The Nevada Sagebrush

Aveolar soft part sarcoma (ASPS)

• What: a rare form on cancer that is a vessel-forming tumor.
• Who: affects less than 200 people in the U.S. It is typically found in teenagers and young adults.
• How: the cancer can exist in the body for a long time before being detected because of the tumor’s slow growth. The tumor is formed when a segment on a chromosome links to another chromosome. It is common for the tumor to spread to other parts of the body, especially the lungs.

Source: sarcomahelp.org

Nurse Anja Manishin, middle, administers an IV as Kate Ferroggiaro, left, holds Alicia’s, right, hand. Photo courtesy of Kurt Rogers /San Francisco Chronicle.

The last time Alicia Parlette, a 2004 University of Nevada, Reno journalism graduate, had to be taken to the hospital, she wanted to turn around and go back home.

“I almost refused to be admitted because I knew I couldn’t afford it,” she said.

When she realized that she was about to turn down medical assistance because of money, she reached out to former UNR professors, coworkers, friends and family for help.

She was admitted for large skin infections on the site of a hip tumor, just one of the areas that alveolar soft part sarcoma, a rare form of cancer, has spread throughout Parlette’s 27-year-old body. Parlette’s cancer was discovered after a breast biopsy in March 2005. Further scans showed the cancer had spread to her lungs and right hip. Five months later, an MRI showed two spots in her brain. According to sarcomahelp.org, only 33 percent of patients who have the cancer in multiple areas survive five years.

Faced with growing medical bills and upcoming treatments, Parlette sent out an e-mail on Aug. 20 to a mailing list of 150 people to whom she sends updates periodically. In the e-mail Parlette asked for anything people could provide: money, a ride to her chemotherapy treatments in Santa Monica, Calif., or a place to stay.

Within a few days she had received hotel points to give her a place to stay during her treatment that weekend and a ride to California. She also received offers for places to stay in the future as well as money. Parlette said many people choose to send checks directly to a friend who manages her medical funds bank account, meaning she won’t know immediately how many people respond.

“Sometimes I don’t even know until I’m sending out thank you notes and realizing how many people have been involved,” she said.

Parlette has only had to ask for money a few times, but has gotten a large response each time, which took care of her medical bills for the past year.

After four unexpected hospital visits during the past several months, Parlette’s medical fund account was wiped out.

“The biggest help I need right now is financial,” she said. “I can’t pay these bills at all.”

The dream job

Parlette was diagnosed less than a year after starting her dream job as a copy editor at the San Francisco Chronicle.

She spent the majority of her time at her job after the diagnosis writing about her battle with the cancer, a slow growing tumor that is connected to the blood system and easily spreads to other parts of the body.

Starting in June 2005, the Chronicle began publishing Parlette’s first-person account of battling cancer, which ran on the front page for several days.

She continued to write an update on a somewhat monthly basis and then began publishing a blog. During the first week, Parlette received 3,500 e-mails from readers.

“The community responded really well to it,” she said.

Robert Rosenthall, then-managing editor for the Chronicle, said he asked Parlette to write an honest account of her story and thought it would be a good outlet for her.

“It was a very unusual story and a very personal story,” he said. “We, as a society, have a hard time talking about illness and cancer.”

Parlette was named ABC’s Person of the Week in June 2005, and the first seven chapters of “Alicia’s Story” were published as a book by the Chronicle.

Her story also won her the Robert Laxalt Distinguished Writing Award in 2005, an award presented by the Reynolds School of Journalism to honor an accomplished author.

“She’s not a seasoned reporter, but she’s a hell of a writer,” Warren Lerude, the presenter of the award, said. “It’s been a great national story and it continues right now.”

In February 2007, Parlette was forced to quit her job and go on social security disability. She had been receiving chemotherapy and was unable to work.

She still cannot have a job because she is taking full advantage of her disability.

“It was really hard,” she said. “Losing my job was at times harder than having cancer.”

Holding on to health insurance

When she left the Chronicle, Parlette was able to keep her private health insurance with  Hearst Newspapers for three-and-a-half years, which greatly reduces her medical bills. She pays $25 for a medication that would normally cost $300.

“I honestly have no idea how people survive who don’t have private health care,” she said. “It makes me so depressed to think about people who are in far worse conditions health wise and financially.”

Next April, Parlette will no longer be eligible to receive this health insurance because of the pre-established time limit with Hearst.

“I’m already really nervous about it,” she said.

New treatments

After undergoing many treatments, including injecting herself with medications, undergoing a gamma knife procedure for the spots in her brain and chemotherapy that she reacted poorly to, Parlette signed up for a clinical trial in Santa Monica.

She now travels there every three to four weeks and receives a 24-hour chemo infusion of a drug created to treat soft tissue sarcoma.

Before starting this trial in May 2008, some of Parlette’s cancer spots were growing at a rate of 40 percent every six to eight weeks. During the first eight months, the cancer growth slowed and even shrunk slightly. After that, the growth continued at a rate of five to six percent. Once the total growth reaches 20 percent, Parlette will have to leave the trial due to established rules.

Day-to-day life

Although Parlette is unable to have a job, she volunteers two days a week with Equality California, a nonprofit organization working toward rights for the lesbian, gay, bisexual and transgender community. She is unable to do any door-to-door work because of the pain caused by the tumor in her hip.

Instead, Parlette makes phone calls, puts together pamphlets and organizes other volunteers’ routes.

She is very passionate about the goals of the organization and said that it is important for her to do something for the community.

“It’s probably the healthiest thing I’ve done in a long time,” she said.

She also takes an art therapy class and writes poetry to give herself a creative outlet.

These activities only take up a small portion of her days, as she needs to rest more than other people.

When Parlette is not undergoing chemotherapy treatments, she is dealing with the effects of them.

“By the time you start feeling better you have to go get chemo again,” she said.

Parlette is also dealing with always being on painkillers for her hip. This, combined with the chemo, leaves her feeling tired and drugged up all the time.

Years of coping

Parlette said people often comment that she seems to be dealing with her condition well and always seems to have a positive outlook.

“In my head I think, ‘What the hell else am I supposed to do?’” she said. “I could kill myself, but I’m trying to keep myself from dying.”

In her Chronicle stories, Parlette discussed her faith frequently. In recent years, however, she’s had a crisis of faith. After a while, she began to think that praying to God and asking for miracles wasn’t realistic, and needed to change her faith a little in looking for strength.

“I’m pissed off about (having cancer),” she said. “In my head, most likely, I’m not getting out of this.”

Although she struggles with finding ways to cope, Parlette said that she is appreciative of all the support and help she has received. Last Tuesday she sent a follow up e-mail to her mailing list, letting them know about the responses she got and how grateful she felt.

“I feel showered in blessings right now <has a huge grin>,” she wrote.

Donate to Alicia

• $20 pays for one month of pain prescriptions.
• $35 pays for one month of antidepressants.
• $120 pays for one month of doctors’ appointments.
• $250 pays for bimonthly scans, or pays for one month of all prescriptions.
• $450 pays for one monthly trip and chemotherapy appointment.
• To donate, make out checks to Alicia Parlette and send to:

• Bruce D’Ambra
  Alicia Parlette Medical Fund
  1407 Nichols Drive
  Rocklin, CA 95765

Emily Stott can be reached at emilyjanestott@gmail.com

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