When will life be normal?

I see that I am being very horrible at updating this blog. It is a little more than ironic to me that while I was going through all the chemo and radiation junk I updated almost daily. Now that I am home and not doing too much I find it is one of the most difficult things for me to keep in touch with people. Not only through this blog but also through phone calls, emails, letters and visits. I feel like my brain is just not there and when I go to do it I just lack the inspiration.

To be honest I have not felt like myself in quite a while. While I was going through all the chemo and pre transplant stuff I had to deal with a lot of changes. Losing my long thick hair, watching my muscles shrink smaller and smaller and losing quite a bit of weight (although I didn't mind that too much (:   They were all changes that I had to deal with and get used to, but I still felt like myself. Wigs and scarves adorned my now bald head and most of my clothing covered all my scars and the central line that came from my chest. All in all I looked pretty much the same and felt good and confident when being around others. I could wear all my normal clothes, which I love looking nice and shopping for cute clothing. That whole realm wasn't too much of a change. It was the one thing that felt normal in a not normal world for me.

Since the transplant and all the wonderful GVHD issues, I have been placed on this wonderful medication called Prednisone aka: steroids. Now I am sure by now you all know how much I love this med due to my numerous rants on different posts about it. I have thought time and time again that next month I am going to be off of them and the months and months keep going by and still I am on them. They make me feel somewhat of an "alien" as another transplant patient put it. My face has swollen to three times it's normal size and my whole upper body has also swollen as well. I can no longer wear my normal clothing so I now live in sweats and pajamas. I wear my UGG boots even in the warm weather because they are the only thing that it large enough to accommodate my feet when they swell up by the end of the day. I would be lying if I said I wasn't a little more than frustrated at this point. My skin has stretched so much I now have these massive stretch marks on my stomach and arms. I am still so thankful to be alive and be able to have gone through this with not any huge complications. I remember that every day. I am just ready to feel like my normal self again. Or at least have my appearance look like my normal self again because then I think I will start feeling like myself in other ways. I am learning I still have a ways to go, so I guess the best I can do is take it a week at a time and know someday my doctor will say those wonderful magic words that I am off the prednisone. Till then I will have to deal with feeling not my norm for a while.

Where do I Begin?

Well just as I have titled this blog post I am having a hard time knowing where to start. I should be more diligent in updating this thing then I won't fell overwhelmed when over 3 weeks have gone by and a million things have happened. But to tell you the truth everything happened so quickly that time just seemed to slip right by. I am going to try to remember what I can and give everyone a little taste of what has been going on.
Shortly after I wrote my last post with some good news I woke up just a couple days later not feeling that great. This sickness continued through the weekend and then that Monday I went into the ER. I was having persistent nausea and vomiting and a horrible headache that went along with it. After spending 16 hours in the ER they finally transferred me to a hospital room. They then informed me that after doing an x-ray of my abdomen they discovered "free air" in it. Which I guess is a very serious thing and can mean immediate surgery. So I had a surgeon team checking on me every couple hours seeing if I was getting any worse to know if I would have to go to ICU for surgery. I was a little overwhelmed thinking, "what in the world is going on here?" Through the next few days my symptoms didn't worsen and I actually continued to get better so they were ruling out the "serious" thing they thought it was. Fortunately I didn't have to undergo surgery and they were a little baffled at what caused this. In the end my doctors said it might have been an affect of the transplant and they have only ever seen this in one other patient. Another miracle that we can only give credit to God for. So along with all that fun stuff I had a ton of tests and procedures done to make sure the nausea, vomiting and headaches were not more serious than just a spell. So bring on the x-rays, CT scans, MRI's, lumbar punctures and stomach endoscopy's. I defiantly had my share of them the 12 days I spent in the hospital. Fortunately everything always came back clean. They switched some of my meds around and it seems to be helping my headaches a little.
I have been home for 2 weeks now and things have been alright. I have been having my ups and downs. My energy level isn't super great and I have been resting quite a bit. The other not so great thing is they had to up my steroid dose quite a bit again. I broke out in the GVHD rash pretty bad, so to get it under control they had to increase my steroids again. I am tapering them down but it wasn't that much fun going backwards. Hopefully it wont last long and I can get off of them without any more flare ups soon. I am ready to get rid of this swelling and muscle atrophy pretty bad. But my blood work continues to look good every week so that is something to be thankful for. So tomorrow I go and get my catheter removed from my chest due to it shifting inside and get a picc line put in my arm. So it seems that there is never a dull moment and I continue to take it one day at a time.

4 Months

This Sunday is going to mark my 4 month mark post transplant. Time is going by, sometimes I can't believe it has been 4 months already and other times it feels like an eternity. Sorry I haven't been writing very often. I have not been very inspired with words lately. You don't know how many times I have sat down at the computer in the past few weeks and attempted to write a blog entry and my mind is just blank. My life still isn't that exciting and consists of a lot of time at home. I am still keeping myself pretty busy by adopting lots of sewing projects and have started compiling all my recipes onto 4x6 laminated cards. It is nice having the time to do these fun things that I never had the time to do before because of work. Still it is hard every now and then not having anyone my own age around since all of my friends are in Montana. But I am glad that I have an independent personality because I could see how it could be a lot harder if I wasn't independent. I enjoy doing things on my own probably more than most people.

As for the health side of things, I am doing pretty good. I did have a little spout of feeling lousy about 1 1/2 weeks ago. I was having some stomach issues again and was vomiting up almost everything I ate. My energy level also took a dive and I was resting in bed for several days. Let me tell you it was not very much fun going through that junk again. It made me appreciate how good I have done for the most part in not having to experience it as much as others. When I saw the doctor last week he thought my stomach issues might have been due to him putting me on a different medication. So he switched it and this past week I have been doing a lot better. So hopefully that is what was causing all those problems. I saw my doctor again today and he switched some things around so we will see how things go over this next week. The one thing that is lingering now is this wonderful rash on my skin that wont seem to go away. Due to this I am still on prednisone and probably will not be off of it until this rash resolves itself. So pray I can be diligent in putting the cream on and that it will resolve itself quickly, so I can get off this "devil drug". After I am off the prednisone they said I can start introducing fresh produce back into my diet. If you can believe it I haven't eaten raw produce since May 2008. I miss it and can't wait to start eating it again but after so long of not having it, it does become second nature to not think about it too much.

I did receive some good news at the doctor today. He decided that I only need to come in for labs once a week now. So my only trip to the infusion center is going to be Tuesday's. I will get labs drawn and then see him every Tuesday. I count this as a milestone because that means that my blood work had been consistent enough where they aren't worried I am going to need replacements. I also get next week off from seeing him for "good behavior" or maybe the fact he forgot he wasn't working next Tuesday. Nonetheless I don't see him for another week and a half. I am hoping by then the rash gets a lot better and he is able to reduce some of the meds. I also just wanted to mention that last Sunday was the marathon for the Leukemia and Lymphoma Society that Mike and Dawn have been training for. They are truly a incredible couple and can't thank them enough for all the hard work and many, many miles they put in training for it and running the actual race in my honor. Thanks to everyone who donated towards it, your contribution is going to go towards research to save many more lives. Thanks Mike and Dawn!!! Congrats on all of your hard work, I love you guys!!!

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.