Thursday, January 31, 2013

Ready for Round Two

Next week I’m going back in for the next round of chemo. For me, it is Part B of Hyper CVAD, which my doctor tells me is more intense. I’m not sure if that means I‘ll feel sicker. It means my bloods will plummet more dramatically and there will be a greater chance of needing transfusions. I’m planning to be out of action for about three weeks. At the moment, though, I feel quite well. I’m surprised by how well I feel. I saw my doctor yesterday and said I think we can stop the treatment now. How we laughed! Anyway, I need to remember about recovery when I’m feeling sick. And need to just keep breathing while going through the worst of it (which might be the lumbar puncture and chemo being shot into my spinal fluid).  

I’ve lost my hair. It happened quite quickly when it happened. I tried to hide my head from the children - it made me look sick. I got my head shaved at the hairdressers’ and was glad to be rid of the dead, patchy mess. My children don’t like seeing me bald. It reminds them of the film of Roald Dahl’s The Witches. I’ve discovered I need to wear strong colours on my head, otherwise I look unpunctuated. I’ve been given some scarves, and I’ll buy some more head coverings from an online store. It is quite cold in hospital and I’ll be needing to cover my head to sleep. And I’ll be trying to keep my eyebrows neat.

I’ve been getting prepared for the year to run without me. The children are being more independent, and are doing their chores at home, and being more organised. It will be more challenging as all the extra-curricular activities begin. They’ll just have to work everything out. And so will their dad. Now that the structures are mostly in place, I’m talking to them about what to do when things go wrong, as they inevitably will. Who to talk to, what not to do. Second tier structures.

I know I’ve been saying that I’m having a bone marrow transplant, but actually I’m having an allogeneic hematopoietic stem cell transplant. My donor sister will have her stem cells harvested from her blood. There is no digging into her bone marrow. She needs to take G-CSF injections for the few days prior, to make her blood cells come out of her bone marrow, then they take her blood, do the whirlyjig magic to extract her stem cells, and give her back her blood. It isn’t very intrusive for her. Me? Ah. I asked my doctor what are the chances of me dying this year, due to the procedure. She said my chances of dying are probably less than 10%. The transplant doctor, who I will meet in about a fortnight, might revise that figure. Hopefully revise it downwards. If I went into a raffle thinking I had a 10% chance of winning, I would consider that good odds. And afterwards I have about a 30% chance of having chronic graft-versus-host disease. I need to remember that people can die from lots of causes at any time, and that the consequences of me not having the procedure are more life threatening. My doctor calls my disease sinister. CML tends to turn into explosive ALL and that is what we are trying to avoid. The transplant is my best chance. So, on we go.


Liz said...

Hi Catherine. I hope that round 2 is treating you OK, and that both Tier 1 and Tier 2 structures are holding solid. I was the same with my bald head - hid it from the kids (and even Russell) as I felt it made me look dramatically sicker...especially once the eyebrows had gone too!!I have had SUCH a fraught relationship with statistics since being diagnosed with cancer - too much to say about this to fit into a blog comment. My lovely breast surgeon is forever telling me to try and let go of the stats, as they can't give any definitive answer about what's actually going to happen to ME. Sometimes I manage this, at other times I don't. Here's to all the odds falling in your favour.

Joannie said...

You know you're a legend Catherine! My experience of life has been that you can't pick when the good times or the bad are going to happen - they just do - and you've just got to be there. It looks to me like you are sailing. I've been recently enjoying the pleasures of those plastic covered folders - with plastic insert where you can store all kinds of things. In the last week I've compiled copies of some of my favourite poems and lyrics to some songs in one of these - which is lovely because now I know where they are if I want to savour sometime. Something like this could be nice to have if you were waiting around for the doctors - just a thought. Did you know its a big weekend in Canberra next week if you and/or family wanted to come down you're welcome to stay. Have a look at the program online search - canberra100. Take care and love, Joan x