Cam and I in WA before all of this
Well I have finally made it through this regime of high dose TMC (Thiotepa, Mitoxantrone and Carboplatin). The plan now is to rest and recover a little for the next few days. Then the plan is
- Wednesday 2 May - stem cells reinfused (just like a blood transfusion)
- Thursday 3 May - start on my daily Neupogen injections for 10 - 12 days
- In about 2 weeks I will have a CT to see if this worked at all
- I will then stay in hospital until they consider me well enough to go home and rest - by that stage I need to have good cell counts as well as being able to get enough nutrition in (this chemo may cause some effects on my gastro tract)
After we get through this then I will be going on to have a second high dose chemo regime called BEAM with another stem cell transplant (my own again). They have warned me that I will be extremely fatigued from now until day 100 post the second transplant and then not to expect normal activity levels for up to 2 years. As this is an unusual situation and they have not given the TMC protocol here before I am a bit of a test case by the sounds of things so we will just have to take each day as it comes.
A point to note about stem cells - Cam was reading a really good blurb about it and thought it might be handy for me to post it here...
What is a stem cell? Stem cells originate in the bone marrow and are referred to as 'seed' or precursor cells. Bone marrow is the spongy tissue found in the cavities of your bones where all of your blood cells are produced. Each type of blood cell in the bone marrow begins life as a stem cell.
The stem cells then divide and form the different cells that make up your blood and immune system. These include white cells that fight infections (leucocytes and neutrophils), red cells that carry oxygen (erythrocytes) and platelets that enable blood to clot thereby controlling excessive bleeding.
Under healthy circumstances stem cells are found in very small numbers in your blood stream (peripheral blood) and in larger numbers in your bone marrow.
Stem cells can be stimulated to increase their numbers in your peripheral blood. This process is called mobilisation. Once the stem cells have left the bone marrow and appear in the blood stream they can then be collected for the stem cell transplant.
The high dose chemo obliterates your bone marrow and therefore cell production. This is when the stem cells are reinfused into your body and they then take 10 - 14 days to graft and start to produce mature bone marrow cells.
Hopefully this will help everyone understand a little more about the process.
So far it has not been too bad. I fell a little nauseous for most of the day but there has been no throwing up and no diarrhoea. The head spins have been controlled with drugs (I take about 20 tablets a day in addition to the volumes of drugs going through my port). The only bad side effect is absolute extreme fatigue. I have never in my life felt so tired. I am spending most of the day lying in bed either sleeping, dozing, listening to music or watching DVDs. I dont even have the energy to feel bored - having to get out of my bed to go to the bathroom is an adventure in itself! But dont feel sorry for me - this is a road to recovery - a road to the light at the end of the rainbow. Sure enough the next few months will be tough but it will be worth it. You never know I might even learn to relax and like it!
If I am feeling well enough tomorrow morning I might be allowed out for a short visit as my mum's group (mum's only) are going to brunch and I would love to catch up with them - so fingers crossed if I get an early night tonight that I will be up for a few hours day pass. On Sunday mum and dad come back from Stradbroke and are going to a BBQ at Ben and Rebecca's - hopefully if I am well enough I will be able to pop over to that for an hour or so as well. Cam is at rescue helicopter this weekend and the munchkins are with Bob and Sue so they will be bringing them in for a visit to me as well which will be nice. So all in all it should be a quiet restful weekend.
The house is getting there a little more now and hopefully next time I am home I will be able to take some photos. We cannot wait to all live there as a family again. We are all missing each other so much but Cam is really great with the kids and he brings them to visit me and puts them on the phone to talk to me but it will still be so nice when I get to go home for good.