Erbitux seems to be working!

I'm so sorry I haven't updated the blog for a while. It has been a crazy few weeks. Ron has now had four treatments of Erbitux, and while he has not broken out in pimples all over, his nose is affected. He also has the side effect of splitting skin and bleeding on his fingers. It looks very painful but he says it really isn't. We have applied a liquid skin on them, but it doesn't seem to do much good. We did have another tough emotional appointment with his MO last week before chemo. The Dr. came in and said "Well Ron, most people in your stage live only about a month. How long has it been since we started treatment?" We said three weeks and he said "Well then, you are doing well, my friend." The doctor also said that he will not add another chemo agent to Ron's treatment because he could not handle it at this point. After the appointment we went back to the treatment room and Ron sat in a chemo chair. He looked at me and said "What did he mean about a month?" I told him that it didn't mean he would die in a month, but that I thought it would be months, not years. He nodded and that was the end of the conversation. He proceeded with chemo while I ran some errands in town.
Later that night, my heart broke. Ron came in to the kitchen and said to me "So you don't think I will be here next year?" I just broke down and hugged him and said "Honey, I hope you are but I just don't know." Oh, this is so hard. He said "I thought if I had this operation I would get another year" and I said "Well, you should have but the cancer came back right away." He said "Yeah, okay." I felt awful having to say that but I can't lie to him. Bless his heart, he still has the attitude that he's doing pretty well other than having cancer! He has had some very bad days in the past few weeks. He is now on a larger dose of the Fentanyl patch, and he takes Percocet about every four hours for breakthrough pain. So far, this seems to be keeping his pain at a manageable level. He has also been fighting nausea fairly frequently. Sometimes he will vomit because he has started choking and coughing, but other times he will just vomit for no reason. As far as the choking we may be looking at a permanent trach again at some point because the cancer was shown to be wrapping around his trachea.
Believe it or not, there have been some very good times too. One payday, I looked online to see if my paycheck had been deposited. I knew it would not be a very big one because I have missed so much work lately. Well, to my surprise it was a full paycheck. My wonderful coworkers had AGAIN donated some of their sick days to me when the Administrative Secretary sent out an email. I am so blessed to be working there. I truly love my job and everyone I work with. On top of that paycheck I also discovered that Social Security had deposited Ron's back disability pay. What a wonderful surprise! We can definitely use it, not only for Ron's medical bills, but his medications and also to take a few small trips. We asked the MO if Ron could miss any chemo and he said absolutely not, so our trips will be short ones. Just to give you an idea of his prescription costs, after our last chemo appointment, we left with two new prescriptions. One for 10 Fentanyl patches in a stronger dose and one for Percocet tablets to replace the liquid Roxicet because I thought the tablets would be cheaper than the liquid. I sent our daughter out to Walmart with them, and she called and told me that they did not have the medications, so I told her to go to Walgreen's. I had purchased a drug card from Walgreen's for Ron because he has no prescription coverage with his insurance. This card was supposed to give substantial discounts. So after a while Emily called and said "Um, Mom, do you know how much these prescriptions are going to be?" I told her probably around $200. NO. The 10 Fentanyl patches cost $310. The 120 Percocet tablets cost $160. Close to $500 for two medications! And the Walgreen's drug card had saved me $30 on one and $40 on the other! I try not to even let Ron know what the drugs cost because I don't want him to feel like his meds are costing too much money. Whatever it takes, we will find it somewhere. Now we have a little bit of a cushion to fall back on.
We spent a wonderful weekend up in Minocqua, WI. Our son-in-law's Grandparents own a cabin up there so we were invited to spend a weekend with all of our kids. Now you know that once your kids have grown up, it is very difficult to get them all together for a vacation at the same time. The only person who could not come was our youngest daughter's boyfriend because he had a paper due for school and there was no internet access in the cabin. We went up early Friday morning so we got there at about 11 a.m. We spent that day out on Bearskin Lake and walked around Minocqua. It was a beautiful spring day. Sunny and warm. The other two days were not as nice, but we still had a wonderful time. We took along some old family videos and reminisced about the kids. It's always fun to embarrass the kids! Plans for the future include a day in Woodstock, IL. for my Grandma's 90th birthday, a short trip to Dyersville, IA. to a toy tractor museum that Ron has always wanted to see, and a weekend up in Iola WI. to celebrate our oldest daughter's marriage. She got married to our wonderful son-in-law this past October in a very small ceremony here, and now they are going to have a party up in Iola where Eric's family live. Ron also wants to go to Branson MO. to see Paul Revere and the Raiders at some point this summer. I talked my sister and brother-in-law into coming along. We will have a great time! Also coming up is a fundraiser for Ron at Piggly Wiggly in Lake Geneva. It is this coming weekend, May 23, 24, and 25 from 10 a.m. to 2 p.m. Come out and eat a brat for Ron! He sure wishes he could eat one himself! We appreciate all of your cards and prayers!

Trach is out!

Monday, March 2, 2009: Ron had an appointment with his Medical Oncologist today to discuss chemo. Unfortunately Ron cannot have more chemo unless we find another MO to agree that chemo would help at this point. Ron's Tumor Board does not believe that more chemo would do any good. Their opinion is to wait until the cancer comes back before doing more chemo. The MO says that he is sure the cancer will come back, it is just a question of how soon. After the last surgery, the cancer was back within two months. So now we have an appointment with an MO up at UW-Madison. If she agrees that we should go for chemo now before the cancer returns, we will do so. Ron's MO wants him to have Carboplatin, Taxol, and 5FU. Very rough chemo for about 4-6 months.
Wednesday, March 4 we went back up to UW-Madison for the swallow study. That was done first and it went great! Absolutely no aspiration issues so we don't have to worry about him swallowing wrong. It is very difficult for him to get things to the back of his mouth though. He is reluctant to drink anything. I have to keep nagging him. I'm afraid if he doesn't keep swallowing liquids, he will never progress to food. After the swallow study we saw the surgeon and he removed the trach. His speech continues to progress also. He still has little control over his tongue, everything is still numb, but he is able to be understood when he talks. He also has quite a drooling problem right now, but he cannot tell when he is drooling because everything is so numb. That embarrases him, but it can't be helped so he deals with it. So our next appointment is for next Tuesday, with an MO in Madison. I am hopeful that she will agree to the chemo.
So that's it for the update. I'm not feeling very well either. I have pneumonia right now, but I am now on medication so I should be better soon. It's always something! I just hope I will be able to go back to work on Monday. I have missed so much time already, I just have to feel better by then!

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.

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.

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.

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!

Getting out of the hospital...

Oh, I am so mad! I just spent about two hours typing away, detailing the remaining days that Ron had to spend in the hospital and it disappeared. I am not typing it all again, I will just say that from Sunday, October 5 to Saturday, October 11 was a very long week. Ron had complications with abdominal distention. The doctors tried many different things to try to get rid of it including a Gastrografin enema, an NG tube, and even IV Erythromycin just for the side effect of diarrhea! What a week. By Saturday, he was more than ready to get out of there. His trach had been removed on Thursday, the NG tube on Friday, and by the time I left him on Friday he was eating roast beef for dinner! He had me come up extra early on Saturday morning to take him home, but that went about as well as the previous few days. We finally got out at about 2:30 p.m. and Ron wanted to stop at Omega to have an omelet before we went home. On the way home he had me drive past every field they own to see what had been done while he was gone. He was in the hospital for 11 days, longer than he had ever been away from home or the farm before, or ever wants to be again! We were told to make follow up appointments with Ron's original surgeon (this surgeon's brother) and the plastic surgeon.

Thursday, October 16 we saw the surgeon, who said that he was healing very well, and that the free flap looked good. He told us again that the cancer was much larger than originally thought, but that his brother had removed it all. We knew he would say this, and of course we hope he is right, but that's what he said the first time, too. We then drove up to the plastic surgeon, who removed the 42 staples from Ron's calf where the graft was placed. He told us to leave the donor site on the thigh open to air from now on, but to continue to dress the graft site. In the days following, both sites were really oozing a lot of junky looking stuff, but they never looked infected. I guess it was normal, but the donor site on the thigh continued to look worse each day. I am posting photos (before staple removal), so if you are squeamish, you may want to scroll past quickly.





By Monday evening, the 20th, the bottom half of the donor site was open and oozing and sticking to Ron's clothing, so I cleaned it off and started dressing it again. I called his primary doctor and we went to see him on Tuesday. I was worried that I wasn't taking care of his wounds the way I should but he said they both looked good, and that his thigh just needed a little more time to heal. Other than his leg, Ron is feeling good. He only takes pain medication a couple of times a day. He usually takes two Vicodin to help him sleep at night, also. He is still using the walker in the house, but when we go out he uses his crutches or a cane. He can eat pretty much anything put in front of him, as usual.

Thursday, October 23. We saw Ron's Oncologist today to discuss future treatment. He came in the room and again said that this cancer is incurable. I said that we understood that it would probably come back at some point, but for now Ron is willing to fight it again. He said that he is recommending 10-12 weeks of Erbitux, which I have read is given weekly. I asked about having radiation again, and he paused. I asked if the radiation oncologist was reluctant and he nodded. He said that the RO is worried about radiating the free flap and the damage it may cause. I am not sure if other spouses face this problem, but for us, when we go to see any of Ron's doctors, I am usually the one talking to them and asking all the questions. Ron will just sit there and smile and nod his head, so I feel like I am the one that has to research everything so I will know what to ask and understand what is being discussed. I don't want anyone to think that I take over, but Ron just will not ask anything. He just goes along with whatever they say. I told the doctor that Ron and I have already discussed the point at which he will say enough, but that this is not it. He is ready and willing to fight, and I expect his team to back him up and help him as much as they can. He agreed and said that he would talk to the RO again and try to convince him to treat Ron again. He said that the RO may even call Ron himself and I said I hope he does so Ron can tell him in person that he wants to do whatever he has to again. We are looking for as many years as we can get. The doctor then dropped kind of a bombshell, at least to me. He said that one thing that confused him was that the tonsil was not part of the specimen that he saw from the surgery. He read the surgical report and the tonsil was NOT removed, just "shaved" until pathology said it was clear. He then said that the surgeon would have been a "hero" if he had removed the entire tonsil. Then why didn't he?? This really made me mad and confused. If there was ANY cancer in it, why wasn't the whole thing taken out? I just don't understand, and now we will never see that doctor again, as he gave Ron's case back to his brother for follow up. The doctor finished by saying that he wants Ron to have a PET scan again next week, and then see him again in three weeks, after he has healed some more. I will write again after we get the PET results. I am sure hoping his cheek doesn't light up like it did before surgery.

Post Surgery Days

Wednesday, October 1. When we got in to see Ron today, he looked better than expected. He is on a PCA pump set to deliver 1 mg. of Morphine every 10 minutes, and he uses it regularly. The surgeon came in and deflated the cuff on his trach and asked him to count to 10. His voice was very raspy, but it was there. He said that Ron would do this several times a day and that would help wean him off of the trach. He does have to be suctioned because he coughs up thick secretions. The surgeon is hoping to be able to remove the trach on Friday. Ron may be able to leave the SICU tomorrow. The doctor said again that the cancer was a lot larger than they thought. Ron said that his mouth doesn't hurt, it just feels strange. Still the only pain is from the leg.

Thursday, October 2. When I came in today Ron was sitting up in a chair with a smile on his face. He is now able to eat some ice chips. The pain is much the same, though. He is to get out of bed 3 times a day, without putting any weight on his left leg. Later that afternoon, he did start running a fever on and off. He is not leaving SICU today.

Friday, October 3. This morning, Ron still had a fever. He is now taking Tylenol tablets by mouth. They sent a culture of his trach secretions to check for infection. The right side of his neck looks very swollen today. The fever is what worries me, but he is on Vancomycin, a very strong antibiotic. He also got a transfusion this morning, as his blood count was low. The doctor stressed the importance of him getting out of bed to prevent lung complications. I had a frustrating exchange with the surgeon today. I know he is one of the best in his field, but he doesn't encourage conversation. I started to ask him about the cancer and I said, "I know you said that the cancer extended back to the tonsil, " when he interrupted me and said "It was IN the tonsil." So I said, "So you removed the tonsils then?" He looked at me like I was crazy and said, "No, he would be in here for another week if we removed them. He wouldn't be able to swallow at all." ?? I was left puzzled, but he really makes me feel like I should not question anything. I am assuming that he did in fact remove the right tonsil as the cancer was in it. At least I sure hope so! It was decided that the trach would be left in since his neck has so much swelling. Later that afternoon, Ron was transferred to a regular room.

Saturday, October 4. Good news! The fever has stopped. Ron looks much better today. The swelling is down and he just looks like he feels better. He is still using the PCA regularly though. I do worry how he will get along when it is removed. The doctor was in today and removed his central line, so that is one less tube and drain to worry about. Speech therapy came in and put a Passy-Muir Valve on his trach so he can talk for about an hour at a time. He sounded great. It was nice to hear his voice again. It is harder for him to breathe while it is on, so it tires him out. I will be so glad when that trach is removed. He started coughing at one point and blew the valve across the room! Thankfully, a nurse was in the room so she cleaned it off and replaced it. One problem today is that he is not getting up to a chair since he was transferred. The surgeon left orders for him to be up but the plastic surgeon has to agree, and he has not seen Ron since he was transferred. It is maddening! They could certainly get him up to a chair without him having to put any weight on his left leg. If this isn't resolved by tomorrow, I'm going to have to pitch a fit. I worry that he will end up with pneumonia because he isn't moving enough. He is sleeping much better since the move though, which was much needed. Hospitals in general are not very conducive to rest and recuperation. It will be so good to get him home! I am now thinking that if he can get rid of the trach on Monday, I doubt they would discharge him that day too. I hope they do, but I am kind of thinking it will be Tuesday. Tonight my oldest daughter decided to cook a "Thanksgiving" dinner on Tuesday, and I said that at least Ron should be up to mashed potatoes and gravy by then. And we are so thankful to have him with us! I will finish his hospital days in the next blog.

Surgery Day

Tuesday, September 30, 2008. The big day arrives. Ron, myself, our oldest daughter, and my sister (Yes, she came up again to be there for me--I love her) drove up to St. Luke's early in the morning. Ron got all checked in at Same Day Surgery. We did a lot of the sitting around waiting game. The anesthesiologist came in and I must say he was fantastic. He explained every step they would take in great detail, and he was so funny and personable it made all of us relax. The plastic surgeon came in also and explained that he would use Ron's left leg since his right leg had previously had the hip replacement and also had vessels used for his triple bypass. In between these visits we waited. And then we waited some more. The OR nurse finally came in to get Ron, but couldn't since the operation site had not been marked. So we waited some more while she tried to get ahold of one of the doctors to come down and mark him. Finally the plastic surgeon came back, put a small dot on his right cheek and that was it. One final kiss and they wheeled him down the hall. I told him to think of Baywatch and girls on the beach. That got a smile. Only after he was gone did I allow myself a little breakdown. That part of watching him go to the OR and not knowing what's going to happen is so hard.

The rest of us headed to the ICU waiting room, which was very nice. I had been there before for his bypass surgery, so it was comfortable. The minutes just crawled so slowly, though. He went into surgery right about noon. I brought a whole bag of book review magazines to try to select books to order for the high school, but I couldn't concentrate at all, so I gave up. Mainly, I just sat there and worried about what could possibly be happening. At about 4:30 the OR called to give an update. My sister actually took the call, as I had just stepped out. They said that Ron was doing better than they expected. My sister asked if there was bone involvement, but the nurse said that she was not allowed to say. My sister called my cell phone and I came back up right away. When she told me what was said, I was encouraged somewhat, that at least he was doing okay.

Finally at around 9 p.m. we were told that he was in recovery. We then had to wait to speak to the doctors. The plastic surgeon came in and said that he did not require a full reconstruction of the mandible. The bad news was that he had already removed the section of bone from his fibula, so they just threw it away. He did use quite a bit of his leg tissue to create the large flap and then a skin graft from his thigh to top it off. Then the surgeon came in and said that the cancer was more extensive than they originally thought it would be. He said that the lesion extended from the cheek all the way back to the right tonsil. Also, he removed about half of Ron's mandible that contained cancer. He said that since Ron's mandible was quite big, he could lose half of it and still have a functioning jaw. He also scraped down to check the bone marrow, and that was negative. He also got a trach because of possible swelling in his airway. The cancer was now stage IV because of the bone involvement. They said that he did very well and was already awake.

About an hour later we were finally able to see him in the the Surgical Intensive Care Unit. He had tubes coming from almost every orifice. The actual line of stitches was not as bad as I thought it might be. He looked fairly good but was pale. He was still under the influence of the anesthesia and morphine, which I'm sure was for the best. He only complained about pain in the leg, and he was not a very happy camper when I told him that they didn't even use the bone they took out. But truly I cannot fault the plastic surgeon as they really thought they would need it, so it had to be ready to go. His leg was encased in what appeared to be about 800 feet of gauze. He had a drain coming out of it, and his thigh had a large area where they took the skin graft. He also had a Central line, two peripheral IV lines, and an arterial line to monitor his blood pressure. After knowing he was in the best hands, we finally left the hospital.