What’s that smell?

deodorant

Somewhere around the time I hit puberty, as my body began to develop, so did my personal musk. I graduated from little girl sugar and spice to something more mature and, like most people with any sense of propriety, started wearing deodorant. I continued to do so for the following forty or so years until I had surgery last January. Since then, my body has continually been pumped full of drugs and poison and stuff I don’t even want to know about. I have not needed deodorant, even during the long, hot summer. Instead of my own familiar musk, I smell vaguely of something between a chemistry lab and a gas station bathroom. My nearest and dearest, or at least near enough to notice, claim not to have noticed, and they get brownie points for politeness if that’s all it is. It’s not a bad smell, really, it just isn’t me. It sometimes feels like I’m wearing someone else’s skin, and that’s way too Silence of the Lambs for my liking.

The medical world doesn’t bother to tell you about things like this, partly because the journey is different for everyone and the possibilities of treatment side effects are endless. Chemo effects are also cumulative; even now, four weeks after finishing, I am still getting new ones, mostly mild but annoying and taken together, awfully depressing. I am waiting impatiently for the day that I start feeling better.

Still, I am always looking for those shining silver linings, and yesterday, as I was taking off my shirt, I noticed a whiff of BO emanating from my right armpit. I sniffed. I sniffed again. Indeed, my right armpit was definitely giving off a human scent, a familiar scent, the scent of me. I welcomed it, nearly moved to tears. I know it’s only a baby step, but it’s a step in the right direction and I’ve been wandering around in circles for far too long.

Who knew a smelly armpit could bring such joy?

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Unicorny?

I was walking along a narrow path deep within a forest. The path was carpeted with pine needles that padded my footsteps and smelled of Christmas. I could hear birds chirping above me in the branches of the trees, their rich green leaves filtering the soft sunlight, making dappled patterns on the delicate plants and tiny flowers that covered the ground. Overhead were soft, cumulus clouds forming shapes that defied imagination: an eagle feather, a jack-in-the-box, a marshmallow bunny, a sesame seed bagel. There was a light scent of jasmine dancing on the warmth of a breeze.  Coming from what seemed a great distance, I could just barely hear the kind of music that makes you want to close your eyes and feel the life force flowing through your skin and into your bones and muscle and out again, back into the endless energy of the universe.

nirvana

As I followed a curve in the path that skirted a large gray rock flecked with gold that glinted in the sunlight, I emerged into a small clearing. At its center stood a shining pink unicorn nibbling on some yellow buttercups. At the sound of my step, she looked up, tossed her long white mane and tilted her silver horn in greeting. I reached out and gently stroked her delicate muzzle, felt the curve of bone in her powerful jaw, gave her a light scratch between her twitching ears and drew the tips of my fingers along her magnificent brow. She winked at me, as if to say, “Yes. This is real. I am real. You have found nirvana.”

And then I woke up. There was no unicorn, no gentle sunlight, no breeze, no birds, no buttercups. It was cold in the room and still raining as it has been, off and on, for the past three months. The only sound I could hear was the shriek of a motorcycle tearing apart the neighborhood’s peaceful Sunday evening silence. And I still felt just as awful as I had when I fell asleep.

Then I looked down at my hand and saw, resting on my fingertip, one sparkling pink eyelash. I smiled and then I sneezed. When I opened my eyes, it was gone. But I choose to believe it was there, just as I choose to believe in nirvana and I choose to believe that it will someday stop raining and I choose to believe a lot of things I can’t really put into words but carry around with me, some version of hope, a tendril of faith in the power of elves and fairies, a knowing in my soul that there are some universal truths and I just have to find the strength to see them.

The sun will rise again tomorrow and I will open my eyes to see it. For now, that’s enough.

How to Name a Typhoon

Screenshot-2017-10-25 Typhoon Committee Typhoon Committee is an intergovernmental body organized under the joint auspices o[...]

When I went to bed on Sunday night, the media were calling #21 a massive typhoon (technically a tropical cyclone). It turned out to be a proverbial tempest in a chapot. I couldn’t sleep that night but that’s OK since I’ve always been a fan of violent weather. Well, almost always. When I was a little girl, there was a huge tree right outside my bedroom window and every time there was a storm, I was convinced the tree would fall onto the house and crush me to smithereens. I would cry and cry until one of my parents came up to comfort me. And, boy oh boy, the lies they made up to get me to shut up! One of them once said the roof was made of rubber so if the tree fell, it would just bounce back off again. I believed it. Kids are dumb.

The_Wicked_Witch_of_the_West

So I lay awake and listened as the rain pelted the windows and the wind whined a bit, but that was the extent of it. There were no broken flowerpots or tree branches, no upturned old ladies, no banshees wailed, no witches sailed past on broomsticks. Although it’s been raining for what feels like months, the typhoon passed by within an hour. Despite all the dire warnings, typhoon #21 inspired yet another media circus about a non-event.

The next morning I got a message from a friend in the States implying that the Western hemisphere is more civilized than this one because they use names instead of numbers for what they incorrectly call “hurricanes”. The US uses people’s names, alternately male and female. They were all female until 1979 when a lot of women burned our bras in protest and they changed the rules.

So I thought I should look into this matter.

It turns out that Asian typhoons do have names but we don’t use them here in Japan. There’s a super secret group called the ESCAP/WMO (Economic and Social Commission for Asia and the Pacific/World Meteorological Organization) Typhoon Committee who are responsible for naming typhoons in the Western Pacific. The Committee has 14 member countries, all in Asia except, for reasons that escape me, the United States, who got together and made a list of names. Each country contributed five names and the names are used in sequential order according to the alphabetical ordering of the English names of the member countries, starting with Cambodia and ending with Vietnam. Our #21 was called Lan, a name contributed by the US. Last week’s typhoon, #20, was called Khanun, named by Thailand. Currently, #22, Saola (Vietnam), is kicking up her heels somewhere around Guam.

Japan’s contributions to the list include Kujira (whale) and Usagi (rabbit). I wonder who was responsible for that one? “Quick! Latch all the windows and hide the cabbages and carrots! Typhoon Bunny is coming!”

Long story short, it turns out that the reason we use numbers instead of names is that many of the names on the list are too hard to pronounce in Japanese, which has a very limited syllabulary, and our newscasters are very lazy indeed.

wikipedia-hiragana-chart-2

Mystery solved.

 

Fairy Dust

I think one of the reasons that I never got very tall, aside from genetics, since my father is 1/16th hobbit, is that somewhere deep inside me there is a small child who refuses to grow up. Perhaps a tiny fleck of Tinkerbell’s fairy dust danced its way into the biological stew when I came into existence. Whatever the reason, my abiding love of dolls and fairy tales also wraps its loving arms around Merry-go-rounds.

Me Merry-go-round

We used to go to a lot of country fairs and carnivals when I was a kid and there was always a Merry-go-round. I was born a horse fanatic, so even fake horses turn me on, but sometime when I was still pretty small, my dad pointed out the intricate hand carving and painting as well as the real glass eyes on the magnificent steeds gracing an antique Merry-go-round we happened upon. I  became addicted on the spot.

vintage merry go round

When I’m astride a Merry-go-round horse and the mechanical band strikes up its off-key tune and the horse finally starts moving, up and down, slowly at first then a little faster, I can close my eyes and just for a moment imagine that I’m on a real horse, riding through a meadow, feeling his powerful haunches pushing me forward into the future as the wind gently blows my hair into the past. There’s something beyond fantasy and fairy tales in the elegance of a horse’s slim but powerful legs. A shod hoof even lazily aimed can crush vulnerable human bone while at the same time, the horse’s muzzle is softer than a satin pillow stuffed with the finest eider down. Contradiction, thy name is equus.

The big difference is that real horses move forward and backward and side to side while Merry-go-round horses just go up and down, round and round. As Joni Mitchell sang so beautifully, “the seasons go round and round and the painted ponies go up and down.” So here I am sitting in my little Japanese house, not a horse or Merry-go-round in sight, and yet I feel like I’m on some sort of perpetual carousel ride. Four entire seasons I’ve felt the painted pony go up and down and yet it doesn’t go anywhere at all except around and around. The six months of chemo hell are finally done; the horse goes up. Dr. Gloom-and-Doom says I will continue to feel awful for at least three, maybe six months; the horse goes down. He says my tumor markers continue to fall; the horse goes up. He says I have a very rare type of cancer; horsey goes down. But the likely outcome is the same as for more common cancers and my hormone status is good; horsey opens a bottle of wine. But my staging is advanced; horsey sprains an ankle. But my 10 year survival rate is around 80%; horsey opens a rare bottle of cognac. But, and here’s the kicker, my particular type of cancer doesn’t form tumors. It spreads much like fairy dust and is nearly impossible to detect, so there is a slim chance I will be on and off chemo for the rest of my life; horsey has an aneurysm and someone fetches the shotgun.

I don’t know why this happened to me. Cancer is not some sort of divine retribution for some hideous thing I may have done in this or another lifetime. I am not being punished, and therefore I have never asked, “Why me?” Cancer has no intention, no goal, no target, no soul. It just is. In the end, I may be paying for that fairy dust that went into making me what I am and I am still grateful for that. The challenge now, though, is to figure out how to get up every day and wonder, not the starry-eyed wonder of a child looking at the painted ponies, but the perplexed wonder of trying to read something in a language you don’t understand. You can stare at it all day and it will never make any sense. I am hoping that, in time, I will be able to shrug my shoulders and walk away.

sparkler

 

Liar, Liar

I was just lamenting my inability to respond to the Two Truths, One Lie game as suggested by the inspired SAJ because I don’t have a crystal ball. But just then, the postman arrived at my door and brought me the ultimate…uh…not exactly a unicorn…uh…possibly one of the ugliest little creatures I’ve ever seen…and I have found my muse. MC, your timing couldn’t have been better. I take this as proof of the power of the tribe.

Seer 3
We’re taking suggestions for names. Glorp? Fizzbit? Snarg?

And now, properly accoutered, I give you a selection of Eda’s Oracular Insights. (I will miss my doctor’s appointment if I take the time to respond to all of them, and helping pass the intervening time was the whole point, but I love each and every response. If anyone wants to keep playing, please comment below or on Facebook.) Entries are in gray, my responses follow.

I lettered in high school. I have read the Lord of the Rings three times. I had a kitten named after a dictator.

  1. Me, too! But then, the whole cross country team did. We were like that.
  2. Liar. Twice, maybe, but not three times.
  3. Excellent! Was it Julius? Attila? Adolph? Donald? My first pet was a brown hamster which I named Brownie. I’ve improved in the creativity department since then. My cats are called Twitchy, Monkey Boy and George.

I once voted for a Republican. I’ve shot a gun. I like eating wild game.

  1. Liar. ‘Nuff said.
  2. Me, too. Nothing to be ashamed of. Carrying one into Walmart is another story.
  3. Yeah, well, I’m game, too. (Sorry.)

Fleetwood Mac was at my first wedding. I hold an orange belt in karate. I’ve visited Africa.

  1. I so hope that’s true. Unless they didn’t sing. That would have sucked.
  2. Liar. You’re tougher than that.
  3. Well, if you haven’t, you should. Bucket list.

I met Weird Al Yankovic in the Tucson Mall. I met Brooks & Dunn in the Warwick RI Airport. I met Jefferson Starship by nearly getting hit by their car.

  1. Liar. I know for a fact that Weird Al has never been to Tucson. (Now who’s lying?)
  2. That’s some kind of a cowboy band, isn’t it? Entirely possible.
  3. Well done. I was once knocked off my bicycle by a Noh actor. I figure if you’re going to get hit, get hit by someone interesting.

I have heard Nina Totenberg having sex. John Turturro (the actor) called me the “C” word. I have been to Japan.

  1. Ah, the paper thin walls of the Wabash Motel 6.
  2. Liar. I will not accept anybody calling any of my tribe members the “C” word.
  3. And we had a lovely time strolling around the imperial palace under the cherry blossoms with the emperor sipping tea. That was a good day.

I speak three languages. I was a sled dog musher. I am related to a former U.S. President.

  1. Coptic, Aramaic and Sanskrit, right? All very useful.
  2. Down, girl!
  3. Liar. Or at least, who would ever admit it?
I am eligible for the DAR. I have been to a nudist camp. I love karaoke.

  1. Me, too. But that also goes on the list of stuff I never tell people.
  2. And we’ve seen the tattoos to prove it!
  3. Liar. We’ve heard you sing.

I played go fish with Walter Mondale. I have traveled to all the contiguous states. I went to a Black Sabbath concert.

  1. And he cheated.
  2. Liar. Everybody always forgets at least one.
  3. Totally possible. My father took me to see Deep Purple when I was ten. He was trying to be cool and didn’t know any better.

I have sky-dived. I was a contestant on Jeopardy! I took a llama for a walk.

  1. Me, too! Crossed that one off the bucket list years ago.
  2. Liar. But that’s on the bucket list along with the annual crossword puzzle competition in Stamford.
  3. OK, but how do you know he wasn’t walking you?

I was shoved out of the way by Walter Cronkite in the Des Moines airport baggage claim. I won 3rd place for my strawberry jam at the MN State Fair. I was in a NYT article on ballroom dance lessons for kids.

  1. It’s always the quiet ones, isn’t it?
  2. Liar. It was 1st place. You’re just being modest.
  3. Ah, you twinkle toes. Tiptoe through the tulips….

When I was a kid it bothered me so much when new dolls had no underwear that I would cut up sheets and sew little underpants for them. I compulsively colored inside the lines and if I ever made a mistake would use whiteout to make things right. After reading How to Eat Fried Worms, I dug up and fried a worm and brought it to school in a tiny sandwich for my friend.

  1. I can see that. We may be the product of a somewhat liberated generation, but we were raised by one that wasn’t.
  2. Good thing you got over that! You never would have survived child-rearing.
  3. Liar. It would have had to be a very tiny friend, indeed. And where would you find a tiny-enough lunchbox?

Japan version: I once was a gaijin talento on a Japanese game show called “Mama-san POW”. I once was paid for impersonating a French woman at Isetan Department store in Shinjuku. I once was baptised by a Japanese Christian cult that promised to show me a “traditional Japanese ceremony”.

  1. Yes, we’ve been fighting to free the Mama-san POWs for years.
  2. We foreigners are all the same, after all. We all speak the same language, we’re all six feet tall and none of us can use chopsticks.
  3. Liar. They said it was holy water but it was sake and they were yanking your chain.
I spoke Dutch fluently as a child. I have fostered over 100 dogs for periods of a few days to a year and a half. I grew up with a duck named Goose.
  1. Liar. You were just making silly guttural noises and pretending it was Dutch.
  2. Of course you did, and you’re a better person because of it.
  3. Remember when we were young enough to think that kind of thing was funny? Why did the chicken cross the road? What color was George Washington’s white horse? What’s green and says, “I’m a frog?”

Loss if innocence is an inevitable part of growing up, and those few of us who don’t manage it end up lost in eternal childhood. I can’t judge whether or not that’s a good thing, but with all of its challenges and tribulations, real life also brings joy, fulfillment, satisfaction and sometimes, when we’re lucky, bliss. On those days when it’s hard to get out of bed, I try to remind myself of how much less life would be, how much less I would be, without a little struggle. Still, sometimes I lie on the floor and put my feet up in the air and count my toes just because they’re there.

My turn. Which is the lie?
  1. I have about a bazillion pairs of unicorn socks.
  2. I love vegetables but eggplant makes me gag.
  3. I am going to let cancer get the best of me.

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

Pop-Tarts and Peace

I have spend the past two weeks suspended in limbo, waiting for the final chemo session early next month. In the meantime, I have very little work and very little energy so my tired body creeps through the days as slowly as the minute hand makes its way around the face of the clock.

Persistence of MemoryI am the mushroom platypus thing in the middle. See the resemblance?

I keep rebuilding my perception of reality only to have it knocked out from under me and having to start again. There is a limit to the number of times one can do that, but the alternative is hiding under the blankets until pigs fly, hell freezes over and Trump grows a conscience, none of which is likely to happen any time soon. Well, given advances in plastic surgery and aerodynamics, the pig thing might happen, and global warming is bringing us closer and closer to the possibility of frosty hell, but I’d bet my last Pop-Tart that Donny will never grow up. So I choose to get up each morning, ignore the tangerine-tinted buffoon, and try again.

The Pop-Tart Philosophy

Pop-Tarts

Tragedy and/or trauma bring on the five stages of mourning as the psyche tries to absorb and cope with loss. That mourning has five stages: denial, anger, bargaining, depression and acceptance. I had assumed the scenario goes something like this:

Monday: Don’t be silly. We still have plenty of Pop-Tarts.
Tuesday: Damn! Some douche canoe ate the last Pop-Tart.
Wednesday: I’d gladly pay you Tuesday for a Pop-Tart today.
Thursday: I’ll never have another Pop-Tart. How can I go on?
Friday: At least I got to enjoy the Pop-Tarts of the past.

But it doesn’t. It’s a messy, unpredictable tangle of what the human heart and brain can and cannot deal with. I still hover between denial and depression. Most of the time, my reflection either startles or saddens me. More recently, there is anger, and along with anger comes fear, or maybe because of fear there is anger. Bargaining has not happened and is unlikely. Who would I bargain with and what would I offer? And acceptance? How can I accept something that cannot be defined? How do I plan for the future when I don’t know if I will have one?

We watched Erin Brockovich a few days ago, and I know it’s idiotic, but I found myself resenting the sick people because at least they could blame the gods of corporate greed for their trouble. There’s nobody to blame for my situation, not even myself. So far, at least, I’d been able to meditate my way past those feelings of frustration and helplessness. But then I did a stupid thing. I binge watched some old episodes of Grey’s Anatomy, unfortunately the part where Izzy gets cancer. But her scenario was adorned in delightful Hollywood optimism. Not only did she survive death, within a month her hair had grown back and she insisted on scrubbing in on a five hour surgery, with only a couple of bites of banana to sustain her. Izzy, you go, girl! If only I had your strength.

The next morning, I woke up so depressed that not even a cocktail of yoga, meditation, Xanax and Pop-Tarts could snap me out of it. I’ve been bald for five months already, and my hair won’t be coming back anytime soon. As my frustration grows, my patience wears thin. If one more smug person smiles at me and says, “Don’t worry. It’ll grow back,” I may have to plunge a fork in your eye. Consider that fair warning. I know you mean well, but please be aware that a person who has cancer is not just dealing with contradictions on the scale of the Grand Canyon, e.g., you can’t even feel the disease while the treatment is making you very sick. That person is also trying to deal with the limits of their own mortality, trying to get up each day knowing there is a silent, greedy killer lurking in their cells, a dormant volcano on the molecular level. Round and round the mulberry bush we go, never knowing when the weasel might pop.

But while anger and frustration fuel me, they are exhausting. I have to find a way to make peace, peace in my thoughts, peace in my words, peace in my heart. I suppose that’s what they mean by acceptance: serenity, courage and wisdom. I will keep trying.

Desiderata

Ignorance and Apathy

tough prickly and beautiful

Ever since I embarked on the cancer odyssey nearly a year ago, I’ve tried to compartmentalize things into manageable chunks. Have the biopsy, wait for the results. Have the surgery, survive hospital life, go home. Start chemo, get through the first cycle, then get through the second. Stay strong but know when it’s time to hide in the blanket fort. Find a way to walk the fine line between acceptance and acquiescence.

Last week, I went to the doctor’s office for chemo number two in the second cycle of four, number 14 of an overall 16. The goalposts were starting to shimmer on the horizon and I was feeling pretty good. But as is often the case, the port they’d implanted in my chest was not working. The doctor came in to fix it…or so I thought.

blood test

“It’s metastasized,” he said.
“What?”
“That means the cancer has spread.”
“I know what metastasized means. How do you know?”
“Your blood tumor markers have shot up.”
“My who have what?” I’d never heard of blood tumor markers.
“See these numbers on this lab report? They mean there are more tumor cells in your blood and that means you have more tumors, we just don’t know where or how many.”
“But….” They had never shown me my lab reports and I hadn’t thought to ask.
“I’ve scheduled you for a full body bone scan and a torso CT to see if the tumors are in your lungs or liver. You don’t have to do chemo today if you want to wait for the test results, but I recommend you keep going with the treatment.”
“But…but…. So twelve weeks of toxic waste did nothing?”
“Looks that way. There won’t be any more surgery. You have two more chemo sessions scheduled after this one, and then we can extend it to a total of ten. Your body can’t take any more than that, so if it doesn’t work, we’ll have to try something else.”
“But…does this mean…. Am I dying?”
He looked straight into my eyes and said, “Yes.”
Then he patted my knee and left.
Tears fell, but I wasn’t crying. I was overwhelmed with helpless rage.

We had to wait five days until the tests and then another two for the results. The time passed in a fog of disbelief and denial and deep meditation. I also donned my best Nancy Drew frock and started chasing down clues. From what I learned, tumor markers don’t mean anything during chemo, which can make the numbers go haywire. Beyond fatigue and labored breathing, which are normal during chemo, I had no symptoms of metastasis. But that’s another of the insidious traits of cancer; everyone is different, every cancer is different, every reaction is different, which means doctors don’t really know anything and are flailing around in the dark, leaving cancer patients stranded on deserted islands of confusion and soul-wrenching terror. I was walking on eggshells on a tightrope suspended over quicksand while trying to balance a wriggling gummy worm on my nose.

When we finally got the results, the doctor smiled and said, “I’m so sorry. I was wrong. There is no evidence of further tumors, no metastasis.” My gut desire was to rip off his smiling face and savor watching his blood drip onto his pristine lab coat. Instead, I dropped my bag on the floor and grabbed on to the wall because I was suddenly trembling violently, barely able to breathe, adrenaline shooting out of every orifice like fireworks.

smack

“This doesn’t mean you’re cancer-free, it just means you don’t have any new tumors. And it doesn’t mean you won’t get new tumors in the future.” Yes, I understand all that. But it also means I can go back to my goal of finishing chemo, hoping my hair will grow back and trying to find some semblance of normal life, rather than counting off the days until my untimely death and getting gradually sicker every one of them.

Ah, but we weren’t done. It was time to drop the other boot. “You do have interstitial pneumonia, though. That’s pretty bad. You should probably see a lung specialist, but that means stopping chemo.” It’s hard to think clearly when you’re flabbergasted, but we determined that I didn’t have a cough or a fever, and that meant we could carry on with chemo as long as my condition didn’t get any worse.

And then it was time for me to transform back into Nancy Drew. As always, a little knowledge proved to be a dangerous thing. If you ask Mr. Google about interstitial pneumonia, he will tell you that it is relentlessly progressive, usually leading to respiratory failure and death.

Gosh.

But it turns out there’s a lot more to it than that. I won’t go into all the details, but there is a good chance it will resolve itself, and if it doesn’t, the condition should be treatable, assuming about a dozen ifs because, again, every case is different, every reaction different, every body different. So we just have to wait and see, and I must do my best to stay as healthy and sane as possible in the meantime.

Once again I am standing on the tightrope and as always I find strength in yoga and meditation to help me keep my balance. In fact, I’m taking an online intro to meditation course, not that I need it, but because it’s free and the teacher is Light Watkins, who is just so darned delicious. I could easily get lost in those pearly whites and that silky skin. My brain knows that he’s sitting in front of a camera somewhere on the other side of the world and could have filmed this stuff weeks or even months ago, but it feels like he’s looking right into my eyes, talking right into my heart. I also like his approach to meditation, which is that it’s normal to have thoughts while you’re meditating, but why you’re having those thoughts and what they mean doesn’t matter. Today, here was a mantra: I-don’t-know-and-I-don’t-care.

Light Watkins

 

I have friends who are Sokkagakai Buddhists, which is a cultish branch of Nichiren Buddhism. Mostly I can get behind Buddhism. It’s not a religion as much as a system of thought, a philosophy based on the same principle of most religions, which boil down to some version of be nice to each other. Buddhism, though, avoids all the inexplicable miracles and threats of eternal damnation and guilt and shaming and all the other foolishness organized religions use to force people to behave in a prescribed way. Buddhism comes so much closer to my world view which has always been to do the right thing because you know it’s the right thing to do, not because someone else, human or divine, told you to. I have always had issues with faith; the only time it has ever worked for me was in high school algebra, when the formulas and theorems went too far beyond my ability to comprehend. I realized the only way to pass the course was to take them on faith, which I did. I passed the course and then lost my faith just as quickly as I forgot all those formulas and theorems.

Nichiren breaks the camel’s back for me because of chanting. It claims that the Lotus Chant is the key to universal understanding and everlasting happiness; if you chant the words enough times, all will be well. But you have to accept that principle on faith and I can’t cross that line. For me, understanding only comes from careful thought and study. Happiness is a choice, nothing more; you can choose to be happy with what you’ve got or make the effort to get what you need to be happy or you can whine and complain about how you can’t have what you want and call the universe a big, bad bully who is intent on making you miserable, you lazy, useless narcissist. Honestly, I don’t think the universe cares about you that much.

I-don’t-know-and-I-don’t-care works for me.  As I travel further and further into the bizarre world of Cancerland, I realize more and more how much I don’t know and I begin to care less and less. I am one tiny spark of humanity. My life will only be what I choose to make it and will only be worth the value I give it. Whether or not that’s enough is also my choice.

missing fucks

What’s the difference between ignorance and apathy? I don’t know and I don’t care. Say it with me. “I don’t know and I don’t care.” Feels good, doesn’t it?

Original

In college, I learned that there are no original stories, or at least no original story lines. It’s all been written before, just garnished differently. Pretty Woman is Cinderella, ET is Jesus with the whole death/resurrection/ascension business. The sexy boots and flying bicycles aren’t fooling anyone. (Or are they? Both those movies did really well at box offices. Yeah, I was an English Lit major, big surprise.)

romeo and juliet

Example 1: Boy meets girl, everyone lives happily ever after…in fairy tales.

Example 2: Boy meets girl, boy turns out to be a douche canoe and girl finally leaves him after he destroys her physically and emotionally but she survives because women are super-heroines…in every Oprah-recommended book I’ve ever read.

Example 3: Boy meets girl, it takes some effort but they find a way to compromise so they don’t kill each other…if they’re lucky. This story hasn’t ended yet.

Example 4: Boy meets girl, girl wisely runs for the hills. It could happen. As a species, we’re still evolving. And that would be original. Also a very short book.

Coming from the (supposed) land where free thought and action are (supposedly) good things, I had always thought ‘original’ was a good thing. Anyone from Pittsburgh can tell you that the Original is THE place for hot dogs and fries.

The O

And there’s the Colonel’s original recipe fried chicken, an icon of American culture. (Did you know the Colonel came up with the recipe in 1940? I wonder if that was part of the war effort. Perhaps he planned to firebomb Tokyo with buckets of greasy bird and win the war by hardening everyone’s arteries.)

bucket of chicken

Unfortunately, the word ‘original’ has caught on here, with everyone scrambling to come up with something new and thereby attract more customers. (“No, you may NOT replace the tomato sauce on my pizza with mayonnaise!”) Wasabi in a tuna sandwich. (Ugh.) Tartar sauce on a cheeseburger. (Gag.) Cabbage in a chimichanga. (Choke.) Raw, fatty beef topped with uni, the buttery, orange-colored sex organs of sea urchins. (There isn’t a word for the sound this makes me make. I tried to include a picture. You can google it if you really want to know. I don’t recommend it. *HORK! There it is. That’s close enough. It’s the sound the cats make when they’re trying to bring up hairballs.)

So while we’re on the subject of hairballs and what constitutes ‘original’ and what constitutes ‘gross’, I put the question to you, gentle reader. Nyan Puffs  are original, for sure, but are they gross?

three puffs hobby frame

*Credit for that word goes to my BFF, Scratchy.

The Scent of a Mouse

When I was a little girl, thousands of miles from here and a million lifetimes away, in another century come to think of it, my family lived in a beautiful brick farmhouse built in yet another century all together. The house was five miles south of Absolutely Nowhere, Pennsylvania. (This is a recent picture. There were more trees and bushes when we lived there. It was a nice house, a nice place to grow up.)

Berlin house
Photo courtesy of Sony Hambrick. Thanks, sis.

Among our many childhood toys was a pistol made of black crayon. I don’t remember where it came from, nor playing many bang-bang games with it. We really weren’t gun people, but my brother and I did think it was cool that we could write with it.

One day, he tied a long piece of string to the gun and started swinging it from the front porch of the house. I was running around on the grass below. Being the good brother he was, he said, “Don’t go under the porch where I can’t see you.” So naturally, the first thing I did was run under the porch, and naturally, the gun hit me in the head. It left a big gash in my left eyebrow which probably spurted blood as head wounds usually do and probably scared the bejeezus out of my mother. I don’t remember that part, either.

The next thing I do remember is being at our GP’s office in town. I remember Dr. Killius, a nice man with a most unfortunate name. I remember my mother watching and quietly tut-tutting because, being a country doctor, he was used to setting bones that had been broken by kicks from ornery cows and stitching together limbs that had been mangled by harrows, or so she tells it. She was concerned about the lumpy scar he was no doubt going to leave me with.

Funny, that. Mom’s not and never has been a girly-girl, although she is a product of her time and probably had certain biases. Little did she know what effect the 60’s were about to have on the world and that I would be left with choices about important things like whether or not I would pluck my bushy eyebrows.

On the plus side,  there have been a few occasions when I’ve been forced into conversation with someone who cares about things like that, and I’ve been glad to sigh and say, “Alas, I can’t pluck them. I have an ugly, lumpy scar under one of them.” And I always believed that to be true.

Then I looked in the mirror last night and noticed that my eyebrows are nearly gone. There are a couple of stubborn strands left, but chemo continues to have its obnoxious way with me. I felt oddly humiliated by this, yet another loss, yet another neon sign advertising my condition, yet another brick knocked loose from the wall of my pride and my privacy.

But then I looked closer. The dreaded scar, the ugly, lumpy mess I’d used for so many years as an excuse to avoid cosmetics in all forms, is barely visible. You’d have to really, really want to see it, just like the silver linings that somehow keep cropping up and making cancer bearable.

I guess if my eyebrow can smile, so can I.

eyebrow hair retouched
Yeah, that’s an eyebrow hair in all its glory, captured for posterity in a good mood.

 

Interesting side note: Years ago, we noticed a strange smell upstairs in our house here in Tokyo and I said, “Huh. Smells like dead mouse.” Rochi looked at me like I was gaga, not bothering to ask the obvious question. A few days later, he found a mouse buried in the laundry basket, a gift from the cats we assumed. I know the smell because my father used to pay us a nickel a corpse to collect dead mice and birds from the attic of that beautiful old house in the country.

I can also tell the difference between the odors of cow and horse plop, a skill that has proven almost as useful as high school trigonometry.

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