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I CAN (NOT) DO IT MYSELF.

The above picture is as close as I can come to showing what I mean when I say my vision is blurred. Usually it happens with no warning and lasts anywhere from 30 seconds to a couple minutes. Unfortunately, I can’t do a picture of the staggering that occurs when I’m dizzy but imagine the walk of someone who hid in a bar after closing time and kept themselves well lubricated into the next day. Possibly someone with wooden feet.

So, reluctantly, I had to resume the steroids. Lesser of two evils, I figured.

When I’d first started back on them and was feeling somewhat less precarious, Heather and I drove out to Herring cove to a spot with a fabulous view of the coast and ocean. She and Wendy wanted me to view an area that required walking a very short path through woods. Last time I was there, I didn’t dare to, but armed with hubris and denial, and the barest minimum of steroids in my system,  I tottered after Heather.

Wrong.

The path was a foot and a half wide, sunk down, not level with the surrounding ground – and it was mined with tree roots and stones. Heather saw how unsteady I was and turned to hold her hand out. I didn’t, of course, take her hand. That’s where hubris and denial come in. The end result, near the end of the path, was me sitting down hard and unexpectedly and sort of sideways in the brush. No harm done. No injuries, unless you consider the last shredded remnants of my pride.

I keep an eye on “side-effects” because I have to report them and because I discover useful information. Like the fact that I have begin to, quite unconsciously substitute one word for another. Malapropism is the name of the disorder. Sometimes it’s funny.

The other day, I couldn’t remember the word for sushi and substituted “tsunami”…

(Which, in fact, was strangely appropriate as it came back later that night as a sort of wave) More often, though, it’s repetitive and annoying. I can edit something four times, send it or publish it, and still find more errors. I change tenses without noticing and leave words out – and if there’s a name or a word I haven’t been able to temporarily forget, I’d like to know what it is. Not that I’ll likely remember.

But overall, I’m a bit improved.

People often think they wouldn’t be as “brave” were they in my position. I think they might surprise themselves. And besides, I’m more stoic than brave. I do grieve. I have my teary times. But the thing that happens, if I don’t keep that in check, I end up wallowing in self-pity. Which is not anything like simply acknowledging your feelings or letting them out. It’s a wretched, miserable state. Far worse and less useful than simple grief -and it’s a shitty state to be in around your friends, too.

It’s a fact that we die. Now, later, sometime. I think I’ve pretty much accepted that.

It would have happened sooner or later – it’s just not avoidable. I’m fortunate to have the enormous support that’s come my way.

I do, however, need to reign in the I-can-do-it-myself denial factor. I am SUCH a pain in the ass to my friends.

PFFT! GONE. SUPER POWERS & CHILD REARING ADVICE

 

Consider this to be intermission. While I am experiencing a virtual cornucopia of weird side-effects, I thought I’d present you with the best laugh I’ve had in weeks. (By permission) a letter from a dear friend.
________________________________________________________________________________

I've always thought that an amazing super power would be to have the ability to "lift" energy of any sort and put it somewhere else. Like for example, take your headache "energy" and shove it into the skull of say, an unapologetic racist. But then, that would be a power that would require extreme responsibility and would be sought by all. So I had to scrap it.

Then for a while I was settled on the ability to make anyone shit their pants at my will. Great for political rallies and such, but not actually useful. Worse, it's only good for evil, unless I were to aspire to be the Mother Theresa of the constipated. No, no too much visiting hospitals there...

Ultimately, I've come to desire as my super power the following: The ability to spontaneously sublimate yourself and one or two people with you into an invisible, odorless vapor, and reconstitute elsewhere. Think of this! It's brilliant, if I do say so myself.

-stuck in the elevator? Pfffft. Gone.
-chased by a murderous mob? Pfffft. Gone.
-unbearable social situation? Pffft. Gone.
-couldn't be arsed to walk home? Pfffft. Gone.
-plane just burst into flames and flipped onto it's back? Pffft. Gone.

It's the ultimate "man-power" in my opinion, as mostly we men types are nervously eyeballing the fire exits and/or making excuses to get out of something.

No friend-healing applications however, so we're shit outta luck there. I suppose I could wish to go back in time and "try" in high-school. Maybe I could have been a doctor. I suppose I would also have to have not sniffed so much ether as well. Probably would have to avoid a few major knocks on the head as well.

You know what, fuck it. I could never have been a doctor. Even if I were twice as smart as I am, I still would not have had the discipline. Or the empathy really. I'm okay with this, but I had to get there on my own. See when I was little, my very-well-meaning mother made the massive blunder of telling me that I was very special, and that I could do whatever I wanted to do in the whole world when I grew up. What a terrible thing to say to a child!

The result of all this hooey is that you wind up feeling, whatever it is you're doing with yourself, that you must've at some point blown it. You spend a fair bit of time trying to figure out the exact moment it all went pear-shaped and wrong. It takes years to get to "Waitaminnit, I could NEVER have flown the space shuttle! Everyone in my family wears glasses and always has!" It's very upsetting.

Now if on the other hand, you tell your kids: "You are a lovely little boy/girl, but you have mine and your father's genes, so there's going to be some limits you'll have to work within. For starters, no one in your family tree has ever been much of a looker, so you'll have to be extra smart and charming. This you'll have to work hard at, as there's also a 75% chance you're somewhere in the more gaily--coloured part of the high-functioning autistic spectrum. You have six uncles with Aspergers.

Also, your entire fathers side are horribly bandy-legged, so forget sports unless you count race car driving. Having said that, there's more than a few lawyers in the family, and no (insert last name here) has ever been convicted of bestiality, you can look that up when you're older.

You're not of a particularly socially disadvantageous race or creed, and we might be able to scratch together a college fund for you so long as your fathers vasectomy is successful. I'd say you have a perfectly good chance of working for a municipality or even an ethical small company. Avoid the entrepreneurial stream, you're descended from peasants all the way around. Shoot for 'left-hand man' if you can."

Now armed with this, whatever you do (within reason) could very well seem alright. "Well, I'm a bus driver. Not too bad for the spawn of a latchkey kid and a wristwatch repairman."

What the fuck was I talking about?

Oh right, I'm sorry that I can't give someone else your cancer.

QUOTH THE RAVEN, "NEVERMORE"

August 2010 - another lifetime

On Monday, I surrender my title as Cheeriest Cancer Patient Ever. It is the third day out of five of waking up with a pounding headache and only the barest grip on where my body is located in space. The thought of food is nauseating. I take to my bed, where I alternate reading for an hour and sleeping for two or three. Monday night, I sleep a full eight hours.

Tuesday, it's an encore – with a worse headache. Getting up to walk two or three feet is downright perilous.  Going from sitting to standing, I pitch forward or stumble sideways. Once again, I am clinging to walls and furniture to get around. And worst of all, the Raven begins his gloomy croaking. I think about putting a wig on and burst into tears.  I will never brush my hair again, never get up to go for a long walk, never wake up with a sense of purpose, with things to do. Goddess only knows if I’ll ever see the real shape of my face again.

I am afraid the headaches and loss of balance mean the tumors are back. Already. I recite to myself the predictable side-effects of radiation and quitting steroids – exhaustion, headaches, upset stomach and so on. I refrain from calling The Dave. Waiting it out. Hoping it diminishes.

Lately, I’ve been reminded of my lack of longevity. A dear friend has cancer – a shocking recurrence and unexpected – at least by me. After I hear the news, I can’t stop thinking about it – how vicious, how tenacious a disease it is. I’m devastated for my friend. And I’m reminded of my own prognosis.

During my last consultation with The Dave, I ask if there will be follow-up tests. He is quiet for a moment and then says it is up to me whether I wanted tests scheduled now – or whether I want to wait until I have a symptom and just go about living my life in the meantime. It is the pause before he answers that conveys the message. Dave is kind and empathetic, but he’s never dishonest, never creates false expectations. If it crops up again, there’s not likely to be treatment. When. When it crops up again.

Somehow, I changed lanes during the radiation sessions. Like most cancer patients, I expected that the side-effects wouldn’t be that bad. I expected, truth be told, to feel a lot better. I wasn’t going to be one of those people who spend the days sleeping and lethargic. It’s a hard landing when you fall off those kind of high expectations. When you realize that you may, in fact, be plagued by any number of disabilities until you die. That remission may be short – and not at all what you imagined.

So, I’ve been silent for a while, not wanting to spread the pity-party around.

Today, I’m happy to report, I’m up and dressed. No headache. Less disorientation.

One day at a time.

RIP VAN WHINY

I wish I had something profound or exciting to tell you. However, unless the idea of someone becoming Rip Van Winkle is your idea of entertainment, you may as well stop reading now.

And by the way, next time I read the advice in The Big Book of Cancer Leaflets, I’ll try to remember that the predictions about side-effects are serious – but as to the adivice on managing them? The kindest thing I can say is that someone meant well.

For example: Thursday, the second day after I stop the steroids, I wake up with aching joints and a headache drilling its way behind my eyes. I open my eyes to a narrow squint, heave myself upright and swing my legs over the side of the bed. I plant my feet and wait until I can (more or less), feel the carpet, otherwise standing will cause me to lurch sideways. This particular morning, when I make the transition from sitting to standing, my body feels like it’s filled with wet sand. Jupiter gravity.

Coffee, I believe, cures everything, so I trudge to the kitchen, boil the kettle and brew a cup. Half-way through drinking it, my eyes are still in a headache squint, my joints still ache and I’m still Jupiter-weight. I make an executive decision: The fatigue wins. I will go back to bed and stay there. I will not get out of my pyjamas. I swallow two ibuprofen extra strength, and crawl back under the covers, intending to read. The print refuses to come into focus, even with my reading glasses on. I cover my left eye and the print clears. I cover my right eye – and sure enough, the letters blur. This has happened before on “bad” days, so I do the sensible thing – I fall asleep. And I sleep, off and on, for the next ten hours. 

Friday, the headache and joint pain are gone. I am not subject to Jupiter’s gravity. I shower and dress and Heather and I head for downtown. After errands, we drive out to a spot in Herring Cove with a spectacular view of the ocean. When we get home, I sleep. Again. 

And so it goes. Perhaps a little less sleeping as the days go on – but I’m still averaging a good fifteen or sixteen hours a day.

The advice on “handling” fatigue goes like this:

“ Try to sleep at least 8 hours each night. This may be more sleep than you needed before radiation therapy. One way to sleep better at night is to be active during the day. For example, you could go for walks, do yoga, or ride a bike.” 

Oh? And who do they know who sleeps over four hours a night while taking steroids? Going for walks? Love to – if only my feet would co-operate and stop seizing into cramps after 10 minutes. This is great advice for the one in a hundred who might have only one side-effect out of dozens.

“Plan time to rest. You may need to nap during the day. Many people say that it helps to rest for just 10 to 15 minutes. If you do nap, try to sleep for less than 1 hour at a time.”

Uh-huh. Just try to wake me up in 10 minutes. I've set my alarm (only a foot from my pillow) and failed to hear it.

And the really good news is:

“Fatigue can last from 6 weeks to 12 months after your last radiation therapy session. Some people may always feel fatigue and, even after radiation therapy is over, will not have as much energy as they did before.”

Oh, piss off! I don't have time for this. I'll allow a month. And then, whatever it takes, it's over.