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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"What is it?" she asked, and I could barely get it out. I think I said, "It's cancer," but she didn't seem to hear me.
"Cancer," I whispered again, and she just grabbed me and starting crying as she hugged me. It felt good, like something a friend would do, like maybe even something a mother would do, and I thought that was reason enough to start crying again. My chest hurt, but I was glad to be able to cry and to be able to tell.

We stayed in the bathroom, I don't know how long, until someone else came in. We walked down the hall, and Jan turned me around and led me to the roof of the building – a quiet place that has patio furniture and flowers and is usually empty.

She left me there, and I decided to call my dad. I didn't want to bug him at work – he teaches graphic design at Sacramento Valley Technical High School. I felt so bad about interrupting him, about sending his life in this new direction. I wanted to delay it as long as possible, but I needed a parent, so I called.

He was in class, but he excused himself and I told him as calmly as I could.
"I heard from the doctor. And it's cancer." I wasn't crying. He wasn't crying, either, and he asked for all of the specific information, like the exact name and what the doctor said and when I would have tests. I didn't want to talk about that, I wanted to be numb and wallow and not have to plan anything, so after he got the information, we were done. I was struck by how calm he seemed, but then I remembered that this wasn't new for him. He had done it before, with my mom.

I called my boyfriend, John, but couldn't reach him at work in Reno, and I couldn't reach my brother in Roseville or my surrogate mom, Sally, either. The loneliness was mounting, and I started pacing again.

"Your mom died of cancer," I heard in my mind, and my heart started racing and my hands got shaky, so I called John again and had someone who works with him track him down. John is so much like my dad that he was calm and asked about the tests and where I was and whether I was going to go home, and I started yelling at him, asking him to act like it was a big deal.

Everyone around me was so calm that I felt betrayed – like they had all known this was coming but hadn't clued me in. I was even more thankful for Jan's sympathetic tears.

Finally, Sally called back. I had known Sally since I was 5, when her twin daughters and I went to kindergarten together in Concord. She and my mom were very close, and when my mom died in 2002, I latched on to Sally. When I told her the news, all she said was, "Just get on BART and get here. Just get here." I was happy to have someone to make decisions for me.

Too angry to make more phone calls, I went back to my desk. I saw Bernadette and asked her to follow me into the hallway.

"It's cancer," I said. She asked for details, so I gave them. When I was done, she looked so calm and under control that I was confused when she said, "Could you tell me all that again? I didn't hear anything. I'm in shock." I felt relieved that I wasn't the only one.

I told my editor what was going on, and we shared some tears and hugs, and then another co-worker, Deb, offered to drive me to Sally's. "We don't want you to have to be alone on BART," she said. I realized that I had an unexpected family at work, and even then I knew I would have to rely on them more than I could imagine.

Deb and I got to Concord, and it was so sunny that the whole cancer thing had to be wrong. It's too beautiful outside for me to have cancer, I thought, and I believed it.

I saw Sally and felt exhausted. I spent the rest of the day calling people, talking, reliving it over and over and over.

Dr. Feldman called several times that day and the next, on Wednesday and Thursday, checking in to make sure I was handling everything OK. I don't know how OK he was expecting, considering I was a 23-year-old who had just been told that I had a cancer – a ridiculously rare cancer – that was, he kept telling me, "a cause for concern."

He also told me that I would have a PET scan on Friday afternoon. I had no idea what a PET scan was. He said it would determine whether the cancer had spread. I was sure it had.

Thursday morning, my boyfriend, John, came to Concord from Reno, where we had graduated from the University of Nevada. It wasn't a whole lot of quality time, since I was on the phone to doctors or schedulers or friends or family members so much that he and Sally eventually cut me off and wouldn't let me pick up my cell phone, but things felt more normal with him around.

On Friday, John and I met my best friend, Ashley, and her mom, Pat, to go to San Francisco for my PET scan (which I found out stood for positron emission tomography). Pat and her husband met my parents when I was an infant and Pat was pregnant with Ashley.

Ashley and I grew up calling each other's mother Mommy Pat and Mommy Pam, and we still do. At my mom's funeral, Ashley read my eulogy for me. Being around them feels like being with family because, to me, they are family.

Pat drove cautiously from her home in Moraga to San Francisco, navigating the city's hills with the help of John's directions and my random shouts of advice from the backseat. She seemed surprised, but thankful, that we got there and ushered us into the elevator so I wouldn't be late.

I don't know why, but I was excited about this appointment. I was in a good mood from hanging out with Ashley, Pat and John, and it felt like a reprieve from work and my teary phone calls. We settled into a leather couch to watch TV and read magazines. I was relaxed, ready to see what a PET scan was all about.

Having a PET scan means a technician fills you with radioactivity so a big doughnut-looking machine can take pictures of your entire body to see where the cancer has spread. To get radioactive, you are injected with radioactive-tagged sugar water.

I confess: I am terrified of needles.
I know almost everyone has some kind of aversion to them. It makes no sense to have metal shoved into the body, let alone the veins. And every time I tell some tech or nurse or doctor this, they just smile and nod. "We'd be worried if you liked it," they say.

But every time that needle appears, I start crying and hyperventilating, and the techs don't know what to do with me.
So with the PET scan, the same thing happened. "I just get so worked up," I told the tech. "It's in my head, I know, but I just don't like needles" – tourniquet is snapped on – "and I don't like the feel of the blood trapped in my hand" – alcohol is rubbed on my skin – "and I know I make it worse than it is – Owwww!"

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