Tag Archives: chemotherapy

The Scent of a Mouse

When I was a little girl, thousands of miles from here and a million lifetimes away, in another century come to think of it, my family lived in a beautiful brick farmhouse built in yet another century all together. The house was five miles south of Absolutely Nowhere, Pennsylvania. (This is a recent picture. There were more trees and bushes when we lived there. It was a nice house, a nice place to grow up.)

Berlin house
Photo courtesy of Sony Hambrick. Thanks, sis.

Among our many childhood toys was a pistol made of black crayon. I don’t remember where it came from, nor playing many bang-bang games with it. We really weren’t gun people, but my brother and I did think it was cool that we could write with it.

One day, he tied a long piece of string to the gun and started swinging it from the front porch of the house. I was running around on the grass below. Being the good brother he was, he said, “Don’t go under the porch where I can’t see you.” So naturally, the first thing I did was run under the porch, and naturally, the gun hit me in the head. It left a big gash in my left eyebrow which probably spurted blood as head wounds usually do and probably scared the bejeezus out of my mother. I don’t remember that part, either.

The next thing I do remember is being at our GP’s office in town. I remember Dr. Killius, a nice man with a most unfortunate name. I remember my mother watching and quietly tut-tutting because, being a country doctor, he was used to setting bones that had been broken by kicks from ornery cows and stitching together limbs that had been mangled by harrows, or so she tells it. She was concerned about the lumpy scar he was no doubt going to leave me with.

Funny, that. Mom’s not and never has been a girly-girl, although she is a product of her time and probably had certain biases. Little did she know what effect the 60’s were about to have on the world and that I would be left with choices about important things like whether or not I would pluck my bushy eyebrows.

On the plus side,  there have been a few occasions when I’ve been forced into conversation with someone who cares about things like that, and I’ve been glad to sigh and say, “Alas, I can’t pluck them. I have an ugly, lumpy scar under one of them.” And I always believed that to be true.

Then I looked in the mirror last night and noticed that my eyebrows are nearly gone. There are a couple of stubborn strands left, but chemo continues to have its obnoxious way with me. I felt oddly humiliated by this, yet another loss, yet another neon sign advertising my condition, yet another brick knocked loose from the wall of my pride and my privacy.

But then I looked closer. The dreaded scar, the ugly, lumpy mess I’d used for so many years as an excuse to avoid cosmetics in all forms, is barely visible. You’d have to really, really want to see it, just like the silver linings that somehow keep cropping up and making cancer bearable.

I guess if my eyebrow can smile, so can I.

eyebrow hair retouched
Yeah, that’s an eyebrow hair in all its glory, captured for posterity in a good mood.

 

Interesting side note: Years ago, we noticed a strange smell upstairs in our house here in Tokyo and I said, “Huh. Smells like dead mouse.” Rochi looked at me like I was gaga, not bothering to ask the obvious question. A few days later, he found a mouse buried in the laundry basket, a gift from the cats we assumed. I know the smell because my father used to pay us a nickel a corpse to collect dead mice and birds from the attic of that beautiful old house in the country.

I can also tell the difference between the odors of cow and horse plop, a skill that has proven almost as useful as high school trigonometry.

Poison

When we are faced with the unknowable, we search for solace and reassurance wherever we can find it. Some people turn to religion, others to denial. Although I’m a big fan of denial, I have tried as much as possible to turn to understanding. Early on, I read that my hair falling out was good because it meant the chemotherapy was working. But then yesterday I read that, in fact, all it means is that the chemo is having an effect, not necessarily a good one.

arsenic

Chemo is, in fact, toxic and my hair fell out because the chemo damaged the cells in my hair follicles. It is, in fact, damaging cells in my entire body, as one would expect of poison. This is only logical. If the wife discovered her husband was cheating and started mixing arsenic into his lemonade, then he suddenly started growing taller and more handsome, we would know either she can’t read product labels or we are reading a fairy tale. There is some logic to the workings of the universe.

For chemo, the reality is that while the toxic concoction is damaging healthy cells, which have the capacity to recover, it is also damaging cancer cells, which do not recover, at least in theory. The problem here is that every cancer is different, every person’s reaction is different, and unless another tumor makes its uninvited appearance, there’s no way to know if any of this is working. Everyone has cancer cells in them; most of the time our immune systems can murder the little buggers. Perhaps my extensive surgery and clean removal of the tumor was enough and my natural immunity could have killed off whatever cancer cells remained. Perhaps not. There’s no way to know. And radiation, which is supposed to have the same damage/repair effect, can also cause further damage to my already compromised lymph system and/or ignite some new type of cancer and then we start the whole inexplicable, unreliable, horrible process all over again.

It pained me to discover that the only proof there is that any of this treatment works is statistics. Women who undergo chemotherapy and radiation have a better chance, just a chance mind you, of outliving those who don’t. I can’t help thinking of going to the floating duck game at the county fair and expecting to pick the duck that wins you the giant teddy bear instead of the cheap plastic key holder. Statistically, it is possible to win that bear, but I wouldn’t stake my allowance on it. There are to many variables, too many ducks.

big bear

Yesterday, with all those contradictions gurgling through my chemical befogged brain, we went out for my birthday lunch, and not far from home I managed to trip over a pothole and tumble to the ground, not in that adorable way a toddler falls-down-goes-boom, but arms and legs flailing, ending up on my butt in the middle of the street. At least, much like a toddler, I started sobbing. And it only got worse as concerned strangers stopped to ask if I was all right. One woman even offered to drive us wherever we might want to go and when we said I was all right, she fetched a towel-wrapped ice pack, handed it to me, and drove away. Perhaps my bleeding palm touched her heart. Perhaps the bandana on my head told her all she needed to know. Either way, that simple act of kindness made me cry even harder, not jut from pain but also from frustration and helplessness.

I keep expecting to wake up from this nightmare and discover that it was all a fairy tale after all, that I chose the right duck and won the giant teddy bear. But the fact is that I didn’t choose any of this. Who would? The thing I have to remember is it’s not about choices, or at least not about liking any of the choices. When offered a choice of Japanese sweets, which generally look pretty and taste awful, I can always say I’m on a diet. But what’s the correct answer to, “Are you ready for your chemo now?” And how do I say yes to radiation when I know it may do more harm than good? But at the same time, how do I say no?

Fighting the Good Fight

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

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

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

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

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

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

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

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

Power

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

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

power port

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

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

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

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

Maya cat cookies

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

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

Farewell, Sweet Mousse

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

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

Rachel talisman stones

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

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

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

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

My Everest

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

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

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

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

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

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

me blue hat

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

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

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

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

 

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

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

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