Thank you so much for your response and good wishes! I am so glad to hear from people who have been through this also. Although, I do have to say that it is a little scary to see so many recurrences. I have really been thinking that I had gotten through the worst of it. And because I didn't have any of the risk factors, had been reassured about recurrence.

I'm so happy to hear about Dr. W. At HUP! I do feel confident in him, but it's just so scary knowing so little about this type of cancer. You've really put me at ease about the care I'm receiving and the PET scan.

We have friends/family in the Plilly area so we went with their suggestion of HUP. They work in the medical field and have many friends from the area who they've referred there. It was really my friend (who is also my sister in law--we married brothers) who referred us there through her contacts from referrals for cardiac patients. I have thought about John Hopkins also. Will consider in future if necessary.

Thank you for the info about OCF. I will think about it and check with my husband how far the events are. It would be great for us to meet with others in similar situations. My husband could certainly use some support also.

So now I'm thinking that the sensations in the tongue and increased discomfort I'm experiencing (because feeling is coming back? Due to numbness decreases?) May be permanent?
These are the things I'd like to know more about. I guess I need to look around the site more.

I was a little depressed today. But I kept thinking, what is really different today from yesterday? Nothing but my state of mind and attitude. So, life goes on. Still afraid of what is in store for me in the future. Hoping to put it further back in my mind soon and get back my good mojo. Sorry if I share too much, need to get it out. Thank you again.