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
Monday, May 30, 2011
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
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