The Blue Lollipop

blue lolly

I have spent the past few years trying, with some success, to cultivate a sense of gratitude. I don’t mean Pollyanna gratitude: “Thank you so much for the one legged blind teddy bear that smells like old dog! It’s the best Christmas present ever!” No, what I mean is more a sense of finding what is unique or at least special about my life, my family and friends, the things I live my life among, and loving them for what they are, giving them the value they deserve. It’s also putting envy into perspective. I will always be envious of some things: people who are tall, people who can do math, people who can eat eggplant, people who can sing or juggle or Magic Eye. I know I will never have or be those things but I can envy those people without actually wanting to be them. I can see something beautiful in a store and enjoy its beauty, bask in it even, without wanting to own it, pleased that it exists but not needing it in my life, allowing my magic credit card to rest.

So now I am trying to find gratitude in the fact that I had my final radiation treatment today. There will be no more solitary morning walks to the hospital, no more taking off my shirt and lying on the table while people whose names I don’t know draw on me with magic markers. No more waiting in the pink paper line, no more pulling out my magic credit card and paying the bill, day after day after twenty-five days.  I can sleep in. I can take my time with morning yoga, finally start to work back toward where I was when this all began. I can finally start scrubbing the map of Arizona off my chest.

honey

(As a side note, one radiation treatment costs just about the same as a 1200 gram bottle of organic Acacia honey. Given a choice, I’d rather have the honey. Extra irony: my credit card is magical because it can somehow withdraw an unlimited amount of money from my bank account. The organic honey store only accepts cash.)

When I was dressed and opened the curtain, the radiation room was deserted. There was nobody to say good-bye to except the horrible machine but we had never really made friends. It felt strangely unfinished, like I should get a lollipop or a balloon, something to mark yet another passage through the surreal world that my life has entered.

So I walked back home, just another day, and got to work on the script for a program I will direct next week. In the program, three teams compete to make the springiest food they can come up with. One makes a gelatin-and-starch-based, multi-textured pudding (ugh), another makes a sticky rice ball seasoned with tomato and basil and topped with fish (blech) and the third, the crown jewel, is a blue, bacon-flavored lollipop made of mochi and swathed in mustard-flavored cotton candy. I kid you not.

monkey

Monkey Boy was minding his own business, having a nice nap in front of the kerosene heater, when I barfed on him. And then I realized I had something more to be grateful for. Nobody will ever force me to eat a blue bacon-flavored mochi lollipop swathed in mustard-flavored cotton candy. And as wild as my imagination may be at times, it will never go that far. For that, I am also grateful.

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Naughty and Nice

Most of what you’ve heard about Japanese manners is true. There are prescribed behaviors for nearly every situation. This makes social interaction glitchless since everyone usually knows exactly what is expected of them.

There are exceptions to accepted behavior, of course, although most rules follow the concepts of honne/inside and tatemae/outside. In a nutshell, it’s OK to fart in public but you wouldn’t do that at the dinner table. One of the most extreme examples I ever saw was a Japanese man standing under a “No Smoking” sign at an airport. He was smoking, and when he was done, he dropped the butt on the carpet and ground it out with his shoe. He probably doesn’t do that at home.

hospital elevator

Elevator etiquette is simple and clear. Whoever gets in first holds the “Door Open” button until everyone else gets in. When we arrive, that same person holds the button again until everyone gets off. I’m very careful about this, especially at the hospital, not just because it is expected, but also because many of the others in the elevator are worse off than me, with canes, walkers or wheelchairs. No one should be penalized for being broken or sick, and the good little girl inside me feels good about being good. Plus, nobody can have too many brownie points.

The other day, however, a woman held the “Door Open” button while I got on, but when we got to the dungeon, she dashed off first, leaving me to fend for myself. I just shrugged, figuring she was a) in a hurry, b) oblivious, c) hates foreigners or d) a bitch.

I followed her to the computer where we scan our bar codes and of course her name went up above mine on the monitor. Two minutes later, the tech called me.

I don’t know why that happened.  I’m quite sure it isn’t because I am a Badass Unicorn Juju-powered Hottie, although that certainly doesn’t hurt. Most likely, the machine was already set up for zapping torsos and she was there for some other body part. Whatever the reason, I thanked the Goddess and was careful not to look at her as I was leaving, although the bad little girl inside me was throwing mud pies and sticking out her tongue.

Giblet Gravy

When I was a kid, my grandpa (maternal) always came to our house for Thanksgiving and we went to my grandma’s (paternal) for Christmas. As I remember it, Ma would get up early to stuff and roast the turkey and then prepare all the other fixings and by the time everything was ready, she was exhausted and in a grumpy mood. But then Grandpa would wield the carving knife and sharpening wand (apparently this is called a ‘honing steel’) and everyone would smile. Also, for once in the year, we were not required to eat stuff we didn’t like, which for me meant turkey skin and mashed sweet potatoes. But regular mashed potatoes? Stuffing? Homemade cranberry orange relish? Bring it on, baby.

スクリーンショット 2017-11-26 16.30.20

Gourmet Night at Fawlty Towers

But then there was the giblet gravy.

Wikipedia defines giblets as edible fowl offal. (That ought to put you off your crackers right there.) Every year, Ma would ruin her silky smooth homemade turkey gravy, rich with bird drippings and roasting pan scrapings, by adding said offal to it. Nobody liked the giblets very much but nobody ever said anything either because, well, family. I would look at my magnificent mountain of mashed potatoes, dripping with melted butter and, with a sigh, pour on the giblet gravy.

During my freshman year in college, Grandpa passed away. The next time I was home for holidays, probably Christmas that year, I was in the kitchen with Ma when she was making gravy. She started chopping the offal and I said, “You don’t have to do that.”

“What?”

“The giblets. Nobody likes them, not even you.”

“Grandpa does.”

“Grandpa’s not coming.”

She gave me a blank look for a moment and then, just like that, we never had giblet gravy again. We got to revel in the smooth and silky and the cats ate the offal.

This all came to mind because my 54th Thanksgiving came and went and I celebrated with a head cold and a bowl of chicken soup. I had expected to start recovering by now, but that isn’t happening, won’t happen for some time to come.

I continue to be amazed at what they don’t tell you about cancer treatment. I made a point of doing diligent research because there were bound to be cultural and language barriers involved in how this is done, but even the English websites like breastcancer.org, the NIH and the American Cancer Society don’t give you much detail. I dug around and followed links and when I finally got close to what I was looking for, they invariably said, “Talk to your doctor.”  But my doctor is not very cooperative.

Before we got started on chemo, the doctor told me I have a very rare form of cancer and that we would follow the standard treatment.

“But how can there be a ‘standard’ treatment if the cancer is so rare?”

“The treatment is world standard, not just Japan standard.”

“That’s not what I asked you.”

“I’ll show you the website.”

“You’re not answering my question.”

“Here, look at this American website.”

“Oh, never mind.”

I was told he behaves that way because he doesn’t like the way many doctors in Japan pussyfoot around illness, refusing to tell their patients just how sick they are. Instead, he goes way too far in the opposite direction. I have been baffled by this. Why tell someone they’re dying when they’re not? What possible benefit is there in scaring the pickles out of someone who is already scared? Am I meant to be grateful to him when the test results come back negative? But all he did was hand me the results. The nurse who managed to get blood out of my damaged veins and the lab technician who did the test deserve more recognition.

It took a lot of research and some tooth-pulling to finally determine that it doesn’t matter that the type is rare. And the term ‘standard’ is not quite accurate. It should be ‘strongest’. Because the tumor was large and starting to spread, they hit me with the strongest stuff they had because it has the greatest chance of being effective. If I couldn’t take it, they would try something milder, but by doing that I would lose effectiveness percentage points. I try not to dwell on the thought that the surgeon may have gotten all the cancer and there isn’t any need for any of this horrible treatment, while at the same time, there’s never any guarantee that it won’t recur or some new cancer will rear its ugly head and we start all over again. It happens.

The first part of my treatment was a three month course of Paclitaxel. The famed nausea that comes with chemo was well-controlled with steroids. My hair fell out, but that was also expected. Lung impairment was on the list; I expected it after being a smoker for so many years. Even bone-weary fatigue was explained and no surprise when it kicked in. What they didn’t mention was disorientation, memory loss, digestion issues, dry skin, broken nails, blurry vision, tinnitus and a level of grumpiness that makes Ma on Thanksgiving look like Mother Teresa on Valium at a day spa. Even now, four months after finishing Paclitaxel, I have new symptoms. This time it’s swollen feet and hands and pain in the joints and muscles of all four limbs. I was told that the pain comes from nerve damage caused by Paclitaxel and could last for years.

I’m angry and frustrated, but there isn’t any point in yelling at anyone. I’m enough of a grown-up to know that…most of the time. Still, I have to wonder; if they had told me in the beginning how hard this was going to be, would I have had the courage to do it? To be honest, I think I would have. Early on in this odyssey, one of my oldest friends, who is also a doctor, said, “It’s your boob or your life. Pick one.” Simple, direct, absolute truth. I picked. There is only one road that leads where I am going and I have to follow it.

As much as I hate the idea, percentage points is what it comes down to, and all the medical world has to offer. Cancer is unpredictable, and each person’s body reacts differently, so each cancer case is unique. In the social atmosphere of the ’60s, that might have been a cool thing, but in terms of human mortality, it means I will spend the rest of my life walking on a tightrope. There are no guarantees, no promises. Tall or short, beautiful or homely, wealthy or poor, dedicated athlete or couch potato, vegan or MacDonald’s addict, we’re all in the same boat. Nothing stands along the bus route to the terminal station except statistics and dumb luck.

hospital bus

I thought I was safe, but someone put the giblets back in my gravy.

‘Snot Good

For reasons that escape me, there is a statue of Florence Nightingale in the lobby of Tokyo Medical Center, where I get my daily dose of radiation.

Nightengale at the hospital

I asked her what she’s doing there, but she’s mute on the subject.
Nyar, nyar, nyar.

I still haven’t made my peace with having a disease that doesn’t make me nearly as sick as the treatment to get rid of it, but if I don’t do the treatment, the disease will kill me for sure. Cancer contradictions are varied and frustrating. Death Star tends to overstate his case, but after all he is focused solely on boobs, all day every day. The radiologist at the hospital shrugged and said, “It’s just breast cancer. It’s perfectly manageable.” I guess from his perspective, it is. He must have seen things I can not, don’t want to, imagine.

All the same, it’s still cancer, and the treatment is no picnic. After a year of  it, I’m pretty worn down. On top of that, or maybe because of it, I have a cold. It takes two weeks to get over a cold, says my mother, or with medication, it takes 14 days. (She is very wise.) I read somewhere that despite enormous progress in modern medicine, nothing can be done about viruses except control the symptoms and let Mother Nature steer the ship.

But now I am wondering how long it takes to get over a cold after two major surgeries, six months of chemotherapy, twelve rounds of radiation (with more to come), endless pain killers, steroids, radioactive isotopes, some really doubtful hospital cuisine and way too many doughnuts. I’ll let you know.

In the meantime, here’s a piece of wisdom I discovered this morning: Do not attempt a yoga headstand when you’ve got a cold. Gravity and phlegm do not get along. You will find yourself in the fast lane bound for Dizzytown.

On a lighter note, Mt. Fuji put in a rare appearance today. I find it very important to find something, at least one thing, to be grateful for each and every day. Yesterday it was the 1/16th of an inch of hair that has appeared on my head. Today is is Mt. Fuji, which is much more significant in the grander scope of things, but relatively insignificant from where I’m sitting. You can have the mountain; I’ll take the hair.

Carrot Tower Fuji

One Toke Over the Line

Way back in 1970, Mike Brewer and Tom Shipley recorded “One Toke Over the Line”. Spiro Agnew called the two subversives because of the song’s drug references, but it was a really good song. Come on, Spiro, a little perspective. They were only singing about pot. Alcohol and refined sugar do a lot more damage, and they’re both legal, as is selling guns to deranged people. But I digress.

Brewer and Shipley 1970

“One Toke” is still a good song, and they’re still singing it. They look a little different, although I think Tom looks pretty hot.

Brewer and Shipley 2016

It was such a good song that Gail and Dale covered it on the Lawrence Welk Show.

One Toke Cream Cheese

Those two are so wholesome I could sprinkle them on my morning oatmeal. Where can I get myself a butterfly apron like that?

Maestro Welk referred to the song as “a modern spiritual.” He and the producers must have heard “sweet Jesus” and “sweet Mary” and assumed it was a gospel song. Too bad they were too lazy to ask someone what “toke” means. I’ll bet any of the musicians in the band could have told them. Maybe Gail and Dale knew, too, and that’s why they’re smiling. But those smiles strike me more as “Honk if you love Jesus” than “Pass me the bong.”

Wholesome, healthy family entertainment. Remember “Mutual of Omaha’s Wild Kingdom”? Or “The Wonderful World of Disney”? Those programs made Sunday evenings the holy Mecca of the week. I remember being young enough that I was allowed to watch Disney but had to go straight to bed after it ended. I don’t remember watching Lawrence Welk, but I doubt champagne music would have appealed to me as a kid. As an adult, I can’t stand it and have always hated accordions, Welk’s chosen instrument of torture. Honestly, I’d rather listen to off-key bagpipes.

These days, the clock ticks past 8:30 and I am ready for bed. The word “weary” has taken on new meaning. From tomorrow, I have to push myself through three more weeks of radiation and then my poor body will finally be allowed to rest. I’ve been pumping it full of drugs and poison and nuclear fallout for ten months. Enough, already. It feels like I’m several dozen tokes over the line.

*******

Little known fact: Lawrence Welk talked funny because English was his second language. He grew up in the German speaking community of Strasburg, North Dakota. I had always assumed he was Italian, “A-one and a-two…”

Ode to the Hot Fudge Sundae

I had a dream that my mother got all done up in a Victorian costume complete with granny glasses, a bonnet and petticoats. She was spinning alpaca hair. When she tired of that, she went to work on an heirloom quilt with a futuristic theme of celestial orbs and other heavenly objects. Toto was looking on, barking encouragement.

Oh, wait. That wasn’t a dream.

space ma with Layla

I had a dream that a bunch of strangers in white coats and masks came at me with needles and knives and bits of thread and hacked away at my torso until it looked like a dart board after a frat party. Then they pumped me full of poison for months on end and put me on a strict regimen of daily exposure to photon torpedoes until my matter and antimatter were scrambled eggs. To get revenge, I made a voodoo doll to represent all foolish mortals who dare to wear white. I grew feverish as I jabbed pins into its vulnerable body. My eyes rolled back into my head and I laughed the laugh of the possessed. Bwahahaha!

Oh, wait. That wasn’t a dream either.

Voodoo doll

I had a dream that I sat with a spoon poised over a hot fudge sundae. The quickly melting ice cream was just starting to drip over the edges of the fluted glass. The succulent cherry poised on top glinted in the afternoon sun. My spoon hovered. I hesitated, savoring the moment, the whipped cream taunting me with its sensual froth. My taste buds quivered in anticipation, while minuscule droplets of drool percolated at the corners of my parted lips. My ego calmly rationalized, “There’s a cherry on top. That’s a fruit. It’s healthy and nutritious.” At the same time, my id ran around in hysterical circles, waving its arms and screaming, “Cream! Sugar! Calories! Fat! Gimme! Gimme NOW!”

Now THAT was a dream. There’s no hot fudge in Japan, silly.

Peko chan

Zap

Tokyo Iriyo Center

My radiation treatments are done at Tokyo Medical Center, every Monday to Friday, for five weeks. Each morning, I get up, do some yoga to center myself, eat breakfast, then walk to the hospital. It takes less than half an hour. The weather is crisp; there are piles of dry leaves to shuffle through. I could not have done this during chemo, not that distance, not in summer heat.

When I get to the hospital, I put my ID card into a machine which prints out a piece of paper showing my patient number and a bar code. The paper is pink. Everyone gets a piece of pink paper. The Tokyo Medical Center is a large complex, with what feels like hundreds of hamsters scurrying around, grasping our pieces of pink paper, trying not to look worried, but sadness hangs thick in the air.

radiation sign

I head downstairs to radiation, into the rabbit hole, once again into the surreal zone. I scan my bar code into a computer and a monitor tells me how many people are ahead of me. I settle into one of the vinyl chairs in the hallway to wait. When my turn comes, a technician comes to collect me.

The first time I saw the radiation machine, I did a double take because the set-up looks much like the stirrups at the gynecologist’s office. But before I could object, the technician explained, much to my relief, that my head goes there, in the middle, and my elbows and wrists go in what I had thought were stirrups.

I lie down on the table and they put a triangular cushion under my knees, which is very nice, even more comfortable than a yoga bolster. The female technician takes out her marker and repairs the potholes in the road map of Arizona (see November 7 post). Then she jiggles me into exactly the right position, and zap then zap again and I’m done. The whole process takes less than ten minutes. I put my shirt back on and return to the land of the living where I wait in line to return my pink paper, then wait for my number to be called so I can pay my bill. I wait much longer for that than for treatment, but the waiting lobby is large and airy, a sunlit atrium, the inevitable TV sets on but turned low. It’s not so bad.

When I went in for orientation, they told me several times that hospital services are first-come-first-served, but I’ve already noticed that they let me skip ahead in the line at radiation and have wondered why. Because I’m younger and quicker than most of the other people waiting in the vinyl chairs? They’ve twice let me go ahead of an old lady in a wheelchair. Once I went ahead of an old man who shuffled in after me, slowly, leaning on a cane. I assume I hop onto the table more quickly than either of them can.

So today’s list of gratitude: a pleasant walk to the hospital, crunchy leaves in cool breezes, not having to wait long, being young enough to hop, being able to hop at all. And unicorns. I’m grateful for unicorns, especially pink ones. I don’t care about pink pieces of paper. But I will be grateful when I’ve seen the last of those.  bookshelf unicorn

The Bald Ambassador

We had some business at the American embassy a couple of weeks ago. Because of the pissing match going on between the spoiled brats in Washington and Pyongyang, security at the embassy is tight. It’s a good thing we were early for our appointment because it took twenty minutes to get inside.

army knife with quarter

They didn’t go so far as a cavity search, but they did confiscate Rochi’s 1.5 inch Swiss army knife. It would have taken some pretty serious Shawshank Redemption style effort to do any damage with that. I was starting to lose my patience when, at the final checkpoint before entering the hallowed ground, a guard asked me to take off my head scarf. I stared at him, raised my hand as if to touch it and started to shake my head, “No.”

I’m usually a fairly cooperative and obedient citizen when it comes to things like that, where arguing usually causes more trouble than it’s worth, although it does piss me off when they make old ladies take off their shoes and get out of their wheelchairs to hobble through airport metal detectors. This wasn’t so very different from that. I understand security and one rule for everyone, but I will not be balded at the entrance to the embassy.

The guard stared back at me. I could see him mentally clicking through his training manual, then his eyes flew open and he said, “Gan desu ka? (Is it cancer?)” Too annoyed to be surprised at such a direct and personal question from someone it is safe to assume is a normally reticent Japanese, I raised one of what was left of an eyebrow and slowly nodded once. He let us pass.

As annoying as the experience was, the story gets better with time. I told a gay friend about it and he burst out laughing. “Did you just use ‘bald’ as a verb? I guess if you can ‘out’ someone, there’s no reason you can’t ‘bald’ them.” Indeed.

me in pink

Yoga!

yoga calendars

I finished chemotherapy almost five weeks ago. As of Monday, it was time to start radiation therapy. To do that, I first had to have another CT scan to make sure my organs are where they’re supposed to be, I guess. At this point, I don’t ask. I just do what I’m told with a soft “baa” under my breath. (“Baa” is the sound a unicorn makes when it’s pretending to be a sheep.)

Next, I had to have my chest marked so the technicians would know exactly where to aim their ray gun. That seemed like a sensible plan. From the extensive knowledge I had gleaned from TV hospital dramas, I thought they would put a couple of inconspicuous dots on my chest. They used to tattoo them, but now they use indelible marker, the kind you use to write your name in your underpants when you go to summer camp.

After they had finished with a bunch of poking and prodding and measuring and picture taking of various sorts, three technicians came at me armed with markers. I couldn’t see what they were doing since my arms were above my head in banzai pose and I wasn’t supposed to move anyway, but they went at it for quite a while. When they were done and I looked in a mirror, I did not discover a tasteful dot or two that could be mistaken for Mae West style beauty marks. Instead, I found what looked like a map of Arizona. My surgery scar pretty much follows the Grand Canyon and the the Hopi and Navajo nations are nestled in my armpit, where they are welcome. Despite daily stretching and yoga, I still can’t feel anything there anyway.

I have followed a very unfocused but dedicated yoga practice for about a year and a half, even more dedicatedly since I started chemo, partly to structure my days and partly because there wasn’t much else I could do. But instead of Vinyasa or Ashtanga, both of which I love but take a fair amount of power, I’ve had to keep to Hatha, Yin and restorative, which are slow and gentle and keep me centered and sane even if they don’t help much with muscle strength.lacquer box

 

I have a lovely lacquered box filled with colored pens and pencils and a variety of stickers and a pair of granny glasses which I use when I write my activities on my yoga calendars. If anybody were to ask me, “Where were you on October 4th?” I could honestly say, “I did a 38 minute Hatha yoga class followed by a ten minute anxiety relief meditation and then went to my final chemo session.” And if asked, “Do you remember any of that?” I could honestly say, “No, not really.” Chemo brain fog has its benefits.

Despite what my regular doctor said about metastasis and pneumonia, and I have since nicknamed him Death Star, the radiologist said that my lungs are now clear and any shortness of breath I’ve still got is because I haven’t been able to exercise properly for so long. He was very supportive of yoga. I had told dozens of doctors and nurses that I do yoga and really believe in its benefits, but I mostly got blank stares, sometimes even condescending sneers. Death Star scoffed at me, saying, “Yoga is easy.” I just raised an eyebrow and said, gently, “There are lots of different kinds of yoga.”

For the first time in a long time, I’m starting to feel better. The evil chemo monster, kicking and screaming, is finally being dragged off center stage. Fears of some sort of horrid mutiny inside my lungs appear to have been unfounded. Radiation, so far at least, is quick and easy and unlikely to make me grow horns or start speaking in tongues. And I have permission to get back, gently at least, to doing some real muscle work. And that pretty much brings us full circle. I first noticed the lump about a year ago, just when I had started working on doing a yoga headstand. And now I’m back to working on the headstand. If you don’t believe me, proof is in the peacock.peacock butt

 

Do I feel vindicated? You betcha. Does it matter? Not a whit. The fact that I am starting to feel better matters more than anything else.

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