My husband was diagnosed with GBM grade IV on 9/9/11. He was 49, and a marathon runner, so was in very good condition prior to this. His main tumor is located in his brain stem. So - not operable. the diagnosis, he went through 7 weeks of radiation. At the same time, they started him on temodar daily. After about six weeks, he started Avastin by infusion twice a month. They switched the temodar to a 5 day cycle every 28 days after his platelet levels fell. So, he continues with the temodar and Avastin. He had 10 months of stable MRIs. Unfortunately, there was a new lesion (tumor) on his MRI this week.
His quality of life has been okay. After the initial biopsy, he experienced many physical changes, and the decadron caused a lot of negative side effects - a necessary evil. He was able to work a little from home, but no driving or much walking. He suffered a loss in his field of vision beginning about 2 months ago (6/12), because of the radiation treatments - no vision on the left side. Thankfully, his cognitive skills are mostly intact - some odd personality changes.
Update 10/2/12 - they found another lesion on his mri in August. So, a shot of radiation and we cross our fingers. He had another mri about 4 weeks later, but it was too soon to tell, so we will wait until later this month. More personality changes. He can't concentrate, but he tends to fixate on things - his computer, ideas that come into his head, etc. He has been really really down the last few days, and really fatigued.Not sure if it's the tumor or the heat (it's been hot) or depression.
My husband passed away on Sunday the 9th. His tumor location in the brainstem, affected his ability to swallow and he contracted aspiration pneumonia. Over the course of a month, he would improve because of the antibiotics, and then aspirate again and relapse. It was so horrible to watch him trying to ignore the illness and keep trying to get up and get stronger. He was in the hospital when they told us that there was no hope.
We brought him home where he wanted to be, and he waited for our oldest son to get home from college five hours away. There were a lot of people around that morning - visiting nurses and people stopping by. Finally, everyone left except for our two sons and me. We were sitting around his bed telling him we would be okay and that we would always take care of each other. I told him he was the best friend I would ever have. Then we started talking about family stories and the best skiing day ever. One of our sons said, "I don't think he's breathing." It was just like that, peaceful and surrounded by love.
I am still in a daze. I had fifteen months warning, but I still wasn't ready. I'm so afraid of the waves of grief that keep washing over me. I'm afraid if I start crying I won't be able to stop. It's hard to imagine the rest of my life without him. I suppose that's why we should take it one day at a time. Sigh. I hate this effing disease!!