Sunday, May 31, 2009

I checked into the bone marrow wing yesterday morning. It's exciting to finally be here. The rooms are actually a little bigger than the rooms on the "chemo wing" that I was on. They're also more "updated" as far as decorations/medical equipment etc. It's nice to be in a different type of room - any change of scenery helps. They also have a small "gym" on this unit with a treadmill, bike, and weights so I'm trying to continue my walking - although I'm sure I won't feel like doing it in a few days. However the physical therapist is here to work with me and keep me moving (Katie you should be proud). I had some trouble getting to sleep last night - it could be a result of the steroids I am on to help with nausea or just being in a new place. Either way hopefully it will get better.

I had my first chemo treatment yesterday about 4 and it ran for 2 hours. I will get my second one sometime today and *hopefully* this will be my last chemo treatment for at least a very long time. I start radiation tomorrow at 8:00 (which means they pick me up from my room at 7:30) and then I will have another "fraction" (that is what they call a treatment) around 4:00 tomorrow as well.

Thanks for all the cards, prayers, good wishes, etc. that you all are sending my way. While I was home I loved going to the mailbox each day - it definitely brightened my day. Hope you all have a good first week of June (I can't believe it's already almost June), Amy

Friday, May 29, 2009

So I got my new central line put in today. For those of you who don't know what that is it's basically a permanent IV - it's a tube that comes out of my chest that they can hook up to 3 things to. They can also draw blood from it so it keeps me from having to get stuck. So far it's not very sore at all so hopefully it stays that way. My lung test went better on Wednesday so the only thing they are changing is that they are going to shield my lungs a little more during the radiation - they are not decreasing the dosage of the chemo like they thought they may have to do. This will kill off more of my bone marrow which makes the chance of relapse of the Leukemia smaller so I'm glad my lungs were strong enough to go ahead with the high dose chemo. I go in the hospital tomorrow at 8 am and start the chemo. These last few weeks have been great out of the hospital and I can definitely say I'm ready for this!
Also I want to send out a thank you to Ashley Haggerty and everyone who helped at the bake sale. She also has more of the ribbon magnets for $5.00 each - you can email her at if you would like one. Here is a picture (they're actually orange):

Monday, May 25, 2009

Still not much to report. I'm still feeling good except I'm getting low grade fevers in the evenings. The doctors don't seem worried about it and have just told me to take tylenol to bring my temperature down. I'm still worried about them a little but Michael reminds me that I do not have a medical degree and therefore I need to listen to the doctors and not worry about it. Since there's not much to update you on I thought I would explain the transplant process in a little more detail.

I will probably be in the hospital 5-6 weeks. There will be one week of chemo/radiation to kill off my bone marrow then the transplant. The transplant just consists of them giving me the donor's bone marrow stem cells through a normal IV. Then the recovery period is about 30 days in the hospital (plus lots of time out of the hospital). During this time there is a risk of infection because my white blood cell count (the infection fighting cells) will be low from the chemo plus they will be giving me drugs to suppress my immune system so my body doesn't reject the donor's cells. The other risk during this time (and for a while after the transplant) is graft versus host disease (GvHD) which is basically the donor's cell fighting my body. The process of the donor's cells finding their way into my bones (called engraftment) will make me pretty sick (nausea/vomiting, mouth soars - a lot of the same side effects as chemo). After this is will take a long time (a year or more) for my immune system to build back up and for my energy level to be back to normal but I have lots of people to take care of me and help me during this time. So that is what I have coming up. It's a little daunting as it gets closer but at the same time I'm excited that this is the last big hurdle I have to get over. I hope this explanation makes sense and isn't too much medical info I just thought some of you guys might be interested.

Hope you all have a good Memorial Day!

Wednesday, May 20, 2009

Good Afternoon! We got the bone marrow results back and it was clear!! However my lung test was not the best so I have to redo it next week and if it is not better they may change my pre-transplant regimen somewhat. I'm still resting yet walking at least a mile a day as Dr. Rizzieri has suggested. I also wanted to make a post for two more reasons:

First, today is my dad's birthday so everyone wish him a happy birthday! He's getting to be quite an old man :) - Just kidding! Love you dad!

Also, I wanted to let you know there will be a bake sale at Walmart Friday from 3-8 and they will hopefully have orange ribbon Leukemia awareness magnets - a lot like the pink breast cancer ones you always see.

God bless you all! Amy

Monday, May 18, 2009

Hello Everyone! We're still doing good and still out of the hospital here in Durham. I had a bone marrow biopsy today - this makes my fifth one so far and it was by far the least painful. I also had a pulmunary test today to test the functioning of my lungs. We should get results by Thursday from the bone marrow biopsy. The schedule is still to go in the hospital the 30th and have the transplant on June 6. I've really enjoyed the week out of the hospital so far. My taste buds are back to normal and Michael has been cooking me some excellent meals. He is flying back to Purdue today until Thursday to get some work done.
Hope all is well with you all, Amy

Tuesday, May 12, 2009

Good news - I'm out of the hospital and it feels wonderful! This seemed like the longest hospital stay to me so being out is really lifting my spirits. The schedule for the bone marrow transplant has been pushed back due to some conflicts with the donor. As of now I'm scheduled to go into the hospital on May 30 and get the transplant June 6 (my birthday). This will give me quite some time out of the hospital to regain my strength and get mentally ready for the transplant. Although I was looking forward to getting the process started I think these few weeks out will do me a lot of good. The only concern is that the Leukemia will come back during this time but we're hoping and praying hard that it doesn't.

As always I can't thank you all enough for the support and prayers,

Sunday, May 10, 2009

So I'm STILL in the hospital. Luckily I am off the oxygen now and breathing fine and feeling good as well (no fevers). My respiratory problems are also improving daily. The plan as of now is to go in the bone marrow unit next Monday (the 18th) to start the preparatory radiation and chemo. This all depends on getting a clean bone marrow biopsy this week, which I am somewhat nervous about. I am very anxious to get the transplant process started. This is the last big hurdle and also the most critical point in my treatment. The doctors will decide tomorrow if they will let me go to the apartment for a while or if they would rather keep me here until I switch over to the bone marrow unit.

We would also like to thank everyone who helped with the very successful bone marrow drive yesterday. 95 people were added to the registry! A special thanks goes out to Kelly for organizing it all. Thank you also to those who registered - I can't tell you how important this is.

Thursday, May 7, 2009

Well we have another postponement. The transplant will be postoned at least one more week due to the respiratory problems I've been having. When I'm sitting I'm fine but I can't do simple things like get up and go to the bathroom without getting out of breath/coughing. So please pray that they can get this cleared up and get my body ready for the transplant. Having a good respiratory system is very important when having a bone marrow transplant. Overall, I'm feeling better (since I haven't had a fever since Sunday when they took out the central line out).
We knew set-backs would happen but it is tough to go through them. Hopefully in a few weeks we'll be back on track.

Thanks for your love and prayers, Amy

Monday, May 4, 2009

So as planned they took out my central line yesterday afternoon and I have not had a fever since and feel much better! So at this point I'm almost positive that the central line was the source of the infection. I will get a new central line sometime before the transplant. I have had a bad cough which is now the focus. They even put me on oxygen because I can't breathe deep without coughing. The idea of going on Oxygen bothered me at first but it has actually made me much more comfortable. Today I will have a CT scan of my chest and tomorrow they will do a procedure to biopsy "anything" in my lungs. I also woke up this morning with some mouth sores which is surprising because I have not had many problems with them before. Overall, I'm feeling really well - I just need to get rid of this cough.

Saturday, May 2, 2009

So we're still in the hospital. I keep spiking fevers even though my bloodcounts are up so the next step to find the source of the infection is to take out my central line. They will put a PICC line in my arm today and take out the central line tomorrow. Hopefully the infection is in the line and this will take care of my fevers. I'm not excited about having to have a new central line put in, but it's the next step and hopefully it will make me feel better. They're still trying to get me home for a few days before the transplant process starts.

Friday, May 1, 2009

We have a little bit of a change in our plans. Due to the fact that I'm still in the hospital and still recuperating from the last round of chemo they have pushed my bone marrow transplant back by one week. I will be admitted to the bone marrow unit on May 11 and receive a week of radiation and chemo and then have the bone marrow transplant on May 19. This will hopefully also give me a chance to get out of the hospital for a few days before the long stay begins. The only real side effect I am having right now is from the build up of anti-nausea medicine in my system.