In Honor of My Husband, Ron

Wednesday, December 24, 2008

Update on the future...

Monday, December 22: We had two appointments today. The first was with the RO up at St. Luke's. We were pleasantly surprised that he said the Cyberknife would be an option for Ron. He told Ron that his best chance for survival would be a second salvage surgery. His odds were 80% for the surgery. If he chooses not to do the surgery, he could have 5 Cyberknife treatments. Those odds he placed at about 60%. Ron's third option would be more chemo and IMRT radiation, with about 30% chance of survival. He was not talking about a cure, because since this is Ron's third bout with Oral cancer in three years, it most likely will come back, but we just can't say when. It could be right away again, or we could have a few years cancer free. We were offered a tour to see the Cyberknife and how it works, but we were very close to our other appointment time, so we had to leave. We left there feeling much more positive.

Our second appointment was with the surgeon who did Ron's last surgery. If you have been reading this blog for a while, you know that I was not really fond of that surgeon, but I must say he was much nicer this time. This was our difficult appointment. He explained a second salvage surgery would be much more aggressive. Basically, the entire lower right quarter of Ron's mouth would be removed and rebuilt, using hip bone, a metal plate, and tissue from the hip area. He also said that he would have to remove at least half of what remains of Ron's tongue. This cancer is below his tongue, on the floor of the mouth, and it wraps around the right side of the tongue. There is also the possibility that he would have to remove the tongue completely, called a glossectomy. This brought up the discussion of "quality vs. quantity". That is where we are now. Ron must decide what he is willing to live with. I told him that I would be there no matter what. If he has to have a trach and a PEG tube for the rest of his life, I have no problem taking care of them. I think what is bothering Ron the most is the chance that he would not be able to eat again, especially if they remove his tongue. The surgeon did say that he had one patient who could eat some things after their glossectomy. I told Ron that he would be the second! If anyone could do it, he could. And he hates the PEG tube! He really does not want one again, but I told him that we could get a different kind, one that would not irritate so much and get caught on his clothing.

So this is where we are right now. We ended up cancelling the other appointments to get him ready for the PORT, since chemo will not start until after another surgery and his recovery from that. The surgeon is going to consult with the plastic surgeon and the Oncologist and get back to Ron with a surgical plan, and he can then decide to go for it or not. The surgery would be within the next two weeks. We are happy that we at least have the option of the Cyberknife. I really believe that Ron will go for the surgery again, though. He just wants to live, and that will give him the best shot. It will be a different life, but it will be LIFE and that is all that matters to us. We are headed down to Missouri tomorrow for the holidays with my sister's family again. We are leaving all of this cancer stuff behind for a few days! We wish all of you a very Merry Christmas and Happy New Year! May 2009 be kind to us all.

Also, thank you so much for the comments. We really enjoy and appreciate them!

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.

Tuesday, December 2, 2008

Cautiously optimistic...

Tuesday, December 2, 2008. It's Ron's 56th birthday today! Guess what he got to do? Have a colonoscopy. What a lucky guy! We were given the choice between having it on his birthday or the day after, in which case he would have been doing the "prep" on his birthday, and as you all probably know, that is the worst part of the procedure. At least now he can have dinner and have a piece of apple pie (his favorite) for dessert tonight. He has gained another 5 pounds since my last post! We went down to Missouri to see my sister and her family over Thanksgiving and she stuffed him like a Christmas goose. Now to catch everyone up on what's been happening since the last post. On Tuesday, November 18, Ron saw the surgeon. He could not see any areas of concern, and his feeling was that the PET scan was done too soon after surgery to be accurate. He told Ron to go ahead and have the other tests done and come back to see him after that. Our next appointment was on November 21st with a Gastroenterologist, to take Ron's history and schedule the colonoscopy. He also did not think there would be cancer found. On November 25th, Ron had his Thyroid scan done.

Wednesday, November 26th was our big meeting with the Radiation Oncologist. It was good to see him again, after 2 years. He gave Ron a thorough exam, and did find a small nodule under his tongue, and had me come and feel where it was. That was the only area that concerned him. He said that he would not agree to re-radiate until we were sure the cancer was back. He told Ron to go back to the surgeon so he could do a biopsy of the area. Only with positive results would he agree to radiation, and he mentioned that it might be a different type than IMRT. If the results of the biopsy are negative, he wants to wait and repeat the PET in January. He also mentioned that Ron has Perineural Invasion, or PNI. I didn't ask anything about it at the time, but have started to search to find out what that means. From what I understand so far, it acts as a scaffold for the cancer cells to spread. We left the RO's office feeling much more positive about the future. There were now three doctors that thought the PET results would be inaccurate so soon after the surgery. Oh, how we hope they are right. Right after the appointment we drove for 8 hours down to my sister's, and had a wonderful time visiting with all of them until Sunday, the 30th, when we drove back home.

Monday, December 1. Ron had an appointment with the chemotherapy doctor today. He said the Thyroid scan was negative. Thank God! One less area to worry about. He agreed with the RO that the surgeon should biopsy the spot under the tongue. Right after this appointment, we had an appointment with the surgeon. He agreed that the nodule was suspicious, but will not do a needle biopsy. Instead, Ron will have outpatient surgery next Monday, where the surgeon will remove the entire nodule if possible, to send to pathology. He said that he is not as certain that Ron cannot be cured of this cancer again, and said that he thought the oncologist was being too "bleak." We just don't know what to think at this point. Ron is very positive about being able to beat this again. I need to draw on some of that strength of his! Today, December 2, Ron had his colonoscopy. The doctor came out and told me that no cancer was found! He did have some small pockets of diverticulosis, but it shouldn't be a concern. Ron can't eat nuts or popcorn anymore anyway without teeth. He suggested more fiber, so I will pick up some supplements, since he also has trouble eating raw fruits and vegetables. So now we wait until Monday, the 8th, to find out the results of the biopsy. Keep praying, please. So far things are looking up!