Hello Everybody~I can't believe how long it's been since I visited this site. That is a good thing ironically!
Thanks to this site and so many people I've been able to go out and figure out what to do with my time here on earth! I started school going for business leaning towards graphic arts/marketing/PR. I found my passion because I started volunteering for a local cancer fundraiser soon after Ben's DX in 2010. wow can't believe that...anyways. I've gotten so much support and it feels so good helping others and using my time for good. I definitely had some seriously depressed down time. Went through trying anti depressants NOT FOR ME! Working on all the emotions that comes with watching your husband fight for his life. I also started home schooling our only 10 year old daughter this fall. Some people or teachers just cannot get what this little girl has been through and what she is continuing to go through with her dad and family. So this was for the better. We are officially now all 3 in the home and it's not perfect but it feels right to me right now!
So Ben is 2 years out from DX. After that first year of surgery, radiation, anti seizure meds/seizures...it was a long road to good days. He had a good run about a year longish. Until this last summer in May/June his tumor decided it was time to grow and become more aggressive. He now is battling a Grade 3 Astrocytoma. Had another surgery on July 5th. Right away on Temodar/chemotherapy. It's been 6 months almost. And I would say chemo or this disease has taken a lot from us. We are completely living alone in our own worlds. Ben really shut down after this last surgery and feels very defeated. He is very depressed, losing his license(although since he's been seizure free again for 6 months he can retest for his license just waiting on the state now). I've been doing a lot of soul searching and coming to the realization thanks to talking to other survivors that this is just how it's going to be. I've been hoping for so long that he will just snap out of it and be happy and appreciate this time with us. Instead I'm getting that he's pulling away. He's scared. He's not talking to hardly anybody and not about the hard stuff either. No one is going to force him. I think it's great that people can go through this and find a happy place a place of hope and positivity. Whatever the reasons are, Ben cannot do that. I've decided very recently that I won't be able to change him or how he's coping but I'm here when he needs me. Other than meeting all of his normal day to day needs. If he needs me I'm here.
I'm learned so much about myself and life since he was first DX. This foundation has been a huge part of helping me cope and move forward...as hard as it can be somedays. I will always grieve my previous life. Living in limbo is horrible. Making the best of it daily is exhausting. We have zero relationship. We maybe have a small short conversation once a day maybe. He lives in his room with the door closed. He did however come out for a few and watch the ball drop with us on New Years Eve. Maybe this means something? I am beginning to hate that word HOPE. You can only do it so much ya know before you start to get very cynical and full of anger. Just waiting for that news of it's growing again. We know it's coming just dont' know when.
Did I mention it's MRI day? Every 2 months now. Then next week chemo, which is every month. It usually takes a week or two after that for Ben to fully not feel like shit anymore. Temodar is a pill of chemo. Just as hardcore don't care what anyone says. It's tough on Ben I think because of the already 11 pills a day he takes. He has serious stomach problems daily. And when you take chemo at home you don't get that extra care from the Onc Nurses like you do when you are at the Dr. office getting it done. Things I don't think they think about! But he has 6 more months to go on chemo for now that is the plan. We will see.
Thank u Stupid Cancer for being here for me! Love you all!