Thursday, January 29, 2009: We met with Ron's Medical Oncologist again today to bring him up to speed, but he was already up to speed! He had already spoken at length to the ENT Surgeon at UW-Madison about Ron. He said the surgeon asked him if he thought Ron could handle the surgery, and he said that if ANYONE could, it would definitely be Ron! He marvels at Ron's strength and attitude every time we see him. He also told us that the other doctors on the team do not feel that Ron is a candidate for chemotherapy after this surgery, but he wants to give him at least four treatments anyway. We said YES, you be a rebel! We definitely want it. We are trying to buy as much time as we can.
The Oncologist felt that the cancer would come back, possibly even within a few weeks or months again, but we know that we are doing what we have to do at this time. And Ron is clear that even knowing the cancer will come back, he is still willing to go through this huge life-changing surgery, so that is what we will do. The doctor did confirm that this cancer is poorly differentiated, which means it spreads much faster than "normal" cancer. We are also dealing with the Perineural Invasion, which increases the chance of recurrence. So the odds are against us, but we will fight it to the end!
UW-Madison had also mentioned to us that Ron should probably apply for disability, and we had never thought of that. He is retiring from farming now, and is selling his shares to his nephews to give us some income, but we will be applying for disability also. The MO agreed that it was a good idea, and didn't think Ron would have any problems qualifying. So we are gearing up for Monday. Ron has been deciding what he would like to eat on Sunday, and we finally decided I would make "Thanksgiving" dinner, turkey and all the trimmings. And it will be a day of thanks: thankful that Ron is still here, thankful that we have a wonderful family, and wonderful friends, and thankful that we found our wonderful team at UW-Madison.
We will also be thankful for seeing all of Ron's friends on Saturday night at the Zenda Tap! Don't forget to come and wish him well!
In Honor of My Husband, Ron
Thursday, January 29, 2009
Tuesday, January 27, 2009
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.
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.
Monday, January 26, 2009
Shhh...it's a secret!
Monday, January 26, 2009: I can safely write this here because Ron never reads my blog! (He wouldn't know how to get to it anyway). One of Ron's dearest friends came to see me at work today and wants to have a party for Ron this Saturday night. The party will be at the Zenda Tap (the scene of many of Ron's exploits in years gone by, and, um, some of mine) on January 31 around 7 or 7:30. There will be food and beer supplied. What else do you need? I am hoping that a lot of Ron's old friends come and give him a great send-off to surgery on the 2nd. We would love to see you friends from Belvidere, but it is quite a drive, so will understand if you don't make it. So any friends from the area reading this blog, please spread the word and come make Ron's day! Thanks so much to Marty and Nancy for arranging it! Ron will be so happy.
Friday, January 16, 2009
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!
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!
Tuesday, January 13, 2009
New layout...
Just a quick update to say that I've changed the layout of the blog; leave a comment if anything doesn't work right.
Also, (thank you Phil) you can now link to this blog at www.RonsWife.com!
Also, (thank you Phil) you can now link to this blog at www.RonsWife.com!
Sunday, January 11, 2009
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.
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.
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