Starting in August my wife, Janis had began walking on doctors orders to reduce her blood pressure. She had minimally accomplished this, but had lost some weight in the process. However, on September 10, while walking, she suffered what was later diagnosed as a seizure, and called one of my sons to come pick her up. He did as instructed and called me (1000 miles away) to say that he thought she had had a stroke. I pooh-poohed the idea and told him to let her cool off and call me back. He called back and said he wanted to call 911. I told him not to and said to wait. In the interim, my wife agreed to go to the Emergency Room where she had another seizure (they later diagnosed that she had one earlier) and promptly put her in ICU.
An MRI was called for and given, I walked in as the doctor came to deliver the news about the seizure and the diagnosis. He suspected a tumor and he wanted her transferred to Sarasota Memorial Hospital where they offered the option to implant Gliadel wafers in the lesion to combat the tumors extraneous cells. On September 13th, after two days in ICU, my wife was transferred to the Sarasota Memorial.
In pre-op, the surgeon, Dr. John Cassidy, explained that the surgery would be done with computer aided tools that would allow him to precisely target the tumor. On September 14th, at 11:00 AM my wife was wheeled into OR. At 1:15 PM the surgeon came into the OR waiting room and signaled for my son and mother-in-law and I to enter the consultation room. He said that it was malignant brain cancer and that he had removed everything that they could see and he recommended that we search for Glioblastoma stage IV. He also said that they had implanted three Gliadel wafers into the area of the resection. I thought little more about it and inquired about my wife. We were allowed in to see her in post-op and she seemed quite normal considering the fact that she had just had a craniotomy. Again the surgeon emphasized that he got everything that he could see. Later, I had a chance to get on the internet and search for the term and realized the sentence. The initial realization of GBM diagnosis was overwhelming. What's next?
She was kept in post-op for 24 hours and then transferred to a room on the neurological ward. She had a followup MRI done about 30 hours after surgery which according to the surgeon was clear. On September 17th, in the morning she passed the tests of the occupation therapist with flying colors and was discharged from the hospital. The doctor put her on 400 mg Dilantin, 8 mg Decadron and 40 mg Pepcid daily. By the afternoon of the 19th she was swimming in the pool at her mothers condo. On the 20th, I had to leave town for 4 days and when I returned I was nothing short of amazed at her recovery.
September 24th, we visited the doctor to get her staples removed and he scheduled appointments with both a medical oncologist, Dr. Jameel Audeh, and a radiation oncologist, Dr. Alan Porter, affiliated with Moffitt Cancer Center. He also decreased the Decadron to 6 mg daily. On September 25th, we visited Dr. Audeh and after all vital signs were taken, we were offered the opportunity to enroll Janis in a clinical trial offered by SCRI Oncology Research Consortium to determine the efficacy of adding Avastin and Everolimus.
On October 3rd, I had to leave town again for one week, and her mother took over making sure that Janis got her medications at the right time. On the 4th, Janis started complaining of a rash on her chest, and on the 5th during a visit to the medical oncologist, he took her off the Dilantin. By the weekend Janis was starting to feel somewhat disoriented, and on my return I called to see if her medication needed to be adjusted. I determined that her mother had inadvertently increased her Decadron dosage back to 8 mg. The doctor suggested that we increase it to 12 mg to get her levels back up.
On October 12th, we visited Dr. Cassidy and he put her on 1000 mg of Keppra daily.
