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
Friday, June 24, 2011
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
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