How can this really be happening?

The surgeon told us that all the tumors cropping up on Scott's neck are indicative of what is probably going on beneath the surface. He will not operate again; more would just crop up and Scott would be put through more pain and have worse defects. He sent us to the chemo guy we had when first arriving at UVa, and we were really not prepared for the "we've done all we can do for you" speech yesterday, although we knew things have gotten very serious.

He pointed out that Scott had radiation to the same area that is now erupting with cancer; the cancer grew in spite of it.

Scott has had the known chemo drugs that work against head and neck cancer: cisplatin, 5-Fu, and docetaxil together and then methatrexate alone. They all failed.

Scott has had a total of three surgeries. Yet, the cancer persists.

I asked about going elsewhere, trying other types of therapies, getting in clinical trials; he said, basically, that's a shot in the dark. The cancer is advancing so fast that we should be considering Scott's quality of life. Experimental meds may make him weaker and sicker without affecting the cancer. So, he nudged toward "you gave it your best shot" but we couldn't hear of it. We asked about anything that might be effective at at least slowing the growth of the cancer, and he named three things (can't remember them now; Scott has them written down somewhere). One he was excluded from taking because of neuropathy (I think..whatever that is)and the another is a pill form of 5-FU (fluroeurocil) that Scott could take for 14 days, have a 7 day break, then determine if the meds are shrinking the tumors before deciding to proceed with more of that drug---or try another drug which I can't recall right now. In any case, he said these drugs would only have a 10-20% chance of slowing the cancer growth. I hate numbers, and was surprised he threw those out there. He was trying to be as delicately honest as possible, but man, that was a hard one to sit through. I sat and cried and asked questions and Scott wrote questions on his note pad and consoled ME.

I just cannot believe this is happening. I can see the tumors on Scott's neck/jaw increasing in number daily. This is happening too damn fast. We nearly begged for the 5-FU pill and got those filled before going to a hotel for the night; we drove home today.

I'm just so pissed off, so disappointed, and so hurt. I have not had enough time with this man. He is the love of my life and I only just found him...we've been married only 1 1/2 years. Now I'm supposed to watch this cancer slowly eat him alive??!!!! He is a teacher, for God's sake, he is loved by so many, he has taught me so much about life, he is the father my girls always wanted and needed, I have laughed more since knowing this man than in my whole life before him. He is so joyful and before the surgery, had the best laugh you could ever imagine hearing--the infectious kind that makes you laugh only because he's laughing. He could sing like Tom Waits or like Elton John. He can play Bach or Chopin like nobody's business. He studied at Harvard while YoYo Ma was there. Mary Hart was his student teacher in 11th grade in Sioux Falls. He was an only child but had a good upbringing, and he has always loved kids and wanted a family. When he found me and my girls it was such a blessing and we finally felt that we had our family completed. I had never known such an interesting, vivacious person before. We needed him as much as he needed us because previously we had each had lonely, difficult marriages.

I just found him, and now I'm supposed to watch him die.

It's just not right.

We have to decide if and when to go somewhere else to seek advice. In the meantime, he started the chemo pills today and we are hoping, still, for a miracle. He is so full of life and joy...I can't believe there is nothing to save him.

Christine