Sep 24, 2011 - 10:27 am
My hubby Neal, developed a hand tremor and nausea in mid-August. He started lying around too much and being more forgetfull in July, but these symptoms were subtle.
The Head CT showed bilateral periventricular tumors and we were admitted to a local hospital in Ft Wayne Indiana. He had MRI on 08/29(showing also a large rt parietal tumor) and stereotactic brain biopsy on 08/31.
The pathology report then took 12 days(09/12) to return, delayed by Labor day weekend and being sent onto Mayo on Sept 6. So from the time we knew he had brain tumors to diagnosis was 15 days and every one of those days I lost more of him. He retained motor skills but his memory, his intellect, and his personality were ravaged. I took him to a neuro-oncologist at Indiana Med Center on 09/14 and she wanted to emergently admit him and start Avastin, CPT-11 and Temodar because she believed he had GBM rather than grade III astrocytoma as the path said. I liked her, she understood we had no time. She talked with our oncologist and he promised we could come back to Fort Wayne and start treatment there immediately.
Back in Ft Wayne, he did not want to follow the neurooncologists recommendations as he did not recognize her and he got us ready to see the radiation oncologist the next day. This is still the 14th. On the 15th he had CT and MRI to size him for radiation and the MRI showed the tumor had doubled in size since the last MRI on 08/29(17 days) and now only palliation was possible.
On Friday 09/16, the Oncology group had a new rounding doctor and he wanted to follow the IU Med Center neuro-oncologists idea and he called her and on the 16th
Saturday the 17th, he did not seem to slip any. Sunday the 18th he was quiet, depressed, and refused to eat. He spent most of day in bed. I got him up at 8PM and finally got some food in him and he stood on one leg and flapped his arms to wish me goodnight, like an angel. I laughed and soon followed him to bed.
At 0230 hours Mon the 19th, he woke me and said he was having a horrible headache. He was himself. As I got up to dress, he became agitated and wild and ran around collecting ptctures of our lives and children and pets. His eyes would not see me, he could not hear me,
He died on the AM of the 20th.
What should I have done ? Things moved so slow, but his disease did not. !5 days to make a diagnosis and 19 days to start treatment, then dead. Should i have taken him to a brain cancer center? Do they move faster there? I feel like i and the medical system failed my husband.