Author: Siri

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.

Change of diet – from spinach to sugar

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I’ve been living on the strictest no-carb diet for three months now. Luckily for me, I do live my spinach and broccoli and lettuce and cucumber, and I’ve even enjoyed my restricted diet. Loads of eggs, bacon and cheese will help brighten any diet and the lack of hot flashes has been most enjoyable. And yes, they did return as soon as I ate anything with more than a whisper of carbs.

But now that I’m on chemo and we’re killing of cells left, right and centre, I had to change my diet. Away with anti oxidants and healthy foods, now it’s all about feeding the healthy cells – and the easiest, best food for them is fast carbs. Sugar!!! Loads and loads of sugary goodness!!!

So thanks to my nutritionist friend, my docs and the Personal Binder every chemo patient gets, the last two weeks I have been gluttony personified.

Healthy eating is important. Healthy means “what your body needs”. The day after my first chemo, I needed a double latte and a gigantic muffin with huge dollops of blueberry jam, yummy banana and some healthy seeds on top.

Seriously. Gluttony is important.

Friday: two gigantic mugs of hot cocoa (made with proper chocolate) and a massive beef sandwich. Oh yes, I could feel my healthy cells loving this new diet!

Monday: these Polish caramel sticks were perfect. Beskidzkie Łakocie paluszki carmel.

 

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.

Recharging my batteries & changing the schedule

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I’ve been off on holiday. I went to England to visit my sisters to relax, recharge my batteries and simply forget about reality as much as possible. We started off with the Northern Green Gathering which was amazing – just a lot of really nice people, kind, loving, generous and amazing.

This is how happy spending time with sis and good friends at a hippie/activist festival in England makes me <3

After a few days of peace, love, rock’n’roll and alcohol, it was time to move on to greener (and greasier) pastures – Bakewell was next! Home of the Bakewell tart, Austrian sausages and two bridges covered with padlocks.

Culture is also a necessity. We therefore descended upon Kedleston Hall which is breathtaking.

During my stay I had three rounds of fish’n’chips (once with Stilton chips and twice with gravy), meat feast brekkies that kept me full until the next day, a couple of pints of proper cider and a couple of glasses of proper bubbly, more cups of tea than I can count and tons and tons of love.

There will be more!

For now, autumn has been turned upside down (slightly) so I’m having chemo before the operation rather than after. I was given the choice and figured that we might as well see how chemo works after 6 months of great results on Tam/Zol.

I haven’t got the dates yet, but sometime next week I should have my first dose of Taxotere. We’ll be starting off with 4 rounds, fortnight between each, which means I have September and October pretty fully booked. After that – possibly more chemo and/or surgery.

And in case you were wondering – I’m not “that” Siri.

More once I get my photos and memories sorted!

 

First time for:

  • watching GoT episode (2 eps)
  • watching Guardians of the Galaxy (vol 2)
  • using the magic bit of my credit card (twice)
  • insulting little old ladies (2 of them, too)

The Food Blog

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Food. Rarely have I been more obsessed with what I eat than the past six weeks. Going cold turkey on carbs (CTOC) wasn’t as horrible as I expected. I guessed that the goal of ‘27‘ would be motivation enough. I just wasn’t prepared for the side effects of no carbs!

My standard meal: fried egg, bacon, apple, spring onion and broccoli on a bed of lettuce and cucumber. Yummy!!!

A night or two after CTOC I didn’t wake up drenched in sweat, which was a relief. This continued for several nights and I was thinking that onco was right – the hot flashes were disappearing! My sleep-deprived brain didn’t really think any further than that. I do not function without enough sleep. When my life was still mine, and I was working, I sometimes had to apologise whilst doing field work because I know I turn into short-tempered bitch if I don’t get enough sleep…

Changing my diet was pretty easy. As I’ve had digestive issues for quite a few years, knowing what I can and can’t eat helps. Main CTOC-foods: lettuce, broccoli, spinach, cucumber, spring onion, apple, celery, chanterelles, quark, reikäleipä, moose meat, egg and bacon.

Which gets really boring after a while.

I can also eat cheese, shrimp, olives and pomegranates. Still kinda boring.

Button mushrooms with egg, cheese and freshly ground pepper.

A few days after CTOC my stomach was as good as it gets, and I was off on an exotic, overseas adventure to Sweden. Norwegians tend to go to Sweden to buy cheap booze, fags and meat. I go to get cheap cat food, tooth paste and allergen-free foods. We’re creatures of habit, always going to the same restaurant (Joe’s Diner) and eating delicious food (Joe’s burger or the Schnizel). I had decided that I was going to pig out on burger & chips and not care that I was subjecting my body to loads of carbs. Even on the strictest diet one should sometimes pig out.

The meal itself was a bit of a let-down. I realised that I didn’t really miss the bun or the chips that much, I felt bloated full rather than just full and slightly unwell. Got home, unpacked the car and was making coffee when the first major hot flash hit me. The next 36 hours were bad – really bad – and I realised that my lack of night sweats wasn’t because the side effects were going away, they were a direct result of going COTC. No carbs, no hot flashes.

The ultimate prawn dish. Bread & mayo not necessary. Lettuce, prawns, fresh dill and cilantro with a squeeze of lemon. So delish!!!

Six weeks (and quite a lot of experimentation) later, I have a slightly longer list of yes-food. I can eat small amounts of wheat in battered foods (fish’n’chips, here I come!), sauces and dark chocolate. Wines and white spirits are ok, beer and brown spirits send me into hot flashes faster than I can write this. I try to keep my meals as crunchy as possible (for some reason that works best for me).

And I’m only halfway to 27. Still in sight, still aiming for the stars!

The soundtrack(s) of my life I

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I’ll be the first to admit that my music tastes are eclectic and pretty boring. After all, the newest band I’ve seen in the past 16 years is Nine Inch Nails (1988) and the newest band I listen to is Linkin Park (1996). I have a bright green mp3-player which is full of music – David Bowie, Linkin Park, Ministry, New Model Army, NIN and Pink (I know she debuted in 2000 but there are  only have 3 songs of her that I like).

Yes, it is a digital player! I am in the 21st century!!!

Booooooooooooring, I know.

Add to that list Velvet Underground/Lou Reed/John Cale, Depeche Mode, Alice in Chains, Laibach, The God Machine and Nick Cave and my goto music list is kinda complete. This list does not include Norwegian bands cos I was lucky enough to have my own record label for the most awesome Norwegian music releases, Siri Rekkårdz.

A large portion of these artists/bands no longer exist. David Bowie died from liver cancer after the release of the Black Star album. Lazarus was released days before he passed – his swan song.

I have to admit, my love story with Bowie started in the late 70s and built up until the release of Outside in 1995. I remember I was sitting in the offices of Norsk Rock Forbund, currently working for Oslo Rockforbund, doing some layout promo shit and the radio was on and they played Hearts filthy lesson. First I heard was  Trent Reznor – then Bowie’s voice – and I was in heaven. I can still remember the goose bumps on my arm, the way my mind just blanked out everything for this amazing musical fix – Bowie and Reznor! Together, in perfect harmony! Damn, still getting the goose bumps and all, more than two decades later…

What’s good? Life’s good, but not fair at all¹

But today’s blog seems to be about Lou Reed. I tend to start writing and then the words take over and sometimes, I end up some other place. Mostly when it comes to music.

I discovered VU/Lou Reed because I read about them in biographies about Bowie. With VU I started at the beginning and worked my way through to the end. Then I started on Lou Reed and John Cale at the same time – Nico was a later interest.

Between two Aprils, I lost two friends. Between two Aprils, Magic and Loss.¹

I got to see Lou once in concert. It was for the Magic and Loss tour, at the Oslo Concert house. A truly magical experience and you could have heard a pin drop. Magic and loss has stayed with me, as a soundtrack, a guide, a raison d’être. It’s kept me going when life has been at it’s darkest and blackest.

Isn’t this something, you’d say, tomorrow I’m smoke¹

I liked Andy Warhol. Lou lead me to him. Andy was a weird creature. I’ve seen more of his films than most people I know. I absolutely LOVE Blood for Dracula especially his use of Wagner’s Tannhäuser. [fun fact: Wagner has featured on Dracula-soundtracks since 1931]. Valeria Solanas founded SCUM (the Society for Cutting Up Men), released the SCUM manifesto and shot Andy in 1968. He survived by sheer luck, but died of cancer of the gall bladder 20 years later. I’ve never read her manifesto.

Release me from the body
From this bulk that moves beside me
Let me leave this body far away
I’m sick of looking at me
I hate this painful body
That disease has slowly worn away¹

I can recommend Ultra Violet‘s biography. She was one of the important people in the Factory, and died from cancer in 2014. If you want to understand Andy Warhol – read the biographies of the Factory people. You’ll learn a lot.

Lou Reed passed in 2013 after a liver transplant.

John Cale is still alive and kicking. He and Lou released Songs for Drella in 1990.

Andy said a lot of things, I stored them all away in my head
Sometimes when I can’t decide what I should do
I think what would Andy have said²

I’ve seen Cale live once. It was at Rockefeller, him and a grand piano and tables and chairs and it was pretty much magic. That Welsh lilt…

I miss Lou and David and Andy. Not that I knew them in person, far from it, but they made the world a little bit better and colourful. And although David Bowie’s my main OST – Reed/Cale/VU lyrics have probably had a deeper personal impact for me.

¹All lyrics from Magic and Loss, 1992
² From “Work“, Songs for Drella, 1990

Wanna fund me?

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Having breast cancer is expensive. I get the meds for ‘free’ but the additional costs – strict diet, anti-side effect meds, new clothes – aren’t exactly welcome since I’ve been on disability (and making less than the EU’s definition of poverty income) for the past two years.

So, I’m trying to make ends meet in other ways.

First choice is “climate quotas” – you buy one or more trees that can suck up the carbon that you’re releasing. You can read more here.

20 NOK = $2.50 = £2 (roughly)

I’ve planted a bunch of trees and you can own one or more. I’ll even tag them for you and you get to see how they grow.

And the price? Cheaper than in your local nursery! Cheaper than a pint of beer!

It’s easy, too. If you’re in Norway, you can Vipps 119276.

For Paypal or other options, use post@titsngiggles.org.