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.

Wednesday, 14 March 2007

Want a laugh

I am entering modern times and have worked out (with a little help from Nat, Ben and Tim) how to put some video of the kids up on the net. So if you want a good laugh (they are both little performers) then click on the following link. Whenever I put new video up I will put a link from my blogg.

I had a lovely day yesterday. Nat and mum and Becky, a friend that I have not seen for about 12 years, picked me up and we went to Tiernan's dance class. Tiernan goes to dance classes on a Tuesday with Greta and Mia (Jane's girls). They have a great time and we always wonder how the teacher has the patience to teach a group of 3 year olds! I then spent the rest of the afternoon at home and it was lovely to just be at home. Amanda and Joel came over and picked up Tiernan for a sleepover and I was able to spend some one on one time with Arielle whilst Cam worked out in the yard preparing for laying the turf on the weekend. I made spaghetti for dinner which I thoroughly enjoyed as it is my all time favourite food. Then Cam and Arielle brought me back in here. Today I am going to go out with my mum's group to the museum and then I am getting an extra special night at home - yipee! My counts are taking a nose dive so I am probably going to require transfusions and start getting unwell so they decided to let me have one last bout of freedom!

Monday, 12 March 2007

Forgot to add the photos

I forgot to add some photos that Natalie took on the weekend - enjoy!! There is some video too and if I can work out how to resize it I will put that up here too

What a wonderful weekend

I feel totally refreshed after the weekend. On Saturday I had quite a few visitors (Tim, Jess, Sharon, Cam and Bob) and although I had a few tummy troubles all in all I did not feel too bad. The GCSF injections started on Saturday morning and they do not seem to be effecting me so bad this time. Quite surprising seeing as I am on triple the daily dose that I was last time. I suppose it goes to show that each chemo regime is so totally different on the way your body copes with it! On Saturday night I had the worst sleep possible due to being woken every 2 hours by a nurse on happy drugs. She would turn the lights on each time she came in and by 7am I was ready to kill someone! I was moping in my misery and then at 7.30am my door opened and Cam suprised me with a visit. I was so happy to see him. My levels had continued to improve so they decided to let me have a leave pass for the day (my spirits definitely needed it by then). So I spent the day at home and it was just lovely. Cam was with me for the morning (it was so nice for the two of us to actually have some time together in our new house) and then he had to head up to the rescue helicopter. Then mum, dad, Nat and Arielle and Tiernan came over and Jess, Tim and Ben all visited. We had the most lovely afternoon and we even got to spend some time in the pool. It was the first time Arielle did not complain about going in (probably due to the fact that it was 38 degrees outside). I had such a lovely afternoon. Cam's parents popped in for a visit and Cam came home and then Kylie picked me up to take me back to the hospital. We got some takeaway on the way in and met Amanda and Jane at the hospital. The four of us are meeting up for Sunday night poker games at the hospital however we chatted and laughed until we realised the time was 10.30pm and we had not even got the poker game out yet! We had a lovely night and I look forward to next Sunday night.
I had the most wonderful sleep in this morning until 9am - can you believe that! Today's results were all good and still on the improve. One of my liver function tests is back to normal and the other one continues to improve. I am still on antibiotics but hopefully they will be able to stop soon (they are causing dreadful tummy troubles so I am keen to get off them). I cannot believe how good I feel considering I am on the GCSF injections and I had a week of chemo last week. All the fluids have caused my weight to go up to 48kg (I tried convincing the doctor it was because I was eating so much but they refused to believe me and said it was just fluid retention). With the increased weight and a little colour change from the liver troubles I actually look reasonably healthy! I have been warned that the week probably wont end as well as it started as this chemo is very harsh on counts and that by the end of the week I probably wont be in a good state but I dont really care about that right now - I am feeling good for the moment and I am enjoying it. As I am feeling well and my counts are good I am allowed out on day passes which is nice. I am being a good girl though and am going to take it easy and not do too much!