We found out December 10, 2010 about my husband tumors. It it has been almost 10 months of ups and downs. My husband is 48 this month. We found out because my husband was having trouble sleeping. We went to the doctor thinking he was under stress at work. They told us he has several tumors.
We married Jan. 3, 2011. He went through very aggressive treatment for 6 weeks. They used radiation and Temadar together. After that they used Temadar, steroids and Avastin together every two weeks and then every month. The tumors did shrink. We had a scare from blood clots forming in the lungs and he had to take a shot twice a day at first to one a day now of blood thinner in his stomach. This month, September 2011, is the first month he will get a break from Avastin. We also won't receive another MRI until the end of October. He has been weaned off the steroids. They are still keeping an eye on a spot in the back of his brain but the doc. said we will back off on some treatment and "see what happens". The cancer has effected his sleep, balance, speech, memory, etc.... of course he can no longer work or drive or most of the things he did before (go to gym, ride bikes, hike, fish, hunt, etc.) and he has had a few falls. For now his treatment continues to work for him. Things seemed so terrible during treatment but he is doing a lot better now. He still has balance, speech and memory issues but it has much improved. We get out and do more. Some days he has a lot of energy and he mows the lawn with his riding mower. I even drove us up north this last spring for his beloved mushroom hunting. He sat in his wheelchair and told me where to find the mushrooms. He walks now sometimes with the help of a cane.
He can dress himself again.
I just joined this discussion group to feel that my husband and I are not alone and to vent I guess. This is the hardest thing for anyone to ever go through. I mean for the patient as well as the caregiver. I wouldn't wish it on my worst enemy. I know things are going well for now with my husband but since the rug has been pulled out from under us it seems the rest of our lives is falling apart also. I am wondering if anyone out there has a spouse that can't be left alone and what they do for work to bring money into the home. Before this my husband worked, I was laid off and pursuing an education. Now we have had to get him on disability and cash out our 401K's to live on and pay bills. I am afraid we will file for bankruptcy very soon. My worries have maxed out my own stress levels and some days I just walk around crying. I don't want to loose my husband. He is the best thing to ever happen to me. I don't know what may happen. I do not get much help from family and his lives on the other side of the country. I am up for any suggestions. I need a job just to pay for his Cobra payments. I am afraid of his care once we have to get on Medicaide. Is anyone under similar circumstance?
All I know here is that we try to keep it positive as best as we can and know that everything is in God's hands.