Lumbar pain

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…

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.

When cancer isn’t the worst possible diagnosis

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I had my second appointment with my new physical therapist (LB) yesterday. The first time I went to see her, she asked about my medical records. When I started telling her about all the tests I’ve had over the years, and all the different specialists I’ve been to see, and the mountains of paperwork now acquired, she agreed that it was easier that I just tell her. And as I have a gazillion test results and know quite well what they have (and haven’t found), she could start on the physical examination yesterday.

Good news: I’m still really flexible (she was quite impressed). She even laughed when I made my default joke – that I would be more flexible if all the stupid fat wasn’t in the way – and she agrees that the f*ckwit endocrinologist I went to who claimed that gaining 40 kg in 5 years is normal was an *sshole. She’s also rather impressed that my muscles are as pliable as they are and agrees that if they hadn’t been, I would probably have been in a lot more pain.

Ever since my backpain started, I’ve tested quite a lot of treatments. I’ve had physical therapy (of various sorts), I’ve done belly-dancing, yoga, pilates, hot water exercise, walked for miles in the forest, worked out in the gym. I’ve tried easy workouts and brutal ones. I’ve tried ignoring the pain and working through it. I’ve tested all sorts of drugs – anti-inflammatory (ketaprofen, celecoxib, diclofenac with sodium and potassium, naproxen), analgetics (paracetamol, phenazone, ibruprofen) and opiates (codeine).

I’m open for treatment suggestions if anyone knows of anything I haven’t yet tried.

I had a great neurologist who (after a dozen various tests) ended up with “unspecified myalgia” as official diagnosis, “There seems to be a chronic inflammation in your lumbar region but I have no idea what causes it nor how to treat it” as the unofficial. There were a lot of test results but none of them gave a clear diagnosis. My mitochondria have stopped working properly, I have fatty deposits where there aren’t supposed to be any, and I have muscular dystrophy.

Six years on, I’ve still not found any treatment that alleviates my back pain. I can go for a walk in the forest but that’s it. If I do anything during this walk (ie pick mushrooms or berries, get on my knees to take macro shots of interesting plants or insects) it triggers the inflammation. If I take any drugs, best case there’s no effect, worst case my pain flares up.

There have been a number of signs that my body is worn out from heavy physical work over many years. Torn rotator cuff, chronic latent shin splints, jumper’s knee and tendonitis in both arms, and this sudden switch from fully functioning muscles to mitochondrial disorders and dystrophy. The additional inflammations and uncharacteristic pain when I had the double neck prolapse last year. And yes, the bod stopped functioning overnight, when one day of visiting a number of galleries and exhibitions in London left me in so much pain I was unable to walk after sitting down.

Back to LB. After examining me thoroughly, she gave me the news no-one really wants. The most probable cause of my back pain is that my lumbar column is worn out. The good(-ish) news is that I now have a couple of pretty clear diagnoses to hunt – facet syndrome/facet joint problems, lumbar spine osteoarthritis, sacroiliac joint dysfunction, lumbar spinal stenosis – the bad news is that regardless of diagnosis, my back is f*cked. There are no good treatment options. Between skeletal and muscular issues, I will never have a functioning body again.

I also explained that my neck/shoulder/headache issues aren’t something she needs worry about. I explained how the main problem is that my neck stiffens if I don’t get a good night’s sleep, which causes pain travelling down into my shoulders and up into my head. She seems to agree with this and we decided that unless I get another prolapse we won’t bother too much. I already have the tools and know what to (not) do.

Our goal has therefore become finding tools for me to prevent triggering lower back pain flares and/or manage to deal with them (at the moment, my only option when they flare up is to lie down). I’ll have to make an appointment with my GP so we can start applying for full disability.

 

A new diagnosis in an old body

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My body has been non-functioning for 6 1/2 years now. Still searching for a Norwegian Dr. House. However – the cancer is not to blame for my aches and pains. Even though the tumour is estrophile and I suspect that my hormonal imbalances are a part of my disabilities, the connection ends there.

I did not have cancer in October. I had ridiculously low levels of oestrogen last summer (before I started any kind of treatment, my levels had increased 12-fold…). When I detected the tumour, it was probably a week old. This is probably the reason that it suddenly grew very fast – both in size and density – and why it’s decreased in both just as rapidly.

Tomorrow I’m scheduled for a new MRI. I am rather excited because the tumour seems to have decreased to the same density as my tumour-free breast. So I either have tumours in both now, or we’re talking a truly amazing reaction to the treatment.

No worries – the probability of the former is near-zero.

But no – the cancer is not to blame for my aches and pains and when I’m done with the treatment, I’ll still have a crappy body.