Day +12 – Saturday
I am so much better today – and just to put my sisters at ease I’ve even managed to shower and put make up on so I’m back to being vain with my selfies. Yes I’m going to need a serious facial at the end of all of this. I’m not too sure if they were more mortified about me being back in hospital or my warts ‘n’ all image at my lowest!
I’m feeling alert with no fatigue despite Thursday night’s dramas, Friday night’s 2 hourly obs and today’s 4 hourly which felt like an age- I have slept but I did struggle with a couple of words. I passed my ICAN tests and my handwriting hasn’t changed but at one point I was trying to tell my doctor that I’d reactivated my blog but kept saying reenacted and knew it didn’t sound right but couldn’t find the right word. I was kicking myself later when I did remember. Hard to say whether that’s CAR-T, 9 years of treatment including 2 bouts of chemo or 3 children to be honest…early this year I asked the children what they wanted for Christmas before they went to school and they kept looking at me bewildered until I realised I was mixing up the word breakfast so yes losing words can’t directly be attributed to this particular treatment. One doctor said my bloods looked better than I did and they had a point.
I do feel a bit like no pain no gain though. I have a very high pain threshold – had 3 precipitous labours where I missed the first two stages of labour and ended up only realising I was in labour in the 3rd stage having the babies in 4 hours, 52 minutes and 25 minutes at home (was too fast to make it to hospital with my daughter) so I really don’t feel pain but I certainly felt that 36 hours of pain. I’m a massive proponent of clinical trials – or as Professor Andrew Roberts, of venetoclax fame, would say – “good” clinical trials and I was so lucky that this one allowed me to be with my home treating doctors and I feel safer because of that. It is more scary than anything I’ve ever done and they just don’t understand what expanding t-cells in vivo are doing and I’m the first on the higher dose with CLL here (not sure about globally but this cohort has only just opened so doubt there are many others ahead of me). I was feeling much more like I wanted to be the 200th patient on Thursday than the 1st. I’m actually risk averse – I didn’t even go through the Channel tunnel for years until I was sure it wasn’t going to leak so I’m just not one to take uncalculated risks (and it’s not like the Eurostar was that dangerous!). The worst thing was not knowing how bad the pain was going to get or when it would stop but when it did yesterday lunchtime it disappeared almost as quickly as it started.
One thing which I had done at home was use a blood pressure cuff that I’d bought online – it’s Omron’s Bluetooth cuff (cost $180 here in Australia) and integrates with an app on my iPhone. I looked at the data today and you can actually see my falling blood pressure and rising pulse rate which spiked as the CRS really kicked in and I went to hospital. I’m a bit of a nerd I know but it did give me some sense of being able to monitor myself – I’m not sure what the doctors will think but I’ll offer them the data for the days I wasn’t being monitored here even just for interest
So I’m back in my space ship like room today with the bonus of having some footy to watch and dinner being served in bed – see this hospital lark isn’t all bad.
My nurse tonight is Victoria from Guangzhou in China – she spent 6 years working in Singapore and has been here for 3 years and hasn’t been able to get home to see her family in that time. The level of experience and dedication of all these nurses is incredible and this is currently the only CAR-T centre in Australia and one of very few in the region so what they’re all learning here will put them in very good stead should they ever want to work anywhere else.
We’re both massive fans of Dr Mary Ann Anderson who also saw me today and said if I’m very good, rest and drink lots of fluids she’ll let me go home on Monday. She said the level of CRS I had and the duration of it is what she described as “the sweet spot” – enough for substantial activity to take place or as Brian Koffman would say “the killing spree” to get stuck into my cancer – while not needing more treatment than paracetamol, IV fluids in moderation and penicillin as a precaution while they screened me for infections. I’m on my last lot of IV antibiotics tonight and am hoping I’ll be canula free tomorrow which will make this feel a lot more like a holiday than it has done up until now. I’m back to 4 hourly obs tonight too which will help with the sleep too.
My appetite has returned and it doesn’t look like I’m going to be one of those CAR-T patients who drops a heap of weight after this procedure – but I’ve spoken too soon in this very short journey already…I’ll settle with a cure and having to lose weight the old fashioned way.
And while I have you – this appeared on my facebook history this week. It’s exactly 4 years since the ABC here in Australia did a story on my journey to get venetoclax. If you haven’t seen it I thought you might find it interesting – and it will help you appreciate how little my children were and why I’m so grateful to be at home this time.
6 thoughts on “The Sweet Spot”
Smartarse!! That’s a much better photo!! Again, thanks for all the sharing, even if some of us newbies don’t get CAR-T for a few years yet the docs will know lots more about it by then thanks to people like you and Brian. I don’t want to appear “soft” but we need to have a sleep here – we went to a live play in Sydney tonight!!!!!! I’ll watch the video tomorrow – sleep well!
Hah showing off on so many levels! We haven’t had plays in Melbourne since February 😢. Hope you had a great night and yes important not to treat the periods of wellness as cancer all consuming – once you have a plan I reckon getting on with life is important hence the 3 year absence on this break. Sleep well – I reckon I’m going to tonight and my team just won an epic victory in Perth! It’s a good night.
Glad you are feeling better. Can be a bit of a rollercoaster ride
Thanks Brian – really appreciate what a gift you blogging this process has been to me and hopefully this also allows me to pay it forward.
So glad to hear that you hit the sweet spot! I also love the graph, as I’m a data nerd too! You also bring up a good point: When you’re in pain, and its not clear if it will get worse or better, it must be terrifying. You are so courageous to face this head on. You’ve got this!
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Thanks Jennifer – they were surprised by my reaction but not unhappy. At least it was only 36 hours (knowing how long it might last for would have been helpful with that crystal ball too)!