Tuesday, June 14, 2011

Maybe, Sparrow

I bought myself a small silver charm last fall as I approached the end of chemotherapy. I wasn’t sure exactly what I was looking for as I searched through the tokens at the local bead store, but I finally settled on a bird just taking off, its wings only beginning to spread. I thought of it as the bird that flew away from trouble.
But I didn’t add it to my necklace after my last chemo in November. I discovered I wasn’t ready to celebrate, not while I still felt lousy and only slowly came back to myself over the next weeks. It wasn’t a stopping point after all, just a hesitation: in December, I was to start seven weeks of daily radiation treatments. The worst was behind me, but I wasn’t done.
But early in February, I was elated to finish radiation on a bright Friday morning. That night, I drove to Northampton with one of my closest friends to hear the singer Neko Case. Neko’s clarion voice swooped and soared, a “drowning dive and back to the chorus.” “Maybe Sparrow,” she sang:
Oh, my sparrow, it’s too late / Your body limp beneath my feet / Your dusty eyes cold as clay / You didn’t hear my warning
A gorgeous but ominous song, it’s laced with danger and foreboding. The sparrow knows that there is risk in every undertaking, but she can’t not fly—she has to take the chance that she will evade the hawk, this time, this night.
The morning after the concert I brought out the bird charm, nestled in its little envelope, and my older daughter added it to the other tokens on my chain. Since I started wearing the bird, I’ve come to think of it as my “Maybe Sparrow,” for how can I say that I’m forever done with all this? The sparrow doesn’t know if the hawk is watching.
The data says that I have a one in ten chance of recurrence. Many days I am blithely confident that I will never have cancer again. But on other days—fewer days— I am absolutely convinced that it will be back—that it is already back, growing unnoticed, cells dividing madly and recklessly, one after another after another. I fear it will elude detection until one day it spills out of its hiding spot, betraying its presence like laughing kids playing a game of sardines.
I am trying to find a way to be at peace with the uncertainty of that ten-percent chance, and most of the time I succeed. Only occasionally does the weight of dread settle in to my gut, its gravity pulling me earthward.
Meanwhile, I use my slim arsenal of weapons to protect myself: checkups and self-exams, exercise and diet, my little white disk of Tamoxifen. I find I don’t even have confidence in my self-exams anymore. Not only did I miss the lump last year, but after surgery and radiation, my own flesh has become dense and unfamiliar. There is resistance where there used to be pliancy. I wonder: would I feel a tiny, deadly change in the face of these larger alterations?
Maybe, sparrow.
I know we all live a Damoclean existence, with our doom hovering somewhere on the periphery of our imagination. My sword—my hawk—has a name now and a new, tangible form. Still, although there is risk in every undertaking, even in living each day, what choice is there but to fly on with eyes wide open?
I’m not a superstitious person, but the charms I wear have become my amulets to ward off evil, my reminders of those who have been lost, and my hard-earned medals. They’re just little symbols, but they are laden with power; words have power, too. The words we use not only explain what we feel but also shape those very perceptions. Last spring, when I was first telling people I had cancer, I couldn’t bring myself to say those particular words. I said, instead, “I’ve been diagnosed with breast cancer.” Later, I would say, “I’m being treated for cancer.” Now, I hear myself tell people, “last year, I was treated for breast cancer.”
I think eventually, when more time has passed and when last year becomes years ago, and the sparrow flies and the sword hangs undisturbed, I will say instead, “I had cancer.”
I had cancer.

Saturday, April 9, 2011


Portmanteau words are fun mashups of ideas—turducken! bridezilla! refudiate!—and in part, we have Lewis Carroll to thank for that. In “Jabberwocky,” the epic poem in Through the Looking-Glass, he created several of these words (“slithy” for slimy and lithe). As the character of Humpty Dumpty said, “You see it's like a portmanteau—there are two meanings packed up into one word.” A portmanteau was a kind of suitcase that folded up its compartments into a single portable whole, just like one of these words.
I learned a new portmanteau word this year: chemopause, or chemotherapy-induced menopause. It’s one of the many unanticipated side effects of chemo, and it happened suddenly, like a light switch being turned off. I had one period after my first infusion, then … nothing. My oncologist said my ovaries were “stunned.” He estimated an 80% chance that this would be permanent, especially since I am now taking tamoxifen, which further suppresses estrogen. I wasn’t that far away from the real thing, but for me, menopause turned out to be not the initial-cap Change, but a mere lower-case side effect. Then, a couple of months after I finished chemotherapy, it came back, just once so far. It may come and go as it pleases, apparently.
As momentous as this development could have been, I’ve been mostly bemused by it. I’ve had bigger things to worry about. During active treatment, I schooled myself to focus on what was in front of me rather than to think about all the implications of cancer and its harsh treatments. I suspect, however, there will come a time, in the next months or year, when I will need to examine my feelings about chemopause and all the other experiences and changes I’ve been through.
I’ve learned there’s a word for that, too: survivorship. Survivorship encompasses all that comes after cancer treatment, physically and emotionally. It’s the post-treatment plan of tests and checkups that will all be, I hope, negative—this is one trip I don’t want to pack my portmanteau for again. But survivorship is also a processing of the changes, the new realities, the new fears. And it’s finding a way to adjust to normal life, or to create a new normal, after the overwhelming absorption of active treatment is over.
My oncology nurse told me that some people don’t feel protected after chemo is over; my radiation oncology nurse warned me that many people expect to be thrilled the day they finish treatment, but find that they aren’t. While I’ve been quite happy to be done with most of active treatment, I suspect that there may eventually be a letdown, once the intensity and focus of the last year returns to a more typical level. And, as a mother and an orphan, I have to admit that being the recipient of so much caring has been deeply comforting. Yes, there is relief—how could there not be?—but there may also be a void, and perhaps a lack of purpose.
Last fall, I kept catching myself saying and thinking, “Next year I want to …” and “In the spring, I’ll …”. Here’s my short list: continue to write this blog occasionally, join a writer’s group and get serious about writing fiction, get back to regular exercise to regain the strength and endurance I’ve lost, have more dates with Dan, see more live theater and music, go out with friends more, take a really good family vacation. Time will tell if I actually do most of these things, but I’m already starting.
When I finished my last chemo infusion in November, my nurse started singing (to the tune of “Happy Birthday”) “Happy last chemo to you.” She treated it like a little graduation ceremony, my own commencement. And on my last day of radiation, I was given a diploma—another commencement. I’ve always thought it odd that the word “commencement”—the end of high school or college—doesn’t address the ending of something but rather the beginning of something else, something undefined. My challenge is to define what I want to begin now, and to make it happen.
A year after the mammogram that started all this, I feel like I’ve been given a gift: the gift of seeing my life as not mundane and everyday. Call it a course correction, call it clarity, call it an epiphany. Sure, I’ve lost something: that illusion of safety, the thing that lets you go about your day blithely certain that there will be a tomorrow. Along the way I also lost a little flesh, some hair, that period—at least temporarily. But here’s what I’ve gained in return: more life. I call that a good trade.
Commence living.

Monday, March 14, 2011

The Game of LIFE

There’s a lot of talk of fighting when you get cancer: “I’m battling cancer” or “the fight of your life.” My favorite is “fight like a girl.” If you read obituaries, you’ll find that no one dies from cancer without first fighting “a courageous battle.” It seems like you get cancer and suddenly you’re a warrior.
But I don’t feel like a warrior. I would never want to slight anyone who feels that way, but for me, getting through this has been just that: a matter of getting through it, of outlasting the cancer cells and slogging through the treatments. It’s a trudge: one foot in front of the other. There are prescribed steps but no guarantee of success. From biopsy to surgery to chemotherapy to radiation, most of the course of my treatment has been laid out for me. There were some important choices to make, but after researching the options, I mostly concurred with my doctors’ recommendations.
I have often, through these months, held an image of myself as an inert participant in my treatment, being pushed or pulled along a path while I have shielded my eyes from looking too far ahead. I’ve imagined my oncology nurse dragging me through the months of chemo, while feeling the hands of family and friends pushing me on. I have felt like I’m not so much doing something—fighting—as having things done to me, while I hold myself together and withstand it all. I have tried to keep faith that this will all be worth it, that the job of eradicating every rogue cancer cell will get done and not need doing again.
Cancer treatment has felt like a time separate from the course of my life, during which I’ve had to follow a digressing road before I can get back to my life. It’s a diversion, albeit a lousy one. Looking at it this way has allowed me to be gentle with myself, as I pulled back from my writing and design business, from volunteering, from doing pretty much anything but the minimum required to keep my family and me moving along through these many months of treatment.
On my birthday last summer, shortly before I started chemo, I got a delightful note on Facebook from one of my first childhood friends. He wrote about our long ago summer days. “I know what would make you feel young again. How about a game of LIFE on your front porch? You can get pink twins and I can get blue ones. Don’t forget your life insurance policy.”
It was a great memory from a fun childhood together, and a wonderful thing to recall so much further along on our own meandering paths. As a kid, I loved The Game of LIFE, from its plastic molded hillocks and pegs-as-people to its money and seal of approval by Art Linkletter—“I heartily endorse this game.” My neighborhood friends and I spent hours and hours on my porch, spinning and moving our cars and hoping to make it to Millionaire Acres. And as we took our turns and the game played out, I remember trying to imagine how my own unseeable future would unspool.
I learned last year that another of my neighborhood friends, the note-writer’s sister, now has stage IV breast cancer. I’m sure that she, like I, never would have envisioned cancer as a part of her life, until the day it was. What little kid would ever imagine that, playing a board game with her friends on an endless summer day, spinning the wheel and wondering what life will bring?
The Game of LIFE’s tangled path feels like an apt metaphor for this part of my own game of life. I’m taking one of those side trails now that make the trip around the board a little less direct and a little more of a challenge. I have to acknowledge that I may not finish out the game the way I’d hoped. But there is nothing to do but spin the wheel and move my car, count the spaces and follow this path I find myself on.
Here’s my game these days: a blue peg as partner to my pink one, two more pink pegs in the back of our little plastic car. We spin, we move, we spin again. No warrior I, just a trudger, doing what I have to do, doing what anyone would do, hoping for the best of luck.

Friday, February 4, 2011

You lie, alone

You lie on a narrow table, alone. The cool room is bright with florescent light. A cheerful mural of the seasons curves to the ceiling on vinyl tiles at the tops of all four walls. You imagine others on similar tables, looking at the same scene. You close your eyes. You prefer the darkness to the blooms of the faux spring.
Day after day, you walk into that room, in street clothes from the waist down, hospital johnny on top. You see the platform, and looming above and behind it, an enormous machine, a linear accelerator. You can only see part of it, the arm that reaches over the table; the rest of it lurks in a row of cabinets that spans the width of the room behind the table.
You greet and chat a bit with the crew, usually the same two, occasionally others, sometimes a student. They are always upbeat, respectful, kind, funny. You say your name and lie back on the slender platform. It is covered by a foam mat and a small sheet. You rest your head in a cradle while one of the techs slips a triangular foam block under your knees. You take your left arm out of your gown, pivot it above your head, and place it in two supports, one at your biceps, one at your wrist. After that, you do not move.
You have no shame or modesty. Your breast is merely another body part. You are in for repairs.
One of the techs turns out the light. Red and green beams dart out from the equipment above you. The techs raise the table, slide it left or right, adjusting angles as they line up the beams with the blue and black lines and dots drawn on your chest. They tug the sheet slightly to move your body. They open the gown more to expose other Sharpie marks on your abdomen. When the male tech does this, he gently pinches just the edge of the fabric with his fingertips. You always, always appreciate his tenderness.
When they are satisfied with your position, the techs leave, turning on the light as they go. The door they shut behind them is five inches thick.
You are now merely a target. You are reduced to your body; your body is reduced to its cells, and the hulking machine is there to scramble them. Your healthy cells will easily repair themselves, but your cancer cells, if any have eluded surgery and chemotherapy, do not. You lie and wait and trust that the science is sound, that the machine is calibrated, that the angles are correct, that the techs have aligned you perfectly. You lie and the machine hovers and whirrs above you. You hear several clicks, then finally, the buzzing. Sometimes you count: one Mississippi, two Mississippi. The buzzing stops at fifteen. The arm, eighteen inches away from you, rotates to a position below your body. Because your head is still, you never actually see it down there. You wait for the buzzing. You find it peaceful, lying there, with just the humming and clicking machine to keep you company.
Yet, maybe once a week, perhaps because it is so peaceful in the quiet chill, your mind wanders and with a jolt, you remember, really remember, why you are here. Each time it happens, it is almost a physical shock. You feel a little crazy. You feel how absurd this all is, how utterly impossible. You feel the sting in your eyes and you quickly blink it away. You try to think of something else. You don’t want the techs to see you cry, and while you lie here, you can’t raise a hand to wipe tears away. You stop it before it starts.
When the buzzing stops, the arm of the machine swings up and away from your body. You slip your arm back into the sleeve of the gown and close up the front as the techs walk back into the room. They slide the table away from the machine and lower it so you can hop off. You crack a little joke, say goodbye, say thank you. You walk back to the changing room and then out to your car.
You’ll do this again tomorrow.