Two years ago, my 35 year old brother died of a brain tumor that he battled for almost 4 years. It started as a Stage 2 Astrocytoma. During his initial awake brain surgery, they got most of the tumor-all they could get without compromising his ability to communicate.
His cancer was under control for almost 3 yrs. His MRIs looked good,even the one he had in January 2008.
Then he started to develop symptoms again. Extreme dizziness, odd behavior, and migraine headaches led us all to believe that his tumor may have begun to grow again. This was in April 2008. A call to his doctors at the Preston Robert Tisch Brain Tumor Center resulted in an immediate appointment there.
His new MRI showed that his tumor had completely, aggressively grown back. Dr Friedman scheduled an immediate surgery and biopsy. Alan did well with the second awake brain surgery and we were hopeful once again. However, the biopsy of the tumor revealed Stage 3 and Stage 4 cells. The tumor was now categorized as a Glioblastoma. The average extra years for a Glioblastoma patient was 5yrs.
Alan started an aggressive treatment plan which, at the time, was new. In fact, Duke University’s Robert Preston Tisch had one of the only machines in existence at the time. This state-of-the-art treatment included two different chemotherapies and the use of the aforementioned radiation machine. The treatment was overseen by Dr. John Kirkpatrick and through this video link you can learn more about this exciting development. http://www.dukehealth.org/health_library/video/state_of_the_art_cancer_treatment_novalis_tx_at_duke
Despite radical, aggressive treatment, the tumor returned again and the brain cancer spread to form other tumors in the brain. By the beginning of December, his doctors offered to switch Alan to a comfort/pain management/quality of life treatment program. Essentially, they were preparing us for the inevitable. Alan, unwilling to simply surrender to the cancer, opted to continue chemo and other meds until the very end.
Our last Christmas with Alan was very bittersweet because we knew there would be no more holidays to share. He was sick and felt terrible the whole day. He couldn’t eat and was no longer his jovial self. From that point on, his condition deteriorated a little every day. He reached the point at which he could no longer walk, had to be helped to use a bedpan or urinal container. He had to have a hospital bed. Mom became fearful that he would try to get up during the night and would fall out of the bed, so she laid on the couch at the end of his bed and barely slept.
When he reached the point of not knowing what was going on, I convinced Mom to call in Hospice. He was moved there within 24 hours and died about a week later on February 10, 2009. We were all at his bedside along with the pastor and two of Alan’s best friends. Alan and I were very close. I spent most of the next year deep in grief that would sneak up and engulf me at times.
I still miss him so much and pray that there will be a day when no one else’s family must suffer for this. That is why I try to keep abreast of advances in treatments for brain cancer. It is why I encourage people to know what is available to them or their family in case, God forbid, you should ever need to know.