Obligatory ‘back in chemo’ post

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Where are we now in this rolling machine? Back in for chemo. Cycle five, second to last cycle of this treatment. Managing to keep to a three-week cycle means that it sort of comes around quickly but also those days of waiting to see if my temperature will send me into hospital feel very long.

My bloods had all bounced back, which I’d expected. Though I thought my haemoglobin might be a bit low as I hadn’t been in hospital to have all those transfusions. I was right. But lowish hb isn’t reason not to start chemo, it’s just reason to sneak me in a lil packet of blood to munch on while I’m in. Makes for a slightly longer day but I’m grateful for the top up. And as always, eternally grateful to whoever it was that took themselves in to part with their blood so that I may have it. It’s a system that fills me with love and hope and endless joy. Thank you, nameless donors. And to all the named donors (i.e. any of you that donate blood), thank you too. You’re saving someone’s life and there aren’t many things better than that. And I hear they give you snacks.

They finally had the results of my MRIs too which surprise surprise, show… well… nothing really… The only thing the MRIs can show is if it’s got bigger. Or smaller, which isn’t relevant here as osteosarcoma doesn’t shrink – what it does (if it’s responding to treatment) is ‘ossifies’, which means it starts turning into bone, starting with the outside and moving in. Which is pretty wild to think about. The last PET Scan showed that they think maybe that this is happening, but they can’t be entirely sure. The MRI showed no change, which is what I’d expected as I was pretty sure it hadn’t got bigger. But then again, we never know so it’s nice to maybe know, maybe. No new bad news.

‘It looks like it’s stable,’ said the Kiwi Oncologist who I was meeting for the first time (other than a brief phone call before Christmas) ‘which is really the best you can hope for.’
Yes, right, thank you. I do know that. Huge tumour in my skull not getting worse is my best case scenario. I know the word ‘stable’ is wonderful and what we all hope desperately for, but I’m still coming to terms with all those scary words ‘palliative, inoperable, incurable.’ But when I read them back, yes, stable is the one. Please, can we have stable for as long as possible.

I’ve not been sure what happens next after this chemo regime, but of course I’ll be on treatment of some capacity for the rest of my life, however long I can eke out. She’s not my main Oncologist (he was away), but she did mention that maybe (so many maybes) I’ll just be on monitoring after this until it starts to grow again. The idea of being left with an active tumour inside me until it gets big again and causes more problems, until they happen to pick it up on 3-monthly scans, with nothing to treat it or keep it in check, is obviously scary. But also, it kinda makes sense. Any potential treatment I may have up my sleeve to go on with next will only work for a certain amount of time. I’ve got a friend who has been on TKIs (a new exciting late stage drug for osteo) for a year and is still going strong but we all know that they do stop working at some point. The hope is they’ll keep us alive long enough for more cutting edge options to become available. So perhaps there’s no point starting on more treatment immediately if there’s a chance it’ll stay stable for a little while from this chemo. Gives me a bit longer on the other end.

I’m obviously just scared of when it starts growing again and how much damage it will cause before they catch it and start trying to get it stable again. But as they say, depression is living in the past, anxiety is living in the future. And right now, I’m on treatment that’s maybe working, and so that’s pretty great, really. Clarence thinks it’s great too. So great that he decided to celebrate by jumping in the whirly washing machine with my sheets yesterday and have a bath. I opened the door and he was smiling up at me looking very proud of himself.

In other news, I’ve been dabbling with making eyepatches, so thought I’d show you one:

4 Comments Add yours

  1. Kirralie says:

    Your updates always arrive like a ray of sunshine…raw, real and bright. I’ve been wondering how you are going, so thank you for bringing me up to speed. I’m there with you in Spirit gorgeous girl. Nite nite from Sydney 🌙💫✨

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  2. jenanntuck says:

    Dear Jen What an amazing photo of you and I love the eye patch! Very cool. You could go into business! Good to hear things are stable. It finally stopped raining here I expect you’ve seen the flooding on the news. So nice to see the sun ☀️ Think of you often and sending lots of love and hugs. Jx🤗🌈

    Jenny Tuck

    >

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  3. claire93 says:

    I’d say “no new bad news” is very welcome news! And love the new eyepatch!!!

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  4. Sharon Daly says:

    Thanks for the update, brilliantly written, as usual. Lovely photo. “Stable” is my watchword. Not great, but I’ll take it.

    Like

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