Sunday, March 22, 2009: After our meeting with the Medical Oncologist up at UW-Madison, we have realized that it is best for Ron right now to not do chemo. She explained that, although it is important to be proactive from now on, chemo right now would do more harm than good to Ron. She agrees with our other MO that the cancer will most likely come back, probably fairly soon. She recommends getting a PET scan again in May and see where he is then. He is still healing from a huge life-altering surgery and still trying to get back to "normal", whatever that may be from now on. He has definitely been through the mill this time. He is tired much of the time, but cannot rest for long. He does a lot of wandering the house. It is so hard for him to sit around. Once in a while he has gone out and talked to the guys in the barn, or gone out to shoot guns, but he is so bored. His main nutrition right now is still through the PEG tube. He gets three meals a day using Carnation VHC and Ensure Plus mixed together. He is also swallowing better everyday. He still has a pocket in his mouth that gathers liquid and he has a lot of trouble trying to get that to the back of his throat. He usually has to spit out a small amount. He also is having a lot of drooling going on. He can't really tell when it is happening, because he can't feel it. His speech is much different also. We do understand him generally, but sometimes he has to repeat himself.
Another problem cropped up unexpectedly, too. When he got home from the hospital, he complained about a sore on his behind. I looked and thought it was a small bedsore from his being in the hospital so long. I kept it clean and covered and for a couple of weeks it didn't bother him anymore. Then one evening he told me that it was really hurting again, so I looked and I was shocked! It was actually a Pilonidal Abscess, which had burst open. I won't get too graphic here but it was a mess! So I called his general doctor the next morning and got him right in. The doctor thought that a surgeon should look at it, as it may have to be surgically drained. Just what he needed! He was put on antibiotics for ten days and we saw a surgeon the following week. Thankfully, he said that it looked really good now, and he felt that the worst part was over, just to keep it clean and not worry too much about it.
The next day, Tuesday, March 17, we saw Ron's original ENT surgeon from three years ago, just for a check-up. He was amazed at how quickly Ron has healed in just a month. He said everything looks good, and we have no reason to see him anymore since we are now being taken care of at UW-Madison. We will miss him, he has been wonderful to Ron.
Wednesday, March 18 we were back at UW-Madison to see the swallow specialist and also to follow up with the surgeon. He is swallowing quite well, and really impressed the swallow therapist. We were told that we could move up to very soupy soft foods. The surgeon also said he is doing great, but he will keep a close eye on him from now on. We will see him again in three weeks. Our appointments are finally slowing down to a manageable level, at least for now. He only has one appointment this week just for blood work. The following week is my school's Spring Break, so we are planning to go to my sister's in MO. for a few days, just to get a change of scenery. Can't wait! Thanks to all for your cards! Ron loves getting them.
In Honor of My Husband, Ron
Showing posts with label PEG tube. Show all posts
Showing posts with label PEG tube. Show all posts
Sunday, March 22, 2009
Thursday, February 26, 2009
Ice Chips, Yum!
Thursday, February 26, 2009: Check-up at UW-Madison today with the surgeon. He removed the remaining stitches and staples from Ron's face and neck. Mouth looks great. He was given a plug for his trach, so he can spend longer times with the ability to speak. The doctor said that once he can leave the plug in day and night for at least 3 days, the trach will be removed. Our next appointment is next Wednesday, so that is our goal. They will remove the trach that day and then he will immediately have his swallow study done. He was given some ice chips in the hospital so they could just see if they would make him choke. He did fine with them, so he is to have them at home as often as he wants. The doctor is just sure that he will be able to eat again. We are so excited! I told the team that he was torturing himself yesterday by watching the Food Network. I came in and said "Doesn't that make you hungry to see all that food?" He nodded...and the worst part was that they were making pancakes at the time--one of his very favorite foods! He has lost 14 pounds since right before the surgery. I have ordered 4 cases of Carnation VHC, which is a very high calorie supplement, like Ensure or Boost but the calories and the amount of protein is higher. He was sent home with exercises to do with his tongue and he is to practice swallowing hard. He is very motivated to eat again and I will feel like I can return to work if he gets rid of the trach, so that is what prayers should be directed for at this time. He is feeling as well as can be expected right now. The only problem we haven't been able to solve is that he is getting very little sleep. After discussing with the doctor today, we got a prescription for sleeping pills to use as sparingly as we can. I think he would be happy to get a good nights sleep every other night or even every third night. It would be an improvement! We have an appointment on Monday with the Chemotherapy Oncologist, so I will update after that.
Sunday, February 22, 2009
Ron is Home!
Sunday, February 22, 2009: All apologies to those who follow this blog. I promised to keep you informed of Ron's progress in the hospital and I didn't. I decided to not bring my laptop because I would have had to carry it all over the hospital with me. I'm so sorry. I tried to keep in touch with many by phone. Anyway, Ron came home this past Wednesday, February 18, after 16 days in the hospital. He had to spend more time than we thought because he had a setback that I will explain. I will try to reconstruct our time.
Monday, February 2: We got to the hospital at about 5 a.m., a little early. The nerves were working big time! I was just sure that Ron would be changed forever after this surgery, and I was so worried about that. While we were waiting in the pre-surgical area, our daughter came back to see us and along with her was my sister! She surprised me by making the drive (again) all the way from Missouri just to be with us. I was so glad she was there. She will never know how much she means to me and Ron. They wheeled Ron away at about 7 a.m. and we didn't see him again for 17 hours, at midnight. We all went to the surgical waiting area and tried to settle in. I had again brought things to read, but my mind just would not let me concentrate on anything. It really helped to have our daughter and son-in-law there along with my sister. They were there the entire time with me. I also got a surprise that morning. A woman came up to me and asked if I was Lori. I said yes, and she introduced herself as someone I knew only from the OCF website. She lives in Madison and her husband had been treated there by the same Doctor. She had made a special trip just to see me and wish us luck. I was so surprised and happy to meet her. Unfortunately, she lost her husband last October, but she told me that UW-Madison had allowed him to live a longer and better quality life. This is just an example of the wonderful people on the OCF website. They have helped me so much!
We got phone updates throughout the day, about every hour and a half. At 3 p.m. we were told that the micro vascular work was starting and that it would be about 2 or 3 more hours. At 5 p.m., they said they were about one to one and a half hours away. At 6 p.m. they were finishing up. Ron's doctor came out at about 6:30 p.m. to tell us how it went. Ron did not lose his tongue! I was so thrilled at that news that the rest of it really didn't sink in right away. Ron still has about 1/3 of his original tongue. The tumor was large, with the right mandible fully necrotic and cancerous. There were suspicious looking nodes both in the left neck and under his chin, which were removed. Everything on the right neck looked good. The right mandible was removed and replaced with a metal plate. The tissue was replaced with scapular muscle from his back. The flap looked great but was not initially perfusing very well, so that will be watched closely. Ron was sent to the recovery room at 7:30 p.m. We were told to go to the ICU family room at this point. For the next four and a half hours, we were told nothing. I was really losing it at this point and was very angry that we never had one update from the recovery room at all. My sister said that I shouldn't be getting mad, and I snapped at her and left the room. I felt horrible right after that. I was so worried about Ron at this point and not hearing anything was making it so much worse. I cried in the hallway for a while and then went back in and apologized to everyone for losing it. I love my sister so much, she is the last person I wanted to snap at. It was a very long day. We finally were allowed to go into the ICU to see Ron at midnight. He was totally out of it, and I'm not sure he even knew we were there, but it was just so good to see him again. He looked the same as he looked after the surgery in September since the same incision was used. The only difference this time was that the neck incision extended to the left side as well as the right. He had three drains, one scapular, one in his left neck and one in his right neck. He also had a trach, an arterial line, several IV's, a catheter and a nasal feeding tube. Once we got to see him and know that he was alright we left the hospital to get some sleep. My sister had rented an apartment in the same building where our daughter and son-in-law live, and I would stay with her while she was here. What a wonderful thing to fall into bed that night.
The next few days passed quickly. My sister had to go back home, but I was so happy to have had her here! Every day Ron had lines removed, which is always a good thing. There were areas of concern with the flap. Some areas were perfusing better than others, so the doctor was keeping a very close eye on it. Ron was on IV steroids to help with the facial swelling, so it looked much better than in September. February 5 Ron was moved from the ICU to the regular ENT Surgical floor. On Friday, February 6, the PEG tube was put in his stomach. When he got back to the room, he was beyond pain. It turns out, they could not anesthetize him because it would increase secretions, so he had only an IV pain medication. He felt every bit of the PEG tube insertion. He told the nurse that his pain was a 6. He has never used a number that high before, so it was a bad night attempting to get on top of the pain, and keep it under control. Thankfully, it did get under control and the following day the nasal tube was removed.
Sunday, February 8: The doctor came in and placed 4-5 stitches inside Ron's mouth. He apparently had kind of a tunnel that was gathering drainage. Ron had been having a lot of bloody sputum building up in his mouth and he would have to frequently attempt to spit it out. It's very hard to get rid of sputum when you can't control your tongue! There is an infection in Ron's own tissue now, so he was changed from one antibiotic to two very powerful ones. The doctor said that he may have to go back in to remove the infected tissue if the antibiotics do not get it under control quickly. We are all praying that he won't have to go back in, but the doctor has an OR scheduled for Wednesday, just in case. The next two days it appeared that the new antibiotics were really working, but on Wednesday morning, the doctor said that he would have to go in again and remove infected tissue. He briefly mentioned the possibility of having to remove the metal jaw, but I didn't worry too much about that.
Wednesday, February 11: Ron was scheduled for the OR at 2 p.m., but he was not taken in until 3:30. They had told me that it should just be an hour to an hour and a half. The OR called the floor nurse at 5:45 to say that there was about an hour to an hour and a half to go. At this point, I knew that they were removing his jaw. The doctor came to Ron's room to talk to me at 6:30 p.m. He said that they did have to remove the jaw, and that it would not be replaced. He felt just terrible about this outcome, but I told him I understand that it's no one's fault and that infection is a huge risk with any extensive surgery. He also had to remove a lot of infected tissue. He left part of the incision open on the right side and placed antibiotic packing in the space. Some packing will be removed every day. The only thing I worried about was Ron's future ability to eat without a right jaw, but the doctor said that he thought Ron would get to the point where he could at least eat soft foods. I just know that we are in the best place for the best possible outcome and if anyone can eat again, it will be Ron. The following day, Ron's plastic temporary trach was replaced with a steel one that could end up being permanent, although we certainly hope it won't. It is much easier to take care of though. The days following went well. Ron was feeling much better everyday with the infection gone, and the remaining packing was removed on Sunday, the 15th. On Monday the doctor said that Ron could go home on Thursday. Tuesday his staples were removed from his scapular incision. We didn't get a good picture of it, but there were 38 staples in there!
On Wednesday, February 18, I had just been getting ready to go to the hospital at my daughter's apartment when I got the phone call that Ron could go home! YAY! Released a day early! We all got ready very quickly and I packed up all of my things so we could get to the hospital ASAP. Of course, once we got there we had a lot of sitting around and waiting as per usual. We had a ton of instructions to go through, as well as talking to the pharmacist about all of his medications. We finally got out of there and dropped off our daughter and son-in-law and got back home at about 5 p.m. We were thankfully sent home with a ton of supplies as well as a case of nutritional supplements for his PEG tube. Our poor son and other daughter were sent out with the prescriptions to get them filled for his evening doses. The Walmart here did not have the liquid antibiotics. They called the local Walgreen's, and they didn't have them either. So they had to drive to another town to that Walmart to get them. It took them about 3 hours to get back home from what was supposed to be a very easy errand.
Our days now are trying to get into a good routine. I follow spreadsheets every day so I don't forget anything. I didn't really realize how much there would be to do every day. Ron is feeling better than expected. He is only having pain medication about three or four times a day. His biggest complaint is still the amount of expectorating he has to do although it is much less now than when in the hospital. One very unexpected thing happened on Thursday. I had checked our bank balance online and realized that a paycheck had been deposited for me. I knew this was a mistake, as I have missed 3 weeks of work at this point. I decided to go in to school on Friday so I could talk to my bosses and figure out if I needed to sign papers to take more time off and to let the payroll secretary know that there was an error made. Later that night, I checked my work email. The administrator had written to me to tell me that my friends at work had donated some of their sick days so I could get a paycheck. Well, I lost it and started crying. I love my job so much, and they are so good to me there. I went in on Friday and it was very emotional for me. A lot of the students came up and hugged me, and they had also made me a huge card saying that they missed me. I was also given a card, signed by many friends at work. I just glanced at it because I saw so many names and there was cash inside, and I knew that I would lose it if I read it right there. I made the rounds to say hello to as many as I could, and show them Ron's photo. They thought that his face must be sunken in since his jaw was removed, but it isn't because there is so much back muscle in there, it is quite firm. I found out while I was there that I am not eligible for the FMLA because I don't work enough hours through the year, but I was told that it didn't matter. I could take as much time off to be with Ron as I needed to. I am hoping to return to work the second week of March. I miss it so much. I am so lucky to have the job that I have, and so many wonderful friends there. It truly is like a family.
We have an appointment with the surgeon on Thursday, Feb. 26. I would imagine that the staples will be removed from Ron's face and neck at that appointment. We have an appointment with his Medical Oncologist on March 2 to discuss when to begin chemotherapy. Ron will have a swallow study scheduled within the next few weeks, also. We need to find out if he is able to swallow again, and make sure that he does not aspirate into his lungs. All in all, we feel so blessed: That he made it through the surgery, still has some tongue left, and, oh yeah, the nodes removed were all negative for cancer!! Also, our wonderful families and friends. We love and thank you all for your good wishes and prayers.
Monday, February 2: We got to the hospital at about 5 a.m., a little early. The nerves were working big time! I was just sure that Ron would be changed forever after this surgery, and I was so worried about that. While we were waiting in the pre-surgical area, our daughter came back to see us and along with her was my sister! She surprised me by making the drive (again) all the way from Missouri just to be with us. I was so glad she was there. She will never know how much she means to me and Ron. They wheeled Ron away at about 7 a.m. and we didn't see him again for 17 hours, at midnight. We all went to the surgical waiting area and tried to settle in. I had again brought things to read, but my mind just would not let me concentrate on anything. It really helped to have our daughter and son-in-law there along with my sister. They were there the entire time with me. I also got a surprise that morning. A woman came up to me and asked if I was Lori. I said yes, and she introduced herself as someone I knew only from the OCF website. She lives in Madison and her husband had been treated there by the same Doctor. She had made a special trip just to see me and wish us luck. I was so surprised and happy to meet her. Unfortunately, she lost her husband last October, but she told me that UW-Madison had allowed him to live a longer and better quality life. This is just an example of the wonderful people on the OCF website. They have helped me so much!
We got phone updates throughout the day, about every hour and a half. At 3 p.m. we were told that the micro vascular work was starting and that it would be about 2 or 3 more hours. At 5 p.m., they said they were about one to one and a half hours away. At 6 p.m. they were finishing up. Ron's doctor came out at about 6:30 p.m. to tell us how it went. Ron did not lose his tongue! I was so thrilled at that news that the rest of it really didn't sink in right away. Ron still has about 1/3 of his original tongue. The tumor was large, with the right mandible fully necrotic and cancerous. There were suspicious looking nodes both in the left neck and under his chin, which were removed. Everything on the right neck looked good. The right mandible was removed and replaced with a metal plate. The tissue was replaced with scapular muscle from his back. The flap looked great but was not initially perfusing very well, so that will be watched closely. Ron was sent to the recovery room at 7:30 p.m. We were told to go to the ICU family room at this point. For the next four and a half hours, we were told nothing. I was really losing it at this point and was very angry that we never had one update from the recovery room at all. My sister said that I shouldn't be getting mad, and I snapped at her and left the room. I felt horrible right after that. I was so worried about Ron at this point and not hearing anything was making it so much worse. I cried in the hallway for a while and then went back in and apologized to everyone for losing it. I love my sister so much, she is the last person I wanted to snap at. It was a very long day. We finally were allowed to go into the ICU to see Ron at midnight. He was totally out of it, and I'm not sure he even knew we were there, but it was just so good to see him again. He looked the same as he looked after the surgery in September since the same incision was used. The only difference this time was that the neck incision extended to the left side as well as the right. He had three drains, one scapular, one in his left neck and one in his right neck. He also had a trach, an arterial line, several IV's, a catheter and a nasal feeding tube. Once we got to see him and know that he was alright we left the hospital to get some sleep. My sister had rented an apartment in the same building where our daughter and son-in-law live, and I would stay with her while she was here. What a wonderful thing to fall into bed that night.
The next few days passed quickly. My sister had to go back home, but I was so happy to have had her here! Every day Ron had lines removed, which is always a good thing. There were areas of concern with the flap. Some areas were perfusing better than others, so the doctor was keeping a very close eye on it. Ron was on IV steroids to help with the facial swelling, so it looked much better than in September. February 5 Ron was moved from the ICU to the regular ENT Surgical floor. On Friday, February 6, the PEG tube was put in his stomach. When he got back to the room, he was beyond pain. It turns out, they could not anesthetize him because it would increase secretions, so he had only an IV pain medication. He felt every bit of the PEG tube insertion. He told the nurse that his pain was a 6. He has never used a number that high before, so it was a bad night attempting to get on top of the pain, and keep it under control. Thankfully, it did get under control and the following day the nasal tube was removed.
Sunday, February 8: The doctor came in and placed 4-5 stitches inside Ron's mouth. He apparently had kind of a tunnel that was gathering drainage. Ron had been having a lot of bloody sputum building up in his mouth and he would have to frequently attempt to spit it out. It's very hard to get rid of sputum when you can't control your tongue! There is an infection in Ron's own tissue now, so he was changed from one antibiotic to two very powerful ones. The doctor said that he may have to go back in to remove the infected tissue if the antibiotics do not get it under control quickly. We are all praying that he won't have to go back in, but the doctor has an OR scheduled for Wednesday, just in case. The next two days it appeared that the new antibiotics were really working, but on Wednesday morning, the doctor said that he would have to go in again and remove infected tissue. He briefly mentioned the possibility of having to remove the metal jaw, but I didn't worry too much about that.
Wednesday, February 11: Ron was scheduled for the OR at 2 p.m., but he was not taken in until 3:30. They had told me that it should just be an hour to an hour and a half. The OR called the floor nurse at 5:45 to say that there was about an hour to an hour and a half to go. At this point, I knew that they were removing his jaw. The doctor came to Ron's room to talk to me at 6:30 p.m. He said that they did have to remove the jaw, and that it would not be replaced. He felt just terrible about this outcome, but I told him I understand that it's no one's fault and that infection is a huge risk with any extensive surgery. He also had to remove a lot of infected tissue. He left part of the incision open on the right side and placed antibiotic packing in the space. Some packing will be removed every day. The only thing I worried about was Ron's future ability to eat without a right jaw, but the doctor said that he thought Ron would get to the point where he could at least eat soft foods. I just know that we are in the best place for the best possible outcome and if anyone can eat again, it will be Ron. The following day, Ron's plastic temporary trach was replaced with a steel one that could end up being permanent, although we certainly hope it won't. It is much easier to take care of though. The days following went well. Ron was feeling much better everyday with the infection gone, and the remaining packing was removed on Sunday, the 15th. On Monday the doctor said that Ron could go home on Thursday. Tuesday his staples were removed from his scapular incision. We didn't get a good picture of it, but there were 38 staples in there!
On Wednesday, February 18, I had just been getting ready to go to the hospital at my daughter's apartment when I got the phone call that Ron could go home! YAY! Released a day early! We all got ready very quickly and I packed up all of my things so we could get to the hospital ASAP. Of course, once we got there we had a lot of sitting around and waiting as per usual. We had a ton of instructions to go through, as well as talking to the pharmacist about all of his medications. We finally got out of there and dropped off our daughter and son-in-law and got back home at about 5 p.m. We were thankfully sent home with a ton of supplies as well as a case of nutritional supplements for his PEG tube. Our poor son and other daughter were sent out with the prescriptions to get them filled for his evening doses. The Walmart here did not have the liquid antibiotics. They called the local Walgreen's, and they didn't have them either. So they had to drive to another town to that Walmart to get them. It took them about 3 hours to get back home from what was supposed to be a very easy errand.
Our days now are trying to get into a good routine. I follow spreadsheets every day so I don't forget anything. I didn't really realize how much there would be to do every day. Ron is feeling better than expected. He is only having pain medication about three or four times a day. His biggest complaint is still the amount of expectorating he has to do although it is much less now than when in the hospital. One very unexpected thing happened on Thursday. I had checked our bank balance online and realized that a paycheck had been deposited for me. I knew this was a mistake, as I have missed 3 weeks of work at this point. I decided to go in to school on Friday so I could talk to my bosses and figure out if I needed to sign papers to take more time off and to let the payroll secretary know that there was an error made. Later that night, I checked my work email. The administrator had written to me to tell me that my friends at work had donated some of their sick days so I could get a paycheck. Well, I lost it and started crying. I love my job so much, and they are so good to me there. I went in on Friday and it was very emotional for me. A lot of the students came up and hugged me, and they had also made me a huge card saying that they missed me. I was also given a card, signed by many friends at work. I just glanced at it because I saw so many names and there was cash inside, and I knew that I would lose it if I read it right there. I made the rounds to say hello to as many as I could, and show them Ron's photo. They thought that his face must be sunken in since his jaw was removed, but it isn't because there is so much back muscle in there, it is quite firm. I found out while I was there that I am not eligible for the FMLA because I don't work enough hours through the year, but I was told that it didn't matter. I could take as much time off to be with Ron as I needed to. I am hoping to return to work the second week of March. I miss it so much. I am so lucky to have the job that I have, and so many wonderful friends there. It truly is like a family.
We have an appointment with the surgeon on Thursday, Feb. 26. I would imagine that the staples will be removed from Ron's face and neck at that appointment. We have an appointment with his Medical Oncologist on March 2 to discuss when to begin chemotherapy. Ron will have a swallow study scheduled within the next few weeks, also. We need to find out if he is able to swallow again, and make sure that he does not aspirate into his lungs. All in all, we feel so blessed: That he made it through the surgery, still has some tongue left, and, oh yeah, the nodes removed were all negative for cancer!! Also, our wonderful families and friends. We love and thank you all for your good wishes and prayers.
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!
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