Thursday 29 September 2016

feat. Yours Truly

Brazilian neurologist Virna Teixeira, currently undertaking an MSc at King's College, University of London, compiled a presentation of my blog at the "Encountering Pain" conference at UCL in July 2016. You can read her abstract here.

May I present to you my vigilante sidekick, the Meta-Bubblegum Dustbunny Destroyer. Thanks Virna!

Thursday 22 September 2016

Festies and Aestivies

Now that the Harvest Moon has passed and we enter the Holy Season of things that die in order to be reborn in six months' time, I return, finally, with a miniature summary of one part of my aestivation in 2016, my forays during the first couple of chemo cycles that didn't get me too down.

'Twas the summertime traveling with the KrukEd Gypsy, pedaling the gorgeous leather goods she makes by hand. She's my super rad sister who took me along and cared for me during her bidniz adventures at various music festivals nestled in the mountainous regions of Western Canada. Really chill. Unlike my fakefueled over-indulgences while being an employee at the same places last summer, I actually slept most nights this time. Not always intentionally, for often I would go to have a lie down for a couple of hours in the afternoon, planning to go out later, but would ultimately end up sleeping solid for twelve or more hours and waking with the sun, flickering anger, briefly, over my deeply enervated state. Marathon naps. Who sleeps through pounding loud raves in the forest from late afternoon til the morning of the following day? With no ear plugs? Or sedatives? Frances Kruk, 2016. It was difficult to make or keep social plans for the nights. Difficult to make plans in general, in fact. Stoopid Toomour. But know what? I think the bubblegum dustbunny actually did me some good for once, because I was forced to slow down, to float more, to smile and to stress less. Sleep is precious. And sister is good. Sister helps. Proud of us. Is this the key to being an effective Destroyer? 

I would wake in the morning and get the coffee going, then float around during the day in the sun with cups of ginger-garlic or spice tea (no sniffles in spite of close proximity to ill people), eyes peering around the vending tent until it was time to curl up again, or to go for a little stroll around the grounds, have some laughs, some sheepish moments, a little bit of humility, all that. I felt how friends new and old are magic and made of galaxies, because they got it, they get it, the need for restful floating. There are good creatures out in the woods, and learning to be chill in the midst of The Crazy is pretty chill in itself. 

Look: here's a glowing copse of trees at Bass Coast:


And here's a glowing shot with the bold and beautiful ladies who share the vending space with KrukEd Gypsy, likewise bosses of their own bidnizes and makers of their own products: Dropping Form Designs and Cabrina Channing Silverworks. So glam:


But wait. Who is the one in the toque, bundled up for the cold that is only felt when one is not dancing? That's right. I am cold-blooded most of the time anyway, but I had to be particularly practical on the foggy, damp, part-drizzly, and, well, COLD night that it was. My heart was warm, though. How could it not be.

For let it be known that I have been mocked for this toque. Called a Smurf. Repeatedly. Even though Smurfs wear white hats and it is their skin that is the colour of my toque. 

No. No, no, NO.
At last year's fests, I learned from the lovely witchy Silverworks lady that having blue skin is an actual medical condition that one can be affected by if they take too much colloidal silver. It is irreversible. Argyria, it's called, from Ancient Greek: ἄργυρος argyros silver. Caused by "inappropriate exposure to chemical compounds of the element silver, or to silver dust." The skin does not turn Smurf-blue, but it certainly has ambitions to achieve that. It is a somewhat greyish blue. It is not......very natural. At all. Turning into a cartoon is not. Natural. And so, I am very keen to disclose, if you hadn't noticed already, that my skin is no shade of blue whatsoever.  I am not a Smurf.

The mockery ends now. You know who you are.

Argyria is also a genus of moth. It is not blue per se. But one might say it does have some tendencies towards greyness, or even...blue-grey. I think we could agree that for the most part it definitely possesses the bright flash of argent, highlighted by uniform coppery streaks across its wings.

This does not apply much to anything, unless we were to posit that the moth consumes a lot of colloidal silver in the attempt to dull its existing silverness and go through a bluing metamorphosis. To eventually become Smurf-blue. There is no way to prove or disprove that said moth takes silver; additionally, the fact that the moth doesn't really have a mouth is not a factor. He may apply salves topically, for example, or dip his body into tiny tubs of silver dust until his wings creak under the weight of the stuff and he ceases to flash, sinking into the ground, greyer, greyer, grey-blue. And blue? Does he ever turn blue? We do not know what the moth keeps in his medicine cabinet, for he hides it in a secret place that only the other Argyria moths are familiar with, and if he ever achieved true Smurf-blue we'd be hard-pressed to find him in the soil, for he would already be disintegrating. If I were a silver moth I would want to stay silver. If I were who I am I would be who I am.

I should note that the moth in the photo above is an Argyria critica. Most Argyria look more or less like this one. I know very little of taxonomy and nomenclature, but it seems that it might not be unreasonable to take a vulgar etymological stance and consider that there might be something going on with critica, with the critical nature of silver, critical being rooted in crisis, even disease: perhaps the colloidal Smurf metamorphosis, or the sickness of coins. Or the misguided notion that silver is essential in order to, supposedly, survive, despite the fact that money cannot be eaten. Unless you want to turn blue - and fer fuck's sake, there are people who would eagerly let their skin change to blue (or their heads, their hearts, their cloudy little souls) in exchange for glorious financial enormity, but, really? Criticise that silver, crisis it. Suspect the moth, boil the dust with white stones, explode the moon, destroy all snails and other aestivators (excluding me but including my head nemesis), and set human beings free into trees, stars, outrageous lasers and parkades loaded with cats and hot tubs, and only then we might end up ending up. And we would all have beautiful jewellery, all of us. Perhaps handmade and found at festivals.

Tuesday 23 August 2016

Love it or Hate it


Okay kids. Just one more time.

What might the little jar of mighty Marmite be saying to the photograph of the Man of the Night's Watch in this photo?
Perhaps something along the lines of the following:

How do you truly feel about me, Crow? Hmmm?
Do you love me? Do you hate me?
Look at me when I'm talking to you! Ya bastard. 
I am far superior to Vegemite, do you understand? 
Do you understand!
Don't you look askance. Don't you look askan-
  
YOU KNOW NOTHING, JON SNOW.

Thursday 14 July 2016

No One Knows

I recently received correspondence from my dear friend HG, in which he expressed his great concern regarding my general well-being. He warned I may be in grave danger. Indeed, I am. But, according to him, for reasons quite different from the obvious neurological perversion I put up with and chronicle on this blog. It's about my little indulgence that I expressed earlier. His warning was illustrated in this little attachment to his email:


I am not sure how I feel about this yet. I clearly know the references. I think most people do. I think I find it absolutely hilarious. And I think we are all guilty of this little indulgence. Who doesn't glue themselves to the screen when this ludicrous tripe is airing? I think I can safely say Not Many. We are all complicit, let's admit it, people. Sooner or later, we all succumb, losing our critical faculties, justifying the hurling of theories of sexuality and power and lack of representation of common people as anything more than savages, as well as problematic notions of authenticity, out of all the windows and doors. What do we want, really? What do we want.

Ready, set, HEADS IN THE SNOW!!!

Friday 10 June 2016

Chills and Dust


My body was given one month to recover from the first round of treatment. Happy birthday to me. And now, I have just completed my first five days of adjuvant chemotherapy, which was meant to begin a week before but had to be delayed due to low white blood cell count. I took that glorious month of rest time to do not much resting, lose a bit more hair and most of my eyebrows (“I never really associated you with eyebrows,” a friend commented when I expressed concern over the loss of that which was historically quite faint but had definitely gone) (But I now have five o’clock shadow over my eyes: them brows be coming back again!). And thennnnn, I got the chemo rash, and then continued to procrastinate on correspondence, and finally, I did something I rarely do: watch television. I did not last long with that, except for the fairly uninformative national news. Well, barring the in-depth coverage of heartbreaking fires consuming the everything of people in the north of my province. Those images which on the news might seem to be mere disaster porn on repeat are already on repeat in the minds of the evacuees as they were forced to leave everything behind. I have trouble comprehending that. I cant. It is outside my experience. I’ll have to let this go at the moment and get back to complaining: Television otherwise continues to grow more abysmal all the time. I attempted to watch a few DVDs, but there is little available in this city with its small-town mentality: romcoms and superherosuperaction movies are the bulk of what is here, with the occasional proper film floating about. What did I write about in my last post? The Abyss? Even that has to be specially ordered in to one of the few remaining chain stores that still sell discs of plastic containing digital entertainment for those who don’t have Netflix or iTunes. Why. It wasn’t that bad that not a single place in the entire city doesn’t stock it. Imagine, a major Hollywood production like that. Mr Big Budget James Cameron. As for watching films online, free streaming from YouTube and dubious sites on my increasingly obsolete and slow computer can only be done within relatively close proximity to The Inept Internet Box, to which I have no choice but to be hardwired to, for there is no WiFi in this establishment in which I dwell. It’s not very comfortable sitting upright in an office chair and squinting at a film on a tiny smudgy screen. That’s a university thing that I am quite finished with because, frankly, I don’t want to be reminded of how much it really sucked in my college library, where I had to sit to watch films (for research, seriously) on my laptop with headphones on, unable to actually leave and take the DVDs home because they had to be returned promptly the next day lest I accrue hefty fines. It already cost me £15 and most of the day on trains just to have the privilege of visiting my pretty but decidedly not within-London campus. Almost all the other University of London campuses are in London, why was mine out in the boonies at the top of a massive hill. And to add insult to injury, there was not a decent cup of coffee to be found anywhere in that damned town. On one of my returns to the UK from Poland somebody accused me in that ever so condescending British I’m-joking-but-actually-I’m-not-but-really-I-am-but-in-truth-I’m-serious way of being most definitely European, that I hadn’t been in Britain long enough, and all because I preferred coffee over tea. Fuckin’ too right, mate. Tea is for wankers. Don’t choke.

I don’t want to be reminded of the library that was packed with tables arranged for group work that was supposed to encourage open communication and prepare particular kinds of students for “real world” networking and team building. Quite successfully, actually, considering that all that many of them would do is blather to each other about what they’ve been doing on Facebook and who totes puked in the craaaaziest place the night before and all the other sniveldrivel that they straight-laced ordinary students go on about when they’re not busy not doing any work until the very last week of the semester and then eventually graduating, getting a menial office job because their degree has become irrelevant but they don’t care because they are used to (unfortunately) a lifetime of settling for mediocrity, and then eventually having children to whom they can hum the tunes of daytime television to and et cetera. Is this arrangement of tables and the ensuing chatter not actually what “real world” networking is, meaning that these students are well-prepared to gather around proverbial water coolers before they even get out into the “real world”? Yes. But in which case, how and why did this shift in the point of higher education occur? Oh – ‘tis for the snatching of horrendously hiked-up tuition fees and little received in return except business advice. And, of course, the piece of paper. Yeah, I fell for it too. But I rebelled slightly and managed to read a book or two – with spines. And notably, I am proud to say that I, thirty-five years of age and surrounded by gadgets, do not know how to make a PowerPoint presentation, for I held my be-bogeyed nose high in the air at every Presentation Skills Workshop that had to be attended. I actively refused this new knowledge, so-called. I now know that is the point of higher education these days: To refuse knowledge, so-called. Embrace information, for who needs knowledge? Knowledge is covered in dust and gloom and stale silence where human-shaped things hunch over desks and sometimes it is not readily visible whether they are alive or not. But they process, and they research, and they think. And while I am sloppy, and always have been, and my academic writing and critical capacities are admittedly limited and very embarrassing, and while I procrastinate, and always have, I have occasionally been known to at least make the effort to involve myself in the stale silence and gloom and dust, and read.

And watch those DVDs – always relevant to my research, of course. The films we watched back in our flat were nothing but the highest quality trash. The Wasp Woman, for example. But in college I watched and re-watched the filums (as my Irish high school history teacher would pronounce it) that helped create the background noise from which I eventually drew tiny droplets for the larger project, my book.

So, to continue my tirade against the relative unavailability of a large enough screen (stoopid compooter) and large enough selection of trash and art films… I realise that I’m just having some little, itsy bitsy bougie complaints over here, as if the world was not dying and nobody was suffering under any sort of tyranny. Not much else. I saw Money Monster at the cinema with my family recently, and it only offered a disappointingly half-hearted critique of the corruption that has obviously been the basis of global capitalism for, um, a long time. I did not appreciate the way the hostage-taking white domestic terrorist was portrayed as what the upper classes assume that poor white people are – slightly stupid and very sloppy. And the little touch of a late scene where “he can’t breathe” is shouted out when some pigs shove a man to the ground in typical pig fashion was a nice touch, except that it was only a mere tiny jab at the recent cases of police violence that have been coming to the general public due to the existence of social media. Too little too late. Take it deeper and to where you really should (or likely may have wanted to), Jodie Foster. But then watch your film drown as the big money behind it is withdrawn by its funders, who, just like your "fictional" characters, themselves probably benefit from the sort of algorithmic sneaky stock market gambling and scabbing and all the rest the films depicts. Or perhaps I'm being unfair and overly cynical. I guess to her credit there are an awful lot of people in the “real world” who place so much trust in corporate greed that they don’t know it’s deadly corporate greed, that is, they don’t know they don’t know, and a movie is required to suggest a tiny truth. Something something something water cooler tragedy. Such hopeless hopelessness humankind is. 

And then there are a couple of independent cinemas to which I could go and see the occasional good film. But I lack funds for that, and often I’m lacking physical energy so let’s disregard this point. I mean, it might have been interesting to at least see High Rise, despite the grumblings about it. But it didn’t happen. I’ll have to deal with sitting in the office chair – it’s all I can feasibly do. That and watch period costume dramas and silly fantasy stuff on the television such as Game of Thrones, because it is strangely captivating in it’s outlandishness and excessive amounts of exposed mammary glands. The whores and bastards and more whores and bastards in power. What a banal circus. It’s exhaustingly repetitive and predictable and satisfyingly boring in a way that I don’t allow other television programmes to get away with. I still can’t keep up with the names, tho. All I know is that a Lannister always pays his debts. Also: dragons and swords.

Something I do enjoy is reading, when I can focus, and also receiving stuff in the mail, like books and correspondence. I’m not always very good at returning it. Unfortunately I’m quite adept at feeling guilty, and then I get stressed, and then my life resumes to its usual tumbleweed status, growing larger and larger in violent tangles and speed as it pitches itself across sandy surfaces. Just because the letters for cancer happen to be in Frances doesn’t mean I have to go tumbleweed. But I extend apologies to those whom I love and who are supporting me and sending objects or thoughts or vibes n shit from whichever area of the world they are in. My anti-tumbleweed struggles are legitimate and necessary – I need some calm. Of course, at a certain point it can’t be an excuse for procrastinating, but for now I just need a bit of CHILLAX TIME WITH DAVID CAMERON AND HIS FAVOURITE BAND THE SMITHS. Dickhead. Anyway, here I am, chillin’ out with some of my good peoples the other day:


Ah, the memories of the happenings of Weissness at Tottenham McDonald’s, featuring Brueghel, spiders, swine, and brilliantly unsavoury images of corpses breaking up and out from beneath floorboards to demonstrate triumph. Reminders that there is a world out there that is not the “real world”, but the most impossible – therefore possible – world that exists and must exist and must be brought to further existence with the art and literature that inform and are informed by revolution/ary thought and history and making. The “real world” is a monster that needs slaying. The “real world” is also full of the nausea, the continuing and constant taste of burning hair at random moments, the fatigue, the inability to bask in sunlight. Sigh. I’m waiting to see if the post-chemo effects I had a month ago will return. Perhaps not. Perhaps I will be fine until next month, when I do my next five days. Perhaps the ensuing twelve months will continue to be merely uncomfortable and inconvenient (god, I hate the nausea and the itching), rather than painful and blighted with whatever may attack me in my immunosuppressed state. The monster needs slaying (I’m working on it) and the more I immerse myself in making (I’m working on it) the closer to breaking the “real world” I’ll be.

On another note. There is a tiny piece of white thread sticking out of the corner of my incision, and it’s been there since my surgery, the 9th of February. This leads me to believe that whatever they used to sew up whichever layer beneath my scalp is not actually a dissolvable stitch, so what the fuck is going on. I keep waiting for it to just drop off. Months go by, it does not drop off. It’s still there, a piece of artificial hair. Somebody was taking the piss in the operating room. Any advice? If I pull it will the incision zip open? Ugh.

Thursday 19 May 2016

Happy Anaplastic Astrocytoma Day!

Canada, and more specifically its Brain Tumour Foundation, has decided to fall in line with the Americans again: May is the new Brain Tumour Awareness Month. So much for the Holy Month of October (although I do very much respect the mammary aspect of that month)I shan't fountainously spout my bile over the various little nitty-picky problems I have with this example of Manifest Destiny, assuming the spellings of grey and tumour shall not change to the rather appalling gray and tumor, and instead I choose to simply celebrate my "own" tumour day. For according to the Foundation's Brain-Tumour-a-Day-in-May schedule, the 18th of May is reserved for Anaplastic Astrocytoma. Very well. It would have been, once upon a time, the 4th of May: Oligoastrocytoma day. Well, grade II no more. Onwards.

To mark this auspicious day I spent some time taking selfies with my radiation mask, including being silly and putting her on the back of my head. Little did I know what would transpire from this - I was just trying to document me hanging out with myself in the sunshine. But I couldn't actually fit sunglasses on her, and headscarves and hats were looking foolish, so I stuck some earrings in what initially appeared to be her general ear location but is actually nobody's ear location, especially visible after we united heads. We've got a mysterious drop of amber at the base of our skulls...

Then I had to give her a name, and there's only one that I kept coming back to. Becky. Why? I have no idea why, and it's a bit embarrassing, but it's the first thing that came to mind when I looked at her this morning. And then I couldn't shake it. We couldn't shake it. I had much more symbolically suitable names in mind, people who are dear to me, who have protected me in the past, people who are brilliant, people who are ridiculous. But no. Becky. Not even ridiculous, just dorky.  Fine. So be it.


And then I sat down to write this and I thought, mein Gott, yes, yes, of course! Because  Rebecca is actually my middle name. It's true. Becky seemed dorky, but we all know that I am dorky too. And if it is a diminutive of Rebecca then I am willing to take it on board, because it's elegant and I wish to be in an elegant mask, even if in it's dorky shortened form. We look in different directions at the same time.

I should have known something like this would happen. 

The universe is telling me that I am all, and I am none, and I look in both directions because I am Janus. That's right, bitches. I preside over and through binaries, I am a conductor of transitions, I am all the liminal spaces and means of passing through them. I have eyes in the back of my head. I see backwards into the future. Frances Rebecky. Janus. Kruk.

Thanks for keeping me still during radiation, Becky. You are one of my lifesavers. 
Let's continue beginning, and here's to many happy returns.

Monday 25 April 2016

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.

https://www.youtube.com/watch?v=xNLtPLFECNw

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.

Friday 22 April 2016

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.

Friday 15 April 2016

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. 


Thursday 14 April 2016

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.


Tuesday 12 April 2016

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.