Tag Archives: surgery

Beautiful and Ugly

I’ve always loved dolls and the delightful escapism I can find in their tiny world. This lovely if somewhat tattered display case resides in my living room.

doll case

I found the case, wet from rain, by a tiny shrine many years ago. The dolls are my own; I made some of them. I spend time staring at them, thinking, “What if you were real?” No more than that. That’s enough.

I also love fairy tales, but not Disney extravaganzas. While I love the music in Fantasia, I’ve always found hippos wearing tutus disturbing. I also have to admit I’ve never seen Bambi and don’t want to. Those aren’t the tales I’m talking about. Sometime around high school, I discovered Andrew Lang’s Fairy Books of Many Colours. This was one of my favourites (British spelling by courtesy).orange fairy bookIf you thought ballet dancing hippos were weird, there’s a whole universe of strange in these books. They’re fairy tales collected from all over the world. According to Lang’s preface, “cruel and savage deeds have been softened down as much as possible” and most “take the side of courage and kindness and the virtues in general.” Still, there’s enough weird in these pages to satisfy…well…me.

In the Scandinavian tale The Enchanted Wreath, there is a couple, each bringing to the union a daughter from a previous marriage. The man’s daughter is beautiful and good, no doubt a virgin (spoiler alert!) until the prince has his way with her, while the woman’s daughter is cross and ugly and the prince will never look at her twice because beautiful men don’t marry ugly women, at least not in Hollywood or the pages of fairy tales. Ugly men can marry beautiful women, however, (Mick Jagger, Billy Joel, love them both despite their looks) and we’re meant to accept that as a social norm. Check Google if you don’t believe me.

Both daughters are asked to go out in the rain to fetch the man’s axe after he’s been woodcutting, although why the dumb-ass can’t remember to bring it home himself is beyond me. Each daughter finds some cold, wet doves sitting on the axe handle. Beautiful feeds and pets them and is rewarded with a wreath of eternal rosebuds adorned by invisible birds that never stop twittering, which sounds a bit thorny and annoying, but I didn’t write the story. Ugly, on the other hand, shoos the doves away calling them ‘dirty creatures’. Her reward is that she can never say anything but, ‘dirty creatures’ for the rest of her days, which seems to be giving those doves an awful lot of  power and outweigh the crime, but again, I didn’t write the story.

Just imagine.
“What do you want for breakfast?”
“Dirty creatures.”
“Um…we’ve got some stale corn flakes. Will that do?”

Long story short, a prince happens upon Beautiful in the woods, falls in love and proposes on the spot. The king is displeased but gets over it; the kid had always been headstrong anyway and the girl is just so darned pretty. Ugly and her mother are also displeased but don’t get over it. Instead, they indulge in some unethical conniving, including drowning Beautiful who somehow turns into a ghost and then a slimy snake that writhes in the prince’s hand until he lops off its head with his sword and Beautiful is returned to him intact, complete with thorny roses and twittering birds. There’s no explanation of how he knew he should do that; I rarely use a sword to lop off the heads of people I love, hexed or not. Ugly and her horrid mother are banished to a desert island and everyone else lives happily ever after. And that’s how it works in fairy tale land.

In real life, the hexes are more straightforward and less easily dealt with. Since the curtain came down last October, I’ve made it through surgeries and chemotherapy, more needles and bandages than I can begin to count, mostly delivered with caring and professionalism but also half-lies and brick walls and indifference. And there’s still a long way to go. Leaving home for the final chemo session last week, I put my hand on the knob to open my front gate and thought “sixteen.” Sixteen times I turned that knob, opened the gate, walked to the station, got on the train. Sixteen times I opened the door to the doctor’s office, sixteen times I sat in the chair and went through the procedure, sometimes easily, usually not. Sixteen times I got up again and came home. Sixteen.

With all of that, the past year has sucked in more ways I can name, but at the same time, it has brought so much love into my life. I am finding it not only in other people but also in myself. I find a capacity for giving and sharing that I didn’t know existed, a mutual need for human touch, for connection, but also to let go of the people who, intentionally or not, cause me nothing but pain. I hope this is a form of wisdom. I’ve got my people, all of us perfectly imperfect, all of us on a journey, all of us in the same boat, whatever form it may take, wherever it may be sailing, to paradise or to a desert island or just to the  convenience store on the corner.

I have found the strength to trust myself, to make decisions and live with the consequences, right or wrong, to feed the doves or shoo them away. I’ve never had to face this kind of challenge before, never really been sick before. The surreal world of Cancerland has posed such contradictions, such questions, offered so few answers and I am the kind of person who needs things to be straightforward. I am only now beginning to realize how much this has changed my life, not just my body, but also my mind, my outlook, my overall perspective. Forever, I will have this threat hanging over me. The old normal will never return; I have to learn to live with a new normal. The collateral damage is still unimaginable to me, the snake still writhing  in my hand. I can never know which way he will turn his slimy head and I seem to have left my sword somewhere, perhaps next to dumb-ass’s axe.

This journey is both beautiful and ugly and that’s real life, unadorned by the good or the bad, the dancing hippos or perpetual roses or slimy snakes or jealous stepmothers. Despite all that, or maybe because of it, somehow we find a way to keep going.

three princessesw

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Power

Halfway through my treatment, at least according to the number of IVs I will have to endure, it became apparent that while I have the cast iron constitution of a German potato farmer, I have the veins of an anemic chicken. My internal organs are functioning perfectly and my blood cells are behaving nicely, but my veins have stopped dead in their tracks and refuse to take a single step forward; needles go in but nothing comes out. My wonderful nurse was close to tears; she knows how to do her job and certainly doesn’t want to hurt me, but the veins were obstinate.

So now I’ve got this creepy thing living in my chest.

power port

This is a port, to be specific, a PowerPort® MRI® isp Device from Bard Access Systems. (Perhaps the good folks at Bard might offer me a fee for mentioning them?) It was implanted under my skin below my right shoulder. The tail goes directly into a large vein, making for easy delivery and distribution of cytotoxins (cell poisons). It can be reused as often as necessary until no longer needed. I have mixed feelings about that. But it also means I will have no further needle jabs in my arm. This is a good thing.

Ah, my old friend irony. I project the image of a powerful warrior princess charging into battle on my magnificent steed, but in fact, I lie down on the table and let the medical people do their stuff, silent tears my only protest. I was hoping the little purple monster might give me mystical powers of some sort, but it just sits there and I remain powerless.

If you count the Colonoscopy from Hell, that makes a total of four surgeries this year. At least this time they were putting something in instead of taking stuff out.  This is also a good thing. I’m running out of spare parts.

I look at my increasingly disfigured torso and almost wish the marks were battle scars. “She fought bravely to the end of the siege, her blood-stained blade glinting in the twilight” sounds so much better than “She sat idly by while the invaders took what they wanted and then ate a lot of cookies.” (Thank you, Maya!) It’s not a very heroic picture, but to be honest, heroism has little to do with it. Bravery? Certainly, but not heroics.

Maya cat cookies

What’s happening to me sucks but it’s not a tragedy. Dominating this weekend’s news was the story of a woman who just died of breast cancer at age 34, leaving behind two small children and a grieving husband. That’s a tragedy. It was in the news because she was a TV personality and he’s a kabuki actor, but that doesn’t make their story any more or less tragic, just more public.

Oh, and she published a blog about the whole process. Now there’s a thought.

When the Going Gets Tough…

circus-tent.jpg

…the tough go to the circus.

The Kinoshita Circus is Japan’s largest* and it’s a real circus, staged in a tent, complete with clowns, jugglers, contortionists, acrobats and animals. It was pure delight from start to finish (except for the motorcycles in the giant sphere. That act was entirely too loud and scared the pickles out of me). It was charming, totally professional and yet not quite, especially when the juggler dropped his bowling pin for the third time and the acrobat missed the trapeze and fell into the net. Kudos to him, though, as he climbed right back onto the platform and completed the act. There was an aged elephant who stood on her front feet, then her back feet, then looked right at me as if to say, “Well, what do you expect?” Four bored-looking zebras trotted around the ring in one direction then the other, barely stifling their yawns, eager to get back to their cabbage and carrots.

George feet
We weren’t allowed to take pictures. Just imagine George’s feet times 100.

But then there were lions. There were eight lions, two each of tawny males and females, and four pure white females. They didn’t do much, just jumped through a hoop and did a couple of group poses. The males reared up, but there was no pretense at fierceness, no gnashing of teeth or snapping of whip. The tamer clearly loved them and was loved in return as he patted their magnificent haunches and tugged on their swishing tails. They walked around the ring, swaying their powerful shoulders and flipping their enormous paws. And we were seated less than ten meters away. I cried openly throughout the act, overwhelmed.

By the time we got home that evening, my scalp was beginning to show. So the next morning, armed with the lingering flush of being that close to so much feline magnificence, I plugged in the razor, took a deep breath and mowed a swath right along the top of my head from the middle of my forehead, a reverse Mohawk, an irreversible, total commitment. When I asked Rochi to help with the bits I couldn’t reach, he didn’t flinch, even though I know he was at least as scared as I was.

head shaving

Picking up that razor brought back the feelings of waking up after my second surgery. As I gradually became aware of the tubes leading in and out of my body, the machines I was attached to, the medical staff bustling around, the difficult and painful recovery that lay ahead, I panicked. All I could think was, “I can’t do this. I just did this. I can’t do it again! I can’t!” I wanted to leap off the table, yank out the tubes and run away from the sterile room, the sterile hospital, the entire sterile, surreal medical world.

Instead, I remembered a visualization I had learned. I closed my eyes and found myself sitting comfortably on a warm rock in a sunny glade under trees swaying in a breeze lightly scented with jasmine. Surrounding me was my tribe, who had taken the form of pastel colored unicorns. Waves of empathy, compassion and love flowed from their soft, gentle eyes, all toward the center of the circle, all toward me.

I experienced all of that in just a few moments but it was enough. My heart stopped pounding. My breathing slowed. I opened my eyes.

Over the past few years I have kept having experiences that left me thinking, “Wow. That was the hardest thing I’ve ever had to do.” And I keep being wrong about that. But I have learned a valuable lesson: Courage isn’t a lack of fear. Courage is being afraid of something and doing it anyway. And I give thanks every single day for continuing to find that courage in myself and in the people around me.

*Big, squishy clowny hugs of gratitude to Randy and his friend for making this happen.