I hadn’t noticed it until this afternoon but now I look at the photo from yesterday I must have been feeling it on my walk yesterday as I only wear gloves in the depths of winter or up at Mt Buller when the children and I go skiing but I’m running cold. Very cold and that’s not normal for me. I normally can’t wear anything to bed and sleep with just a sheet, I have been known to have the window open even on the coldest of nights (something I attribute to growing up in the north of England). But now I’m cold and I’m so cold that my right hand feels like I’ve got frostbite so I’m wearing my leather gloves inside (thanks to my 13 year old son Marlowe who bought these for me with his own money). I also put a photo above of a key ring Natasha asked my 16 year old Cameron to order for her from England for my birthday from Etsy. I’m wearing thermals, a fleeced sweatshirt and ski fleece on top – I am seriously cold but not shivering and my toe on my left foot decided to start tingling an hour ago but that’s now stopped thankfully. My temperature is still 36.3 so there’s no need to head back to hospital just yet.
I’m excited because at least it means something is happening – I am feeling better than I have in a long time – the chemo last week must have done a hell of a job on whatever little disease I had left in my bone marrow and now hopefully I’m getting a little bit of manageable Cytokine Release Syndrome – a little bit wouldn’t be too bad – here are a couple of papers on what would happen if I get too much:
I don’t think I need to call in to the hospital just yet but it means I need to keep an eye on things – and perhaps the 7km walk I did today around the gardens after the 5km one yesterday was pushing things a bit – I just feel so well it’s invigorating. My patient friend Lynn who has kept a watchful eye on me from her home in Hawaii has warned me to slow down and rest and she’s right – this isn’t the time to do too much. With that in mind I’m going to start getting these posts proofed before I post just in case I’m not aware I’m speaking gibberish (once again some might say I often do).
My hospital bag is packed and by the front door and I’m organised if we need to go quickly. I’ve done all my neuro tests and I’m still fine and Nicholas thinks it’s funny to include questions such as who was the lead guitarist in Led Zeppelin. In the meantime I’m going to have a rest and watch the rest of my Octopus Teacher on Netflix which is simply stunning.
14 thoughts on “The Ice Queen”
I’m so keeping all fingers crossed for you Deb and I agree with your friend who says you should go easy atm.
It would be nice to hear first name of your partner unless there’s an important reason why you don’t want to say. It just sounds so impersonal but …all best wishes xx
Thanks Kristina – that’s a very good point – my wonderful partner is called Nicholas – he thinks I overshare enough for the both of us but is by my side all the way through this – I’ll go back and put his name in though (although he suggested I call him Jimmy – can you spot a theme with Led Zeppelin?!).
Something is happening! Yes! Take it hour by hour. You got this. 😘
Cheering you on for a smooth recovery! Enjoy a day of rest. I looked up your show on Netflix, sounds interesting. From Maryland, Barbara
I have experienced coldness especially in the extremities.
In fact, I experience coldness from my ankles down, thought I have a form of neuropathy. I have lived with this 10 years
And still experience discomfort when I walk on hot cement. I have been careful about the shoes I wear about 10 year’s especially sandals and flip flops so popular in California. Watch your blood pressure. Good luck 👍
Perhaps I should have included after first treatment
Temperature deregulation is related to rising cytokines
Oh thanks Brian – fingers crossed that’s what’s happening – I haven’t had issues with it today, really want to get at least a sniffle to know something is going on.
Thanks so much for the update and the great links! More articles for me to read this weekend!
Deb, the CRS article mentions higher ferritin levels as an indicator. Are they testing you for ferritin?
Yes they are thanks Jennifer – next blood test tomorrow (Day +7)
Great news 💜
As I lie in bed in the North East of England with my window open, my 2tog quilt, no heating required, legs out of the bed hot flush, I reluctantly admit I’m probably somewhat addicted to your blog. Probably the wrong words to describe my awe of your participation in this trial, reading and re reading each post and every comment.
I’m reminiscing about your colourful English Lit essays (the handwriting hasn’t changed) that always soberingly had me put away the school book and go back to the piano stool.
Whilst I’m a novice to the theory and science behind your trial, I have just popped in to say ‘good on ya mate’ in my best Geordie Australian accent! I’m cheering you on from a crisp 6 degrees Blyth. I’m having a day working from home and the luxury that is a lie in.
It’s 08:30 – take it easy Deborah Henderson!
Do as the medically educated and personally experienced commenters advise! Thinking of you, spurring you on and sending you the most love, from Claire Silverton… thought I’d whisk us back to our youth through maiden names, stay strong and stay focused xx
Oh this made me smile so much when I read it Claire – and you’ve always been able to write! You just had the added talent of also being able to write music. Happy Days – must dig out that TV jingle we wrote and performed – too funny. Love you lots and thanks for being on this roller coaster with me girlfriend xxx