In Honor of My Husband, Ron

Sunday, December 21, 2008

Cancer times three...

Monday, December 8. Ron had his biopsy surgery today. He sailed through as always. The surgeon came out to talk to me, and said that there were actually two spots to biopsy, not one. One on the floor of the mouth, and another area on his right tongue, where the first cancer appeared. So that was a surprise. I didn't expect two areas. He could not do frozen sections right away as the area had been previously radiated, so he said that we should know in a day or two. Ron got back home and took it pretty easy for the next couple of days. It was again difficult for him to eat, as his mouth was pretty sore, so he stuck to liquids and ended up losing 3 pounds. The surgeon called on Thursday and said that only one biopsy had come in. The biopsy from the tongue was positive for SCC again.

Monday, December 15. We had an appointment with the Oncologist today. As I have said before, he is kind of bleak in his predictions for Ron's success. Well, this visit kind of floored us. He started by saying that if we do nothing, Ron would be gone in three months. Ron and I looked at each other in amazement. I'm sorry, but I just don't think he is anywhere near that point. He has no mets to distant areas. It is all located in his mouth. He then said that with treatment we would have at least a year. He wants to start Erbitux this week. If the chemo fails, we will be looking at entering a clinical trial. He mentioned Chicago, but if we have to do a trial, we are going to go up to UW-Madison. I have heard great things about them, and am still wondering if we should send his file up there and see if they would be more optimistic about his future. So of course, we left there feeling quite devastated again.

Tuesday, December 16. The Tumor Board met this morning to discuss Ron's case and give their recommendations. We had an appointment with his original surgeon. He came in and said "Well, what's going on? I heard they are calling a Tumor Board meeting on Tuesday." I said that was this morning, and he said "Oh no, I missed it. They even paged me, but I was in my office and forgot all about it." I smacked his leg with my little notebook and told him we were counting on him to give us the scoop on what the plan was. So he was no help with that, but he did start talking about using Cyberknife treatment, since Ron cannot have traditional radiation anymore. He wants to send us back to his brother, the surgeon who did Ron's first Salvage Surgery in September to see what he thinks. I wasn't thrilled about going back to him, but if he can offer a good option, I am happy to give him another shot. We left this appointment feeling very hopeful about the Cyberknife.

Wednesday, December 17. Follow up meeting with the Oncologist. Oy. Another downer. He came in and said that the Tumor Board discussed every possible option, and the concensus was that Ron needs another salvage surgery, along with Erbitux. The second biopsy from the floor of the mouth was also positive for SCC. Now, he had already told us a few visits ago, that no more surgery would help! I am very concerned about what this surgery would entail. I mean, they may suggest a total glossectomy (taking out the entire tongue), or placing a permanent trach, or even that he would no longer be able to eat except through a PEG tube. Ron said if that was the case, he would not want to do it. I told him that he has to be in charge from now on, not just blindly do whatever the doctors tell him. He has to decide what he can live with, and what he cannot. The Oncologist also said that he did not think the Cyberknife would be an option, but I had already made an appointment with an RO up at St. Luke's to discuss the option, so we are at least going to find out what he thinks. After we meet with the RO on the 22nd, we then have an appointment with the salvage surgeon. I will be very interested in what he has to say. If he is not being clear or not explaining exactly what will happen to Ron, I am going to insist he tell Ron what the outcomes could be. Whatever Ron is willing to do, I will support him in every way, but I want him to be clear about what he will and will not accept.
So we have the two appointments on Monday, then two on Tuesday, just blood work and an appointment with his general doctor for a physical, to make sure he can get a Port placed on the 30th. Oh, I forgot to mention, the Oncologist said that for now we are to "sit tight" on chemo! That upset me also, because the last visit he told us, this cancer is so aggressive and growing so quickly, we must start chemo as soon as possible. Now we are to wait until we find out what the surgeon thinks he can do. After these two rough days this week, we are then driving to my sister's in MO. again. We have such fun there, and we really need to leave all of this behind for a while. I will update with the suggestions we get tomorrow. Please pray that the Cyberknife is a possibility for Ron.

1 comment:

Anonymous said...

First let me say that I love this blogspot. I come here often to read (and reread) our long time friend's struggle with cancer. I just finished talking with him and he is such a brave, optimistic person! I want you to know that we think of you often and will be praying for all of you.
Take Care, Connie