MELBS ESSAY UPDATE (not sure if it's under 1000 words, sorry!) :
Basically I have enough lymphocytes (don't worry just a fancy name for an immune cell) to go ahead with step 1 of the 'CAR T-Cell' trial in Melbourne. Was up there yesterday to have a whole heap of tests done as well as sign paperwork etc. with questions like have any of your past lovers been sex workers and the classic are you sure you are not pregnant 😐.
After flying back to Adelaide this morning will head off again to Melbs on Sunday with Dad where we will spend the week. Monday I will be completely knocked out (as children's hospitals are nice and put you under General Anaesthetic for everything) and have a bone marrow biopsy and a vascath (basically a bigger version of the PICC line I have in now) inserted into some big vein near my groin for the collection of my T cells.
Then Tuesday I will pretty much be a vegetable lying in bed waiting for some results to come back as you can't do much moving with this vascath thing in your groin. I've even been told I can't wear underwear 😥 just a nightie because of the bloody thing. So Tuesday I'm thinking will = Netflix.
If all the tests come back ok, Wednesday will be the day they collect my T cells - and for those of you who want to be extra smart this process is called aphresis (just don't ask me how to pronounce it) and I basically get hooked up to this machine via my lovely undie free vascath where one bit of the vascath takes my blood to the machine, which will somehow whiz around at the right speed to collect the right T cells, and then all the leftover blood and cells come back to me via another part of this charming vascath thing. This aphresis procedure usually takes four hours to collect the cells and if they don't get enough I may need to do a second collection but hopefully that won't happen.
After the aphresis I will part with my dear vascath by some nurse giving me this drug called madazaland (literally truth/drunk syrup as it's better known among patients) and pulling it out and the T cells collected will be frozen and stored until I have that 5% of leukaemia in my bone marrow where they will be shipped off to America to get genetically modified.
And yep I'm scared - absolutely terrified. At Least with chemo and Inotuzumab I sort of knew how it worked - drug goes in, side affects, drug kills certain cells, bobs your uncle if you keep positive. But this is so new and foreign to me and I feel like the world just keeps throwing all these extra challenges my way - I'm sick of being tested, I'm sick of seeing other 21 year olds having fun, looking pretty, flirting, going dancing, having lunch, finishing their degrees, making a path for themselves, not worrying about tablets or booking appointments for your PICC line dressing to get changed, not worrying about how the hell you're going to make your lovely little Afro look not like an Afro because when you were in yr 9 and had the same haircut some people used to tease you about it and not worrying about the lumps that continually start popping up on you like fungus because you are sick, because you have a disease and you have to fight it whether you like it or not. I'm so frustrated and angry and hurt.
But as hard as it can seem sometimes (and believe me it's so super hard somedays/weeks) I just have to remind myself and my fears to somehow be grateful. Grateful that I have an amazing support network of family and friends beside me, grateful that I still have options open to me, grateful even for the fact that my steroid fluid has come down so much I can now fit into my jeans again without busting the zip.
I really just want to invest all my hope into this new treatment and that it will finally work for me, but at the same time I'm so tired of investing so much hope only to be let down time and time again. But what else can I do. One of my favourite quotes is
'When the world says give up... Hope whispers, try it one more time.'
As for that here's hoping cancer finally receives the bloody message #FUCKOFFLEUKAEMIA #FUCKCANCER
