Life is not fair

I haven’t posted anything here for a good long time. And to be honest, I’m not likely too in the foreseeable future. Life is too busy at the moment, and posting on my blog comes so far down my list of things to do, it doesn’t even register. Life is not fair will be closing as of today. I’m not going to delete anything, but I’m not going to post anything new. If you want to keep in touch, use facebook. Search for euan.harvey AT gmail.com to find me on there, or send me an email.

Cheers, and God Bless.

I’ve just got an email (well, actually it was last night, but at the speed my brain moves, that counts as ‘just’) informing me that I’ve sold two stories to the estimable Shawna at Realms of Fantasy. Mmm. Stoooories . . .

The two are Leviathan’s Hooks, and Long is the Shadow. (Originally, this was Long is the Shadow of the Moonlit Hills) but I thought the shorter one was snappier. The title of the other comes from Cans’t thou draw out Leviathan with an hook? (it’s in the Bible, dumbass), and has nothing to do with the story at all. Except tangentially. Maybe. Kinda. Well . . . I don’t know, really. It’s that kind of story.

I wasn’t sure RoF would take Leviathan’s Hooks actually; it’s got some nasty horror in it. Not on-screen, but nasty anyway.

A quick update to last night’s post. One of the side effects of vemurafenib is joint pain. I had a nagging pain in my shoulder last night, but I put it down to lying in an odd position on the sofa while watching TV. But last night it got worse and worse, and spread to both shoulders.

Cause? Sleeping on my side. Apparently, the weight of my body is enough to make the joint ache. That’s never happened before, so I’m guessing it’s coming from the drug.

Say what you like, this flipping drug is fast-acting. I’ve only been taking it for three days, and already I’ve experienced medium-severity side effects. I hope I don’t get a rash (fingers crossed hard), but equally, I’m wondering what it’s doing to my cancer. Best case scenario: it’s turned off all the cells, and now my immune system is devouring them all. I’m daydreaming about going in for a scan in a couple of months and being told that my cancer has vanished. That would be nice.

So. I went in to the Royal Marsden on Monday this week to get the results of my CT scan from Friday, and also to pick up the trial drug (vermurafenib) that they’re putting me on. There was some good news and some bad news.

Bad news first. The CT scan showed that the cancer has returned at the site where I had the most recent operation. I’ve got a 5cm axial mass in the mesentery close to the beginning of the small intestine. It’s been joined by a new 5cm diameter mass near my bum. Neither mass is immediately life threatening–but it’s kind of worrying that in the space of four weeks, they’ve grown by this much. If they get much larger, then there are possible problems with bowel obstruction and the tumours spreading to other organs by physical contact. That’s when the oncologists would start taking action–probably more surgery. At the moment, though, they’re just going to leave them alone. There’s no curative surgery remaining for my cancer. Any further surgery will be palliative only.

There was also some good news as well. The rest of my torso seems clear of cancer. The CT before last showed a small dot on my lung, which was flagged as a possible lung met. This latest CT scan showed it hasn’t changed at all, so it probably isn’t melanoma. The met in my brain seems to have shrunk a fraction. At any rate, it isn’t doing anything at all. It’s possible that the radiation killed it. It’s also possible that it’s just been knocked out for an extended period and will return next month. Without a biopsy, which involves a needle going into my brain, it’s impossible to tell.

I picked up the trial drug the oncos are putting me on. It’s vemurafenib, and the research nurse gave me some updated stats on how patients are responding. The average response seems to be that tumours shrink by around 30-40%. This effect lasts for about six months before the cancer starts growing again as the melanoma* mutates to use a different metabolic pathway. But although this sounds fairly grim, it’s actually a breakthrough in melanoma treatment. Which tells you how crappy the standard treatments for melanoma are. On the other hand, this time last year, when the cancer had spread to my brain, the oncologists implied I had three-four months to live. Twelve months later, I’m still here, so WTF do they know, right?

Side effects of vemurafenib include joint ache (none yet), skin rash (none yet), upset digestion (a little), squamous cell skin cancer (not yet–tends to happen in older patients), and photosensitivity. The nurse warned me to use factor 50 sunblock, wear a hat, and use a UB blocking lip balm. She also warned me the photosensitivity would start as soon as I began on the drug. Like the sad fool I am, I just nodded, and thought ‘yeah, yeah.’

I went running today. Day one of week two of the Couch to 5k plan. 30 minutes outside, some in direct sunlight, mostly not. I applied factor 50 sunblock, but didn’t wear a hat. I am now sporting a low-grade sunburn (very red cheeks and forehead). Silly me. I will certainly be wearing a hat in future. A fricken big floppy sunhat. It’s going to look kind of strange, running in a floppy sunhat, but as I’ve been told I look fairly odd while running anyway, I guess I’ll just have to grin and bear it.

*Yes, okay. It’s not ‘the melanoma mutating’; it’s the proliferation of melanoma cells which use a different energy pathway, analogous to the spread of antibacterial medication resistance in bacteria. Happy now, you damned pedants?

SFFworld.com has a nice review of my story Wreathed in Wisteria, Draped in Ivy:

“Wreathed in Wisteria, Draped in Ivy” is an Oriental-themed story by Euan Harvey.  It’s made up of tales within tales within a letter that implies an even larger tale above all.  The letter tells of one man’s discovery and pursuit of never-ending life.  He follows the trail through many hardships and battles and eventually comes to know the secret of avoiding death.  All of this is done in pursuit of vengeance he seeks to serve on someone he refers to only as Noble Lord.  This is a fun quest fantasy outside of the more typical medieval setting, and all the more interesting for it.  RECOMMENDED.

You can find the whole thing here.

Hospital called yesterday. My cancer has the BRAF mutation, so I’m eligible for the extended access to PLX4032/Vemurafenib. There’s a small (10% or less) chance that this will lead to a complete remission. There’s a large chance (70% or so) that it will lead to a prolonged (but ultimately temporary) remission. Still, I’m not going to complain about another 18 months …

I just had the clips out from the operation. My belly no longer looks like it has a zipper. Which is generally good, I think. It didn’t hurt as much as I expected, but even so, it wasn’t something you could sleep through. If I had to choose a single word to describe it, it would be: astringent. Yeah, having surgical clips removed is astringent.

I’m feeling much more mobile now. Stitches and clips restrict the natural range of movement (as evidenced by the little red lines in my belly where some of the clips were dragging holes in my skin), and the dressing just makes it worse. Now it’s all off, I can walk comfortably, and I don’t feel like I need a cane anymore. I’m still not quite right, but I feel much stronger than before.

It’s now two weeks after surgery. Advice about running I’ve read suggests the earliest you can start is three weeks after surgery, but it may be six. I’m going to wait for another two weeks, and then start the Couch to 5k plan (again). The first few weeks of that plan are very gentle, so hopefully my belly will be fine with it. When I hit the 5k mark, I should be ready to start ramping it up more quickly.

I’m finally feeling well enough to start writing again. Nearly two weeks after operation, and nearly a month since I was making steady progress. Back to the grindstone now. And I’m probably going to start by cutting the last 10,000 words I wrote and starting the last act again. Time not writing has given me a perspective I didn’t have when I was slaving over the draft, and I can see the problems–which were the reason why I slowed down on the draft even before the op.

It’s funny how the unconscious mind can see problems in a narrative well before the conscious part of the mind realizes what’s going on. I was having problems writing my daily quota of words for some time before the op, and I think now it’s because I’d planned the middle of the novel very carefully, but left the end sketchy. And of course, it being sketchy meant I was writing to fill a quota, not writing to tell a story. Stephen King claims to uncover the story as he writes, but I can’t tell a story unless I know what the story is. I’ve spent the past two weeks since the op thinking about the part where I was stuck, and slowly moving from despair at how shit my draft was, to feeling hopeful about it, to feeling excited about writing again. But I only realized what was wrong with the story over the past couple of days.

Basically, the last 10,000 words on the novel draft have been sketching, but now I know what the picture needs to look like.

As of this afternoon, I am now enrolled in a clinical trial at the Royal Marsden. It’s for the drug-formerly-known-as-Plexxikon, and is now called Vemurafenib. The drug turns off the BRAF gene, found in about 50% of melanomas. You can find more information about it here.

I’m in no immediate danger, as the only cancer left is in the retroperineal lymph nodes (?), which isn’t going to kill me. Although it could, of course, seed further tumours. So the idea is to blast it now, and see if it stays blasted.

What are the odds of it working? Well, first I have to be bested for the BRAF gene. About 50% of melanomas (so my oncologist tells me) have this mutation. Overall response rate is about 70%, I think, and of those 70%, a few–say 10%–have a “complete response”, meaning that the cancer vanishes entirely. So, before the BRAF test, my odds are about 35% that I’ll have a temporary response, and about 0.14% that I’ll have a complete response. But of course, calculating odds like this is meaningless (as my survival so far shows*), so we’ll just have to wait and see.

* I was diagnosed with a metastasis to the brain in July of 2009. Mean survival with a brain metastasis is 4 months from time of diagnosis. I’m now at 13 months and counting. Molon Labe, Melanoma.