Hey Erik,
As a caregiver, I know how frightened your wife must be, too. I was so overwhelmed when we got the diagnosis and only had days to make decisions, that I just cried and cried. But then you get the strength (I know ours was from God and other wonderful church people and family), that we got busy making decisions, getting the surgery, etc. Dan had a canker sore on his tongue for quite a while before he went to a doc and then was put on multiple antibiotics before his actual diagnosis. We had never even heard of tongue cancer. He had clear nodes from modified neck dissections so no rad in the beginning. But within three months had it back in his neck. We were only with a local oral surgeon, but since the mets ended up at the University of MD and they have a tumor board. We feel in much better hands now, so I do think it is important to be your own advocate and get to where there is a tumor board and a team of doctors to agree and treat. The trach was hard, but I think harder on me trying to understand him...we got a white erase board for communicating and that helped once Dan was able to write a little clearly. The morphine made his writing chicken stratch for a little while. My hubby is 48 and we have two boys, 24 and 19. We have never been sick except for the occasional cold or sore throat. That's why the cancer sore never made us think of anything, especially like cancer.
We have had help with meals and Dan has had a PEG tube for about 4 weeks. Our insurance wouldn't cover the BoostPlus he needed (and it's pretty expensive), but our Bible study had a BoostPlus party for us and brought cases! There's always a way, plus ask all kind of questions, becaause somethings can be paid for by insurance or assistance, but they never usually give you all the information....just ask and ask and ask!!!
Take care, will pray for you and your family, and feel free to email anytime. My husband is on disability and I just got laid off. Sometimes life hits us hard, but God is there and able to help us deal!!
Take care,
Debbie
