Edison
By Sarah Morrison
Itsjustbenign.com is not a typical social networking Web site. Instead of bringing strangers together as friends, it brings benign tumor survivors together to share their experiences and hardships as they recover from their ordeals.
"From the time I was little, I had always taken ballet, jazz, and gymnastics," Rosenthal said. "I practiced all the time -- that was my big passion. As I got older, I wasn't feeling as energetic as usual. And then I was diagnosed."
Once doctors located her tumor, she had two operations and radiation. As a result, she has a weak left side that affects her fine motor skills and balance, hearing loss in her left ear, and chronic nerve pain that makes daily life difficult. Yet Rosenthal went undiagnosed for 12 years in excruciating pain.
"Pain wasn't studied like it is now," Rosenthal said. "Pain was not as respected and as understood. The Internet also wasn't around like it is now [to research treatments] and I was too sick to do my own research. I was out of my mind with pain and doctors gave me medication, but they never gave me the right medicine. They were scared that I would be a narcotic [and that] I would get addicted."
The Internet also wasn't around to help Rosenthal find fellow survivors to talk to. It was challenging enough to complete missed schoolwork in searing pain, let alone try to explain to people exactly what she had endured.
"Nobody really understood what was happening to me or tried to understand it," Rosenthal said. "When I went back to school, nobody asked what changed. When you're 11, that's not the first thing that comes to mind. However, no adults even tried to do that. I learned from this experience that I would rather have three minutes of being uncomfortable than not saying anything at all."
As a result, Rosenthal's mother, Judy, became a major source of support that Rosenthal says she wouldn't be alive without.
"My mom took me around to different doctors for a year until I was diagnosed," Rosenthal said. "Besides for that, when you're 11 years old and you know you're going to have brain surgery and you're scared -- she was such a comfort to me. She stayed with me for the two weeks that I was in the hospital. She always made me feel as safe as she could. She went with me to every follow-up MRI that I ever had… she would always hold my ankle so I know that I'm not alone in the room. She was there for me when the pain started. I woke up in the middle of the night; she sat by my bed and rubbed my hair until I fell asleep. She was the only person who never made me feel like I was a drug addict or questioned my sanity as far as if the pain was real or if I was making the pain worse myself. She was my support."
Rosenthal is very lucky -- and thankful -- to have had loving family by her side throughout her entire ordeal and to have them as a continued support system after the tumor was removed. But what about the people who don't have a loving support system? Rosenthal wanted to meet other survivors and form a family of benign brain tumor survivors to relate to others who have also gone through the process. However, when she started to search for support groups online, every group was for cancer survivors. There were no support groups for benign tumor survivors.
"There is a big misconception that benign brain tumors are harmless, but when it's in your brain, it's not harmless!" Rosenthal said. Although Rosenthal was too young to realize how lucky she was that the tumor was not cancerous, it certainly doesn't mean that it hasn't altered her life in a similar way.
"Because I was so young, [cancer] wasn't even a focus," Rosenthal said. When you're that little, you're just doing what your parents want you to do. I knew hat something was wrong with me. Although I was involved in so many activities, I was just getting more nauseous and pale with each day. I remember being told [about my benign tumor]. I was not happy. But you really don't understand what's happening that young."
"I'm very lucky that it wasn't cancer," Rosenthal continued. "I never realized how lucky I was up until a few months ago. I was always so angry about my side effects that I never thought about how lucky I am to not just be here, but to be breathing and swallowing on my own. (Rosenthal's tumor was located in the part of the brain that affects breathing and swallowing.) My parents did an absolutely fantastic job picking out the right doctor. It's much easier for someone to say 'you're luckier' than it is to feel that way."
So Rosenthal filled the need for a benign brain tumor survivor support group and created ItsJustBenigin.com one year ago.
To date, 35 people have joined to share experiences, support one another, and embody the cliche that one is never alone.
"I met a lot of people, but it's not quite the same experience," Rosenthal said. "Nobody's had pain like I have, but there are people with hearing loss and vision impairments. Two people in their 30s had strokes as a result of the chemotherapy. It's devastating to see what I lived through and he's gone through in a different way. It's heartbreaking to know that I can't do anything. I can't do anything beyond give the name of my pain doctor. Everyone has his or her own story. I just assumed that people didn't have any side effects from surgery or radiation, but they still do."
For the survivors around the globe who found ItsJustBenign.com, it's provided a network of people who have been an essential support system and a reminder that they truly aren't alone.
Rosenthal would like to extend a helping hand to anyone -- a survivor or the family of a benign brain tumor patient -- who feels like they could use support and guidance. Those who have been affected by a benign brain tumor can visit to www.itsjustbenign.com, where they can be put in touch with Rosenthal.