Waiting...

Hey everyone : ) I hope you're all well. Much like the title says, right now I am just waiting. I have gotten past the fevers and am feeling the best I've felt since I've been here. My counts are climbing but we're waiting for that magic number: 500. My neutrohpil count has to be at 500 for me to go home. I am so close and feeling this good it's hard not to be a little antsy.

Since the last blog I had a birthday. Even though it was here, it was an amazing day. My family came and stayed all day and night. It felt like home. I love having them here. They really made it a special day. I am so thankful to have this birthday. As I am feeling better and it's getting closer and closer to transplant, all that comes with that is becoming even more real.

I did some reading yesterday...which was a bad idea. I thought it would help. It just really freaked me out haha! There are two things I am really afraid of. The first being that this will make me even more sick and kill me. The second being that it doesn't keep me in remission..which would kill me. I think I've been avoiding thinking on it too much, but like I said it's closer and I can't help now but think about it. It's a scary realization. Aside from the statistics, there were these lists of things that I won't be able to do, medications I'm going to have to take (and THEIR side effects). While this could be the cure, my life and my family's lives are not going to be the same for a while. It will take about a year before I can go back to a "normal" life.

Last night I had a long talk with my nurse about the things I had read. She was a nurse at the Cleveland clinic specializing in BMT and while she's on the unit here she floats down to the BMT floor here too, so she's had a lot of experience. She told me not to freak out too much. That a lot of that information with the statistics and medications are outdated. That the research has come a long way and they now know how to better control things like graft vs host disease. The medications aren't as bad with the side effects now and an important positive going for me are my donors. They have found two donors that are a 10/10 match. The better the match, the better my body will accept the donor.

It's just scary, not knowing and not being able to picture the future. BUT as always I'm trying to focus on the positive: good matches, better medicine, and a loving support system. It's going to be hard, but this will be my cure. This will be my life back. That's all I want. Now to get my counts up and go home!

I thought I would leave you with a video from the Leukemia and Lymphoma Society. I watched this earlier and it inspiring. There are people out there trying to cure what I and so many have. LLS is helping them do that and I am proud and happy to help in any way I can with that. They are a great group, and if we can all work together we can make the difference.

https://www.youtube.com/watch?feature=player_embedded&v=Axlfyi6apys

Take care and thanks for reading :)

Caregivers

I know I just wrote, but I just came from a support group and there were a couple spouses there talking about how they are effected by the disease. About how they worry, about how when they get frustrated then they feel guilty.. like they don't have a right to (Ugh you do). Make no mistake, but while the illness does not like in their bodies, it might as well. It effects the family too. It made me really think about and appreciate what caregiver means.

Caregivers: the term affectionately given to those who take care of us that are ill. Our other better halves. Our family. That someone for me is my husband. He is absolutely a rock. He always seems to strike this perfect balance between letting me know he cares enough to worry, but not letting me on to his worry enough that I am overcome with it. He does my laundry and lovingly brings it to me at our next visit, has taken over the house duties and parental duties AS well as still works to provide us our home and things we need. When I cry, he holds me and without fail knows the perfect thing to say. To get me back on my feet and remember how to be positive, and yet never really asks much for himself. Throughout this news he stays an amazing Dad, a great cop and friend, and an amazing husband. Sure, in the vows it says sickness and in health but does anyone thing they're signing up for the bad health part in their 20's. Doesn't matter. My caregiver is right there and I know I could not fight this without him. I feel I can't justify in words what he is for me.

So I want to dedicate this blog to those caregivers out there. They are amazing, they are our rocks, and without them we would be alone. Thanks for making sure we are never alone :)

complications

Hey everyone : ) I hope you're doing well. Thanks for reading again. Sorry it's been so long since my last post. Things have gotten a little rough for me and I have been feeling a bit on the ...crumby side for a while. I am feeling a bit better now.

So I have been through what they call "standard" chemo. And started the clinical trial drugs. I started getting fevers about a week ago and my line was infected. So that was taken out and I now have two IV's in my hands. It has been a constant battle since then with antibiotics and pills to get the fevers under control. I have been feeling so...blah and tired. I went down for a CT of my chest and abdomen yesterday and they found pneumonia in my left lung. I am glad they finally found the source of all of this and we can target it. I was without fevers last night and so far today. I am feeling much better. I still don't have much of an appetite. I have actually lost over 10lbs these past two weeks, but I wouldn't recommend this diet ; ) haha!

I had to make the decision to stop the clinical trial drugs. On the medication I developed a rash, blurry vision, and other (better if i don't mention them) side effects. My counts are still doing what they want them to so there is no worry there. I have had 3 transfusions of blood/platelets already so I have to say thank you to those someones out there who took the time to donate.

During all of this Lillia was supposed to stay with my for some of these days and hasn't been able to because of the fevers. I hate all of this for her. I know it's allw orth it in the long run and I am keeping it in perspective, but still I will be so glad when my counts start recovering and everything just falls into place. I miss my family. That's the hardest part. They are coming to stay Sunday night so I am so excited for that!! They stayed last week too and it was so nice having them here. Even just sleeping in the same room had comfort written all over it. It felt like home.

My birthday is coming up and just really want to be better by then. James took some time off and they are going to be coming up for that too. It stinks to be spending another birthday here but I am glad to have another birthday.

Well that's all for now. I feel like this one was a bit rambly. Sorry about that, thought I'd just try to get an update out there. Not much else going on. Just watching the counts now, trying to avoid fevers, and getting better. Thanks for reading. Love to you all :)