Long Island cancer patients go online
Cancer patients cope with their illnesses through the Internet.
For one Holbrook mother, hope comes in writing.
“I’m cried out. I think. I want Gina fixed. No more cancer. I’m done — I’m tired and I’m cried-out,” Bonnie Mulieri wrote in March. Her daughter Gina, 11, has been suffering from brain tumors since she was 7.
A mother of six, Mulieri began blogging about her family’s experience in January 2008, the first time Gina’s tumors grew back after intensive chemotherapy. “I just laid it out and by the end of the page I had convinced myself through what I was writing that maybe there was hope still,” she said.
Gina has relapsed a two times or three times since. “The blog keeps me centered,” Mulieri, 41, said. “It allows me to express my feelings about what’s going on with her, my frustrations — the happiness, the sadness.”
Her blog, “NoEvidenceOfStinkinTumors,” is kept on CaringBridge.org, a nonprofit that hosts free sites for families with serious health issues.
“This blog keeps our feet on the ground . . . and keeps our spirits up,” she said. “I hope my readers feel a little better at the end of the day after reading what I’ve been going through.”
Meanwhile, Gina remains positive through her thinking. “I could climb to the tallest mountain and scream, just scream, but it won’t change anything,” Gina said. “You just got to believe. You can get through anything, just believe.”
Kerry LaRosa, a cancer survivor, wife, and mother, juggles caring for her family and her passion for the Internet.
When she’s not looking after her son Michael, 3, she spends much of her time on the Internet talking to other survivors, she said.
She was diagnosed with leukemia at 33 when her son was 17 months old. She spent a month undergoing chemotherapy in the hospital. While away from her son, LaRosa said she was terrified by one thought.
“My biggest fear was that he was so young he wouldn't even remember me if I died," she said.
To cope, she too turned to the Internet. For her, hope came in seeing her son’s face on her computer screen. Through video chats, LaRose said she saw her son often and even read him books.
Her time in the hospital, she said, was made bearable through the Internet. “If I didn’t have my laptop, I don’t know how I would have done it,” LaRosa said.
When she returned home, she turned to social media to keep her family and friends aware of her condition. “Facebook was like a lifeline to me.” LaRosa said her page was a way to talk to people when a phone conversation was just too tiring.
On various sites, LaRosa said she continuously updated her family and friends on her condition, found other young cancer patients, and joined support groups to share her story.
“It’s amazing to talk to people who are in similar situations as you,” she said. “It’s great to share good news and cry together . . . If you have something you need to get out of your system, you can post it.”
Cancer-free since May 2008, LaRosa continues to make lasting connections with people struggling with illnesses.
“I’m on the computer all the time,” LaRosa said. “When I post that I have been in remission for two years . . . and when I see my girls from the cancer group . . . it means something. They can really understand.”
Howard Cohen, 50, of Seaford, suffers from cerebral palsy, a disorder that requires him to use a wheelchair and affects his motor skills and ability to communicate. He speaks slowly and can sometimes be hard to understand.
Cohen, a teacher’s assistant at United Cerebral Palsy Association of Nassau County, uses Facebook and AOL Instant Messenger to talk to friends and family. For him, the Internet is a way to escape his disability. When he’s online, he has no problem sharing stories and recalling the day’s events. He easily types messages and changes his Facebook status regularly. The Internet and social media sites allows his disability to get out of the way, he said.
“It’s frustrating sometimes to talk to people,” he said. Through online discussions, Cohen said he communicates with people clearly and effectively.
“I feel I am equal when I talk to my nephew and we can have a normal conversation.”
For Jacqueline Lederman, 23, who was diagnosed with leukemia three weeks before graduation from SUNY College at Oneonta last year, the Internet meant discovering what life after cancer could hold for her.
“When I first got diagnosed, I thought ‘Oh, my life is over, this is it,’” Lederman, of Hampton Bays, said. “But just seeing women who have children and people who go on to find successful careers, it’s just so inspiring to know I can have that... that this is just a bump in the road.”
One of the youngest patients in North Shore University Hospital leukemia unit, Lederman said she was drawn online to see photos of her friends during graduation season.
“I stayed on Facebook throughout my illness,” she said. “It was hard because I saw them doing things kids my age do. It made me happy to know they were out having fun. I felt a closeness even though we weren’t physically close.”
At first, Lederman said it was too painful to look for others with her illness. She valued her privacy and hadn’t accepted what was happening to her.
But as she regained her health and accepted her condition, Lederman said, in the past year she has sent messages, combed through pictures, and even found new friends — young cancer patients.
“It was a great tool after I let it be,” she said. “It gives me hope to talk to people who went through it. We can relate to each other — there’s so few people I can relate to now.”
Once unable to climb stairs, Lederman, who is still being treated, now plans to attend Adelphi University this fall and hopes to become a social worker for young cancer patients like herself.