed in my body, was there. I have felt and learned of the love I'm surrounded by.
I usually don't share my spiritual beliefs (I believe they are sacred and private), but here I go. I have such a strong belief in God, and Jesus. I truly understand what it is to "feel comforted". And obviously I have seen and experienced Miracles. I don't believe that God gives us disease or cancer. I do believe being mortal and part of earth and its imperfections makes us all susceptible to earthy laws and rules (i.e. bad genes, environment etc.). I believe we get to act in Gods stead. We are to serve each other and love each other as we are loved by him. That is the blessing. I guess I'm sharing that because I have felt strangers love, gifts, prayers, good thoughts, good vibes, good energy and I feel that we are all gifts to each other. I know this is why I have this blessed extra time with Jeremie. I love not knowing our future. I feel so grateful for all the wonderful people in our lives. I wish I could name you all. But at the risk of offending someone I forgot (cause I'm not perfect). Please, please know how much I appreciate your fasts, your prayers, your love, your good thoughts, your positive energy and your support. I know I will never be alone.
And leukemia sucks.
I'm so excited for our future. We are dreaming of how we are going to be putting our backyard together. We are dreaming about my future when I'm finished with school (praying I can marry it into what I'm doing now...Jeremie helped me think of some awesome stuff!). Dreaming about when we have grand-kids and how our house will probably be finished just in time for them. We haven't done this for a year. It felt SO GOOD! I missed him, he is the other half of my soul. I'm literally not complete without him. Thank you God for letting me have him for a little while more :-)
Again, Thank you...to all of you who love us and believe in us,
Cori
We were a bit sneaky and brought Jeremie home this weekend. Kind of a dry run, see where we were at. It was a wonderful weekend. I had not been home on a weekend for 9 weeks. It was absolutely wonderful. It felt so good to be normal. So it was so difficult to take him back last night.
We had our appointment with LDS Hospital at 10:00 am this morning. We were sort of nervous how it would go. But ultimately this is Jeremie's ride. He gets to decide how this is going to go. Like usual we needed to take what information they gave us. Wrap it into our family, our goals and how we hope to live this out. So our oncologist came in (I won't go into the parts where I want to scream...we will leave that for a future rant session). He gave his "prepared" speech on how/why we should stay in Salt Lake...blah, blah, blah. Obviously nothing screamed out at us that we should stay. So he finished, and Jeremie said thanks, but I'm going home. And our oncologist smiled, and said "Ok". Then we started in on how this plan was going to work out. We are going to Salt Lake every other Monday, seeing Dr. Lemon in St. George on the Monday's we are not in Salt Lake. And then living our lives to its fullest.
This has been the scariest ride I have ever been on. I've never seen so much pain and experienced so much heartache in my life. I've mentally and honestly, physically prepared myself for my husbands death. I have prayed along side him that it would end, and end now. I have pleaded to please let him stay. I have prayed and hoped that something, anything would get rid of this cancer. I have been angry and frustrated that we never seem to have anything easy. That finally we had reached this period in our life that should have been relatively smooth sailing. Ha! Joke was on me! I have learned that I'm stronger than I ever thought possible. That energy I never even knew existed in my body, was there. I have felt and learned of the love I'm surrounded by.
I usually don't share my spiritual beliefs (I believe they are sacred and private), but here I go. I have such a strong belief in God, and Jesus. I truly understand what it is to "feel comforted". And obviously I have seen and experienced Miracles. I don't believe that God gives us disease or cancer. I do believe being mortal and part of earth and its imperfections makes us all susceptible to earthy laws and rules (i.e. bad genes, environment etc.). I believe we get to act in Gods stead. We are to serve each other and love each other as we are loved by him. That is the blessing. I guess I'm sharing that because I have felt strangers love, gifts, prayers, good thoughts, good vibes, good energy and I feel that we are all gifts to each other. I know this is why I have this blessed extra time with Jeremie. I love not knowing our future. I feel so grateful for all the wonderful people in our lives. I wish I could name you all. But at the risk of offending someone I forgot (cause I'm not perfect). Please, please know how much I appreciate your fasts, your prayers, your love, your good thoughts, your positive energy and your support. I know I will never be alone.
And leukemia sucks.
I'm so excited for our future. We are dreaming of how we are going to be putting our backyard together. We are dreaming about my future when I'm finished with school (praying I can marry it into what I'm doing now...Jeremie helped me think of some awesome stuff!). Dreaming about when we have grand-kids and how our house will probably be finished just in time for them. We haven't done this for a year. It felt SO GOOD! I missed him, he is the other half of my soul. I'm literally not complete without him. Thank you God for letting me have him for a little while more :-)
Again, Thank you...to all of you who love us and believe in us,
Cori
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