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

Commencement

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.

Wednesday, December 22, 2010

The Wish Dish

It’s Christmas again, December is here / What did you wish for? What did you fear?
Christmastime (Aimee Mann/Michael Penn)
Dan and I hosted a small New Year’s Eve party last year, with some neighbors and local friends. With a desire to mark the end of one year and the beginning of another, I asked everyone to write down one wish for 2010. After I took a little mocking for my goofy idea, my guests wrote down their wishes on slips of paper and I collected them in a crystal dish, which I dubbed the Wish Dish.
The dish was given to me by my aunt, who turned 90 this year. It had belonged to my grandmother—her mother-in-law—a collector of glassware. The dish now sits in my china cabinet, once my parents’ cabinet, atop a stack of Noritake dishes that Dan’s uncle, an Air Force pilot, flew home from occupied Japan to give to his mother more than 60 years ago.
A few hours after we wrote our wishes, we passed the Wish Dish. Each of us pulled out a wish and read it aloud. The wishes made by the teens and preteens neatly fell into two categories: electronic devices and more wishes. The rest of us made wishes that were, for the most part, of two natures: a Red Sox championship and peace on earth. The electronics may have been attainable in 2010, but we’re still waiting on the rest of our hopes.
Within two weeks of making our wishes, and after he spent 26 years with the same company, my husband’s job was suddenly eliminated. Night after night, after our daughters went to bed, we huddled and tried to gauge the future to decide whether he should interview for another position in the company—in Connecticut or another state—or take the severance offer. By the end of the month, Dan landed a newly-created position with his company, one that didn’t require a move. The job is challenging and stimulating, but it carries a strong element of uncertainty. Like so many others now, we no longer have the confidence that his job will be there.
The shock of Dan’s job loss was followed a few months later by the jolt of my cancer diagnosis. It felt like what my family got this year was a lot of what we feared. I know I’m not alone in this. I look at my friends and see the toll that 2010 took on many of them: one friend’s husband died; two lost mothers and another lost a father; one finalized a divorce; and just this fall, two friends lost jobs. There were aging and ill parents, financial worries, relationship stresses, chronic illnesses. The year has been hard for many in my circle.
Now, almost a year after the party, December is here; the sun is low and the shadows are long. Yet, as I look back on 2010, I have a hard time feeling anything but grateful. This year brought trouble, but what it also brought me was this: overwhelming kindness and love, from family and friends, near and far. Surgery and chemotherapy were not easy experiences, but they were palliated by the caring of so many.
There have been food and flowers, notes and cards, visits and phone calls, little gifts, emails and Facebook posts. I’ve received homemade bread and homemade bandannas. Dear friends and relatives sat and talked and laughed with me through the many hours of chemo. Our house was cleaned and many, many dinners were made. A couple in my church has sent me a note every week since I started chemo in July. I have reconnected and strengthened ties with so many friends, from all the times of my life. I can find no other word for this experience: it has been a blessing.
It’s Christmas again, December is here / Hasn’t it been a wonderful year?
Last New Year's Eve, as the old year dwindled, we passed the crystal Wish Dish, prized once by my grandmother, then by my aunt, and now by me. We held the shining past in our hands and attempted to draw the future from it. We wished for the best and feared the worst. We took what came, as hard as it sometimes was, and with the help of so many, muddled through the year somehow. And that, in the end, is all I could have wished for.

Sunday, September 26, 2010

Legacy

I thought it would be easier, this shedding of the hair. I didn’t want to drag it out, losing it hair by hair, feeling more and more pathetic. So I determined to have it all taken off at once, when the time was right. A day after my second chemo infusion, my hair started to come out rapidly, leaving a golf ball-sized wad of my already-short hair in the shower. Two days later, when the hunk was the size of a tennis ball and the occasional hair would gently waft past my eyes as I went about my day, I felt it was time. I called my hairdresser of 22 years. It was Saturday and her day off, but she told me to come over to her home salon.
Who says you can’t go home again, at least to get your head shaved? Several years ago, my hairdresser and her husband bought the same house in Enfield that Dan and I had lived in for eight years. We drove over and my longtime, trusted hairdresser gently buzzed away all the vestiges of her handiwork. She wouldn’t take a dime. I hugged her, thanked her for the worst haircut she’d ever given me and said I’d be back next year.
And then, almost immediately, my bravado started to crack. For the next few days, every time I looked in a mirror I was shocked anew. It was a stranger looking back at me, a stranger who had foolishly cut off all her hair and turned herself into a freak. I couldn’t imagine my daughters and husband would want to be seen with me. I could not understand why I had been in such a hurry to do this.
I didn’t completely hide. I took my morning walks in the neighborhood; I took my kids shopping, to the library and out to eat. They, to my amazement, didn’t seem fazed at all. I was so relieved; at least they weren’t traumatized or embarrassed by me.
The problem, it seemed, was me. I didn’t feel like myself, the girl who likes to look okay but has no illusions about looking great. I had completely lost my confidence in my own appearance.
Several mornings after the shaving, I woke up and felt again the bristles raking against my pillow. I started to cry. I knew I had to do something to change the way I was feeling. After I pulled myself together, I tied on a bandanna and went out for my walk.
As I passed by my neighbors’ homes that morning, I thought about a necklace I started wearing shortly after my diagnosis. It’s a simple silver chain with some items from my family on it. I call them my amulets: a turquoise ring my mother wore as a baby, a small skeleton key from my father’s family, a silver earring that my mother-in-law gave me. These charms rest near my heart, grazing my lumpectomy scar. As I walk, they jingle softly and remind me of the strength with which these beloved people led their lives.
My mother-in-law was a tiny woman, but her fierceness and love were enormous. She fought through more than her share of losses in her life, and I try to carry some of her toughness and determination with me.
From my father, I draw the shining example of a quiet and dedicated man who fought leukemia for almost ten years with dignity and grace. He faced his challenges with humor and acceptance, and he was positive yet always realistic about the course of his illness. He said leukemia was something he would die with, not from—although, in the end, he outlasted all the available treatments and it was the cancer that finally took him.
But I was not sure what I carried from my mother into this battle. She was pleasant, religious, clear-sighted and optimistic. When she found a worthy cause, she threw herself deeply into it: volunteering at church and in the community, tutoring, helping to start the local soup kitchen, collecting winter clothing for local children, educating and lobbying about the dangers of drugs and alcohol. She was a hard person to emulate, and impossible, in many ways, to measure up to.
As I walked that morning, I started to think about another facet of my mother: in addition to her estimable qualities, she was also a terrible dresser. My sister recently dubbed her the “Queen of Loud-Print Polyester”—and in the mid-1970s it took serious effort to earn that title. Shopping at second-hand stores long before that was trendy, she was so pleased with her gaudy bargains. In my adolescence, as I grew more concerned with how I looked, it seemed she cared less and less. I spent my teenage years cringing in front of my friends, embarrassed by her garish prints and clashing colors.
She hadn’t always dressed like that. In photos of her as a girl and young woman, she looked neat and put-together. Her own mother always dressed stylishly and was, I’ve been told, quite concerned with her appearance. Perhaps that’s why my mother stopped caring: she needed to be different from her mother. Or maybe, as she got older, it was as simple as this: the thrust of her life—her family and her causes—dwarfed any concern with appearances. Her interior had become more important than her exterior.
All I knew was that for the teenaged me, her exterior was something to be ashamed of. I swore I’d never dress like that. I’d never embarrass my children that way.
Yet here I was, decades later, sporting a bald head. Here I was, with two fashion-conscious daughters, who amazingly didn’t seem to care. Here I was, feeling all the eyes upon me when maybe there weren’t any at all, or just two. The eyes judging me were, apparently, my own and no others.
It almost stopped me short: what I needed was to stop caring about my own exterior. What I needed was more of that part of my mother that had so mortified me.
And right there, at that moment on the sidewalk, it got a little easier. I started to feel that this long-derided aspect of my mother could be a source not of shame, but of strength. It was an inheritance I never wanted or expected. But perhaps it was the truest legacy: the gift I never dreamed I would need, the one I spurned, the one that at long last fell into my searching hands and fit my grip perfectly.

Sunday, September 12, 2010

Fearless

It’s easier to know you have cancer than not to know.
On a Friday in April, I was due to get the results from my biopsy. I called the doctor’s office in the morning to ask about the report and give my phone numbers. And then I waited, as calmly as a live wire lying across the road, twisting and sparking. The phone would ring; my heart would pound; it would not be the doctor.
It was the last day of my ten-year-old daughter’s spring vacation. Dan and I hadn’t told our kids anything yet, so I tried to act as if everything were normal. Wanting to earn a little money, Miss L asked me if I would pay her for a manicure or pedicure. We agreed: a pedicure and foot massage for three dollars. She gathered her supplies and prepared her work area. I had to edit a client’s document, so I printed out the pages and got out my red pen.
She welcomed me to her salon—the family room—seated me on the couch and propped my feet up on a stool. She asked if I wanted to hear any music. I said I did, so she put on her favorite CD, Taylor Swift’s Fearless.
Miss L went to work on my feet, first a salt scrub followed by lotion, then nail filing and finally polish. As she worked, she sang along a little to the music. She sang, “Capture it, remember it,” then told me, “that’s my favorite line.” I told her it was a very, very good line to choose as her favorite.
The rest of the day passed without a call from the surgeon. It was a sunny, warm spring evening, and Dan and I went out to the deck to have a beer. We started doing this last summer: carving out some time for ourselves—a happy hour—on Fridays, just to talk and focus on each other. That Friday, we talked of other things, but mostly, of course, of the news we were waiting for. He said he felt pretty positive; I said I didn’t. I had seen the explosion of white on my mammogram; I had heard the solemn concern in the radiologist’s voice during my biopsy.
My doctor called the next morning. I don’t recall the exact sentence he said. Was it “We did find a small cancer” or “You do have a small cancer”? The next sentence I do remember clearly: “It’s very treatable.” I went numb, but I asked questions, took notes. Dan came into the room a minute after I hung up the phone. I said, “It’s cancer,” and he burst out, “Come on!” in the same tone he directs toward the television when the shortstop lets the grounder through, when the receiver lets the wide-open pass slip through his grasping hands. “I let the team down,” I joked, still benumbed.
I told him what I had just learned: surgery first, radiation, probably chemo. I gave him the details of the tumor and the survival odds—my survival odds, now. We quickly agreed to tell our daughters that evening.
Capture it, remember it: the look on Miss L’s face as we brought cancer into her life that night at dinner. I had to turn away for a moment, just a moment, before I could look at her stunned eyes again and reach my hand out to her cheek.
Ten weeks after this day, after surgery and a great pathology report, Dan and I waited for another phone call, for more results that would change everything. My bone scan had shown an area in my right hip that could have been old damage, arthritis, a benign bone disease—or a metastasis of my breast cancer. Although my lymph nodes were clear, it is possible, if rare, for cancer cells to have traveled through my bloodstream and colonized in my skeleton. And that would mean this: stage IV instead of stage I. Incurable. I would go from a ten-year survival rate of 98% after treatment, to a five year rate of 20%. This was ugly. This was fear.
So for two weeks, we waited, through an inconclusive PET scan and then a bone biopsy, for another phone call. This time, the waiting was so much worse. I was so far from fearless. Once again, Dan was the more positive one. He said he was worried, but he just couldn’t imagine it being true. But I could. I could imagine every part of it: the call from the doctor, telling Dan, telling the girls, telling everyone. A series of treatments and complications. Fighting with the insurance company. Helping Dan get ready to be both mother and father. Trying to prepare my daughters to grow up without me.
This part of the story has a happy ending. The call came, the call that ended my depthless fear, and this time the words were, “No evidence of malignancy.” I laughed and cried right on the phone with my doctor. I texted Dan to invite him to the Happiest Hour Ever on the deck. And when he walked into the kitchen, we held on and on and on.
‘Cause I don’t know how it gets better than this / Capture it, remember it.

Wednesday, July 28, 2010

The poison

You know / I took the poison from the poison stream / Then I floated out of here

The U2 song, Running to Stand Still, played in my mind on my first day of chemo. I was eager to get started, which is to say I was eager to throw myself off a cliff. There was no way to know what to expect. There is so much information out there: web sites, blogs, discussion boards, personal stories. But the overriding theme is that chemo is different for everyone, and that it is hard.

Two weeks ago today, I sat in a big recliner for hours, Dan by my side, as poison dripped into a vein next to my heart. First, the needle was pushed into the port in my chest with a sharp puncture—the only painful part of the day. Then, one by one, I received bag after bag of fluid: saline, steroids, anti-nausea meds, Benadryl; then, finally, Taxotere, Carboplatin, Herceptin: the reasons for the party. It was seven hours, all told, from first check-in at the desk in the cancer center lounge to the last hug from my oncology nurse, back in the lounge.

My new nurse is a pro. She’s the unit manager, a veteran of more than 20 years. She’s feisty and sarcastic and focused. She was sensitive to what I needed and what I was feeling. We laughed a lot; I cried a little. It’s a good fit, I think, and one more reason to feel confident that I will get through this.

But first I have to get through this. On the ride home, on the edge of fear and in a thick, soft Benadryl fog, I wondered: What will happen to me in the next few days? How sick will I be? Will these changes be permanent?

And how does it feel, once the poison begins to do its work? Pretty lousy. I felt like I aged 30 years overnight. I was tired, weak, bloated, achy and in a dense mental and physical fog. My senses of taste, touch and hearing were diminished. But I did not feel sick to my stomach and kept up with eating and drinking. I have my hair, for now.

Now I wonder: How much worse will it get, the next time and on through to the end of chemo, three months from now? It was hard not to know what to expect, but it may be harder now that I do know.

Chemotherapy is a brutal means to an uncertain end. It’s tempting to think that the end I’m aiming for is to get back to the place where I didn’t have cancer and didn’t even consider it a possibility. But there is no such place anymore. I’ve had cancer growing in me, silently and painlessly, for years, even as I thought it would never happen to me.

She will suffer the needle chill / She is running to stand still

It’s a song with simple chords and instruments—piano, guitar, drums and Bono’s lovely tenor—that builds slowly to a crescendo, then fades. How odd that a song about addiction should be the accompaniment to my first trip through chemotherapy. But I think we have lots in common, the addict and I. We are utterly without choices. She says she only sees one way out, and that’s all I see, too. We are doing unpredictable and perhaps incalculable damage to ourselves.

But she’s running, so desperately, to find a place of quietude where she can be still and let everything swirl around her. She seeks escape; I want to win. I want to put all this behind me, for good. But I won’t be running back to before; before wasn’t what I thought it was. I’m moving ahead, to whatever the future holds, with a little more knowledge and a little less security. Whatever happens, I can’t stand still. I only see one way out.

You know, I took the poison.

Thursday, June 17, 2010

Kaleidoscope

She graduated from eighth grade last week, on a bright and windy day, in a dress of green and blue and black and white. When I look in her eyes, I can see a muted version of those colors. As a toddler, she had eyes of sapphire blue, but by the time she was six, they had paled to a gray-green. Over the next few years, some flecks of brown were added to the mix. Her eyes grew lighter and the outer rim grew darker: twin Saturns with rings, heavenly orbs in milky-white skies. Wreathed by long lashes, they are beautiful eyes, and changeable. Depending on the light, they are hazel, then gray, then green. I call her the girl with kaleidoscope eyes.

Through my comparatively boring brown eyes, I’m doing a lot of looking ahead these days. I’m picturing a future after cancer, and mostly, I feel like I’m looking through a kaleidoscope. There are so many pieces to this process of putting cancer behind me: surgery, radiation, chemotherapy, Herceptin, Tamoxifen. The potential side effects are daunting: nausea, pain or at least discomfort, hair loss, mouth sores, weight loss or weight gain, brain fog, skin damage, lung damage, nerve damage, heart damage. I have an idea of what to expect along the way, but I know I’ll be surprised and brought low at times by complications and repetition and fatigue. And after all that is behind me, there will still be monitoring and vigilance and a lifetime of wondering if it’s really gone.

These pieces that I imagine, they are broken shards that tumble in front of my eyes as I try to focus on the brightness of life after cancer. Some things are broken already: my body betrayed me, my good habits didn’t protect me. There are a couple of scars already. There is fear. There is still, sometimes, disbelief.

Most of the time, though, I can see through my kaleidoscope pretty well, and it looks good out there, up ahead. The pieces fall into place, and the light shines through to reveal the right pattern, or at least a good enough pattern, one that I can live with.

But my new graduate, Miss A, looks through her fabulous eyes and sees a darker world than I do. She always has: at six she told me that she “never feels joy.” She’s come so far since then. Overall, she’s much more positive and in control of her emotions. She and I have a much closer bond. She makes me laugh with her silliness and her sly humor. When faced with a challenge, she still insists that she can’t or doesn’t want to overcome it—but over and over, she has found the strength and persistence to do so. She’s a high honor student; never the most popular kid, she has a small group of good, close friends. She’s on her way and I think her future is very bright. But, still, there are shadows, times when all she feels are the negatives, when she really can’t see any joy.

So I tell her that this is her nature. I tell her to recognize it and to choose to see beyond the darkness. I promise her that if she feels hopeless, she needs to hold on and wait a bit, and things will eventually get better.

Among everything that I want to teach her, given the time, the most important is to convince this girl of sun and shadows that she can aim her kaleidoscope at the brightest light, and with enough turning and patience, she will see her own beautiful, imperfect pattern fall into place. I’m trying to live that for her, right now. Will she believe it if she sees it?

Thursday, May 13, 2010

Buy the shoes

A few years ago, my girls and I took advantage of a promotional deal at a drugstore and bought a box of notecards and matching magnets for a dollar. Illustrated with whimsical pink-splashed cartoons of shoes and shopping bags, the theme was “Life is short—buy the shoes.” It was clich├ęd and cutesy, and not really my style. Carrie Bradshaw, I am not.

Mostly, I’m happiest in my ripped-up Cons. I don’t love to go shoe-shopping, and when I do need to buy a pair, I often agonize about pulling the trigger. I am reluctant to spend the money on something I usually view as frivolous. (Yeah, I know: the shoes I wear would never be described as “frivolous.”) So more often than not, I don’t buy the shoes—or don’t even go shopping in the first place.

Yet, in the first three days after I learned I have cancer, I surprised myself by buying two pairs of shoes. This is pretty much my shoe quota for the next year or two, and I didn’t set out to buy either pair. The first day, the day of my diagnosis, Dan and I took our older daughter to the mall to meet some friends, leaving us with an afternoon to kill. We were five hours into living with cancer; we held hands and called it a date. I idly looked for some short black boots, but instead, impulsively bought a pair of black slip-ons. Two days later, I took that same daughter to look for shoes for her 8th grade dance. I pounced on a pair of sling-backs long before she made a decision.

After my second shoe purchase in three days, Dan joked that I was becoming Imelda Marcos. Recent behavior aside, we both know there’s no danger of that.

Meanwhile, on the other side of the country, my dear friend Miss M believes in retail therapy, specifically her fave Fluevog shoes. I don’t share her passion, but I can understand it. “They are sweet gifts that I award myself for getting through all this stuff,” she says. In the last few years, she’s lost her husband to addiction, a close friend to colon cancer, and too recently, her beloved, fierce mother. Partly, she salves the wounds; partly, I think, she knows life is short. She buys the Fluevogs.

In the stores, as I tried on the shoes, I thought of two things: I simply wasn’t going to deprive myself of a pair of shoes anymore. Because, yes, life just might be too short.

But, with any luck and as I fervently wish, life might be awfully long. So my other thought was this: “Shoes last. I could have these shoes for five or ten years. I will wear these shoes out.”

Which is why I offer you a new magnet-ready slogan: “Life is long—buy the shoes.”