Vickie: Hi. Thank you so much for finding me and replying. If it is possible, I "feel better" after reading your post and knowing that your husband and you made it through this treatment that we have just begun, not to mention the surgeries and complications your husband (and you) has suffered through. You must both be very strong. I hope that I can be as well, but even more, wish that I could take some of the pain for him, even for a little while, so he could rest.
My husband completed his first week of treatments yesterday--chemo (Cisplatin) Monday and radiation Monday through Friday. It has not gone well. We thought we should try the amifostine (Ethyol) to try to preserve some saliva glands, although both physicians said that they had not seen anyone have any success with it as they could not tolerate it, but my husband could try if he wanted. They didn't have any on Monday, the first day of his treatments, but ordered it and he took it by IV on Tuesday and it made him so very sick. I am the one who suggested it and now I feel so bad. My husband was able to eat Monday night after having had chemo (Cisplatin)and I was encouraged by that, but after receiving the amifostine on Tuesday, hasn't eaten since! He has gotten upset with me for trying to encourage him to eat. Now, even though we knew he would eventually have to get it, he is having the feeding tube first thing this Monday. I try not to expect things, but really didn't think it would be this bad this soon, and I realize that he hasn't even begun to get to the worse part yet - God help us to get through this, as impossible as it seems - but thank you so much for letting me know it is possible to make it through the treatments, especially knowing that your husband has a very similar diagnosis as my husband. Jesse has not had any lymph nodes removed, as they said it would not be possible without shrinking the mass first, as it is over 8 cm. I worry all the time that the doctors are doing the right thing, as I detect that they (the radiation oncologist and the medical oncologist, and the ENT surgeon) are not "on the same page" sometime. But what can we do, we have started treatments, and are at their mercy. I haven't read a whole lot of posts, as I am new to this, but a lot of posters talk about "teams" and although I know Jesse's doctors are sharing information through charts and so forth, I don't believe they are meeting and discussing his case. And with the rarity of an unknown primary, it seems as if there should be more of a concerted effort. I do ask a lot of questions, but I don't want to irritate the doctors by acting like I know more than them, when I am quoting things that I have read on the internet, etc.
I don't even like to close my eyes anymore, because when I open them, for just the briefest second, I feel like I am in my prior life.

I can only make each day a goal however, and I guess sometimes I will have to make each minute a goal.
Thank you and everyone for your words of encouragement.
Michele