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