Saturday, 17 March 2007

Counts are low but feeling good

Well as the doctors predicted my counts are the worst they have ever been - my hb was 104 (below 100 they transfuse me), my platelets were 50 (normal is 150 to 400) and I have already had a platelet transfusion yesterday and my neutrophils were (drum roll) 0.00 even despite being on double the dose of Neupogen for my weight. So hopefully today is rock bottom and I go up from here! As far as how I actually feel - well not too bad really - a little tired but otherwise ok. Yesterday I spent a good percentage of the day asleep. I ended up having a platelet transfusion and they always give me a pre med before a transfusion and it always knocks me out!

On Wednesday I was lucky enough to be allowed home for an overnight visit. It was just wonderful. Amanda picked me up on the way to the library and I went to mums group at the library. It was a fun morning with Tiernan. Then it was home for the rest of the day and I got to spend some lovely time with Cam and the kids. I decided to let Tiernan help me with my injection. He was so excited about doing an operation on mummy and so proud of himself (I put the needle in and let him push the syringe). Tiernan was so gorgeous when I put him to sleep - he said to me "mummy are you all better yet" and I said not yet but that I would go back to hospital and they would try to make me better. Then he said "mummy you don't need to go back to hospital. I can do operations on you and give you needles to make you better and then you don't have to go back to hospital and you can spend all of your time at home with us". It broke my heart! On Thursday we ran out of milk and Tiernan and I walked to the shop to get milk - well he rode his trike and I pushed it from behind as after about 3 minutes he said it was too hard and he wanted to go faster! Then I walked the kids to daycare in the pram which was just lovely. It is funny how it is the simple, normal things I miss the most.
Then mum, Natalie and my aunty Maryann came over and together we did the groceries (again another normal thing I miss doing - crazy I know). Luckily I was hungry and we bought a lot of things for me to snack on - I always try to shop when hungry as I have a better chance of buying snack foods that I hopefully end up eating. We then had pizza for lunch (Cam took a break from leveling the backyard and joined us) and then they took me back to the hospital. Tim then visited as well and we had a lovely time catching up - lots of laughs. Natalie did her blood test to see if she is a bone marrow match for me but it will take a few weeks for the results.
We had a great talk with my doctor Ashsish (well my doctor's replacement - Kerry was away and Ashish is his replacement when he is away). Ashish tends to be a little more giving in relation to information and so it is always great to talk to him. It was an absolutely fascinating talk. It started out by Natalie telling him that he needed to get me better by next Jan as she wanted me to go to Africa with her. His response was basically no chance was he going to agree to me going to Africa and so started the discussion on stem cells. Basically I will be starting from scratch again after my transplant (using my cells). The stem cells will grow brand new white cells (and hence immune system) and it will take time for it to mature. I also need to have all of my vacinations again as any previous vaccines go when I get the new stem cells. So for a long time after the transplant I need to be more careful than usual in relation to keeping clear of germs. Then we started discussing survival rates and success rates. Basically after this treatment I stand a 30% chance of going into remission and remaining in remission for life which means I also have a 70% chance of either the treatment not killing the cancer and/or getting a relapse. With each relapse the chance of another relapse gets higher and that is where your survival rates decline. Hodgkins can occur in lots of places in the body and if the relapse is not in the mediastinal area (chest) then you can actually live for quite awhile with Hodgkins. If however it is in the mediastinal area then the chance of the tumour getting in the way of your heart, lungs or windpipe is obviously an issue and also your body can only stand so much chemo. The bad luck on my part is that both my tumours have been bulky and in the chest area. Then he talked about the fact that if this treatment does not kill the cancer then we would try a donor stem cells because this would actually give me a whole new immune system to fight the cancer. If it still recurrs after this treatment then it means there is some underlying problem with my immune system and its ability to fight the cancer cells at all. By giving me a donor's stem cells they give me a new system that hopefully has the ability to fight the cancer cells. I did a little research on the internet and found amazing stuff they are doing in research. Apparently stem cells each fight a specific thing. They are able to identify which stem cells fight which diseases and they are working on being able to reproduce these outside the body (apparently very, very difficult) in order to try to make cancer vaccines so to speak. Who knows where they will be in the fight against cancer in 20 years.
Back to our discussion. Then we were talking about donor stem cells. He said that they will always pick a male match over a female match as for some reason they have more incidence of graft versus host disease when the donor is female. Then if they have 2 males that are a match they will test the bloods to see which male has the most immunity in their blood and use that one. Then (this is the interesting part) when the stem cells go into the host (ie me) it creates new blood for me and I would then have identical DNA blood to the donor. So if the donor is male, my blood would then show as male blood. Taken to the extreme if I were to commit a crime and the only thing left behind was my blood they would not be able to tell my blood from my donor's blood!!
I found the entire discussion thoroughly fascinating! That is all from me for now. I hope everyone has a lovely weekend.


Anonymous said...

Wow. What an interesting memo today. Have been checking your web each day to see how you are going. Keep up your strong fight
Helen Richardson ( Gayle's Mum)

Sharon said...

How incredible is that info about the DNA!!! There's probably going to be a movie out with that as the plot soon. Will catch up with you soon. (I think i've finally worked out how to post these messages!!) Love Sharon and Phil