Word of the day: cumulative

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).

The flat blog (cos flatlining would be over the top)

I tend to blog when I have energy. But now that I’m on chemo, there are more flat days and they take more space than before – so here’s the flat blog. Just in case you think I’m happy and energetic and out doing fun stuff all the time!

Second bout of chemo and it’s developing as expected. I spent most of treatment day in bed (cos going to the hospital and spending hours there fatigues me). Thursday and Friday weren’t bad – I’m thinking that the meds don’t really hit the system until day three.

Yesterday I was flat. Not Runaway pancake flat, just flat. No energy. No strength. No inspiration. But this was as expected (after the first bout) so I’d been smart and made arrangements to go mushroom hunting with a friend. Not because I expected to be re-energized, but because I wanted to see how far I could push my body even if I was flat!

We ended up with a really nice, three hour walk. Hunting means straying from the path more often than not so we walked about 2 km and I ended up with 8 kg mushrooms, she probably got twice that. That’s not a big haul in my world. When I was at my fittest I could pick 30-50 kg per trip, but that’s a few years ago – and I am most grateful to have dear friends who will accompany me on foraging trips and pick the foods I don’t have the energy to pick & clean!

Probably one of the smartest things I’ve bought this year. Pink, fluffy, soft, gigantic socks.

Got home and collapsed – slept for five hours. Watched a silly movie and slept for ten hours. Woke up and was void of energy. I’ve noted ‘flat’ in my calendar for the first weekend after chemo. I’ve tried to clean the mushrooms but only managed ten-fifteen minutes at a time. I’ve slept – and slept – and slept – and my feet are in pain. Neuropathic pain in the feet is expected, normal, and quite debilitating – it feels as if I’ve danced for a couple of weeks in flimsy high heels.

I’ve been wearing these fluffy pink socks to try to alleviate some of the pain. At least walking is slightly less painful but I’ve tried to keep my feet off the floor most of the day. And tomorrow will be worse. I asked the oncologist about my disco ball of pain and she told me “That’s a common side effect from the Neulasta, here, have some pain killers“. Preparing myself for pain day – I might actually take a sleeping pill to get through the day.

In the mean time I’m going to dream about my new, favourite boots from Demonia – wow! I’m in luuurrrrrrve!!! Wish list, people. Wish list. You know you want to see me in those.

First round of chemo – first round of side effects

You can read all you want about chemo, but every person’s experience is different so hope for the best, expect the worst, and you’ll find out what you end up with somewhere in the middle.

Most chemo meds require anti side effect meds as well. For my paclitaxel/taxotere I get dexamethasone, a synthetic corticosteroid (two doses before, four after) and one injection of Neulasta 24 hours after the chemo.

And although I’m still waiting for the side effects of my yew meds to set in – I have most certainly met those of my companion drugs.

Dexamethasone gives night sweats. Just as bad as the tamoxifen before I went off carbs. Swimming in sweat all night, waking up every hour or so, four nights of interrupted sleep. Now that autumn (and a chilly one at that) has set in, jumping between hot flashes and cold ones is not much fun – all through the day and night – and me being worried about getting an infection or a cold – not much fun.

But all things pass. Night sweats started on Tuesday evening and I got a good night’s sleep on Sunday. Thursday through Sunday gave me some pretty flat times – of the “I hope I make it to bed before I melt like an ice cube”.

Then comes Monday with slight rays of neuropathic pain in my lumbar region throughout the day. Not bad enough to knock me out, more of an annoyance. I much prefer constant pain – I can deal with that. These lightning bolts were completely different and they got worse as the day wore on.

I’m no stranger to pain. I can deal with constant pain (usually in bed with the duvet over my head) but this – this was really bad. It felt as if I had a disco ball in my lumbar that was sending out shards of painful lightning rather than fancy lights, and not only was the frequency increasing, the shards were getting longer and being sent down into my feet and up into my neck and shoulders and even got my tears going – and that’s a really bad sign. I took a couple of Celebra cos they’re the “nastiest” meds I have and figured that if this was how the next four months are going to be, I am staying under the duvet for the duration…

But the shards dulled slightly after a couple of hours, and although I was completely knackered at least I was able to sleep. No pain, no sweats, just blissful, dreamless sleep.

And Tuesday there was no disco ball.

I have to admit that I have been good and had naps most days – it’s not as if fatigue isn’t a natural part of my life – and I have been very happy that apart from these incidents, I’ve been pretty much side effect free. I have got chemo brain though (what’s new) so memory even worse than normal!

I probably jinxed it now – but we’ll see in a fortnight how things are developing…