Category Archives: Cancer

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

 

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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?

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.

Eye Candy Is Just as Sweet

I had promised myself ever since my diagnosis that I would not allow cancer to define who and what I am, but I have to admit it’s an uphill battle. The treatment seems to have a mind of its own and it’s a daily chore finding ways to cope with it.

pink elephant The best analogy I’ve found is the one I came up with last November when I was first diagnosed. It’s a pink elephant. He is comfortably seated on my left shoulder, gently wrapping his trunk around my throat with a slightly sinister twinkle in his eye saying he could tighten that grip any time he feels like it. And although he is always there, and I am constantly aware of him, only a very few others can see him. I hold my piece as my friends complain about the shortcomings of their husbands or the broken headlight on the car or the lack of pistachio ice cream at the supermarket. Those things will pass. Mine will not. The pink elephant is there to stay.

So I am doubly grateful for the rare moments that distract me from his infernal, pink presence. One such happened a few weeks ago.

Ghost college

Nihon University is one of the largest in Japan with campuses strewn across the entire Honshu area. With it’s affiliated schools, kindergarten through graduate school, the student body includes over 100,000 souls. Earlier this year, they opened a small campus just a few blocks from my house. It only offers two majors, Risk Management and Sports Sciences. Not to be too judgemental, it’s pretty easy to guess which is which among the students. The skinny, pimply ones are the risk managers, the others do sports. Since it’s new, the number of student is still very small, so I affectionately refer to it as the Ghost College, but I assume they’re expecting more students, at least hungry ones, because there’s a rather nice cafeteria on the first floor of the main building. Open to the public, it’s wide and airy with floor-to-ceiling windows on two walls and plenty of seating. The food is what you’d expect: curry, ramen, curry with a pork cutlet, ramen with a pork cutlet, salad.

We sat down by the window so I could survey the view and I tucked into my curry. There were two rather large fellas seated at the next table. Judo, I’d guess. Then I gradually became aware of others seated around the room. The risk managers must have been busy managing risk because the room was packed with tidy, trim bodies, not a pimple in sight. And it wasn’t just the students, either. I noted leather-patched elbows and the occasional necktie on what must have been instructors, and they were just as tidy and trim as the students.

And then a young fellow a few tables away stood up. I noticed his form, couldn’t help it really. A swimmer, without doubt. As he turned away from his table, he happened to glance at me, and as he did, he smiled, showing straight white teeth, pink cheeks, and, Oh, God, spare me please, dimples. I nearly swooned, dropping my spoon into my curry and knocking over my plastic water glass to spill all over my plastic tray. But despite all that, and just for a moment, the elephant flapped his Dumbo ears and gently floated off my shoulder. Now I know why the caged bird sings.

The curry was perfectly edible and nicely balanced with a small salad. The eye candy topped it off as a calorie-free, but completely satisfying, dessert. And all of this for around $4. Who says Japan is expensive? And what price can you put on a moment of freedom?

Cow Plop ‘N Beans

My chemo vacation is nearly over, three glorious weeks of not once being jabbed with a needle, not once having fluids removed or injected except voluntarily and through the usual portals, not once having to find the courage to open the door to the doctor’s office, not once having to walk past the line of women waiting to see the doctor when I’m on my way to the chemo room.

I had thought this vacation would be wonderful, a respite from poison being pumped into my body. I thought I would start to feel better, but twelve weeks of poison take their toll. I still feel like clobbered cow plop. The worst of it is not being able to breathe properly. The chemo monsters thought it would be fun to set up camp in my lungs. If I try to walk faster than a blue-haired-granny-shuffle or climb the stairs or even bend over to pick something up, the monsters start poking at my lungs with tiny daggers and pitchforks and other implements of destruction. I imagine this is what asthma must feel like. It sucks.

I asked my nurse about this and she said there’s nothing I can do. “Just be lazy!” she chirped. But the more I sit still and do nothing, the more it feels like my very soul is clotting in my nether regions, currently oozing along at the rate of molasses, but threatening to pull a Lot’s wife maneuver and turn to stone. I try to do some yoga every day, including at least a gentle inversion. The lack of blood in my brain is making me woozy. Just the other day, I imagined I was being attacked by a polar bear at Costco.

slutty bear

So I’m thinking let’s get on with it. I want to be done with this already. Ah, but there’s the catch. The first round of chemo was meant to compromise my immune system. The next round intends to pulverize it into oblivion. “Be very careful,” says my nurses. “No diseases, no injuries. Your body won’t even be able to cope with a hangnail. But don’t worry. You’ll probably only feel like hammered shit (she used a slightly more technical term) for three days. Just carry on with your normal life.” So all I have to do is make sure I don’t bump into anything or trip over anything and none of the 12 million other people in Tokyo decide to sneeze on me.

Well, that sounds easy enough.

As always in this hideous process, the waiting is the worst part. None of the medical people will commit to anything. I may or may not feel just fine; I may need to spend the next three months in bed whining and throwing up and generally being hateful. And there are a myriad of possible variations in between.

So I am trying to cope with this looming unknown and the anticipation is turning me into a quivering bowl of lime jello. (I dislike jello in all its forms but lime is particularly awful.) I slept for eighteen of the past twenty-four hours, partly healing, partly hiding, trying to find the strength to follow through on this nightmare.

Here are two ways you can help.

  1. Just a couple of days after I shaved my head, I got a message from a very well-meaning friend asking how my pretty blonde curls were holding up. I crumpled. It felt like a very well-meaning punch to the gut. So if any of you feel the urge to assure me, again, that it’ll grow back, please don’t. I promise you will receive a very well-meaning but very solid sucker punch to the kidney. You have been warned.
  2. Please don’t come at me with another miracle cure. It’s too late. The surgery is done, the treatment begun. Parts of me are lying on the top of a trash heap somewhere nasty being picked over by seagulls. I am attempting to cope with that grief, so please spare me the latest miracle diet/exercise program/jungle plant/exorcism that will make this all go away. Just the other day, I watched a yoga video featuring a charming Indian fella who ended the class with a long list of powders guaranteed to cure cancer in all its forms. Unfortunately, the only ingredient on the list that I recognized was cow piss. So now, on top of everything else, I have buy a cow.

cow

Reading back over this post, it seems I am not my usual gentle, benign self. I apologize for that. If anybody has any spare amulets or talismans or fetishes or fairy dust or just plain good intentions, could you give them a gentle push in my direction? Anybody got any spare magic beans? I have one, but I don’t want to spend it.

elepant bean

Pinwheel

sunrise

The pure, white light of the Tokyo summer sun is an evil spawned in Hell. She somehow cooks both down from above and up from below, creating a population of rotisserie people dripping their way along the concrete highways and byways of the city. She could suck the smile off Mickey Mouse’s face, and he’s the happiest mouse in the world. Even with a sun hat and parasol, she still wiggles her inquisitive fingers under my arms, between my toes, down the back of my sweaty shirt.

I could leave the house if I wanted to, but chemo magnifies the effects of the heat by about 1000% and the pain of trying to breathe the miasma is too much. And so I choose to stay home, but after just a few days, I’m starting to have weirdly Baby Jane feelings. It’s like there’s an invisible barrier in the front door, a Star Trek style force field that’s keeping me at bay. But this is a prison of my own choosing. I can leave if I want to. And nobody will serve me dead parakeet for dinner.

The days are long and hot, so I try to find ways to brighten them. For one, I have these fancy tea balls that blossom in the pot, the kind of thing that you save for when the imperial couple comes to visit. But I’ve asked them at least a dozen times and they always find a way to weasel out of it.

See? Here they are. “No, no. A thousand times no. Now stop asking!”

emperor waving

I can take a hint. I decided to go ahead and drink the fancy tea myself.

fancy flower tea

It tastes…slightly musty. I think. I can’t really trust my senses. Chemo does that, too.

I decided to look for beauty elsewhere.

One of the worst side effects of chemo is a terrible sensitivity to sound. I had bought a glass wind chime thinking the gentle tinkling would soothe, but it was instead a relentless clattering annoyance so I took it down. And then one of the cats smashed it. Good riddance.

Instead, there’s this, a freebie made by a local carpenter. They were handing them out at a neighborhood festival recently.

beer can wind chime

This was once a lowly beer can, but it was transformed to raise the simple pinwheel into an art form. (WordPress wants me to pay to include video so I’ll put that on Facebook.) It hangs from a branch in the peach tree outside the kitchen window, whispering sweet messages as it spins in the breeze, my own version of a prayer wheel. “Focus on your gains, not your losses.” “See the beauty in the everyday.” “Have the ice cream if you want it. You deserve it.” “You couldn’t handle yoga today. That’s OK. Tomorrow is another day.” “Don’t strangle the cats.”

It’s so easy to put more significance on the negative than the positive, to let the pains outweigh the joys. But I’m starting to believe this is a choice we make. We are programmed to believe that we need the bigger house, the faster car, the slimmer waist, the designer shoes/bag/watch/nose hair trimmer/whatever. But that is in essence letting someone else make our decisions for us, refusing to take responsibility for our own choices, and never, ever being satisfied with what we have.

So here’s the positive. My house is big enough and I like it. I don’t have or want a car; I don’t want a stranger’s name printed on my stuff. The ice cream was delicious. I did yoga after all and it was heavenly. The cats behave like cats; I expect no more or less from them.

For the most part, my body is still functioning properly.

I’m still alive.

That’s a lot. And that’s enough.

A Whammy of a Vagary

Many times over the past months, as I’ve been poked and prodded and obviously in pain, I’ve been asked, “Gaman dekimasuka? (Can you stand it?)” The word gaman could roughly be translated as ‘endure’, but it’s more than that. I think ‘suck it up’ is closer.

I’ve heard stories of things happening in the States that would not, could not, ever happen here.

Me bandana

Case 1: Standing in the supermarket checkout line, the man behind you notices your bandana and starts to chatter. “Oh, do you have cancer? Are you doing chemo? My wife went through that last year. What kind of cancer do you have? Hers was ovarian. We were back and forth to the doctor’s office so many times natter, natter, natter, blabitty blah blah…”

OH, SHUT UP, YOU MORON!

Nora and Haruki

Case 2: My friend Nora and family, Japanese husband and two kids, are visiting her hometown of Seattle. She is standing in line at a Starbucks, holding her daughter’s hand. Her baby boy is strapped to her chest. It is the late 1990’s. Adopting Chinese babies is all the rage within the yuppie community, which thrives in Seattle. Nosy Stranger leans forward and says, “What a cute baby! Did you adopt him from China?” Nora smiles and responds, “What, this little tyke? Heck no. I picked him up at Walmart. It’s so much easier than going through an agency. Imagine all the paperwork you can avoid! And everything’s made in China anyway. Just cut out the middleman. I’m thinking of returning him, though. He’s cute and all, but he makes an awful lot of noise and he smells funny. Good thing he’s still under warranty, right?” Nosy Stranger makes carp face, opening and closing her mouth as she tries to respond.

OK, my bad. Nora didn’t say any of that. It was her making carp face. How do you respond to something like that? “This is my own…I mean, he isn’t adopt…”

OH, SHUT UP, YOU MORON!

But as I said, these things would not, could not, happen here. As part of the gaman culture, Japanese people are brilliant at not noticing things they are not supposed to notice. To Westerners, this often makes them seem like hollow, insensitive robots. In fact, they hate high prices and traffic and screaming babies and their bosses and their neighbors just as much as anyone else, but they suck it up for the sake of harmony. This is neither a weakness nor a nobility. It is just how it works. And because of it, personal interactions with strangers are rare.

As a foreigner, I am used to sticking out, being stared at, the unwilling focus of silent attention. I was a little worried about going out in public, being the bald lady in the bandana. But people have done a phenomenal job of ignoring me. A couple of times, women have looked directly into my eyes and smiled a sincere warmth and encouragement that needed no explanation. The other day, the pharmacist complimented my scarf and earrings combination, ever so quietly, as she handed me my pills. But that’s been the extent of anyone acknowledging my condition. I am grateful for that.

A healthy dose of gratitude makes the vagaries of life so much easier to swallow, and cancer is a whammy of a vagary.

Poison

When we are faced with the unknowable, we search for solace and reassurance wherever we can find it. Some people turn to religion, others to denial. Although I’m a big fan of denial, I have tried as much as possible to turn to understanding. Early on, I read that my hair falling out was good because it meant the chemotherapy was working. But then yesterday I read that, in fact, all it means is that the chemo is having an effect, not necessarily a good one.

arsenic

Chemo is, in fact, toxic and my hair fell out because the chemo damaged the cells in my hair follicles. It is, in fact, damaging cells in my entire body, as one would expect of poison. This is only logical. If the wife discovered her husband was cheating and started mixing arsenic into his lemonade, then he suddenly started growing taller and more handsome, we would know either she can’t read product labels or we are reading a fairy tale. There is some logic to the workings of the universe.

For chemo, the reality is that while the toxic concoction is damaging healthy cells, which have the capacity to recover, it is also damaging cancer cells, which do not recover, at least in theory. The problem here is that every cancer is different, every person’s reaction is different, and unless another tumor makes its uninvited appearance, there’s no way to know if any of this is working. Everyone has cancer cells in them; most of the time our immune systems can murder the little buggers. Perhaps my extensive surgery and clean removal of the tumor was enough and my natural immunity could have killed off whatever cancer cells remained. Perhaps not. There’s no way to know. And radiation, which is supposed to have the same damage/repair effect, can also cause further damage to my already compromised lymph system and/or ignite some new type of cancer and then we start the whole inexplicable, unreliable, horrible process all over again.

It pained me to discover that the only proof there is that any of this treatment works is statistics. Women who undergo chemotherapy and radiation have a better chance, just a chance mind you, of outliving those who don’t. I can’t help thinking of going to the floating duck game at the county fair and expecting to pick the duck that wins you the giant teddy bear instead of the cheap plastic key holder. Statistically, it is possible to win that bear, but I wouldn’t stake my allowance on it. There are to many variables, too many ducks.

big bear

Yesterday, with all those contradictions gurgling through my chemical befogged brain, we went out for my birthday lunch, and not far from home I managed to trip over a pothole and tumble to the ground, not in that adorable way a toddler falls-down-goes-boom, but arms and legs flailing, ending up on my butt in the middle of the street. At least, much like a toddler, I started sobbing. And it only got worse as concerned strangers stopped to ask if I was all right. One woman even offered to drive us wherever we might want to go and when we said I was all right, she fetched a towel-wrapped ice pack, handed it to me, and drove away. Perhaps my bleeding palm touched her heart. Perhaps the bandana on my head told her all she needed to know. Either way, that simple act of kindness made me cry even harder, not jut from pain but also from frustration and helplessness.

I keep expecting to wake up from this nightmare and discover that it was all a fairy tale after all, that I chose the right duck and won the giant teddy bear. But the fact is that I didn’t choose any of this. Who would? The thing I have to remember is it’s not about choices, or at least not about liking any of the choices. When offered a choice of Japanese sweets, which generally look pretty and taste awful, I can always say I’m on a diet. But what’s the correct answer to, “Are you ready for your chemo now?” And how do I say yes to radiation when I know it may do more harm than good? But at the same time, how do I say no?