Pre-Op Day at Madison

Tuesday, January 27, 2009: What a long day! It was our big pre-op day today at UW-Madison. We started in the ENT clinic for pre and post-op instructions. We were then taken to another office to fill out a bunch of paperwork on Ron's previous history. Then down to the lab for blood work, then to Admissions to pre-register for next Tuesday. We then met with the Surgeon and his team. He went over the surgical plan again and asked if we had questions. He had mentioned that the last PET scan showed some active nodes in the right neck, so he will be taking those. I asked about his left neck, since the Radiation Oncologist we saw up there a couple of weeks ago had felt something concerning in his left neck also. The Surgeon wasn't aware of that, so he sent us to get a CT scan done. All in all, we were there from 8:30 a.m. to just after 3 p.m. We also got a copy of the letter that the Dr. wrote for the insurance company so they could accept the entire claim as in-network. We are receiving conflicting reports as to whether the insurance company has received the letter, so I am going to personally fax it to them myself tomorrow. We are also giving a copy of the letter to Ron's insurance agent, so he can also make sure the company gets it. I tell you, it is always something. There is so much to try to keep track of. I'm so thankful that we are at UW now, since we have a liason person to help me with all of these problems that pop up. Our next appointment is on Thursday, where we will meet with Ron's Medical Oncologist. We would like to discuss further Chemo treatment. If Ron is willing to go through this horrible surgery, I want them to throw the "big guns" at him afterwards, so we will know we tried everything. More updates after that, and don't forget to come Saturday night to wish him well.
By the way, this is the official procedure to be done: Composite resection mandible and tongue, scapular flap reconstruction, excision of submandibular gland, and tracheotomy. Quite a mouthful, isn't it? No pun intended.

UW-Madison is our answer!

Tuesday, January 13, 2009: Our big day at UW-Madison. The weather was horrible! We had driven to Madison the afternoon before and spent the night with our daughter and son-in-law because the weather sounded bad. When we woke up, it was freezing cold, snowing and blowing all over. Our son-in-law drove our car, and with the help from my new TomTom, we made it. The minute we walked in, I just had a feeling about this place. It was beautiful but huge! I thought I had just gotten St. Luke's down, and now I will have to try to navigate another huge hospital complex. We got checked in right away, and got good directions for the first office. We made it to the right place, and of course I had a 2 page form to fill out. I had barely started when we were called in to the office. We went in and sat down, and met our future "liason", the Head and Neck Cancer Coordinator. She was very nice, and sat and talked with us for quite a while and asked a lot of questions about Ron's previous treatments. She gave us a guidebook that we will bring with us every time we come here, which will be helpful because up until now, I have used datebooks for everything, so now I carry a total of 4. It will be easier to carry just one.
The coordinator then left and the Dr. came in with his assistant. What a nice man! I feel like I should not use his name on this blog but I wish I could. He immediately put us at ease. He said that he had read through all of Ron's records, and felt that this was a last-ditch effort, which we knew already. He does feel, however, that Ron's chances are good with an extensive second salvage surgery. He said that he would not use hip bone as this was quite a painful procedure. He talked with Ron about what Ron wanted to do afterwards. Ron said that he wanted to be able to ride his Harley and shoot guns, including shotguns. The Dr. said that in that case, he was not going to use any bone from Ron at all. He will use metal plates to replace the mandible. He had thought that he would use part of the scapula, but since Ron wants to shoot guns, that would have an impact on his ability to handle the recoil. He will also replace Ron's tongue using abdominal muscle. He explained that this would give him the most favorable outcome in using his tongue again, for speech and for eating. He did say that Ron would probably never eat steak again, but he will be able to eat most things. Ron will have to have a PEG tube again of course, but the Dr. said that hopefully, it would not have to be permanent. The Dr. will have to use a lot of tissue to rebuild what is lost. This cancer is quite large, so a lot will have to be removed. He is hoping not to have to remove the entire tongue, just a portion of it. Ron's speech may be quite different, but he should be able to be understood. He will definately have speech and swallowing therapy to help him get used to his new tongue. The Dr. also explained that radiation would not be an option for Ron. The tumor is too large to do any Cyberknife treatments beforehand, and he has already had his limit of radiation. He does agree that Chemotherapy is necessary after the surgery, and after Ron has healed somewhat. I am hoping that we can do the Chemotherapy locally, with Ron's Medical Oncologist that he has seen for the past three years. The Dr. also used a scope that went down Ron's nose to view his larynx and throat area. He said everything looked great, and he feels that Ron will not have to have a permanent trach. He will have to have a temporary one placed during the surgery again for possible swelling. The Dr. spent at least an hour with us and answered all of our questions. I can't explain the immense confidence that I felt immediately in this man. I truly believe that he is Ron's best option for the best possible outcome.
After this appointment, we had a little while before the next one, so we were shown to the cafeteria area to get drinks. We then went to the next office to meet with the Radiation Oncologist. Again, I had just started filling out the form when we were called in. The RO came in and he was very nice also. He went through Ron's entire history, and explained that he thought Ron's best shot was the surgery. He didn't feel the Cyberknife would work for Ron because the cancer is so large. The Cyberknife is a much better option for one small tumor. Also the Cyberknife therapy would affect the surgical option. So this appointment was kind of unneccessary, but the RO was very nice and he also spent a lot of time with us explaining everything. All in all, we left the hospital feeling very hopeful for the future.
One problem did come up that day. We found out that UW-Madison was "out of network" for Ron's insurance. Wow, I was not expecting that. I didn't even think to call ahead of time to check. This didn't mean that they wouldn't pay at all, but they would pay less than normal. Now, for most claims this wouldn't be a big deal, but we are talking about a huge surgery and a lengthy hospital stay. In other words, a big deal. We called Ron's agent, and he said that he would call the company to see if anything could be done. He called back and said that if we could have the Dr. write a letter explaining why Ron needed his expertise, we would have a better chance that they would accept the claim as normal. I called our liason and told her what we needed. She said that she would work with us and help us as much as possible.
Friday, January 16. The Doctor called Ron today and said that his surgery would be on February 2. The surgery will take all day, so he is his only patient that day. I am wondering just how long it will be because the last one was 9 hours and that was with two doctors! He also said that he will be in the hospital for 7-14 days. Ron got a call later to schedule his pre-op appointments. They will be on January 27. First he will have his pre-op tests done, and then we will meet with the surgeon again so he can explain in more detail what the surgery will involve. I think I will call Ron's Oncologist next week and make an appointment with him to let him know what we have decided to do. He has been with Ron every step of the way for the past three years, and we like and respect him very much and would like to continue with him for Chemo. We are now in waiting mode again, but very much looking forward to the future!

Second Opinion Coming...

Saturday, January 10: Just a quick update. We had a wonderful peaceful, holiday in Missouri. We always enjoy it there so much. It was so nice to see our niece and her husband and their adorable 4 little boys. We also got to spend time with our nephew. He and our son were always very close as boys, so it was nice that they got to see each other again. We ate tons of wonderful food and played Trivial Pursuit almost every day. I even talked Ron into staying an extra two days. I knew that we wouldn't have much to look forward to once we got home, so I was so glad to stay. The weekend after we got home, we had a wonderful visit with some old friends of Ron's family. While speaking with them, they really encouraged us to get a second opinion up at UW-Madison. I had been thinking that I should call them, so that lit the fire. I called them on Monday from work, explained Ron's situation and they were very accommodating. We have an appointment with an ENT Surgeon there on the 13, and then an appointment with a Radiation Oncologist. We are so hopeful that they will have other options for us to consider.

The surgeon that we met with for the second salvage surgery didn't call Ron until yesterday. He apologized for the delay, but was very happy to hear that Ron was going up to Madison. He has worked with the team up there before, and thought that they really might have some other options for Ron to consider. If we get up there and they tell Ron that the surgery is his best option, we will probably come back and have the surgeon at St. Luke's do this one also. I am so anxious for this to be some new miracle solution. Yesterday we also went to the farm's long-time lawyer to get things in place just in case. That was rough. Ron's brother has been so good to him, and is making sure his family will be taken care of.

I also have to thank the High School I work for. They have been so good to me throughout the past three years. I have been there now for 10 years, and I love it so much. I really enjoy going to work because the kids make sure that my mind is not on our troubles at home. They make me laugh every day. The Administrator even came down to the Library to tell me not to worry about missing work, even if I have to take a leave. They are behind me during this difficult time. My co-workers have been a wonderful support system. And a special shout-out to some of my favorite "kids", Brad, Pablo, both Steves, Matt, Kelly, Taylor, Kate, Ally (and Marty), Sam, Ryan, and many others. You all make my day! I will update after our appointments on Tuesday.

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!