Gary and I were both just semi retired, ready to blast off with fun and travel, and great friends and family, when the evil news was received. Gary had an extensive, right parietal, temporal and frontal lobe GBM tumour. That was April of '07. I keep a picture in my head, of the guy in the pic, the one I've known for 40 plus years, and although he is now passed on, we always managed to find joy in each day, anyway we could.
Gary had debulking surgery, resulting in left side paralysis, inpatient and outpatient rehab, radiation and daily temodar, then 12 months of 5/23 temodar cycles. Gary had a DVT in his first year and remained on blood thinners for the duration of his survival.
Although we missed our old life, we stayed grateful to have 'life' at all. We were feeling like lottery winners at 3 1/2 years of survival until the MRI on Nov 5, 2010 indicated a new recurrence. So then we went back into the fight again. The new attack included stereotactic radiosurgery, specifically cyberknife x 5 days, with temozolomide 21 days on and 7 days off for 6 cycles. The problem with that regimen turned out to be that it took a greater toll on him than the old 5/23 had. So we went back to the 5/23 regimen just to try to keep the tumour at bay long enough to qualify for a drug trial.
I knew that our luck would run out eventually, but we didn't give up until we were finally told in May 2011 that the tumour was still not shrinking, and the condition that Gary was in, would not improve. It appeared that the tumour was taking over his motor strip function! By that time, he was no longer able to walk or do his most basic self care. He was hospitalized for assessment for one week, and then sent home to a hospital bed, with all treatment stopped, and total care! Other people have beaten the recurrence multiple times and we never wanted to give up, but the chemo was deemed to be a losing battle, and he was in no condition any longer to qualify for a drug trial. We expected the tumor to grow aggressively. Well, we couldn't have been more wrong! He was still bedridden and unchanged by Dec '11 but after that 5 mths, I was worn out. I was having my own breakdowns, and at Gary's request, he was placed in a hospice care facility. It was a good one. He was cared for like a king, and he was there for 7 months before he passed away on July 2nd of 2012. So he had a whole year of being bedridden. He could only move his head and his right arm. He never not lost any ability to think or speak, although his continued decline in physical strength made verbalizing more difficult. What I know now, in hindsight, is that the chemo was not effective the second time around, but the cyberknife radiation did kill the beastly tumor, and also killed his motor strip.
So 'yes' this disease can be beaten, and Gary was a 5 year survivor, and we made his quality of life as good as we could, but depending on where a tumor is located, and what your personal thoughts are about quality of life, I suggest that you be careful what you wish for....you might just get it. Gary always said he didn't regret anything. I would go back myself and refuse the 2nd radiation. Even though it was stereotactic, it finished off what was left of his motor strip.
That's our story, we will always be in love, and I am recovered from the 4 years of physically caring for him. But the heartbreak goes on. How ironic that a man with brain cancer had nothing left of himself at the end but his mind!
Maybe our story will offer some guidance to someone who is making decisions right now about treatments. My hope goes with you. Donna L