So I went back to see him yesterday, ostensibly to get the results of last week's MRI on my lower back. Disappointingly this came back as 'the lumbar odoema shows slight improvement' – which wasn't as big a step forward as I was hoping 6 weeks of antibiotics, 4 times a day, plus the steroid mountain, would have made. Importantly though it feels better than that, so I'll go with the sensation over the scan for now.
And lo and behold, there were still no results from the now-4-weeks-ago back biopsy. So am guessing my sad little Petri dish is as bare as my poor head still is. What a waste of space that was.
And as they say, bad news always comes in threes. So he then chips in with 'I'd like you to have another bone marrow biopsy'. My nose was already curling in its innate 'no thank yuo, those hurt like shit' way, but I did manage to ask why. And I guess unsurprisingly it was so he could compare the percentage of Myeloma cells in the marrow pre-transplant (they did a BMB on me while I was under general anaesthetic for my useless back op on Dec 15th) vs the quantity now, post-transplant. With the hopeful result being that the number would have dropped as a result of the SCT.
So I was just uncurling my nose and thinking 'guess I'm going to have to suck that one up, it was all going too well in terms of how little medical shit there is coming my way, so yes, ok' – when he then added 'and then we'll decide about adding Revlimid to the Dara'.
I looked a bit confused as he had been very clear up until this point that the undesirable but necessary maintenance treatment would mean having a full day of IV Dara at CCL once a month. But nothing else. And that just the Dara would be ongoing until my luck – and remission – next run out.
And now, there he was, saying that the combination of the two drugs might give a better long term outcome. Though of course, no bloody stats were laid out, that might make the decision easier, just the blithe mention of – my much hated – chemical nemesis Revlimid.
This is a crap one for me as it only comes in gigantic capsules which I will never be able to swallow. Or in a format where, yes, I have to boil the kettle every night, get the water to a very specific temperature using our meat thermometer, dissolve the Rev in it and generally fanny about in order to be able to take it. And Rev is not just once a month, it's every day for 3 weeks of the month, with a one week break in between cycles. Oh and of course Rev then come with its own set of side effects drugs, to be taken daily. Basically, it's 'waking up every day to the tablets box' and 'going back on chemo' – forever.
So, a bit of a shock out of the blue. The only way to avoid it is for the bone marrow biopsy score to be lower now than it was in Dec, which I bloody hope it will be, but there is no guarantee in this stupid game. And he said it would need to have gone up on two consecutive tests to then talk seriously about Rev again. And tests are seemingly now just 6 months apart in his book, weird as I've only ever had 2 BMBs. One to help confirm diagnosis in Sept 2008, and the recent one in Dec 2016. So maybe I just need to distract him better, so he doesn't remember to do a further one for another 8 years….
Anyway, it's not an immediate threat, but just fucking typical that there is, what for me would be a huge pain in the arse, lurking around the corner again. And not just a physical daily hassle, but something that would entirely feel mentally like I can't box this sodding disease away again, which is exactly what I'm trying to start doing now, whereby I can hopefully have some good drug-free years of remission and not feel like it's hanging over my everyday life any more than it already does.
Ah fuck it, time for a cheeky post-bath sherbert dibdab while H is out having a late pint with the boys. Revlimid, my arse x