IMAGE: (Left to right) Jodi L. Sax, Suzanne Smith, Arlissa Gorosave
Tina Fineberg  /  AP
Jodi L. Sax, 40, left, Suzanne Smith, 29, center, and Arlissa Gorosave, 30, share many experiences as members of a writing group for young adult cancer survivors.
By
updated 10/1/2006 10:28:49 AM ET 2006-10-01T14:28:49

”My finger rubbed the side of my left breast for the millionth time and found the warm bump growing inside me. I knew it was cancer. ... I knew one day it would come. ... I did not know it would come at 28.” — Arlissa Gorosave

She married in Arizona on a Saturday. On Sunday, her groom took a plane to New York and his new job. On Monday, she set off in the U-Haul truck for the 2,000-mile drive to meet him.

Maybe they would stay in Manhattan forever, maybe they would move on after a year or two. But for now, the big city seemed like the perfect place to try to make a living as a writer. “I didn’t have any fear,” Arlissa says softly. “I didn’t have any anxiety. I was just ready to work hard, and whatever happened, happened.”

What happened, only a few months later, was cancer. She had always known it might come. Her grandmother had it, and it had killed Arlissa’s mother soon after she was born.

She’s 30 now. A survivor, and a writer. Like the rest of us.

We were all writers and all cancer survivors, the eight of us, sitting at a makeshift conference table, scribbling away.

One night a week, we came together in this nondescript room, and our instructor, a 30-ish soccer-playing poetry lover named David, gave us exercises to write on the spot. A poem about a place you don’t miss. An outline about a relationship you lost. A paragraph about a moment when you knew your life had changed. We didn’t have to write about cancer, he said.

But, really, wasn’t that why we were there?

Young survivors
Here, we’d found people who might understand what we were going through. The problem wasn’t a lack of fellow survivors; our ranks have tripled since 1960 to more than 10 million. But most of them are over 65, according to the National Cancer Institute. We in our 20s and 30s make up only 5 percent, and our fears and hurts and furies are often different, something that becomes clear in what my classmates and I wrote.

We were done with treatment now, in some cases for years, but we were left with all kinds of scars. Suzanne worried about dating someone who didn’t know she’d lost a breast. Jodi wanted to do something new with her life. Me, I needed to figure out how to stop feeling so tense.

And Arlissa mourned a fading chance to make it as a writer.

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She grimaces as she hunts for grants for beginning writers, only to find that they’re mostly limited to people still in their 20s. “That’s where I was, and that’s what I could have been doing, and I lost this time,” she says.

Instead of writing plays or poems, she’s spent the last two years wrestling with cancer’s aftermath. “When my treatment finished, I thought I was going to be able to jump up and take on the world where I left off, but that didn’t happen. I don’t remember 29 at all,” she says.

She turned to a survivors’ support group, but her youth made her feel alone. They weren’t as sensitive to the changes cancer had wrought on their appearance. They did not have doctors telling them that they should have children before 35, so reproductive organs can be removed to guard against more cancer.

The others “were already in the middle of what they wanted to do, or retired from it.”

For Arlissa, our writing group has been “perfect.”

“There was this huge gap. I didn’t know how to talk about things I needed to talk about.” Now, she says, “I’m beginning to find those things.”

She wrote about finding the lump in her breast and about her husband telling her, “If all you do today is grow some hair on your head then that is enough.” She wrote about how, as a teenager, she discovered a calendar where her mother had chronicled her final months.

But cancer has made even the act of writing more difficult. She has trouble gripping a pen, and she can’t always think of the word she wants, the way she could before.

“As a writer, it’s very frustrating,” she says.

Breast cancer at 26
“I’m young but I knew.
I have no family history but I knew.
Just like you feel the presence of
a ghost in the room,
or a stranger in the house
I
knew.
I just hoped it
wasn’t true.”
Suzanne Smith

Even before Suzanne was diagnosed with breast cancer at age 26, “things were not going good,” she says. “I was in a bad relationship. I was drinking. I was confused. I didn’t know where my life was going.”

Amid the turmoil, she’d fallen away from acting, which had been her passion. Cancer, she says, was almost a gift: “I said, ‘OK, well, this is like a sign that I shouldn’t kill myself.”’

Three years later, she says, she’s become more compassionate. She’s learned that she can count on people for help. She loves working as a storyteller for young children.

But she hasn’t found her way back into acting, and she can’t figure out how to handle dating, something earlier support groups didn’t address. So far, she hasn’t gone out with anyone who didn’t already know she lost a breast.

“It’s so weird, having to tell someone,” she says. “I’m scared.”

Relying on others
“I remember falling asleep knitting.
I remember not having to worry about money.
I remember studying to get ahead.
I remember having something to talk about besides cancer.”
— Jodi L. Sax

Like Arlissa, Jodi had only been in New York for a few months when she learned she had cancer. Hers was in the colon, and it didn’t look good. She spent 2003 having surgery, chemotherapy, radiation and physical therapy.

Health insurance covered much of medical expense, but she couldn’t work, and the rent bills kept coming. At age 37, despite having a law license and her own practice, she ended up relying on money from her father, someone she hadn’t spoken to in years.

“Very, very difficult,” she says.

When that money stopped coming, she had to revive her practice, though she felt far from ready. “I was really, really sick. I couldn’t work except a few hours a week,” she says.

A support group for colorectal cancer patients was little help. Then she found a group for young adults, and that made all the difference — for her, age turned out to be more important than the type of cancer. But that group ended after 14 weeks.

At the same time, she felt pressed by a heightened sense of mortality to do something more creative with her life. Years ago, she’d started a Web site but that wasn’t enough anymore.

The urge led her to start the New York LifeLab, a nonprofit aimed at helping young adult cancer survivors restart their lives after treatment.

Our writing group, which began last fall, was the LifeLab’s first project. She attended as both founder and participant, but her writing was halfhearted at first. “I had a bazillion things going on, and writing isn’t a passion of mine,” she admits.

Soon, though, she was drawn in by the exercises. Her emotions became the raw material for her poetry, helping her gain perspective. This woman who designed the class was surprised by the power of the written word to heal.

“It was more helpful than I ever thought,” she says.

Transfusion from a friend
“I reflect on that day
when you became a part of me
in a way that nobody should ever have to
be a part of their best friend.”
— J.H. Finkelstein

Jamie: 28, with wild, dark hair and a diploma in pastry arts. Diagnosed with acute lymphoblastic leukemia in 2003. Wrote the poem about getting a transfusion of her friend’s blood that I’ve almost memorized because I’ve read it so often. Her cancer was in remission for almost three years. Midway through the class, her leg started bothering her, and then the remission was over. Pain and fatigue kept her from our last meetings.

How to begin again
“We lose things all the time. Pens, socks, a set of keys. We might scowl or curse, but the fix is a hassle, nothing more. ... Then there are the things we cannot touch, things we hardly knew we had. They slip away unseen, but their losses are no less felt, and unless we recognize them and call them out, these losses can scar us most of all.”
Me

I was 38, three years out of treatment for metastatic rectal cancer, but I still wasn’t myself, and it slipped out in strange ways.

I’d snap at the drug store clerk, or grumble about organizing a potluck dinner, even though I’d volunteered to do it. I cried when my university invited me to a student leader reunion, because I didn’t feel like a leader of anything anymore.

I wasn’t sure what to expect from the class. I’d never even gone to a traditional support group. I’d been too exhausted during my 18 months of treatment, and for a long stretch afterward. By the time my energy did start to return, I wanted cancer behind me. My focus was on making the most of the rest of my life.

Except I wasn’t sure what that meant. I read books, took personality tests, talked to friends and finally decided to try writing. I’d spent 15 years in print journalism, but mostly I’d been editing someone else’s words. Now I had a lot to say myself. I was looking into classes when I heard about the LifeLab group.

One by one, the assignments fished out my demons: Anger because my husband had forged ahead with a kitchen renovation during my chemotherapy. Frustration because I’d lost track of my career. Anguish because I could never bear a second child.

All those emotions had run rampant until I wrote them down in my spiral notebook, where they became things I could identify and understand.

“Cancer is not going to control me,” I wrote in one essay, recalling my push through treatment. It had been my unspoken mantra, but it had never been completely true, no matter how much I’d wanted it to be. Part of cancer, for me, was learning to adapt.

I started my revision.

Going public
The group took a month off while our work was compiled in a journal. Then it was time for our reading.

I didn’t much mind that some of my pieces were still rough drafts. Setting the stories down on paper had been a first step; now it was time to send them out into the world, to read them to a room full of family and friends, and I was jittery.

Three times, I called Jamie by Jodi’s name. At least she was back. Even better, she told us she’d found a bone marrow donor. A transplant was scheduled.

When it was my turn to read, I was too nervous to remember to thank Jodi or David or the audience. Instead, I dove right into a poem called “Waiting Room”:

“Whisper-quiet elevators
gurgling fountain
orchids set in pots
muffled chatter
interrupted by the woman on her cell phone
recapping for all of us what the doctors say about her dad ..."

Before I knew it, I was at the end:

“Overhead speakers
murmur an instrumental version
of ’She’s Got a Way’
by Billy Joel
And everyone is older than I am
even the woman on her cell phone
who is here for her father.”

The poem described all of our lives as young adults with cancer. But it was also a work that was easier to speak aloud to strangers than later, even more personal ones. There are still things I can’t let go. Arlissa, too — in the end, her essay about her mother and grandmother remained unpublished.

The journal included short autobiographies. Jamie — still writing, still surviving — offered a conclusion.

“And so,” she wrote, “the process continues.”

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