Online posts help cancer patient share feelings

May 18, 2009 

SACRAMENTO -- Jessica Lum announced she had cancer -- on Facebook.

Her close friends and family already knew, but it just seemed easier for the 21-year-old to get word to everyone else -- the more than 1,000 friends she has on the social networking Web site -- in one note titled, "I have Cancer + 10 questions you might ask."

The answer to her first question: "No, I'm not joking. Why would I joke about something like this?"

Since that post on Christmas Day, Lum has shared the status of her deteriorating hip and liver. She has written about her treatments and the stylish shortcomings of hospital gowns. She questions life and death. And she does it in an online style of honesty mixed with humor and sarcasm.

"It's a nice way to give updates instead of having to talk about it over and over again individually," she explained. "Plus, it's hard for a lot of my friends to really know what to say."

Increasingly, people with cancer and other serious illnesses are using blogs and social networking sites such as Facebook to announce that they are sick and offer updates on their conditions.

Relatives and friends are logging their support on sites such as CarePages.

The sites give patients a cathartic way to share their changing emotions.

"Some want to acknowledge that they have cancer and that they're stronger than the disease," said Marlene von Friederichs-Fitzwater, an adjunct professor at the University of California at Davis School of Medicine, who researches young adults with cancer. "There's a kind of public recognition about it that gives them strength that empowers them."

Lum had just gotten home from UCLA on Christmas break last year when she got the cancer diagnosis. She said she found herself at the keyboard of her MacBook Pro, typing a note to her Facebook friends with the news. It made it real to her, she said.

Facebook is where Lum has documented much of her life since leaving Sacramento for Los Angeles. She posted photos from the first football games of freshman year. There are pictures of her taking pictures, while working at the college newspaper. There are road trips to San Diego, Salt Lake City and Pink's hot dogs.

Diagnosed with rare form of cancer

Last fall, at the start of her senior year, Lum couldn't shake a chest cold.

The English major squeezed a doctor's visit into her schedule. While there, she offhandedly mentioned a swelling she'd noticed on her stomach.

The cold went away. But the bump -- a tumor the size of a grapefruit -- turned out to be metastatic pheochromocytoma, a rare cancer for which there is no established cure. And Lum was in Stage 4, meaning the cancer was growing quickly.

Lum moved home to Sacramento. The hardest part of coming home and giving up school, snowboarding and beer, she said, was that she felt fine.

In a Jan. 7 posting, a couple of weeks after her diagnosis, she wrote: "If I get irradiated in my hip area, I get some cool X-shaped tats to take away from it all. I've always said I wanted a tattoo." The radiation therapy and a round of chemo in March began to take their toll.

"To be perfectly honest, I hate the situation I'm in," she wrote on a blog that she keeps in addition to her Facebook page. "I'm dying. No matter what I do, the truth is, I'm dying. This cancer will most likely kill me, a few years down the road, maybe sooner."

Generational comfort

The comfort of sharing such private feelings on a public platform is largely generational, said Jesse Drew, director of the technocultural studies program at UC Davis.

"An older generation would be much more reluctant to share that kind of information with anyone other than close family," Drew said. "But people today are much more used to showing themselves on YouTube and discussing personal details."

And the people in Lum's network of Facebook friends and blog readers are her peers -- not the generally older cancer patients Lum would find in a traditional support group, said von Friederichs-Fitzwater, the UC Davis professor.

"People want to feel as normal as possible while going through this," she said. "A big thing is having a forum where they can talk freely about the disease, what they are going through, their fears. A lot say they can't talk to their parents because they don't want to worry them."

Lum writes about being afraid and feeling alone.

"I feel myself slipping away daily. The things I used to be able to do are no longer options," she said in a March 30 blog post. "Amidst all of this, it's difficult to find joy."

'It's exhausting telling people'

Beyond a high-tech form of keeping a journal, blogs and specialized Web sites help families efficiently and swiftly get news out.

"It's exhausting telling people the same thing over and over," said Marjorie Martin, general manager of Everyday Health Network. The company runs CarePages, a Web site where people can create pages dedicated to someone diagnosed with a serious illness.

"Friends and family can post messages for each other to see -- it brings them all together and it's more than the one-to-one communication from e-mail," Martin said.

About 4,000 pages are created through CarePages each month, she said. They usually are set up by someone close to the patient, and can be public or accessible to only an approved group.

Dr. Jonathan Hake facilitates cancer support groups at regional Sutter and Mercy hospitals in Sacramento. He said only about 10 percent to 15 percent of the patients he sees turn to blogging or social networking after their diagnoses.

Although practically all patients seek out information online, and about half find online support groups, it's still a small number who create virtual communities for themselves, he said.

Part of that is age. Cancer hits a mainly older generation. And part of it, he said, is simply how some people choose to deal with their illness.

"That's a question every cancer patient must face -- how upfront to be or how private to be," Hake said. "But this isn't something you want to do yourself."

Patients encouraged to find others

Whether patients are online or among the members of a traditional support group, Hake encourages them to find others who understand the emotions, toxic treatments and health changes that cancer causes. He cautions patients against trying to be positive all the time.

"Hope is a real important part of it, but a lot of people think cancer patients are supposed to be positive all the time," he said. "Feelings of doubt, despair, frustration, anger -- those are part of the journey, too. You have to express all of them."

Lum does.

"I have a very, very aggressive cancer. It's also very advanced," she wrote April 27. "Good for it, very bad for me. But hey, if I die, I'm taking the cancer out with me, too."

Lum underwent a clinical trial Friday at the University of California at San Francisco, where she received a high dose of radioactive iodine. She will remain sequestered in a lead-lined isolation room through this week. She has her laptop with her, wrapped in plastic so it won't become contami- nated.

"This is my last night in a regular bed. And likely one no one has DIED ON," she wrote on her Facebook page during a sleepless night Wednesday and early Thursday, the day she was admitted to the hospital. "I'm being dramatic. But whenever I'm in a hospital bed, in the ER or something, I wonder if someone died on it."

She ruminated about being holed up in an isolation room where dining service workers have to leave her food outside and wait for it to be carried in by a nurse.

She thanked her friends for their support, prayers, well wishes and gifts. And concluded: "See you on the other side."

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