Rebecca J
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One In a Million

Rebecca J
Posted by
12 Jul 2014


New form of entertainment: watching the men on the roof opposite. Who are they? What are they doing? It’s all very thrilling, really.

I am very happy to tell you that I have felt very good for the last two days! I’ve been more awake and despite being taken off the 24 hour anti-sickness pump I feel fine! The most unpleasant thing at the moment is peripheral blood tests and taking pills.

Today I found out exactly what has gone wrong to prevent the lumbar puncture. After the doctors tested all the clotting factors it became apparent that there was nothing wrong with them. This stumped them a bit and apparently Charles even said something along the lines of “I don’t understand, I’ve never seen this before”. So next thing you know they are on the phone to a SPECIALIST in LONDON! I am that difficult that they need a specialist! (we always knew I was special… just not in the way we expected… I jest).

Anyway… According to Heather my doc explained what was happening and that they had no results to show what was causing it and he said straight off “has she taken peg asparaginase?” (referring to one of the chemotherapy drugs that yes, I have taken), and he used his specialist knowledge to explain that asparaginase leaves an enzyme in your body that attacks the cancerous cells for a few weeks. That’s the normal bit.
Now to the part where I become even more weird and wonderful.
I happen to be the 1 in 100,000 people who reacts to the enzyme, and the form of the reaction is that it messes up my clotting. And voila! Now we know the root of the problem!

My levels are “on the fence” now, I am on the borderline between ok and abnormal, so the doctors were deciding then whether or not to go ahead with the LP or whether it was too much of a risk. The consequences could be a bleed into my spinal chord and that is not something we want- loss of sensation and use of my legs would not be appreciated.

Have now been told by doctor Tom that it should be fine to go ahead with the Lumbar Puncture on Monday (AT LAST!)
The LP is not really imperative chemo, it’s used as a preventative method- putting in a drug that inhibits the growth of any funky cells in my spinal fluid which is why it is OK to move the dates around or miss a few if it can’t be helped.

Had a lovely visit from some close family friends, some not so lovely guitar playing from Ed (using his ukulele chords on my guitar and attempting some dodgy power chords) and later I am seeing some good friends from church so today has been a very interesting and rather good day