Category Archives: Cancer

Eye Candy Is Just as Sweet

I had promised myself ever since my diagnosis that I would not allow cancer to define who and what I am, but I have to admit it’s an uphill battle. The treatment seems to have a mind of its own and it’s a daily chore finding ways to cope with it.

pink elephant The best analogy I’ve found is the one I came up with last November when I was first diagnosed. It’s a pink elephant. He is comfortably seated on my left shoulder, gently wrapping his trunk around my throat with a slightly sinister twinkle in his eye saying he could tighten that grip any time he feels like it. And although he is always there, and I am constantly aware of him, only a very few others can see him. I hold my piece as my friends complain about the shortcomings of their husbands or the broken headlight on the car or the lack of pistachio ice cream at the supermarket. Those things will pass. Mine will not. The pink elephant is there to stay.

So I am doubly grateful for the rare moments that distract me from his infernal, pink presence. One such happened a few weeks ago.

Ghost college

Nihon University is one of the largest in Japan with campuses strewn across the entire Honshu area. With it’s affiliated schools, kindergarten through graduate school, the student body includes over 100,000 souls. Earlier this year, they opened a small campus just a few blocks from my house. It only offers two majors, Risk Management and Sports Sciences. Not to be too judgemental, it’s pretty easy to guess which is which among the students. The skinny, pimply ones are the risk managers, the others do sports. Since it’s new, the number of student is still very small, so I affectionately refer to it as the Ghost College, but I assume they’re expecting more students, at least hungry ones, because there’s a rather nice cafeteria on the first floor of the main building. Open to the public, it’s wide and airy with floor-to-ceiling windows on two walls and plenty of seating. The food is what you’d expect: curry, ramen, curry with a pork cutlet, ramen with a pork cutlet, salad.

We sat down by the window so I could survey the view and I tucked into my curry. There were two rather large fellas seated at the next table. Judo, I’d guess. Then I gradually became aware of others seated around the room. The risk managers must have been busy managing risk because the room was packed with tidy, trim bodies, not a pimple in sight. And it wasn’t just the students, either. I noted leather-patched elbows and the occasional necktie on what must have been instructors, and they were just as tidy and trim as the students.

And then a young fellow a few tables away stood up. I noticed his form, couldn’t help it really. A swimmer, without doubt. As he turned away from his table, he happened to glance at me, and as he did, he smiled, showing straight white teeth, pink cheeks, and, Oh, God, spare me please, dimples. I nearly swooned, dropping my spoon into my curry and knocking over my plastic water glass to spill all over my plastic tray. But despite all that, and just for a moment, the elephant flapped his Dumbo ears and gently floated off my shoulder. Now I know why the caged bird sings.

The curry was perfectly edible and nicely balanced with a small salad. The eye candy topped it off as a calorie-free, but completely satisfying, dessert. And all of this for around $4. Who says Japan is expensive? And what price can you put on a moment of freedom?

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

Pinwheel

sunrise

The pure, white light of the Tokyo summer sun is an evil spawned in Hell. She somehow cooks both down from above and up from below, creating a population of rotisserie people dripping their way along the concrete highways and byways of the city. She could suck the smile off Mickey Mouse’s face, and he’s the happiest mouse in the world. Even with a sun hat and parasol, she still wiggles her inquisitive fingers under my arms, between my toes, down the back of my sweaty shirt.

I could leave the house if I wanted to, but chemo magnifies the effects of the heat by about 1000% and the pain of trying to breathe the miasma is too much. And so I choose to stay home, but after just a few days, I’m starting to have weirdly Baby Jane feelings. It’s like there’s an invisible barrier in the front door, a Star Trek style force field that’s keeping me at bay. But this is a prison of my own choosing. I can leave if I want to. And nobody will serve me dead parakeet for dinner.

The days are long and hot, so I try to find ways to brighten them. For one, I have these fancy tea balls that blossom in the pot, the kind of thing that you save for when the imperial couple comes to visit. But I’ve asked them at least a dozen times and they always find a way to weasel out of it.

See? Here they are. “No, no. A thousand times no. Now stop asking!”

emperor waving

I can take a hint. I decided to go ahead and drink the fancy tea myself.

fancy flower tea

It tastes…slightly musty. I think. I can’t really trust my senses. Chemo does that, too.

I decided to look for beauty elsewhere.

One of the worst side effects of chemo is a terrible sensitivity to sound. I had bought a glass wind chime thinking the gentle tinkling would soothe, but it was instead a relentless clattering annoyance so I took it down. And then one of the cats smashed it. Good riddance.

Instead, there’s this, a freebie made by a local carpenter. They were handing them out at a neighborhood festival recently.

beer can wind chime

This was once a lowly beer can, but it was transformed to raise the simple pinwheel into an art form. (WordPress wants me to pay to include video so I’ll put that on Facebook.) It hangs from a branch in the peach tree outside the kitchen window, whispering sweet messages as it spins in the breeze, my own version of a prayer wheel. “Focus on your gains, not your losses.” “See the beauty in the everyday.” “Have the ice cream if you want it. You deserve it.” “You couldn’t handle yoga today. That’s OK. Tomorrow is another day.” “Don’t strangle the cats.”

It’s so easy to put more significance on the negative than the positive, to let the pains outweigh the joys. But I’m starting to believe this is a choice we make. We are programmed to believe that we need the bigger house, the faster car, the slimmer waist, the designer shoes/bag/watch/nose hair trimmer/whatever. But that is in essence letting someone else make our decisions for us, refusing to take responsibility for our own choices, and never, ever being satisfied with what we have.

So here’s the positive. My house is big enough and I like it. I don’t have or want a car; I don’t want a stranger’s name printed on my stuff. The ice cream was delicious. I did yoga after all and it was heavenly. The cats behave like cats; I expect no more or less from them.

For the most part, my body is still functioning properly.

I’m still alive.

That’s a lot. And that’s enough.

A Whammy of a Vagary

Many times over the past months, as I’ve been poked and prodded and obviously in pain, I’ve been asked, “Gaman dekimasuka? (Can you stand it?)” The word gaman could roughly be translated as ‘endure’, but it’s more than that. I think ‘suck it up’ is closer.

I’ve heard stories of things happening in the States that would not, could not, ever happen here.

Me bandana

Case 1: Standing in the supermarket checkout line, the man behind you notices your bandana and starts to chatter. “Oh, do you have cancer? Are you doing chemo? My wife went through that last year. What kind of cancer do you have? Hers was ovarian. We were back and forth to the doctor’s office so many times natter, natter, natter, blabitty blah blah…”

OH, SHUT UP, YOU MORON!

Nora and Haruki

Case 2: My friend Nora and family, Japanese husband and two kids, are visiting her hometown of Seattle. She is standing in line at a Starbucks, holding her daughter’s hand. Her baby boy is strapped to her chest. It is the late 1990’s. Adopting Chinese babies is all the rage within the yuppie community, which thrives in Seattle. Nosy Stranger leans forward and says, “What a cute baby! Did you adopt him from China?” Nora smiles and responds, “What, this little tyke? Heck no. I picked him up at Walmart. It’s so much easier than going through an agency. Imagine all the paperwork you can avoid! And everything’s made in China anyway. Just cut out the middleman. I’m thinking of returning him, though. He’s cute and all, but he makes an awful lot of noise and he smells funny. Good thing he’s still under warranty, right?” Nosy Stranger makes carp face, opening and closing her mouth as she tries to respond.

OK, my bad. Nora didn’t say any of that. It was her making carp face. How do you respond to something like that? “This is my own…I mean, he isn’t adopt…”

OH, SHUT UP, YOU MORON!

But as I said, these things would not, could not, happen here. As part of the gaman culture, Japanese people are brilliant at not noticing things they are not supposed to notice. To Westerners, this often makes them seem like hollow, insensitive robots. In fact, they hate high prices and traffic and screaming babies and their bosses and their neighbors just as much as anyone else, but they suck it up for the sake of harmony. This is neither a weakness nor a nobility. It is just how it works. And because of it, personal interactions with strangers are rare.

As a foreigner, I am used to sticking out, being stared at, the unwilling focus of silent attention. I was a little worried about going out in public, being the bald lady in the bandana. But people have done a phenomenal job of ignoring me. A couple of times, women have looked directly into my eyes and smiled a sincere warmth and encouragement that needed no explanation. The other day, the pharmacist complimented my scarf and earrings combination, ever so quietly, as she handed me my pills. But that’s been the extent of anyone acknowledging my condition. I am grateful for that.

A healthy dose of gratitude makes the vagaries of life so much easier to swallow, and cancer is a whammy of a vagary.

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.

 

When the Going Gets Tough…

circus-tent.jpg

…the tough go to the circus.

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.

George feet
We weren’t allowed to take pictures. Just imagine George’s feet times 100.

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.

head shaving

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.