Day 100

Today is day 100. I am excited to report that my bone marrow biopsy came back with zero percent blasts and no sign of cancerous or abnormal cells. This I think is cause to celebrate!! Thanks to everyone for their prayers yet again. I am so thankful for the wonderful support system that I have, I can't imagine going through this without it. Although I am at day 100 it isn't quite freedom time yet. I soon have learned that doctors don't tell you the entire truth about these "dates". Maybe for some day 100 is freedom if they didn't have ANY problems and just skated by with no GVHD or issues post transplant. Since I am still on prednisone (steroids) my immune system is still suppressed to where I should avoid crowds and still am under dietary restrictions. So not too much has changed in that department yet. But after everything I have gone through a little bit more time isn't a huge deal anymore. I know eventually I will be able to enjoy those things again. I am however getting off the prednisone fairly quickly. They were taking me down every week and now I am going down every 4 days in dosage. So as of Monday I will be down to 20 mg once a day. After that they will slow down the process a little bit, but hopefully the restrictions will lessen a little after that.

I did see my doctor yesterday and he thinks that my low platelet count is a delayed reaction to GVHD. My count is still low but has been holding for the past week. So at least it isn't dropping anymore. I have to be more careful because I am bruising easier and wounds don't heal as quickly right now. I also do have a small infection in my toe right now, so I am on antibiotics for 10 days to hopefully get rid of it. Just more little bumps to go over. (: But everything else is looking good and the rest of my numbers are holding tight, so I am happy about that.
I hope that everyone had a wonderful Christmas!

Just a quick note!

I had mentioned before that I was scheduled to have my Day 100 bone marrow biopsy on the 23rd. Well due to and unusual decrease in my platelet count my doctors have opted to do it as soon as possible. I will be having my biopsy tomorrow morning at 9:00 am. My platelet count has cu in half over this past week which means my body is not producing them like they should. They aren't quite sure why, it may be a virus or it could be nothing just a weird trend. Since results from biopsies take a while to get back they just want to get this done as soon as possible. I just ask for prayer that everything comes back looking good and that my biopsy reveals that there is no more cancer or blasting of cells. Thanks and I will write more later!!

Where Does Time Go?

I can't even believe a week has passed since I last wrote on here. I don't know if it is just because of the Holidays, but the weeks just seem to be slipping by. Needless to say that my boredom is no more and I can't seem to find enough hours in the day, as I am sure a lot of you have this same problem. At least most of the things that I am doing are by choice. I don't really have a lot that I HAVE to do like most people AKA: job, kids, etc. But they are little goals I am setting for myself to accomplish, I wouldn't be me if I didn't have goals to strive for. I am sewing quite a bit and even designing my first quilt pattern. I am having a lot of fun being creative and trying to do some things I love but never had the time to do before. Yesterday I also went out shopping a little and even went out to eat. Now I hope that my medical team doesn't read this because I am not really supposed to be doing that stuff yet. So shhhh... I just needed to get out though and I was craving a hamburger so bad. I prayed over the food asking God to protect me and to protect me from people while I was in Target. It felt really good to get out and do some "normal" things again. I won't make it an everyday habit until they give me an ok, but it was a nice change of pace.

Things continue to look good and I was taken down another 10 mg on my steroids. I just have to remember to be putting my cream on my feet so the redness will go away. Even though my steroid dose is getting smaller I seem to be swelling more and more. My upper body and face are getting so big and I am hating it. My skin is so tight! Just when I think it can't swell anymore, I wake up the next morning and it is bigger. They say that unfortunately it is going to take a long time for the swelling to go down. Yeah for that. At least I am not trying to impress anyone right now. I don't see too many people so it isn't too bad. The only little setback that I have had lately is that I took a pretty big fall this past weekend. I was walking the dogs and our bigger dog bolted out and took my legs out from under me. I fell pretty hard to the ground twisting my ankle on my left leg and banging up my knee on the right leg. So that is both of my legs, leaving me unable to walk very well. I was layed up for a couple days before I was able to walk around again. My legs are really really weak anyway right now because of the steroids, so this was just a added bonus. They are a lot better now, still really sore but at least I am able to walk around and do stuff. Other than that everything else is going well. I am set to have my next bone marrow biopsy on the 23rd. This will be my last one until my one year mark, as long as everything in between now and then goes smoothly. Be praying now that good results will come from it! Thank you!!!

Day +77

Yesterday I got a little surprise in the mail. I got a package and when I looked at the address I had no idea who it was from, only that it was from Montana. I opened it and it was a rag quilt. It was sent to me by an organization that was set up to make blankets for those that are dealing with chemo and radiation. It is in memory of a woman who passed away who received one and loved snuggling with it whenever she had to sit for treatments. Someone from the small country church in Augusta, Montana where I was living requested it for me. So that was a nice little surprise and blessing to brighten my day.

But things are continuing to go well and I am gaining energy daily. I saw my doctor on Tuesday and they are pleased with how I am doing. He bumped my steroids down another 10 mg. So the goal is to do that every week and pray that my body handles it well and doesn't react to where I have to be put on more again. The sooner I am off the steroids the sooner I can do things again. I was told that as long as I am on them I will be restricted. This even means after day 100. I am still on the steroids after day 100 I will continue to be restricted till I can get off of them because they act as a mask, blocking any issues that may be going on. So be praying that they can just continue to decrease every week with no problems. I can't wait because then maybe my face can stop swelling like a balloon and my muscles can become normal again. I was told that the reason my upper leg muscles are so weak and I can't even get up by myself from a sitting position is because the steroids cause muscle atrophy. I am supposed to do exercises to strengthen them daily, but until I get off them I don't think it will get back to normal again. Another great piece of news that happened on Tuesday was that I didn't need any magnesium replacements. That is the first time since transplant. My doctor asked me how much mag. I was taking at home, and I told him none. He was a little bit shocked. For some reason I guess my body is producing it on its own. That is pretty much unheard of in transplant patients. Usually all the immuno suppressents we are on depletes your bodies magnesium. So that is nice because for a while I was taking like 18 mag pills a day. So hopefully that wasn't a fluke and I continue to not need the replacements.

No replacements means less time at the infusion center which is good. Normally I wouldn't care too much because all I do is either go there or be at home. But since I have been feeling better I have adopted a lot of little projects to keep me busy for December. I am working on a couple quilts for some friends, filling out Christmas cards, shopping online for my gifts, I bought a new book that I can hopefully get to soon and I started feeling like cooking and baking again. So I have my little list that is keeping me quite busy these days. I have to say it feels really good to do things like these and not have to just lay down and watch movies all the time. That was starting to drive me a little crazy!!! It is good to do every now and then, but I am enjoying being able to do other things as well now.

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.