As some of you may recall, my dear friend Paul was diagnosed with SSC in May. He had 2/3 of his tongue removed and a neck dissection. The nodes inhis neck came back negative so we were cautiously optimistic. After surgery he had 30 radiatin treatments. That was worse than the surgery. The build up of fluids in his neck was horrible. Radiaton was 100 times worse than the surgery. Six weeks after radiation ended a lump appreared onhis neck on the same side as his dissection. We, and his doctor thought it was an infection. We took Paul in and they did a biopsy only to learn that six weeks after radiation ended the cancer ws back and had grown to a point where another neck dissection was not possible without significant danger. Paul was then scheduled for another 35 radiation treatments ANd chemotherapy at the same itme. The lum p on the outside of his neck went away but now w'ere so scare that when we see the doctor on Friday, December 5th they are going to tell us tha tin spite of the good appearance outside, that the tumor is still there and that a neck dissection is not possible and that it's terminal. We are so scared we don't know where to turn. I've asked for a referral to MD Anderson in Orlando just in case they give us the news we will dread. I simply don't know what I'll do, what I'll say to Paul, how I'll handle a horrible outlook. I keep asking myself how far I push Paul to resolve this. He just seems to go along with it. He's lost 60 pounds and now uses a PEG to eat. that was a good thing. He has not gained weight but he hasn't lost either. We are under the impression that if sugery is not possible that our options have run out. I have talked to doctors from all over the country about his care and really have gotten no where. Everyone tells me that MD Anderson is good. One doctor told me that Gene therapy is possible along with differnet combinations of chemotherapy.
As some of you may recall, Paul's mother has OCD as does Paul. His father has Alzheimer's and his sister and brother are useless so I'm his primary care giver. I don't mind it at all but I'm terrified, absolutely terrified.
Paul sits in his house alone looking at his Christmas tree. I've known him for so long that I know that he thinks this will be his last Christmas. At my birthday in October I kept his card because I'm so scared it will be the last card I get from him. Paul is scared to sleep at night because he thinks he's going to die in his sleep. He can't get rid of his neck sacretions and he often chokes on it. I worry about that too.
The last few days I've been trying to figure out how I'll handle bad news on Friday. I know you're all going to tell me that perhaps it won't be bad but I really don't think so. The most recent CT scan showed nothing on his brain or in his lungs so I guess that's good. We've been told that if it comes back in his lungs or brain that this would be the beginning of the end.
The last time we went to the surgeon and he told us it was BAD and discouraging I completely fell apart. Paul was in such shock he didn't react. He called my partner and told him I was a wreck. Actually he took it better than I did. I just don't know what to do, say, how to not cry in front of him. As we approach Friday all I do is think and cry because I can feel it in my heart that it's not going to be good. I think Paul knows it too.
I stopped over there today and he was so white and just stares into space. He handed me an ornament and said that he wanted to keep our tradition alive. I mentioned to him that I was going to Chicago this weekend and had never been there. He told me, "I'll never get to go there". I asked what he meant and he said, You know. I get into my car, pull away from his house and burst into tears.
I feel totally defeated. I've tried to be brave through all his chemotherapy, 65 total radiation treatments and countless other tests but my bravery is fading. I'm weak right now and don't know how to help him.
He hasn't been able to work but I've been paying him his regular wages. My employees who are Paul's co-workers are holding a benefit for Paul to help him with other expenses he has. I think that Paul feels that he might not make it that long. Another organization told me that based on what I told them that they gave him six months or less. they weren't doctors but I was still devastated to say the least.
Please help me cope with this so I can be strong for Paul on Friday. If they can't do surgery to remove anyting that is left, I just don't know what we'll do. Paul will be defeated. I will be crushed. Please help us..
Brian write back to
[email protected]. Please help us
