Thanksgiving

Me, Lonny, Mom and Dad

Aunt Stacy, Ryan, Nicole and Uncle Pat

Me and Nicole

Me, Nicole, Ryan and Lonny

This was the first time I have been home for Thanksgiving in 5 years now. I always choose to spend Thanksgiving in Montana with my friends and to come home and spend Christmas with the family. It was nice to be home for a change on Thanksgiving this year and to be able to spend it with family. It was a little different than the norm this year. We usually all get together at my Grandma's house with my dad's side of the family. But things got all confused this year and everyone kind of ended up doing their own thing. We wouldn't have been able to go anyways because my doctors told me that it still wouldn't be a good idea to be around a large group of people right now because of the steroids that I am on. So in the end we actually ended up spending it with my aunt, uncle and two cousins. My mom, dad, brother and I went out to their house for a really nice Thanksgiving. Lots of amazing food as I am sure most of you enjoyed this holiday.

As for a little update on my current condition: things are starting to get a lot better. I have had a really good week. I am starting to gain more energy and able to do some more things. My stomach has been doing great and I have been able to eat normal again. Hopefully day by day things will continue to look up and I will gain more and more energy. They have reduced my steroid dose down 10 mg, so I am taking 70 mg now. I am fortunate not to have a lot of the side affects that wonderful steroids bring. About the only side affects I have are a "chipmunk" face and joint pain. My face is all swollen, which I am not a huge fan of but that is not as big of a deal as it could be. More vanity than anything I guess. Another good bit of news we received at my last doctors visit was that my donors bone marrow has officially taken over 100 percent. Great News!!! I am going to have my next bone marrow biopsy on day 100. So as for now I am still Leukemia free and hopefully will stay that way forever. So as different as this holiday season has been and will continue to be for me, I have so much to be thankful for. This has definitely been a time when I have realized what is really important in life. Hope that everyone had a wonderful Thanksgiving and continues to enjoy this holiday season.

Yes, I am alive!

Sorry for the LONG delay in updating everyone. Things have been a little bit crazy with ups and downs and for some reason I have just not been able to concentrate on things very well. They have put me on high dose steroids now so that might have some contribution to my mental state. Since I last posted I have been in and out of the hospital. I had a 10 day stay there and don't remember a whole lot of it. I was pretty much sleeping 20 hours a day thanks to the nausea and pain medications. I ended up getting put in the hospital because I was dehydrated and could not keep anything down. I wasn't even able to keep water down. It wasn't the greatest time, but I survived it. Since I have been home I have had my good days and my bad days. My stomach still seems to pose an issue a lot of the time. I have had my days of vomiting and not being able to keep food or meds down. But the past 3 days have been better and I have been able to keep everything down with minimal nausea. My rash is also under control now, which is a very good thing. I saw my doctor today and everything else is looking good. They are just trying to get a handle on this stomach issue so they can take me off the steroids. I can't wait until I can get off of them because being on them restricts me even more because they suppress my immune system. I am getting a little bored being home all the time, there is only so much you can do. I have been getting addicted to watching House MD now. I am renting all the seasons on Netflix, and it just keeps drawing me in. I find it interesting because half of the things they talk about I have either had done to me or have heard about. I guess I have been through a lot of things medically speaking.

Yesterday was a good day though. I had some visitors come and see me. Laura and Dolores came and brought stuff for lunch. We enjoyed just sitting around and chatting while catching some of the CSI:NY marathon. Then my brother called and came with my niece and nephew to have dinner and visit. I really am not supposed to be around the little ones but we had not seen them in so long, so we decided a couple hours wouldn't hurt. Purell and Lysol anyone? It was a good time and I was glad that I was feeling better to have some friends and family by. I was beginning to wonder if I knew anyone anymore because I have been under quarantine for so long. I keep telling myself someday it will all be back to semi "normal" life someday. I know it will never be like it was, but I can't wait until I can eat normal and live normal again.

Through the Valley I Go

Things have been a little rough over this past week. My small rash that started just on my arm and neck spread pretty much over my entire body besides my face. It was really bad on my feet, where it was burning and itching constantly. The rest of my body itched as well but not as bad as my feet. I saw my nurse practitioner on Thursday and she said "well hello donor". It is most likely the GVHD (graft verses host disease) getting worse. See, most likely my donors cells are moving around inside of me and my body is like hold on I don't recognize these as my own and are fighting them, hence the rash. A reaction of the unknown. They did a skin biopsy on my arm just to confirm that it is the GVHD. We wont get the results of that until Monday or so. She gave me a higher dose steroid cream to lather myself with to help the rash. If it doesn't get better just using that they are going to have to put me on oral steroids. They put you on steroids because they are what cures GVHD believe it or not. I am hoping that it doesn't come to that because along with it helping the problem it does cause a lot of side affects especially in mood swings and things such as that. Fortunately the cream is starting to work even after just a few days. My rash is starting to get a lot lighter and reducing in size.

Unfortunately the rash has not been the only thing going on right now. I have been extremely nauseous over this past week. For even a couple days, I have not even been able to keep any of my food down without vommiting. Along with that I have been having constant chills and a low grade fever. My NP was a little more concerned about all of these symptoms than even the rash. She has me on a constant schedule of nausea meds, but they only help for a short time. Yesterday I had blood cultures drawn to check if there is any bacteria that grows back confirming an infection. The on call BMT doctor is supposed to call me this weekend if they find anything. If it comes back positive I will be headed back in the hospital to probably receive antibiotics to get the infection under control. I am also supposed to be watching my temperature at home VERY closely to make sure it doesn't get any higher. The magic number is 100.5. If it reaches that high, back to the hospital I go. Lately it has been riding that fine line. It has been consistently at 99.5, but reached 100 last night. All of the other symptoms I have been having indicate something is going on inside of me. I guess this is my valley. I was really lucky in the beginning to not have any real issues or problems. I skated right through the first part of it. My NP says there are always going to be those peaks and valleys through this healing process. I am just going through a valley right now. So I am resting a lot and watching a lot of movies because I can't do much more than that. I get too nauseous doing anything else. I will try to keep everyone updated on what happens.