SFGate: Alicia's Story

Some 1.3 million new cancer cases are diagnosed in the United States each year. Sarcomas are a class of rare cancers comprising about 1 percent of new adult cases; they are more common in children. Specific types of sarcomas are even rarer. There are fewer than 200 new cases of alveolar soft part sarcoma each year.

The following organizations offer dozens of links to other sources of information on cancers and their treatment; medical centers that specialize in cancer care; and support services and groups for patients and their families.

• cancer.org
• UCSF Cancer Resource Center
• Sarcoma Alliance
• alveolarspsarcoma.net
• cureasps.org
• sarcomacancer.org
• curesarcoma.org
• Anderson Cancer Center
• National Comprehensive Cancer Network
• Association of Cancer Online Resources

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Contributions in her memory may be sent to the Alicia Parlette Fund for Aspiring Journalists, Reynolds School of Journalism, Mail Stop 310, University of Nevada, Reno, NV 89557. The Chronicle has a limited supply of "Alicia's Story," a paperback compilation of the first installment of the series. All proceeds after tax and shipping will go to the Alicia Parlette Fund for Aspiring Journalists. To order a copy, send a check for $15 to "Alicia's Story," San Francisco Chronicle, 901 Mission St., San Francisco 94103. Order Form

: : : Interviews : : :

Listen to NPR's Alex Chadwick profile the series and Alicia at npr.org

Listen to Chronicle managing editor Robert Rosenthal talk with Alicia about the creation of the series on Chronicle Podcasts (6/29/05).

Take a look back at Alicia's Story in this podcast (12/22/05).

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Alicia's Universal Appeal
More than 2,300 people write to share feelings of commonality with Alicia.

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Orginally published Tuesday, November 1, 2005

In the series so far, Alicia Parlette, a 23-year-old Chronicle copy editor, learns she has a rare cancer spreading from a tumor on her hip. While she tries treatment with the drug interferon, she struggles with her fears and with the loss of her mother from cancer three years before.

My friend Steph came from Las Vegas to visit me at my dad's on Sunday, Oct. 2. My dad and my stepmom, Chris, had separated a few months before, and sometimes with just my dad and Tasha, our dog, the house feels empty. Having Steph there with me, my dad and my brother made it feel more alive, so warm and loving and happy. Like we were a family.

That night, Steph and I drove to my apartment in San Francisco. I get these waves of guilt because I sometimes forget that Steph had cancer, like I do now. She had part of her colon removed in September 2003 because of a tumor, and she was hospitalized for almost three weeks.

I had been feeling so, so alone — especially because my mom, who died of cancer three years ago, isn't here to compare oncologist stories with or to guide me through this — but that Monday afternoon it dawned on me that Steph could be there for me on so many more levels than I had been letting her.

I was lying on my bed. I was tired from getting an infusion of Zometa, a drug to help my bones retain more calcium so I don't get a fracture because of the hip tumor.

I wasn't tired from the infusion itself but from the whole ordeal of going down to the hospital, getting a bad stick and then a good one, letting myself cry through it and, during the moment with the needle, actually letting myself feel very scared. Steph wordlessly understood that I needed downtime, and as I lay on the bed, she crawled on next to me.

I could feel the emotions bubbling. The whole situation just sucked. I was going through the disconcerting experience of learning how to be an adult and to be independent and to live while constantly being haunted by the thought of dying. My therapist, Dr. Debra Marks, had told me numerous times that she thought I was straddling two worlds — that I wanted people to realize that the cancer was a big deal but that I wanted to be treated as normal me, too.

Steph, I realized, must have felt the same way.

"After your surgery," I blurted out, "did you ever feel like you wanted it to be a big deal, but you also wanted things to go back to normal?"

"I still feel that way."

My chest loosened. I wasn't alone. I should have known that.

"That's part of the reason why I haven't tried to get rid of my scar," she said. "I don't want it to go away. I don't want to act like it didn't happen."

That I understood. I was getting used to the gamma knife scar on my forehead — Steph told me she loved it because it showed how brave I had been -- and I was downright proud of my lumpectomy scar. Scars show that something had been there.

Even though they're not there anymore — even though I was thankful to have my breast free of cancer, even though Steph felt relieved to have the tumor out of her colon — these things had still been there. They had been a part of us, and the emotions and trauma we went through to get rid of them aren't things we can just forget.

I couldn't believe that we were part of the cancer club. When we were in Roseville, Steph and I went to my mom's grave, and as we sat there I thought about how it was that all three of us had had cancer. How bizarre and unfair.

But Steph and I were part of an even stranger club: the Twentysomething Cancer Patient Club. Cancer is never simple, but having it in your 20s makes it a different kind of complicated. The 20s are when you're supposed to really be getting to know yourself, including your body. You're supposed to become more secure with yourself, to learn to love and accept yourself and then go after what you want in life with a deeper kind of confidence.

But how can you fully love yourself when you feel betrayed by your body? How can you become secure when life is promising to be anything but?

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On Tuesday, Oct. 11, I met with Dr. Marks. We had been meeting twice a week for a couple of months. I talk to her about everything — cancer, family, relationships.

That day, we talked a lot about my work. The day before, my fellowship coordinator from Houston had called me to check in. He asked how I was feeling, then started talking to me about my options.

I was hired by Hearst Newspapers in August 2004 as part of a two-year fellowship program, through which I could work at Hearst-owned papers, like The Chronicle. My fellowship would end in August 2006, and he said I should think about trying to qualify for permanent disability, in case I was ever unable to work. To do so, I would probably need to take six months of short-term disability.

I couldn't believe I might have to go on disability. I was 23, for God's sake. This was worse than accepting the idea that I should get a handicapped-parking placard.

He also asked me what I wanted out of the fellowship before it ended. What skills I wanted to acquire, how I thought I could make myself more marketable to other newspapers.

I felt as if he was talking to someone who no longer existed — the woman he hired a year ago to become a success-hungry journalist. That person just isn't here anymore.

A year ago, I was eager to learn new skills, to grow as a journalist. Did I no longer want that? I didn't want to think that was true. But my goals seemed different. Before, my main focus was on becoming capable so I could snag a job. Now my goal was to make it through each day, happy and not completely freaked out by the idea that I could die. Just showing up to work seemed like an accomplishment.

I told Dr. Marks all of this in our session on Tuesday, and she again made the comment that I was straddling two worlds, cancer and noncancer. But this time, instead of just nodding in agreement, I started to cry.

At least she understood. She knew that I wanted so badly to be normal but that my life might be anything but. She knew that it was hard for me to make it through each week, let alone an entire year's worth of a fellowship. And she knew that I wasn't very good at sharing that with anyone else.

I kept dabbing my eyes with a tissue from the box Dr. Marks keeps next to her client chair, and it got soft and worn. I sat there, wringing the tissue, until I thought I could speak.

"People are always saying how capable and together I am," I said, hiccuping between phrases. "But they don't know that I go to therapy twice a week and that I can't even successfully grocery shop." I took a deep, ragged breath as the tears started streaming. "Things are not OK!"

She let me cry for a few minutes, just looking at me softly through her dark-rimmed glasses, and then she said: "I think it's time for you to be honest about that with other people."