Tag Archives: chemotherapy

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

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.

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?

Fighting the Good Fight

boxing glovesSomewhere around 2005, I wandered into a ‘Fighting Exercise’ class at the gym, which turned out to be a form of boxercise, and I fell in love on the spot. It wasn’t long until I was doing kick boxing at sensei’s private dojo. I indulged in that exercise heroin for the next ten years, a stress-reducing producer of cleansing sweat. I will always love the resounding ‘thwack’ of a glove hitting a mitt.

So I thought I knew what fighting was, and couldn’t really understand what people meant when they talked about ‘fighting’ cancer. For me at least, so far at least, the whole process has been pretty passive. I try not to squirm while people in white coats and shower caps take things out of me or put things into me, and then I try to make my peace with yet another scar, another list of warnings and precautions, another rope binding me to a tree just in sight of Emerald City, knowing the heroin is in the poppies, not the gym.

If you do a search for chemotherapy side effects in Japanese, the first to pop up is irritability. (The American Cancer Society list doesn’t include it at all. That tells you something about Japanese society. And American society, for that matter.) The Japanese are masters of understatement, and in this case, they’ve outdone themselves. I can’t vouch for Japanese women, but pile chemo onto my naturally testy personality and you unleash a scaly, fire-breathing dragon that wants nothing more than to lumber along the streets of Tokyo Godzilla-style, punching old ladies, squashing butterflies and stomping on kittens. I thought the Nicodemon was scary; the Chemomonster is worse.

nemo kittens
No, that is not Nemo. It’s Godzilla. Trust me.

At the same time, as the chemo works its toxic evil, I get progressively more tired, a type of bone-weary I have never experienced. I have to walk slowly, can’t carry anything heavy, am becoming horribly sensitive to loud noises. Sometimes breathing seems like too much of an effort.

The good news is that means old ladies, butterflies and kittens are probably safe. At this point, a blue-haired granny with a cane and a limp could probably outrun me.

The other good news is my nurse assures me this is all temporary. If I can hold it together for five more months, it will be done and if the Goddess is generous, I will never have to do it again. So onward we go, one foot in front of the other.

But five months? That sounds like an awfully long time. If the Chemomonster manages to bust loose and starts ripping flowers out of your garden or puncturing your tires or otherwise being a nuisance, please have the courtesy to look the other way. Thank you.

Power

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

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

power port

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

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

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

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

Maya cat cookies

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

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

Farewell, Sweet Mousse

So much about cancer treatment is counter-intuitive. Granted, I found a lump in a place where there shouldn’t be one, but it didn’t hurt. Still, that led to an army of doctors and nurses and technicians and unemployed seamstresses sticking needles in me and lopping off parts I would have preferred to keep. And now they’re pumping me full of poison which is gradually and consistently making me feel worse rather than better. And they tell me that there’s no proof I even have more cancer nor that the medicine is helping if I do. The literature says chemo can reduce the risk of recurrence and aims to eradicate cancer cells that could grow and might result in tumors. ‘Can’, ‘risk’, ‘could’, ‘might’. Those are pretty wimpy words. What it boils down to is that all of this horrid treatment is done just in case, might merely be nothing more than a band-aid, and makes no promises. And don’t get me started on the word ‘treatment’. I used to think of it as a nice word. “I received surprisingly gentle treatment at the hands of the Hell’s Angels.” “Dali’s treatment of watches is a delightful blend of liquid and squishy.” For me, the word ‘treatment’ now means, among other things, pain, fear and fatigue. It’s very hard to cope with that reality.

So I keep looking for things to be grateful for. Here’s one: my support system. I have people, lots of warm, caring people who honestly wish the best for me. I’ve been offered prayers, Buddhist chants, the spinning of a prayer wheel, some Indian talisman stones and more good wishes than I can count. I gladly accept all with gratitude in my heart.

Rachel talisman stones

Here’s another: In time and with luck, the treatment will end and I can start working my way back toward some sort of normality, or at least accepting my new normality. At this point, each day is still more surreal than the last. It feels like I’m creeping up a slippery slope on my hands and knees, but at least I’m making progress. Somewhere on the distant horizon there is a unicorn sitting under a rainbow waiting patiently for me. When I finally get there, together we will sip honeysuckle nectar and nibble on fairy dust cookies.

Here’s a third: Hair care. I give the scalp a quick rub down with coconut oil after my shower and I’m good to go. I had not realized what I was being released from there. Google “hair care products” and you’ll get a whopping 47,200,000 hits. Yowza!

So at least for a time, I am freed from brushes, combs, shampoo, conditioner, treatment, rinses, dyes, tints, curlers, curling irons, straightening irons, perms, gels, mousses, waxes, pomades, barrettes, bobby pins, hair clips, elastics, scrunchies, hairnets and shower caps. I need no longer concern myself with ponytails, braids, bouffants, buns, cowlicks, bobs, waves, cornrows or dreadlocks. Oh, and let us not forget razors and tweezers. So long, my friends. Don’t slam the door on your way out.

OK, to be honest, there are only about six things on that list that were ever a part of my life anyway, but still, it’s a silver lining. Or silver plated, at least. Copper? Tin, maybe? You have to at least give me aluminum.

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.