Category Archives: health

My Everest

The chemo treatment laid out for me takes six months. First there is a cycle of 12 weekly drips of one drug then four more drips of some sort of nasty cocktail, sadly not the kind with tropical fruit and a cute little umbrella in it, once every three weeks. That comes to a total of 16 treatments. I had done my homework and was prepared for most of the side effects. Or so I thought. In general, the bad days, at least physically, are no worse than a mild case of the flu. What they didn’t tell me was how testy and unpleasant my personality would become, how easily I would cry. They didn’t tell me how deeply psychological the symptoms can be; I always feel worse on days when I have to work. But I guess I should have expected that. Most of the discomfort can be relieved by a combination of napping, stretching, yoga, ibuprofen and Xanax.

One of the hardest things to deal with is explaining why I don’t have any hair. It’s really none of anybody’s business, but I am freelance, which means I work with scores of different people, and I don’t think it’s fair to them for me to I show up for work with no prior explanation. Directing in particular is very intense and requires total concentration; it wouldn’t do for people to be distracted wondering about where I may have left my hair. So I’ve been doling out the information on a need-to-know basis. My first instinct was to lie and say that I feel fine but have an unusual type of anemia that made my hair fall out. However, there are three problems with that excuse. First, if I’m talking with someone who knows anything about anemia, it will very quickly become clear that I am full of shit. Second, there will be days when I do not feel fine at all. Third, I don’t have a good enough memory to be a credible liar.

So I tried to come up with a list of believable reasons why my hair is gone:

I entered a skinhead cult, became a Buddhist monk, married an orthodox Jew, joined a high school baseball team, started Navy SEAL training, got a haircut so bad I had to start over, set myself on fire while playing with bottle rockets, had a severe allergic reaction to _____ (your choice)* and/or have lice.

Anyone who knows me at all knows none of those will fly. Except maybe the lice.

The truth, of course, is chemotherapy. But the mention of cancer scares people. And I can’t really blame them for that. So I’ve only told the truth to family and close friends, and even they are always surprised, saying, “Wow! You look great!” The word ‘cancer’ conjures up images of pale skin, sunken cheeks, anguished eyes. But that is not someone who is undergoing chemotherapy. That is someone who is dying. I am not dying, at least not yet.

me blue hat

A very valuable point a friend made is that not telling people is really an act of kindness. People who truly care will only be saddened, hurt even, oozing sympathy that just makes me feel worse. And people who don’t care will feel guilty about that and waste everyone’s time mouthing platitudes that border on embarrassing. Case in point: I had to ask for time off work for surgery, and the guy I work for said, “Oh, my! Shock! What a shock!” My reaction was, “Oh, clam up. What do you have to be shocked about? I’m the one who has to deal with this.” But instead, of course, I donned my best Mona Lisa smile and made soothing noises. “Don’t worry,” I said. “It’s minor surgery. I’ll be fine.”

In fact, and it didn’t really sink in until much later, my life is changed forever. The old normal will never return. I have to learn to live with a new normal. Almost on a daily basis, I find ways this has affected my life, sometimes in small ways, sometimes in huge ones. As I switch to my summer wardrobe, I realize many of my clothes don’t fit right anymore. As I gaze into the mirror at my naked self, I am dumbfounded. It’s much like the look the cats give me when I get home: “Who the hell are you and what are you doing in my house?” except that it’s “Who the hell are you and what are you doing in my body?”

So for work I settled on keeping it vague. “I have health issues. There are some jobs I will not be able to do for at least six months.” This is the message I send, politely but firmly, to any job request that I don’t have the energy for, with the underlying message, “Don’t ask questions, this is none of your business” and the even deeper underlying message, “Bugger off. I don’t want to work for you anyway.” If that means I am burning bridges, so be it. My perspective has changed. For the time being, my health and mental well-being get top priority.

Finding fun things to do, and fun people to do them with, helps scare away the depression monsters.

 

Yesterday, I went to the clinic for number eight of the 12 drips in the first cycle and we discovered that my veins are shot; needles go in but nothing comes out and the IV bag just hangs there looking forlorn. So next week I go back to the hospital to get a port inserted into my chest. That comes with it’s own kettle of rotting fish but overall should make things easier for everyone. And number eight is half way there, which I thought would make me feel better. It didn’t, but something else did. My nurse said I should schedule my one year post-surgery follow-up appointment now. “So soon?” I asked. She shrugged and said, “It’s best to book early. This is a small clinic with just one set of machines. And you’ll be done with all of your treatment by then.”

“Done with all of your treatment.” Those may be the prettiest words I’ve ever heard. Just for a moment, the clouds parted and the angels sang, butterflies flitted and unicorns danced. “Done with all of your treatment.” I had nearly forgotten such a state could exist. “Done with all of your treatment.” I wonder if she has any idea how much those words meant to me.

*I would be very curious about what my gentle readers might suggest.

 

The Surreal Zone

crazy mirror

I generally ignore the TV, but I happened to glance up the other day and was alarmed to learn that my hair is not shiny enough, my towels are not fluffy enough, my bed is full of bacteria and my shoes are stinky.

Although the hair is a lost cause at this point, my mother always told me the rest of those problems could be solved with cider vinegar;  perhaps times have changed. Apparently, if I steep myself in magical chemicals that come in brightly colored bottles, all these horrors of the human condition will disappear and I will be blissfully happy.

Well, that’s a relief.  I’ve got enough to worry about.

Case in point: When I asked my doctor how we know that the chemotherapy is working, he patted my knee, smiled and said, “We don’t. If you’re still alive in five or ten years, then we’ll know.”

I understand that doctors would rather not commit to anything, but I did read somewhere that losing my hair is a good thing, a silver lining, because it means the chemo is working. I may have written nice things about silver linings, but that one is a stretch, a tarnished, scratched and dented one lying under a pile of moth-eaten sweaters and mismatched socks on a rickety card table at a garage sale, because while the chemo monsters are, hopefully, gobbling up evil little cancer cells, they are also gnawing away at my immune system and doing their best to annoy many of my tender bits. In self defense, I have to paint my nails, use cuticle oil, moisturize from head to toe, figure out how to draw eyebrows, try to come to terms with hats, wigs and scarves, re-think my diet, re-learn how to do yoga and be very, very careful about how hard I push myself. Someone took my mirror and swapped it for a fun-house one that only reflects warped and distorted images. I have stepped through the looking-glass and landed in The Surreal Zone where nothing is as it was. Strawberries taste like oranges. Puppies speak Spanish and kittens speak French. Two plus two equals five. The Donald is my best friend.

Despite all of that piled on top of what the TV might have to say about my woeful inadequacies, a very kind friend pointed out that even a unicorn can get split ends in her mane and an occasional chip in her horn but she’s still a unicorn. Perhaps she’s a bit tarnished, scratched and dented, but then, aren’t we all?

So I have good days and bad and on the days when the bad is more than the good, there are butterscotch brownies.

butterscotch brownies

Fallout

When I was born, I had bright red hair, just like my grandmother. Or so I am told. In one of life’s petty cruelties, nobody bothered to take any baby pictures of me. On the other hand, my mother says I came out bright red and screaming, covered with a rash to match my hair. Several of the delivery room nurses ran away screaming. One of them fainted. Maybe I should be grateful that there aren’t any pictures.

Six months later, my mother picked me up out of my crib and my flaming hair remained on the pillow. I am told I was bald for a few months, then my hair grew in pale blonde and straight as a board. By high school, it had started to darken and curl and by my late twenties it was its current somewhere-between-blonde-and-brown. A few years ago, Mother Nature started tossing in grey as well. Tokyo humidity gives it a texture that varies from corkscrew to afro. Most of the time, I like my hair.

Now it’s falling out again, thanks to the toxic waste being pumped into my arm each week. Knowing this was coming, I got it cut very short a few weeks ago, thinking that would make the transition easier to handle. It didn’t. The change is devastating. It’s not just vanity; there’s more to it than that. They’ve taken so much from me already and they’re still not satisfied. Now they want to take my hair and, along with it, the last shred of my privacy. Unless I get a few tattoos and some extra piercings, I don’t have an exotic enough look to pull off bald, so the fact that I have cancer will follow me around like a spotlight on a darkened stage.

Sharing that stage with me is Anne Frank. Her story is currently in production and opens next week. I spent Sunday making aprons for her mother and the other woman who shared that spartan attic in Amsterdam.

aprons

As I sat there stitching and shedding, I thought about Anne and her family and the millions of others who were devastated by that war. I’ve seen pictures of women in the camps, naked, their heads shorn. I have no business likening my situation to theirs.

My yoga teacher started our last class with a quote from Richard Bach: “There is no such thing as a problem without a gift for you in its hands.” I am a firm believer in silver linings, in trying to be positive, in always looking for the good, even if it means having to look really, really hard.

I also believe in gratitude, in reminding myself each day how lucky I am. I have so much: plenty to eat, a warm bed, family, friends, money in the bank. And it was not so very long ago that a diagnosis of cancer was a death sentence. So I should be grateful for that, too. I should be grateful for the bounty in my life and that I was born as who and what I am, grateful that in my life, at least, there has always been peace.

I will try, but deep inside me there is a red-headed, red-faced baby banging her fists and heels against the floor and screaming in protest. I think I’m entitled to that.

Things Change

Rebecca Quirk unicorn

Late last fall, I wrote about the faceless old lady who had vanished into the dust along with her house. The site is now a parking lot and she is gone without a trace.

Late last fall, I finally managed to do a yoga headstand on my own. I was rather pleased with myself.

A couple of days after that, I found a lump in my breast.

Fast forward six months. Countless doctor and hospital appointments and two major surgeries later, I am now a person living with cancer. My body and life are changed forever.

Other than knee surgery 25 years ago, I’d never had much to do with the medical world beyond being grateful not to need it. So this whole process has been a series of shocks. It sometimes feels like the doctors and nurses have a storage room full of old, mismatched boots and each time I go for an appointment they judiciously pick one, dust if off, and then lob it at my head. I don’t want to go into all of it here; the details are out there on websites and blogs written by cooler heads than mine. Suffice it to say that there’s a lot to learn, a lot to absorb, and between overwhelming shocks there is endless waiting, endless questions the doctors and nurses can’t answer, endless gnawing fear that must be mastered because I just can’t live that way. I remind myself daily that it is what it is; it will not go away and must be coped with.

I used to schedule my haircut appointments on Wednesday mornings, because that’s when the salon wasn’t busy. They’d give me a nice, long head massage when they washed my hair, then a hand massage, sometimes two people at once, while my favorite cutter did my hair. It was heavenly. But the salon changed owners and my favorite cutter got transferred to a spiffy salon in a spiffy neighborhood which is just a tad too spiff for me.

Wednesday mornings are now designated chemotherapy time at the doctor’s office. The people who work there are all terribly kind and understanding. There is genuine compassion in their eyes; they know I don’t want to be there. But even so it’s hard to walk through the door. The urge to turn and flee is strong. Instead of massaging my head and hands, they’re going to pump poison into my body. And I’m going to let them and try to be graceful about it. As a very wise friend said early on, “It’s your boob or your life. Pick one.” Seems an obvious choice.

Something I have learned is that you don’t really “treat” cancer. You don’t even fight it, really. You either cut it out or you kill it. It comes down to a primal animal instinct: kill or be killed. It’s as simple as that.

And so I step forward into the unknowable, shoulders squared and head held high. If I need to take a moment to sit down and rest, I know I have my family and my friends and my tribe and the Goddess and the unicorns, and they’re all on my side. You couldn’t ask for fiercer allies than that.

Lisa Edmonds unicorn

The Kewpie Brigade

For reasons I don’t want to go into now, I found myself at the Self Defense Forces Central Hospital today. It was surreal.

Sitting in the window of the second floor cafeteria over a bowl of curry rice, I watched men and women wearing camouflage uniforms and army boots come and go. Looking at their faces, I felt a fundamental human connection: these people who go on peace keeping missions all around the world also get sick, just like me or anyone else. It was a humbling realization.

Then  I went into the hospital shop and found this:

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Who but the Japanese would dress a Kewpie doll in combat fatigues and send him crawling into battle on a cell phone strap?

And who but me would bring him home and pose him with a squirrel and a couple of cacti?

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Grandmother Curry

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Grandmother Curry

I would bet a bazillion, no, a gazillion dollars that my grandmother never, ever, not once in her entire life, made curry and rice. And I’d be willing to bet almost the same amount again that she never even tasted it. But as I’ve mentioned before in these sacred pages, curry and rice is mac and cheese to the Tokyo taste bud, soul food, a taste of home, of childhood, of comfort, of permanence in this all too transient world.

What my grandmother did make was really great vegetable soup. I remember once, in my snotty childish way, I asked my mother why grandma’s veggie soup tasted so good (with ‘better than yours’ implicit). She just sighed and said, “She puts sugar in it.”

And that got me thinking about our relative attitudes toward sugar. I read recently that America’s obesity is not altogether our fault. Yes, fast food and large sodas and triple scoop ice cream cones are personal choices, but apparently there is hidden sugar in nearly every product in American supermarkets.

I think that’s less true of Japanese food. In traditional cooking, sugar is added to most dishes, but we’re talking a teaspoon of sugar in a dish that serves four people. If there’s dessert at all, it’s most likely fresh fruit. So while sugar is rarely added to main dishes in Western food, our desserts usually start with a full cup of sugar, often more, and don’t forget to add eggs, butter, cream and chocolate.

Thoughts of my grandma also brought back thoughts of childhood fun, like summer fairs and carnivals, where we ate cotton candy, candy apples, caramel corn–in other words, sugar, sugar, sugar. Of course, sugary things are available here, but it is not uncommon to see a kid at a summer festival happily chomping on a cucumber skewered on a chopstick, perhaps with a bit of miso or salt, perhaps plain. Healthy, cooling, sugarless.

I suppose it is possible that my grandma had a secret life where she made and consumed curry with gusto. Perhaps she spent her summers following the country fair circuit, traveling around dispensing curry and rice from the back of a brightly painted van. If she did, I’ll bet another gazillion dollars that she put sugar in it.

The Halfway House

halfway houseAs part of the quit smoking odyssey, I joined an online support forum. It offers tons of information, but most importantly, you can join a group of others who quit around the same time as you. Through it, I have “met” some wonderful people who I believe will remain my friends for years to come.

One of the features of the site is a quit meter. You input your quit date down to the hour, the number of cigs you used to smoke every day and the cost of those cigs. When I checked my quit meter this morning, it said 6 months, 5 hours and 14 minutes, which means I have reached the Halfway House. At one year, we enter the Clubhouse.

I will not reveal the humiliating number of cigs I have not smoked, nor the exorbitant amount of money I’ve saved. Let’s just say that between the two of us, two months’ rent have not gone up in smoke. Literally.

I should be turning handsprings and chanting ditties about rainbow-colored lollipops. They say, “You did it! You quit smoking! Now you feel so much better and have so much more energy!”

Unfortunately, it turns out that is poppycock. It’s absolute, utter nonsense. It belongs with Santa Claus and the Easter Bunny. It’s the kind of stories people tell small children to make them behave. I feel horrible most of the time. I am moody and cannot trust my emotions. The problem is that only now, finally, my brain is getting adjusted to normal dopamine levels. It will be another six months before my metabolism returns to normal.

The glimmer of hope is talking to people who have been quit longer than me who assure me it will get better. At this point, I honestly only rarely want to smoke. My triggers seem to be limited to anger and frustration and if I can take a moment to close my eyes and breathe deeply, the urge passes. The thing is, once an addict, always an addict. I will have to remain vigilant for the rest of my life. But from the top of my head to the soles of my feet and deep inside my heart and soul, I know it is worth the battle.

I read a wonderful quote on the quit smoking site:

I’d rather be a non-smoker who has an occasional desire to smoke than a smoker who has a constant desire to quit.

*Twitchy sat on my lap for a few minutes this morning, another first. I think it was her halfway gift to me.

Baby Steps

PENTAX DIGITAL CAMERA As of yesterday, I am five months smoke free. (Pause for applause. “Thank you, thank you very much,” she says in her best Elvis voice.) And I’ve finally got some time off from work, so I have devoted this week to exercise. On Monday, I did Pilates and a step class at the gym. On Tuesday, I started a 30 day squat challenge. On Wednesday, I had my first yoga lesson with Kelly, who is a wonderful person, teacher and addition to my life. On Thursday, I did boxing and kicking classes at the dojo.

When I woke up this morning, I could barely move. My sore muscles have sore muscles, but I feel wonderful. One of the side effects of detox is sometimes crippling depression. This is normal and people quit longer than me keep saying it will pass in time, I just need to stay strong, take deep breaths, wait it out.

I hadn’t been to kicking class, and consequently hadn’t seen Sensei, for a couple of months. Part way through class, he looked at me and said, “Eda-san, you’re different. You’ve changed, and not in a bad way.” I just smiled, but I knew what he meant. As I work my way out of my nicotine-addled funk, I am discovering a whole other Eda I had forgotten about. She’s smarter, funnier, prettier because she smiles more. She’s gentler, kinder, more at peace.

The battle isn’t over yet, probably never will be. The nicodemon still lurks in dark corners and leaps out at me, much the way Twitchy attacks my toes at unexpected moments, but I can swat him away the same way I do her. The depression monster still wraps himself around my throat and squeezes, but it’s happening less often. Instead, in recent days, I have unexpected moments of happiness. I can’t think of anything to call it besides joy. I am finally free of that wretched addiction and can start to make my way down the path toward discovering myself and who I am without the chemicals.

It’s a journey that requires no suitcases, taxis, passports, visas, or plane tickets and all of the travel takes place inside my own head, but the destination is worth every iota of effort and pain it takes to get there.