Dec 27, 2012 - 12:56 pm
Hi, my name is Tonya and I wanted to introduce myself. In advance, sorry if this starts to sound like a poor me post. It's not meant that way, I just don't have anyone around me that really understands.
I am a 37 year old mother of 4 children ages 5, 7, 12 and 15. My 12 year old is ADHD diabetic so he is a handful by himself. My hubby was diagnosed last year at age 36 with Rhabdomyosarcoma in the sinus region on the left side which wrapped around his left eye and went up to his brain. His sarcoma was inoperable because of location. They told us they would treat with radiation and chemo and that we could expect him to live 2-5 years. He went through radiation and chemo but they stopped his chemo 4 months early because it gave him severe nerve damage. When I voiced my opinion that I'd rather give him meds for nerve pain instead of having him die they told us that he'd be spending the rest of his life in the hospital which of course noone wants.
Now that he's been off chemo since the end of May (his last treatment) I figured he'd start feeling better. Not so. He feels crappy all the time (some days a little less than others like today for instance), has a ton of nerve pain that medications help only a little with, major depression and his mind seems to be going. He forgets EVERYTHING, names of familiar objects, what we are doing, not to her face but he even forgot one of my daughters names and she is a giant daddy's girl.
He does not show any cancer on his scans, he's had 2 so far. Is this what remission (they don't call it remission yet) is like? Is this the best he is ever going to be? He missed my daughters conformation and her christmas womens choir concert which really hurt her. How do I deal with stuff like that and help the kids?
I'm trying to do my best for my hubby, raise 4 children, help my son with his diabetes and adhd, keep everyone steered toward positive activities and support my children with the things they like to do, run a buisness and find me time. Not to mention one of my children has experimented with alchohol and marijwana. It's getting overwhelming. Is there anyone out there who can relate? I'm the positive one in the relationship and it is getting very hard.