So my Ben has been on this path now for almost 2 years. May 1st this year he was doing his very first 6 months out MRI. They found this new patchy spot that they couldn't tell if it was from radiation (dead cells) or new tumor growth. So we decided to wait and watch for 6 weeks. He began to have seizures again after a whole year of seizure free. So he couldn't drive anymore again, and became very aggressively fighting me on this whole thing. I was making it all up. So they upped the MRI to 5 weeks, he went in and the patchy spot grew a lot. They were still telling us they didn't know what it was, we could either wait but symptoms could get worse OR get surgery. His 2nd brain surgery. We had planned this vacation for over two months and it was coming up that week after this news, we went anyway. Glad we did, but he spent a lot of time either sleeping or just keeping away from us. He was having seizures more often...although not hardcore ones. Once we got back we called to schedule surgery, we both knew what was coming. He was set up for July 5th, so he got to enjoy the fireworks which was awesome. Although he was feeling awful he pushed through it that day. Once he went in for surgery we got to see the latest MRI, the spot had grown 1 inch in size in month months time. It was in the temporal lobe and they could go in the same spot they had before so it didn't take as long. He was so sick but doing ok. He was angry and hurting for days. He regretted getting it done period. We have been home now and he's been sleeping a lot. He began Temodar this past week because the spot turned out to be a new tumor in a higher grade. He now has anaplastic astryocytoma grade 3, more aggressive etc. So Chemo in pill form is tried to slow down growth prolonging life.
Ben is now 34, taking 15 pills a day to live. He has been sleeping most days. Not showing any side effects from chemo as of yet. But they said it could take days. MRIs every 2 months.
Not sure how we feel. Not sure how he feels, still angry he can't drive. It's my fault of course. He lashes out at me a lot. And our now ten year old daughter. I've found comfort in friends but overall I'm so numb I don't feel alive anymore.
I've lost my husband but he sleeps in the spare room. I miss him every single day. I miss our life. Don't get me wrong I've accepted a lot. I let so much roll. I appreciate that he's still here with us. For those few good moments we still share. But they are becoming more rare these days.
I hate brain cancer and what it's done to my family and our life!