Month: November 2017

The downward spiral

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Day 27 after last chemo.

27 days of complete and utter flatigue and an insane heart rate.

Every time I have made a movement, my body has perceived it as having finished a marathon. My entire body has gone all wobbly, heart rate has sky rocketed, and I’ve collapsed onto the closest chair-like object. Regaining control of my body has generally taken shorter time than decreasing my heart rate to something that can vaguely be called ‘normal’.

Life for the past 27 days has mostly been dragging myself from bed to the sofa, watching ancient reruns of Bones, Friends, NCIS and Master Chef (Junior). It’s also been numerous crappy reality shows (pawn shows, designer competitions etc) and Border Security: Australia’s Front Line which is actually kinda interesting/entertaining.

I can’t say how annoyed I was when I – last Sunday, ie day 20 – remembered that I have the dvd box sets of both Buffy and Angel. Coulda binged on them for three weeks instead of crappy daytime tv. At least I now have something fun to watch, as it doesn’t seem as if this flatigue is leaving anytime soon.

My concern has been my heart. An increased HR after exercise is normal – but this has been as far from normal as can be. I yawned and my HR spiked past 140 and stayed there for ten minutes. My normal HR at the hospital has been ca 65. The good thing is that once it passes 130, you don’t actually need to search for a pulse to check – cos your entire body is pounding with blood so you can sit still, close your eyes and just count. Dead easy.

The tricky part is falling asleep when you can feel your heart beating, hard, rhythmically, wondering if this is ever going to end. After a couple of hours of 120+ one tends to give in and take a sleeping pill. It’s weird how the rhythmical noise in a MRI/CT machine sends me to sleep, but my heart making the same kind of noise doesn’t – maybe because something in me is worried for chronic heart problems?

The irony in my mother dying of heart failure when she was 49 – and me now having massive heart problems at 44 – has not escaped me.

The skin on my feet is disintegrating so I got an electric foot file. I can actually pull off large pieces of 3-4 mm thick skin that has just loosened – I know, sounds disgusting – but between removing dead skin, filing, and lathering in massive amounts of lotion, we’re hopefully soon back to something resembling normal.

At least my nails haven’t loosened yet but my eyes are still running.

Massi is back on the road (yay!) so we had an enjoyable trip to the hospital for my next scheduled chemo. I can drive. It’s just the walking to and from car, getting in and out of car, and all that stuff that sends my ticker into a frenzy. At the moment I have three options for getting to the hospital: drive myself, take public transport (out of the question for my immunocompromised body), or be at the mercy of Pasientreiser. Seeing as the early shift take great pleasure in changing orders and sending out cars an hour early, that is no longer an option.

It was when I could shower & get ready in ten minutes. I now need an hour just for showering. So – we drive. The fact that it’s a good 300 m walk from the car park to the hospital should be interesting. Seeing as I normally can manage 10-15 m before collapsing, this will not only be a marathon for me, it’ll be an ultramarathon.

Speaking of which. Chemo brain has run out of power even if heart is pounding on at 130. I love my fake-life. tbc…

Round 5 – running out of steam

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It’s been a week since my last chemo and if it wasn’t so exhausting, I would want to quit.

Cumulative sucks.

Onset of fatigue on the evening of chemo. Flatigue set in good and hard on Wednesday. There was no effect of the corticosteroids (apart from night sweats). Heart palpitations en masse (pulse: 115-130) repeatedly throughout the day. Fungal infection but this time I was ready for it – after 6 days of Nystimex, the worst was over.

For some reason, very light neuropathy (just tingling in my finger tips) which is a relief. Or maybe I’m just so flatigued that I’m not registering any pain? I am certainly not complaining.

There are a couple of blogs in the pipeline – if I can just get enough strength to sit at the computer for more than ten minutes at a time.

But yes, still hanging in there, still enjoying the sun through the window.

Word of the day: cumulative

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Yesterday I had my fifth round of taxotere. I can safely say I’m over half-way through chemo! Onco was very happy, MR last week showed a reduction and his physical exam did the same. According to his measurements, it’s now 3*4,5 cm. We had a long chat about side effects and I got a new regime (Lyrica for the neuropathy and Nystimex for the fungal infection – it’s the same as Mycostatin but sugar-free, so should be trigger-free in regards to my perio).

I got the window chair this time! Orchid was dead, but who cares, my stuff is colourful enough. And I have finally found the Perfect Cup – haven’t spilt a drop in a long time with this one!

I also discussed my concerns in regards to Neurontin having such a great effect the first time but none whatsoever the second time (pain management and “head buzz”) and he told me that our bodies react differently in regards to meds and that this is totally normal. Nice to know. I also asked about the fungal infection and whether he thought it originated in my gut or mouth, and he was unsure. He’d also never used Nystimex, so we ended up with a nice microbiological talk about microflora of the mouth.

Stats were good, my white blood cell (WBC, leukocyte) levels are increasing but CRP was at 4 (very low), blood plates and % were normal, good to go for another round. We had a small talk about number of rounds of chemo and the op – we are in agreement that the more chemo I can push into this silly body, the better, and he also agreed that Boxing Day might not be the best day for surgery, but we are now deciding on chemo one round at a time.

Unless I manage 8, in which case there will be 9 and op the second week of January.

Five rounds of chemo means that I am getting cumulative problems. Increased WBC levels (normal levels are 3,5 to 10 but normal for me over the past 6 years has been 11-15). Last week they were at 12, this week 18. It’s the Neulasta injection that increases these levels so we’re still within an acceptable range, as long as the rest of my blood work is acceptable, but definitely a value that shouldn’t increase too much.

My nurse gave me a saline solution to rinse my eyes with. There is a slight possibility that the epiphora may be due to chemo coursing through my system and that rinsing my eyes whenever they start watering may alleviate it slightly. I got several 10 ml syringes. First try this morning – you know how syringes can be really hard to push down and then it just goes BOOM? Left eye not exactly happy with having 1 ml shot in at great speed.

And I am noticing cumulative side effects. The hydrocortisone pills I’m taking no longer give me two energy-packed days after chemo. I started folding and clearing away laundry and managed half an hour before body said “naaaaaaaaaaaaah, much better to write a blog”.

I did start on the Nystimex last night, hoping that it might prevent a complete fungal explosion, although I have stocked up on vanilla and chocolate protein puddings, chicken breasts and yogurt. Apparently one of the protein puddings tastes horrible but as I’ll only be eating them if/when my mouth gets really bad – I’ll use my olfactory memory to remember the best chocolate and/or vanilla puddings I’ve ever eaten!

I shall now try to fold some more clothes. Actually, no, that’s a fib. I shall try to sort clothes into their appropriate drawers and fold them some other day – if and when I have the energy – at the moment I’ll be happy to get all the clean clothes from the hamper into correct drawers…

The book in the photo is “Stien tilbake til Livet” by Long Litt Woon. Unfortunately, only in Norwegian as we speak but it has been sold to many countries and it is highly recommendable! Information, facebook page and a good book review (both in Norwegian).