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 clichéd 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.”

Friday, April 30, 2010

I turned the rope for the Dark Frog

Among the wonderful, gentle Frog and Toad stories, written by Arnold Lobel, is one called "Shivers." Frog and Toad, two great friends, decide they want to tell scary stories to give themselves the shivers—just a little scare to make them feel cozy and safe as they drink their tea before the fire. The bolder friend, Frog, tells a story about the Old Dark Frog, a huge, fearsome ghost that loves to eat little frog children.

One evening when he was a child, says Frog, he and his parents were walking home through the woods when he got separated from them. The Old Dark Frog found him. The Dark Frog told Frog that he was going to eat him, but because he was still full from his last meal of frog children, he would have to work up an appetite. He took out a jump rope.

The Dark Frog tied one end of the rope to a tree.
"Turn for me!" he shouted.
I turned the rope for the Dark Frog.

Two weeks ago, I read this story to my daughter.

One week ago, on April 24, I learned I have stage 1 breast cancer. It was a gorgeous New England spring day, when the air is clear and warm, the sky is an unbroken blue, and the trees and bushes all wear a gaudy green coat. When I walked outside, the craziest thing happened: the sun grew brighter, the sky became a richer blue and the green leaves practically shimmered. I could hardly take in the vividness of the world.

The tumor is small (1.4 cm) and it looks like they caught it early. I have great odds for a total cure. Most likely, I'll have a lumpectomy in a couple of weeks, followed by radiation and hormonal therapy and possibly herceptin. After a lymph node biopsy, I will learn whether I will also need chemo.

Do you know what happened to Frog? He turned the rope and the Old Dark Frog jumped and got hungrier. Then—"I had to save my life," said Frog—he took his end of the rope and ran around and around the tree. He tied up the Dark Frog and ran home through the woods to his family. And Frog and Toad, teacups rattling, enjoyed their shivers.

"Frog," asked Toad, "was that a true story?"
"Maybe it was and maybe it wasn't," said Frog.

Here's what's true for me: I feel I have a great medical team. I know I have wonderful family and friends. And I have learned that there are many treatments for breast cancer and many more on the way.

But I also have two daughters, ten and thirteen. And so I will do everything I have to do to see them through, to finish my job. The rope is in my hands, and now, I start turning.