taxotere

Neuropathy – terror with a capital N

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I’m not really afraid of much, to be honest, and although I sometimes have to face my fears (driving in snowstorms on icy roads) I tend to just avoid stuff where I don’t feel comfortable (roller coasters and great heights). I don’t mind spiders or snakes or other yucky things. I don’t mind that my hair’s all gone and might not grow back (though that’s for another blog).

But chronic neuropathy – that scares the hell out of me.

Neuropathy is the second nasty side effect I get. It comes from neuro = nerves and pathy = sickness, and basically means that your nerves are ill. The physical nerves. The ones that transmit sensations. The ones that cause phantom pain in amputees. The ones that make your nose hurt when you wax your legs.

Neuropathy in the extremities (feet and fingers) is a common side effect for taxanes. Unfortunately, it can also become chronic.

Let me try to explain what neuropathy feels like.

In case you hadn’t noticed, I love my heels. I love dancing. I love dancing in heels. For everyday wear, I’m more boots and sturdy footwear, but for fun, I used to love putting on my heels and sashaying along.

These are my favourite pairs. Were. Still are but there is no way I will be wearing them for a while. If you look at them – I cheat. They have really sturdy soles that are a great support for my feet which means you can dance all night without noticing that you’re wearing heels!

Now, imagine that the soles are really thin and flimsy, you can feel every grain of sand that you walk on. They still look good but aren’t really all that danceable. Yet you go out dancing, with the flimsy soles, all night long, and you wake up with really sore feet cos that’s part of the deal. All your feet want to do is be kept off the floor. But you go out dancing again, and dance the night away in the same flimsy shoes, and the next day you are in PAIN. Every nerve underneath your feet is hurting, and your ankle is kinda complaining, and you seriously regret both the first and certainly the second night of dancing.

But you love dancing, and you want go out again for the third night in a row – but this time, your feet revolt. They can’t take any more. Our bodies are a bit awesome that way – they will refuse us doing stuff that is dangerous. Your hands are having problems putting them shoes on cos feet = pain at this point.

Instead of going out and having fun, you get in the bath cos you can’t really walk. The soles of your feet are burning. The bath doesn’t help, so you figure that crawling instead of walking is a great plan – except you keep hitting the floor with your burning feet. You drag yourself onto the couch and decide to stay there the rest of the night cos at least the pain is slightly less (although you are having problems concentrating cos – pain brain – not much higher cognitive function there). And the couch is almost as comfortable as your bed, to be truthful, and you don’t really need to brush your teeth cos that demands standing – and that is so out of the question.

That’s neuropathy. And if you got it because you danced too much, chances are it’ll fade. If you get it from chemo there is a very real risk that it will become permanent.

Neuropathy isn’t a diagnosis, it’s a symptom. A lot of illnesses (and meds) can cause neuropathy. Unfortunately – there are very few treatment options. I was prescribed gabapentin/Neurontin which is an anti-epileptic drug. It helps som people. Others get some help from pregabalin/Lyrica. But for a lot of sufferers, neuropathy cannot be treated and the pain is constant.

So yeah, I am terrified of CIPN (Chemotherapy-Induced Peripheral Neuropathy). Every day I have neuropathic pain, I wonder if this will be something that returns in a month or a year for eternal feet burning.

And did I mention it also attacks my finger tips? Try picking up pills with non-functioning finger tips. Great fun and an interesting challenge.

I got some fluffy slippers. I have no idea why they seem to make things worse. Maybe cos the sweat isn’t released out? But I love my pink fluffy socks! Between the neurontin and these marvellous babies, at least I can kinda walk.

F(l)atigue

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I have no idea which silly person decided that the way I’m feeling now, can be described as “fatigue”. You don’t feel fat, you feel FLAT. So FLATIGUE is a much more appropriate word.

And it’s hitting me earlier. For the first three rounds of Taxotere, I had three high-energy (everything’s relative, right?) days and then three flat days. This time, flatigue hit on day three and the first two days weren’t exactly brimming with energy. But  four rounds in means I am at least half-way on my journey with yew. And they keep showing up – I think I may have to plant one or two, to remember this year, lest chemo brain sets in so badly I forget.

That was a joke. A crap one at that.

This is Lurven. If he were a human, he’d be a bit thick, with a beer gut and he would defo be your favourite uncle. IRL he loves stealing voles from the other cats cos they’re yummy (although he is a fierce hunter himself), he’s fiercely protective of his siblings and he just lurves his hoomins. He gets really worried when I’m ill, so yesterday I spent the first four hours of the day in bed with him on my shoulder, purring away as if to keep me safe.

Four hours is how long it took for me to actually scrape up enough energy to think about getting up, actually getting my body out of bed, putting on sweats, and going into the kitchen.

After eating some ‘food’ (with the fungal infection in my mouth, nothing tastes of anything so it’s more a case of finding something I can swallow) I went back to bed and he threw himself onto the duvet, found my shoulder and snuggled back in.

Nice, hard, steady purring. Nice massage. Too f(l)atigued to fall asleep, but at least I could focus on his purring and after another three hours I nodded off.

Today neuropathy set in as well. If you think three is a lucky number – sorry mate.

Or. Depends. I see Karjala is waiting for me to crawl under the bed covers again. Gussi is also skulking around the bedroom. Three cats, one for each symptom. See y’all when flatigue turns into fatigue…

The Mercy Seat – three ways

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(possibly) last gig of the year was Nick Cave & the Bad Seeds at Oslo Spektrum on Monday. I am tempted to go see Laibach on November 11th, although I must admit I am slightly worried about how bad the side effects will be after 5 rounds of chemo and probably won’t buy a ticket until the same day. If there are any available!

Back to Nick & the Seeds. They’ve been on my play lists for close to 30 years now, since Kicking against the Pricks (I think it was the cover of All Tomorrow’s Parties that got me started). Most artists who have been around for decades can be sorted into two: they still make the same kick-ass music they made 30 years ago, and even if you haven’t heard the last two-three-five albums, you know what you’ll get. Joan Jett, Ministry, Nine Inch Nails, Raga Rockers are bands I’ll happily go see cos I know what I’ll be getting.

There is a slight grey zone that included Bowie and Lou Reed, where the style varied but was always great!

Now, Nick Cave (and Einsturzende Neubauten/Blixa Bargeld, cos natural succession, and Haus der Luege is still one of my fave albums ever) belong to the second group. Artists who change their style dramatically over the years, and not necessarily to (what I consider) the good.

One reviewer even called him a “ballademaker” which in Norwegian translates to ballad writer. In Danish it would have meant troublemaker. The Nick Cave I grew up with did not write ballads. He wrote noize. Not as much as Blixa, but it was loud and heavy, post-punk (after The Birthday Party) goth rock.

Still brilliant up until 1997 – The Boatman’s Call marked (for me) the beginning of the end of the Cave I knew.

First time I saw Preacher Man was at the Quart festival in 1996. The most excellent day of gigs (first time I saw Ministry, too), the sun was shining and wow that gig was awesome. I’ve since seen him at the Grieg hall in Bergen (1998?), him and a grand piano and that too was wow – mind blown!

To be fair, the guy is a true master of words and his lyrics have always been dirty, black, dealing with death and religion and war and horrible things with perfection. I love his books. It’s just the music that has become so – ballady. Too sweet. My expectations were, needless to say, not exactly sky high.

And although there were too many ballads, there was also true perfection for old, cranky, die-hard fans such as myself. I love From Her to Eternity. I hate studio-Tupelo but live it is so black and slow and amazing that it is an absolute fave.

But top of the list – The Mercy Seat. The song that caught me in the first place, hook, line and sinker. Got me addicted, got me wanting ever more, in the most amazing ballady version. That is, my kinda ballad – soooooo slow to start off with, slowly gaining momentum, never letting go, never loosening that fiddle that drags it along as I imagine those on Death Row drag their feet on the way to the Chair…

And fitting that it was the day before my 4th round of chemo. Though my “mercy seat” includes great service, all the coffee I could want, food, good company and meds that are making me better.

Cos positive side effect #2 showed itself Monday. Concerts have, for me, been a right pain since my body stopped working. Standing on concrete floors – even if I’ve been moving – has frozen my lumbar region so if there have been bands I want to see, I have to really, really, REALLY want to see them cos after half an hour, I have been in pain, and the concert better be hard enough too be able to knock through that pain.

Not Monday. Monday went great. Back worked perfectly, didn’t crumble, didn’t stiffen, I didn’t have to bend myself gently into a chair after it was over. Yay! Hoping for four more rounds of chemo… this can only get better, right?

Oh, and all the pics are from the Quart festival in 1996 cos seriously, Preacher Man hasn’t aged at all. Probably wearing the same clothes, too…

Rice porridge in da house…

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It’s 10 am on a Saturday morning and the oven’s on. Gonna make me some rice porridge. Not cos it’s a healthy breakfast or anything, but at the moment my mouth feels as if it’s filled with cotton, and my mouth is a bit in denial. It doesn’t think it’s capable of chewing or swallowing or doing much.

Fatigue – when you didn’t realise that there is a whole other world past knackered.

Fatigue is when your body has so little energy that thinking about getting out of bed is exhausting. Fatigue is when you really want to brush your teeth cos cotton and stuff, but the walk to the bathroom feels like a marathon.

Fatigue is having a bottle of Düsseldorf mixture in the bathroom, which alleviates the cottony feeling, but being too exhausted to walk in there and rinse.

Fatigue is watching five eps of Friends in a row, that you’ve seen too many times and Ross is really annoyving, with commercials, cos the thought of standing up from the couch is too much hard work – let alone the actually physical nature of standing up.

Fatigue is trying to write a blog that makes sense, and lose all track of where you were going…

Fatigue is having rice porridge for brains.

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

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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

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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…

Chemotherapy vs the Chemist

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I thought of this title a long time ago. As many of you know I almost majored in Chemistry (I just need to write a thesis) but ended up with a major in Forest Pathology. Today, I realised that it would be better off with Chemo vs the Forester, but it doesn’t sound as good!

Taxus sp. in Rogaland arboretum

For some reason I have not connected taxanes with Taxus sp, although I know that the highly poisonous yew trees have been found to be useful in medicine. I must admit that although I can easily see how Salix sp became Aspririn (in older days, chewing willow bark was found to be helpful against headaches and fevers), I have no idea how they turned yew trees into a highly potent and effective chemotherapeutic drug. Did some person with cancer chew on it?

And it is effective albeit a bad-ass drug. It’s also really difficult to synthesize because of the multitude of chiral centres (Taxol which is another taxane has 11). Enantiomers are bad enough if there are one or two in a chemical formula (see how I brought the chemistry back in?) but 11 – back when I took Organic Chemistry we were happy if we managed to get one right.

 

More Taxus! I love these trees!

Today started pretty early (up at 5:30 am) and with a few cups of coffee, I was pretty much awake by the time the taxi picked me up at 6:55. For obvious reasons one is not supposed to drive or use public transport when getting a dose of chemo! The taxi took me to the medical bus pick-up point, and the bus was awesome! I got this really nice leather recliner so I could stretch my legs properly and was at the hospital at 8:10, long before my 8:30 appointment. As always – spilled coffee on my jacket. Nothing new there.

You probably all know the drill. Sit in chair, have needles stuck in arm and retracted cos they didn’t work properly, moved to bed to take EKG, back to chair, new needle (bad needles today), cup of coffee, blood pressure measured, new needle – three’s a charm – talk with onco and two nurses. Onco clears the room (which kinda worried me) but it was only to tell me that she’s taking a sabbatical from October 1st. YIKES!!! How can she leave me like this???

Nansy of Arguably Venomous Mammals at Northern Green Gathering. Check them out before Soundcloud disappears!

 

Make jokes with support person (SP). Make bad jokes to nurse about vodka in the saline solution (got that first). Get requisition for wigs or headware (whatever that is defined by – a top hat so I can start my steampunk look?) and put on waiting list for make up class (woohoo! Maybe – just maybe – I’ll learn how to do proper make up. About time, I guess).

The meds I’m getting is actually called Docetaxel (dxl) but it’s still Taxotere. Saline was followed by dxl and I didn’t notice much of a difference. Nurse was following me closely to make sure I didn’t experience any allergic reactions, and took my BP at regular intervals. It was pretty close to normal most of the time – apart from that one time I had a new cup of coffee and had taken a large sip! They did tell me to drink plenty of fluids…

250 ccs of dxl and an extra 800 ccs of saline later, I was all done. No reactions, no problems, didn’t notice anything. Taken home by taxi. It’s been raining cats and dogs so I’m not unhappy about not having to brave cars, trains, buses and Shanks’s ponies!

OTOH SP and I had a slight disagreement regarding cats in the room (if they haven’t been spesifically forbidden, how do you know they’re not allowed?), a lot of coffee and laughs. Side effect from tamoxifen: laughing so hard you cry till your eyes turn red. Not sure I should report it.

Got home, snuggled in bed, slept for a few hours, still feel remarkably side effect free. Not sure how long it’ll last but I will enjoy it as long as possible!!!

From heaven to hell (we are now entering phase II)

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Magical purple willow lantern

In 12 hours I will be waiting for my first dose of Taxotere. Taxotere is an anti-cancer (“antineoplastic” or “cytotoxic”) chemotherapy drug and is classified as a “plant alkaloid,” a “taxane” and an “antimicrotubule agent”.

Worst case scenario: chronic neuropathy, myalgia and arthralgia; chronic hair loss and acute nail loss; nausea, diarrhoea and vomiting; fatigue, weakness and fluid retention; anemia; fever and insomnia.

Yay.

Went to the hospital for a new biopsy today. On the way home, a semi had blown a wheel (or something) so we were all stuck in a tunnel for a long time. Long enough for P6 Rock to play both Road to Hell and Highway to Hell. Not sure if it’s a sign of sorts. Happy that DAB radio worked in that tunnel.

Some have asked me why I’m getting chemo before the operation instead of after.

As you may recall, the tumour shrunk dramatically the first couple of weeks. I’ve now been on Tamoxifen/Zoladex for 6 months and it stopped shrinking a couple of months ago. Although it’s still shriveled and deflated, it’s still almost the same diameter as the first time I had an ultrasound (ca 5 cm) so instead of calling it quits with my status as guinea pig (let’s face it, not much use in checking effect of meds after the mastectomy) The Powers That Be want to see if chemo after tam/zol will reduce the tumour more or if it’s as small as it will get.

So we’re entering phase II instead of just testing tam/zol. Hooray! I get to be a guinea pig for at least 8 more weeks! And I can now blame “chemo brain” for everything I forget.