Back in Space Again

Radiation and the first round of chemotherapy finished on Thursday 21 April. I'm sad that I won't see my lovely radiation therapists daily anymore, but here we are, R, K, and myself, cheerfully celebrating the end of my time at Unit 7. Please take careful note of the Sudoku dress...

There's a cowbell at the reception desk (seen here with big ribbon/thule wrapped on top, making it looks like a tiny bouquet of flowers) that everyone is encouraged to ring when their sentence at RT finished. I shook that thing around for ages.

As my mask was un-clamped and lifted off for the final time, I captured a few patient's-eye-view photos of THE MACHINE's face before getting up. I was reflected in its cornea, or perhaps I was already in there, inside its aqueous humor. Wait, no. I wasn't in there. I could not have been zapping myself, could I? Nein, THE MACHINE attempts to fool me yet again with its clever legerdemain.

What did I look like in the eyes of THE MACHINE? Let's take a look.

My first impulse was to put up a link to the evil doings of HAL, for these photos recall, somewhat, sort of, the austere, retro futurist stylings of Kubrick's 2001: A Space Oddyssey. At least the first one does.

But this whole experience has been so bizarre and enigmatic and scary that I feel it may be just as apt to rip Space Oddity out of ye olde black hole that Major Tom likely got sucked into. *Click the link and let it play in the background before you read on.* 

I have always thought it to be the most terrifying and sad song in the world; I have always been afraid of space and the fullness of its lack (NB this is changing. Star charts up on my walls now). The song still makes my eyes glassy even though I am no longer four, or ten, or twenty five years old. It does, however, retain the the classic Bowie interference of absurdity (the long sliding fart of a tuba at a key moment at the solo's end wtf). That makes me smile. And all the more so now, for within two weeks of Bowie's final departure from this world, Planet 9 was "discovered." (We know it's you, Starman. You and your shameless transformations. Planet 9 is but the latest Bowie character).

Now, imagine floating helplessly away from everything you know. And "planet Earth is blue and there's nothing [you] can do", which could be taken as two separate observations. On the one hand it is noted that the Earth is blue,  and secondly,  it is noted that there's nothing that can be done about the spaceship's circuits frying up and suddenly having to accept that return to said blue Earth is impossible. On the other hand, the line expresses the notion of being helpless in the face of that planet which is blue, as if it were something one might desperately want to change to another colour. As if the blue itself was such an unbearable truth that controls everything we do. It is the home of Ground Control, after all. No matter how you look at it, there's nothing you can do about blue. Until you get so far away from light that you can't see it or the world or anything. The whole universe, your very being, goes black, and even that is not in your control. Oh, Major Tom and your mismatched eyes, one blue, the other a dark opening into another world.

It's a common argument that human beings seem to be discovering and exploring the vast space around and above them, and yet they still know so little about the depths of planet that supports them. Even David Attenborough reminds us that scientists know more about the surface of the moon than they do the depths of the ocean. Speaking of which... Remember The Abyss? The floating that happens therein is not up and away into space, but in the opposite direction, towards the centre of the Earth, down, down into the great blue that also eventually fades into black. Something wrong there. Something.... there's a being there. At one point it stretches long and forward until it becomes a face, a likeness of the humans it approaches.

I thought of The Abyss when I had a face off with my face after my final treatment. I got to take my likeness home. My face from another world. Behold. I think it likes me:

In approximately four weeks' time I will begin the next phase of chemotherapy. I expect tedium, and I do believe that I might miss THE MACHINE just a wee bit. And my friendly neighbourhood radiation therapists.

In other news....

Yesterday the last day of treatment, part one!!! Documentation coming very soon....

"Unwellness"

I thought I'd share a beautiful piece by a friend who has recently been in hospital in Hastings, East Sussex. It's nothing to do with brain tumours - just his general observations about his surroundings and his own experience of illness. It's here.

Burning They

Chemotherapy may leave a metallic taste in one's mouth, they say.

They also say that the sounds of THE MACHINE as it moves around you is a bit like rushing water.

The reality is that chemotherapy tastes like burnt hair.

And that THE MACHINE sounds like a bunch of mechanical parts moving mechanically - somewhat like a machine.

THE MACHINE also causes burning. Hair and skin burn. Cells burn inside, all of them. Necrosis of healthy tissue. Everything is burning and all senses comprehend only this.

In honour of machines and burning, here is one of the classics of ye olde Canadian Heritage Minutes they used to play back in the day. Remember them? I'm pretty sure this one was from sometime in the early nineties - "the burnt toast one", as it is frequently referred to by, well, most of us who had the misfortune of having to watch them between television programs. Definitely a favourite.

Cuts

So, this was what I did after I couldn't stand fluff and stragglies a few weeks ago.

Now, see this nice dark bit of unaffected hair that comes to a peak at the front? I loved that bit. I was pointing to my second-favourite part of my clipper job in this photo, but now it's a pic that also documents the future: that patch has fallen out as well, all those tiny bits of stubble. Gone. I'm currently pretty much bald from the backs of my ears forward. Every bit of proton beam that enters my skull has to come out somewhere - hence the growing exit area on the opposite side of the target zone. 

The pic below? That's my first-favourite part of the clipper job, the (keeping and) sculpting of the long bit in the back. 

Tanks to LUCY BEYNON for This Splendid Poster feat. a Version of Moi

Extended hysterics, constant lolz when this arrived in the post. This is exactly what I am and what my mission in life is and what I am up to now and always. Fuck you, tumour.

Five or so Days of Loss

I'm currently at the end of my sixth of seven weeks of radiation therapy. The photos above are from a few weeks ago - I've just been lazy in posting them.

Right on cue (according to the list and timeline of radiation side effects), I woke up one morning after two weeks of treatment with a burning, tender scalp, and hair on my pillow. Over the next few days it just slid out from the whole target area, with nice clean lines marking where the zapping rays were focused. I even began to fill a Ziploc bag with the hair as it departed, thinking it might make a nice souvenir or something, but I soon gave up and pushed the bag away from me in disgust, mostly due to the peeling scalp that was stuck in there with it. There's only so much I can take when it comes to icky things, and icky peeling scalp and dander bleh all clumped up and tangled in loads of hair is one of those things that makes me recoil slightly. Abjection of own body. I do admit freely that I have always had a smelly scalp anyway, and that my hair basically reeks within a day of shampooing it, but I would always try to not think about it and just let other people deal with it when they brush past or reach in for a hug. Shrug. I don't care. Smell my hair. Take a whiff, if you dare. HA.

But no longer, for about two-thirds have disappeared, and I threw away the baggie.

It was startling, actually, to see how easily it came out, and how it thinned. Thinned. I began to feel uneasy when I looked in the mirror and saw the sparse bits of fluff and increasingly long stretches of incredibly velvety smooth slap-head territory. I never thought that I would be so affected by the process of hair loss. All the support literature I had on hand - it all repeats how devastating the situation is for many cancer people, especially for women, and it encourages wigs and cosmetics and provides general tips for maintaining cultural beauty standards by buying stuff ....... But ....... there's something more to it. A fear that is the fear, I imagine, many men tend to have of baldness. I never truly, fully empathized with that fear. I did not understand it. When your hair glides out of burnt follicles and not even stubble is left behind. I didn't expect. So now genuine solidarity. It was no longer a casual or messy or sloppy boring or intentionally silly look in the ways I usually throw together, but one that was out of my control and almost unbearably hideous. Perhaps that's the bigger issue - the complete lack of control, and for better or for worse I do not like lacking control. That's what this is all about at the core, actually. I don't like that there's something inside my skull that is trying to take over the living organism that is me. Easy to say I should think positively and get on with life and happy and chin up when the reality is that life is getting on with me via a death monster that, frankly, while tedious at best, is mostly a motherfucker and has blades at my throat at all times. So in that sense, relinquishing the need for at least some control is not optional. 

But back, specifically, to the hair. I have always taken charge of my hair and changed it into either fabulous styles, or into outright disasters that I've pretended were intentional because that's just how I roll. I had no fear of shaving the unaffected parts (and leaving a nice lengthy bit in the back), and I'll happily continue if need be. And once the radiation is done (next week - I can't believe it's nearly finished!), it should grow back, even if mutated. I am fortunate.
 

Dead Nature in my Guts

Rotting nature, fixed nature, dead nature.

I eat it, and it dies inside me and will not depart my world. It becomes densely compacted matter, somewhat cork-like, and it sits there because it is the most common side effect of all the medications I currently take. I am packed with the natural world in its edible components and I cannot determine whether nature/Nature has made my body into its tomb, or if it wishes me to suffer for tearing up grass for no reason, or washing too much shampoo down the drain and into the river, or what. For I do suffer. Hideously bloated, heavy, weighed down not only by the heavy heavens above but also by my intestines, full of horrid dry immovable feces that make me sink down into the earth by gravitational force. I cannot rise when my bowels are this heavy. Several litres of water per day and fibre fibre fibre and all the truly helpful foods and things that induce peristalsis, and exercise, exercise, yet nowhere does the clog of toxins go. 

So, they give me chemical laxatives at the hospital. 

(random google image for "laxatives")

And all that happens is ... nothing but a slight softening of the situation. It still sits still, and it's all like, 'Oh, I'm just messy in these tiniest bits&bits of near-nothingness that still barely exits', and the pain and weight and bloating remain, and it's already been a week at this point. So I quit their ridiculous prescriptions and return to my herbal witchcraft, feared by all. Especially medical doctors. But I do not give a shit. I drink my special tea, for they do not understand the herbal world - and what occurs but the joyful release of nature from my confines in the best way I could possibly hope for! Overnight. The special tea contains no high levels of antioxidants, which is the main concern, so why do they give a shit if I don't give (enough of) a shit on their chemical de-cloggers. It is truly a most excellent turn of events, the revival of movement and changing matter and life and nature and love and regeneration and recycling and hippie skies and Wow, the sacred/profane object that happily and comfortably emerges after a nice cup of senna-based tea. Lovely, the object that presents itself in the porcelain void that I stare into deeply, and with great satisfaction.

Unfortunately this will be ongoing, as it comes with the territory. The Great Side Effect. The only horror that is greater than The Nausea. Rotting, fixed, dead. That chemo has to get out though, innit. Its the bubblegum dustbunny that needs to be rotting, fixed, and finally dead - just not in my guts. I want it out. Out. All of it. GO!!!!! Flee, not only you great turds, but the murdered fragments sloughed off my healthy cells that are rife within you alongside your crusty edible nature. Be gone, far, far into the underground infrastructures of this city, and eventually dissipate out in open air, in the atmosphere that will accept your fizzled particles and let them blow away, harmless, never to return. A massive fart, blowing in the wind, gradually fading away. Because when you gotta go, you gotta go. Same shit, same pile. Constipation will not stop the elimination of this cancer, bitches!

Who Wears Pink Sequin Dresses to Greet THE MACHINE? Me. ME!

 

THE MACHINE

Is it surprised to see me? Is it attempting a tender embrace? Is it eager to suck the innards out of my cutaneous covering? Is it curious? Is it going to clap and crush my skull? 

 DOES IT WANT MY MIRROR SHOES. Nobody can have my MIRROR SHOES. 

The First of the Days

Radiation therapy and chemotherapy will be concurrent for almost seven weeks. After that, chemo gonna storm the stage and play a relentless horrifyingly bad guitar shredding solo for an additional twelve months. For the love of all that is sacred and profane, Jesus wept, and it was blood, and his mother was furious, and punched a donkey. Such are the effects of hearing too much bad shredding.

Last Friday was when we began the zapping. Oh, 'twas a fine afternoon, the sunshine lovely, the not-unwelcome butterflies gettin' down and groovy in my belly as I confidently popped my temozolomide before getting out of my mother's vehicle. (Look at my paranoia - I even put on nitrile gloves. And for what! I'm already supremely toxic, ffs).

My sister snapped a shot of me with magical dots in black markers on my hand, and then I happily headed to the room where THE MACHINE was waiting for me. Where my face without my face was already on the table. Where the exorcism takes place. I got on said table and it all happened in a speedy, secret way: THE MACHINE didn't tell me what was going on. It hissed hideous non-sounds at me, spiraled and zoomed around me and literally spun the bed - and then it was done for the day. Out the door into the early spring air I sprang, Day One complete. I'm sure some professionals explained a thing or two to me while I was there, but it was irrelevant. Irrelevant. Invisible sparkles had occurred, and Oh, the beauty of it all! A brilliant start! I felt GREAT.

Then. Three hours later, THE NAUSEA. From what I can only assume was my body telling the temozolomide to get out, but possibly also the effects of invisible sparkles and death rays. I was shaking and sick and vomiting the universe into a 4L bucket over and over and over again. And I'm sorry, body, I really am. It has to be done lest you forget you have a traitor within you, a cellular saboteur that is out to get you. So puke, puke!

But it's all been fine since. No nausea, touch wood. Power of the four dots, yo.

Begins Friday Next

Initiation

So, I went to have my radiation therapy mask made. Photos of part two (the actual mask) to come. But here was the first stage, the moulding of the back of my head with expanding foam that almost scalded one of my ears. When I sat up, the entire foam backing, plastic sheeting and all, were still attached to my head. Such an elegant photograph. 

" it's always night, or we wldn't need light. "

said Thelonious Monk (via Jeroen Nieuwland). And I feel that this makes sense. 


 

blood gloop sparkle steel shards

And after glittering for a few hours before I was set free from hospital, I went home and glowed, a few days later, in warm orange tones.

And sometime after these photos I had the staples removed. I gots no glam shots of that.

2016 = 2013 = 2008

Now that I'm just past my third craniotomy and resection of the bubblegum dustbunny, let's revisit the images my surgeon captured for me back in 2008. I have not asked him to snap any more shots since then, for I don't imagine the appearance of my brain has changed dramatically. And yet, my convalescence selfies are also similar every time (staples, blood, scars, etc.,) except they feature an array of colourful new clothing to further spotlight my penchant for vanity. I will therefore continue with those.

 

The 2016 surgery went smoothly and relatively quickly, and I emerged quite lucid and in control of myself - my thought, my speech, my body and motor control, and my emotions were not affected in the way they were the last two times. I didn't have to go to the ICU and was wheeled straight into my room. I was released from hospital after two nights and part of a restless day, departing with a few bouquets of flowers and a tramadol prescription, morphine no longer possible due to detachment from intravenous drip. Damn. 

What was different this time was that I vomited a blackish-green liquid about nine hours after arriving in the room. I'd taken care to not drink water for most of the day, and I'd only crunched, tentatively, a few slivers of ice. The upsurge of liquid was unexpected and totally unwarranted, although in hindsight I consider it to have been a blessing of sorts: that anaesthetic. It's got to get out. It's the worst part of it all, I swear.

Another thing that was different was that there were markings on my forehead (and a few on the side of my temple) that were leftover from the surgery. Four dots from a surgical pen that are used to mark the spot for, presumably, part of an apparatus that holds my skull in place during the drilling and removal of existing clips and the lifting off of the existing bone flap - plus the use of lasers or whatever mysterious means of targeting beams into my head to construct 3D images to consult while they simultaneously pick around with little tools in my brain. Behold. The four dots (and three on the side, but they rubbed off quickly, so whatevs):

 

I must report with great honour, that my partner in crime very recently had these four dots tattooed on his fuck-you finger, a valiant act of true magic so that the remaining bits of tumour (yep - there are always some leftovers) know they are despised and not welcome. Radiation and chemicals will be employed to sizzle those bits out. But having the fuck-you finger pointed at it will be the ultimate tool in terroring it out of my skull.

And finally, while the pathology of the tumour is exactly the same as it has been since I was first diagnosed, the WHO has changed its naming system. I will miss calling my tumour a Grade II oligoastrocytoma. I am apparently now the host of a Grade III anaplastic astrocytoma. The shift in naming is significant, not because it has gone "up" a grade, but because it demonstrates how much knowledge has been gained in the last eight years: an unpredictable tumour with a few cells showing anaplastic tendencies has turned out to be more unpredictable and dangerous than previously thought. That is, the kid swimming around in the water with a fake shark fin strapped to his back is, in fact, himself strapped to the back of a real shark. Meta meta meta. We have always known this.