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.
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.
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.
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.
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.
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.
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 Kinoshita Circus is Japan’s largest* and it’s a real circus, staged in a tent, complete with clowns, jugglers, contortionists, acrobats and animals. It was pure delight from start to finish (except for the motorcycles in the giant sphere. That act was entirely too loud and scared the pickles out of me). It was charming, totally professional and yet not quite, especially when the juggler dropped his bowling pin for the third time and the acrobat missed the trapeze and fell into the net. Kudos to him, though, as he climbed right back onto the platform and completed the act. There was an aged elephant who stood on her front feet, then her back feet, then looked right at me as if to say, “Well, what do you expect?” Four bored-looking zebras trotted around the ring in one direction then the other, barely stifling their yawns, eager to get back to their cabbage and carrots.
But then there were lions. There were eight lions, two each of tawny males and females, and four pure white females. They didn’t do much, just jumped through a hoop and did a couple of group poses. The males reared up, but there was no pretense at fierceness, no gnashing of teeth or snapping of whip. The tamer clearly loved them and was loved in return as he patted their magnificent haunches and tugged on their swishing tails. They walked around the ring, swaying their powerful shoulders and flipping their enormous paws. And we were seated less than ten meters away. I cried openly throughout the act, overwhelmed.
By the time we got home that evening, my scalp was beginning to show. So the next morning, armed with the lingering flush of being that close to so much feline magnificence, I plugged in the razor, took a deep breath and mowed a swath right along the top of my head from the middle of my forehead, a reverse Mohawk, an irreversible, total commitment. When I asked Rochi to help with the bits I couldn’t reach, he didn’t flinch, even though I know he was at least as scared as I was.
Picking up that razor brought back the feelings of waking up after my second surgery. As I gradually became aware of the tubes leading in and out of my body, the machines I was attached to, the medical staff bustling around, the difficult and painful recovery that lay ahead, I panicked. All I could think was, “I can’t do this. I just did this. I can’t do it again! I can’t!” I wanted to leap off the table, yank out the tubes and run away from the sterile room, the sterile hospital, the entire sterile, surreal medical world.
Instead, I remembered a visualization I had learned. I closed my eyes and found myself sitting comfortably on a warm rock in a sunny glade under trees swaying in a breeze lightly scented with jasmine. Surrounding me was my tribe, who had taken the form of pastel colored unicorns. Waves of empathy, compassion and love flowed from their soft, gentle eyes, all toward the center of the circle, all toward me.
I experienced all of that in just a few moments but it was enough. My heart stopped pounding. My breathing slowed. I opened my eyes.
Over the past few years I have kept having experiences that left me thinking, “Wow. That was the hardest thing I’ve ever had to do.” And I keep being wrong about that. But I have learned a valuable lesson: Courage isn’t a lack of fear. Courage is being afraid of something and doing it anyway. And I give thanks every single day for continuing to find that courage in myself and in the people around me.
*Big, squishy clowny hugs of gratitude to Randy and his friend for making this happen.
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.
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.
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.
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.
I never saw her face, never knew her name. She was bent all the way in half, either from osteoporosis or gravity, I’ll never know which. She was out there day after day sweeping up the leaves that had dropped onto the street from the trees on her side of the fence. She and her stump of a broom together celebrating uncountable birthdays, she always wore a housecoat, with thermal pants in winter and sagging tights in summer. I admired her dedication and would have tipped my hat but I never wear hats and she never looked up anyway.
Then one day she was gone. Some days went past. The leaves piled up. In time, the workers came in trucks and vans. They brought jackhammers and backhoes and power shovels. They opened the gate and knocked down the decrepit outbuildings, no doubt sending whole legions of critters seeking new homes. Then they gutted the house and removed its bones. The trees went next; even their roots were dug up and hauled away. Finally, the fences came down. In what felt like a blink, there was nothing left to prove that the old lady had ever existed.
Perhaps she was the last of her line; perhaps she had survivors who didn’t want to survive in such an old house. All I know is that when the workers drove away, they took with them all traces of the old woman, her life, her history, her blood and breath quickly fading into the eternal whirlpool of what once was but is no more.
Walking past that empty lot doesn’t make me feel sad so much as embarrassed, like I need to avert my eyes. It’s as if the old lady had been stripped naked and left behind by the tribe. I hope that’s not the case.
When I got off the train at Shibuya this morning, I noticed that my Pasmo prepaid train card wasn’t in its usual pocket in my backpack. After a moment of frantic scrambling, I realized I must have dropped it on the train. I scurried back and spotted my card lying on the floor just as the doors were closing.
SHIT! I said out loud.
It wasn’t a great monetary loss; there was only about 1000yen left on it. And in this honesty loving country, there’s a good chance I would eventually have gotten it back. It has my name printed on it and I registered my phone number with the train people when I bought it. But I would have had to go to the ticket counter, explain the situation, fill out a form, pay an extra fare, inconvenience throngs of other morning travelers, be late for work and get myself into a foul mood.
As all of that passed before my eyes, a young man on the train must have seen my expression and followed my eye line, because he immediately bent down, picked up my card, and waved it at me with a big smile. I nodded and smiled back with enthusiasm. Then we had a “what now?” moment and came to the same conclusion at the same moment. We both stepped toward the window, which he opened and passed my card to me just as the train started pulling out of the station.
I hope the unicorns of destiny did something particularly nice for him today. Grasping a moment to do something kind without thinking twice is a mark of all that is good in humanity. I have felt warm and fuzzy all day.
My dad was in the business of potato chips, as was his father before him, and I think another generation before that. Snack foods, particularly potato chips, were always a part of my upbringing.
There was a whole drawer in my childhood kitchen dedicated to snack foods: pretzels, beef jerky, Slim Jims, and of course, potato chips. I was born with fried potato coursing through my veins. We mostly ate the salted ones, but if one was feeling particularly sassy, there were also Bar-B-Q chips and sour cream and onion for the truly adventurous. But that was it.
Enter Japan and its obsession with improving on what was pretty much perfect to begin with. Now, to be fair, they came out with pizza chips a few years ago. Dusted with pizza sauce flavored chemicals and globs of chemically induced fake cheese, they’re actually pretty tasty.
I could get on board with the pizza chips. But then something went horribly wrong this summer. The potato chip train started to careen dangerously fast along the rails of the acceptable.
I began to encounter flavors that could only have been imagined by sweat-covered minions stoking the engines of the locomotive bound for hell.
Wasabi flavored beef jerky?
As the express train bound for the outer reaches the unimaginable rattled toward its inevitable doom, I suddenly felt a horrific shudder as the train derailed and tumbled into the abyss when I saw this:
mikan flavored potato chips
For all that is good and holy on this sweet earth of ours, how did this ever get past the censors? Granted, I’m a tad old fashioned and a bit of a purist, but what’s next? Soy sauce flavored ice cream? Sashimi served on a bed of cotton candy? Miso soup with marshmallows?
I say if it ain’t broke, don’t fix it, and plain old salted potato chips ain’t broke.