Updated 1/1/2007
[Click HERE for Shannon's updated story!]
Anaplastic Oligodendroglioma (grade 3)
Shannon O. - Diagnosed June 15, 1994
June 15, 1994. Grand mal seizure. My eyes rolled. I turned blue. Stopped breathing. My husband was terrified. He thought I was dying.
Rushed to ER. Woke up in a wheelchair. Nurse, in my face, loud: "Do you know where you are?" Hospital, I knew. "Do you know what happened to you?" Not a clue. Carsick from the frantic car ride, still fuzzy from the seizure. Stood up and nearly fell over.
Waiting on a gurney in the hallway. Young doctor stops by: "We think you have one of three things: a brain infection, a brain cyst, or a brain tumor - most likely a brain tumor."
I am Shannon O'Brien. 36 years old. Ten-year brain cancer survivor. Self-advocate and brain tumor activist.
At the time all this took place, I was living in Seattle, working as food server at a Japanese restaurant. No medical insurance. The hospital decided to discharge me. I had received no tests or treatments of any kind. Luckily, my Aunt Molly was there. She went to find a doctor. Bless the luck of the Irish, the doctor she found turned out to be world-renowned neurosurgeon Dr. H. Richard Winn. He declared my case an emergency, and five days later performed my emergency brain surgery, successfully resecting my huge tumor, 100 percent.
I remember waking up in my hospital bed. Music on the little radio, cello and piano. My life flew before my eyes. I just cried. It all came out. I felt the time ahead would be the toughest time of my life. And it has been ...
Diagnosis: oligodendroglioma, grapefruit-sized, right frontal lobe. Radiation therapy, six weeks, a lifetime dose. I had to stop working and go on welfare, then Social Security disability. Marriage ended. Between the tumor, the seizure, the surgery and radiation, I now had a lot to cope with: depression, short-term memory loss, headaches, fatigue, pain. Somehow I began putting my life back together. Six years went by. I dared to hope the nightmare was behind me.
But no. Recurrence, after six years. Brain surgery again, June 2000. Again, 100 percent resection by my brilliant Dr. Winn. But my tumor had "progressed" - anaplastic oligodendroglioma, a more aggressive tumor. My hero, neuro-oncologist Dr. Alex Spence, now advised chemotherapy. I completed 12 grueling months of Temodar.
Today my quarterly MRI scans continue to show no visible tumor. But I still have headaches, fatigue, pain, the long-term effects resulting from brain cancer treatments. And I have to live with the knowledge that my tumor could come back at any time.
The present treatments for brain cancer are not curative. We need new and better treatments. More funding for research. Legislation to improve the research system and to provide better access to care, treatment, and rehabilitation services for brain tumor survivors.
Will I live a long and full life? That could be up to you. Lawmakers, I implore you: Please do everything in your power to help. PLEASE HELP CURE BRAIN CANCER!!!
Updated 1/1/2007
Back in May of last year i had a recurrence, surgery, and now i'm on temador again for another year. i just finished my 6th round. so far so good on my MRIs. i get them every other month. so i've just been laying low and do chemo. Not too busy other than that. I'm still not working, which I totally miss.
PLEASE HELP US FIND A CURE!!!
Shannon
