Category Archives: Cancer treatment

Horsepower

For a long time, each new year has felt like a temporal follow-on from the previous one. What difference does a new year make? Turning the page on a calendar doesn’t mean anything. Time doesn’t care how we count it. Time just is. Time moves forward; nothing changes.

But this year is different. With a silent whoop I tossed last year’s calendar in the trash. For once, there is something to celebrate. Last year was harsh. After the initial shock and fear, there was a slow dawning of the enormity of what lay ahead. After a time, I was moving on autopilot, incapable of even thinking about the future.

Most of what I did last year was passive. I had surgery, slept in the narrow bed, I ate the horrid food (sometimes). I opened the door to the doctor’s office, week after sweaty summer week, and received my chemo treatments. I walked to the hospital day after crisp autumn day and lay still for radiation. It would have been so much easier to run away.

kids statue

I spent an entire year having things done to me. I was the horse hitched to the wagon, the bit between my teeth, the reins being pulled by drivers I couldn’t see. I plodded along the trail, hoping I would reach my destination even though it seemed that each step forward pushed it farther away.

I feel as if an earthquake has shaken all the merchandise off the shelves in my internal warehouse. I see a mountain of mess, hair clips and a Barbie doll and a rubber snake and Christmas wreaths and chocolate cookies and tarnished earrings and broken dishes and knotted shoelaces and a one-eyed Teddy bear, a scratched record, some snarled yarn, a battered shoe box, a single sock.

Some of these things can be dusted off and returned to the shelves. Some can be salvaged, a bit of glue, some polish, a button. Some are lost causes. The coming months will see me sorting through the flotsam of me and trying to make sense of it, putting the pieces back together where I can, figuring out what no longer serves.

To do that, I will eat well, sleep a lot, watch butterflies flit and smell the flowers. I will also do yoga.

adriene

This is Adriene. She just started TRUE: 30 Day Yoga Journey. It’s online. It’s free. It’s the foundation I need to start getting back on track, start reminding my muscles and my spirit of what they can do, what they need, where they are going. Adriene has a an easy nature and a wonderful smile and manages to bring me back to the mat, day after day. There are hundreds of yoga classes online and I have tried many of them, but I keep coming back to Adriene. She is part of my journey.

I have been doing yoga long enough to appreciate the Zen it represents, the thousands of years of practice and millions of practitioners who have put their lives, their bodies, their faith into its calm, gracious power to heal. I know the joy of a pose feeling right regardless of how it looks, the freedom of air moving through my lungs, the pulsing electricity of blood flying through my veins, the serenity of balance, the golden, fleeting, priceless gift of each moment that no longer exists once it passes and yet is eternal in my memory.

A friend said I am a fierce woman ready to take 2018 and squeeze every last drop of magic out of it. Amen, sistah. Someone left the barn door open and I’m ready to bolt.

In 2018, I will heal.

mystic me

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Burn Baby Burn

I’ve been reading about a classmate of mine whose daughter has a rare and rather nasty form of cancer. My heart goes out to her, to him, to the rest of her family, their friends, and to everyone else whose lives they touch. I cannot begin to imagine how any of them are coping with that reality.

In the seemingly endless process of dealing with cancer, I have found one of the toughest struggles is making my peace with it. Half my intellect says, “This should not be; there is no logic to it.” The other half says, “It is what it is. Get on with it.” My heart contracts into fetal position in a dusty corner and weeps.

crying sumo

A sumo tournament of conflicting thoughts is thundering inside my head. A teenager with cancer is a tragedy; a middle-aged woman with cancer is not. But where is the tragedy? The middle-aged woman has already lived more than half of her life; she knows what she would have missed. The teenager has barely begun her journey; the future is a mystery no one can know. The middle-aged woman has probably seen tragedy, anguish, desperation in other people’s lives and in her own; with luck, the teenager has not. A teenager is more able to accept the unacceptable, to believe the unbelievable, to see the abnormal as normal. Acceptance may be harder for the middle-aged woman who has lived long enough to be aware of, and dread, some of the bumps and jolts that life will eventually offer. The teenager has the purity of belief that she is immune to the evils of the world, she is safe, indestructible, and all will be well.

You can’t compare the teenager and the middle-aged woman, the lamb and the ewe, the pristine silk stocking with the worn woolen sock. What value does experience have? What value innocence? When do we stop asking questions like that and just get on with it? How can we?

I was coming to the end of my endless radiation treatments when I had my final doctor visit. She said, “As you know, the effects are cumulative. The worst of it will be within the two weeks after treatment ends.”

THWAP! Out of nowhere, another boot hurled itself toward my head.

old boot

Ouch!

All along, every doctor I’d talked to said that most people don’t have any reaction at all. If anything, I was supposed to experience nothing more than a mild sunburn. Mild sunburn my Aunt Fanny! I am very pale and love to go to the beach; I know what a sunburn feels like. The day after the final treatment, my armpit looked like someone had left a hot iron on it. And it got worse over the next couple of days, eventually developing as severe burns do, then into a rash on the middle of my chest. The redness progressed sideways, downward and across my chest. I would have had to pull a Rip Van Winkle under a sunlamp to get this kind of burn. Perhaps the doctors meant the type of sunburn you might get on Venus. I’ve heard awful things about the beaches on Venus. Sunscreen SPF 462 is recommended, one factor for each degree Celsius of average surface temperature. Yeah, that must be what they meant.

The silver lining, if you care to see it that way, is that the worst of the burn is on the part of my armpit that is still numb from surgical nerve damage. I look at it, touch it, and know that it should hurt, but it doesn’t. That makes me wonder: where does pain go when you can’t feel it? And what is the purpose of pain that is not felt? If a tree falls in the forest and there is no one there to see it, does it hurt?

I have a hard time not getting angry at the medical people I’ve dealt with over the past year. The occasional sympathetic nod does not make up for the overall indifference. They either pat my knee and tell me I’m going to die (we’ll let that one go) or they understate the case so much that the reality is a shock. Their attitude makes me think of a quote from Buddhist scriptures: “Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned.” I’m certainly the one who got burned. But what’s the point in anger? It won’t make the doctors lose any sleep, won’t make my pain any less real.

I still have to believe, as they do, that the treatment will prolong my life. I’ve read that some of the effects of chemotherapy and radiation may never go away completely, but at least I will be alive to experience them. There’s no point in assigning blame, no point in calling any of this good or bad. It just is. I have to make my peace with all of that. If I am lucky and I am strong enough, I can find a way to learn from all of this and move on.

So, I slather myself with Aloe Vera and coconut oil and hope that they will work their magic. And I keep putting one foot in front of the other.

aloe

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.

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.

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.

What’s that smell?

deodorant

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

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

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

Who knew a smelly armpit could bring such joy?

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

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

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?