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!
In Honor of My Husband, Ron
Wednesday, December 24, 2008
Sunday, December 21, 2008
Cancer times three...
Monday, December 8. Ron had his biopsy surgery today. He sailed through as always. The surgeon came out to talk to me, and said that there were actually two spots to biopsy, not one. One on the floor of the mouth, and another area on his right tongue, where the first cancer appeared. So that was a surprise. I didn't expect two areas. He could not do frozen sections right away as the area had been previously radiated, so he said that we should know in a day or two. Ron got back home and took it pretty easy for the next couple of days. It was again difficult for him to eat, as his mouth was pretty sore, so he stuck to liquids and ended up losing 3 pounds. The surgeon called on Thursday and said that only one biopsy had come in. The biopsy from the tongue was positive for SCC again.
Monday, December 15. We had an appointment with the Oncologist today. As I have said before, he is kind of bleak in his predictions for Ron's success. Well, this visit kind of floored us. He started by saying that if we do nothing, Ron would be gone in three months. Ron and I looked at each other in amazement. I'm sorry, but I just don't think he is anywhere near that point. He has no mets to distant areas. It is all located in his mouth. He then said that with treatment we would have at least a year. He wants to start Erbitux this week. If the chemo fails, we will be looking at entering a clinical trial. He mentioned Chicago, but if we have to do a trial, we are going to go up to UW-Madison. I have heard great things about them, and am still wondering if we should send his file up there and see if they would be more optimistic about his future. So of course, we left there feeling quite devastated again.
Tuesday, December 16. The Tumor Board met this morning to discuss Ron's case and give their recommendations. We had an appointment with his original surgeon. He came in and said "Well, what's going on? I heard they are calling a Tumor Board meeting on Tuesday." I said that was this morning, and he said "Oh no, I missed it. They even paged me, but I was in my office and forgot all about it." I smacked his leg with my little notebook and told him we were counting on him to give us the scoop on what the plan was. So he was no help with that, but he did start talking about using Cyberknife treatment, since Ron cannot have traditional radiation anymore. He wants to send us back to his brother, the surgeon who did Ron's first Salvage Surgery in September to see what he thinks. I wasn't thrilled about going back to him, but if he can offer a good option, I am happy to give him another shot. We left this appointment feeling very hopeful about the Cyberknife.
Wednesday, December 17. Follow up meeting with the Oncologist. Oy. Another downer. He came in and said that the Tumor Board discussed every possible option, and the concensus was that Ron needs another salvage surgery, along with Erbitux. The second biopsy from the floor of the mouth was also positive for SCC. Now, he had already told us a few visits ago, that no more surgery would help! I am very concerned about what this surgery would entail. I mean, they may suggest a total glossectomy (taking out the entire tongue), or placing a permanent trach, or even that he would no longer be able to eat except through a PEG tube. Ron said if that was the case, he would not want to do it. I told him that he has to be in charge from now on, not just blindly do whatever the doctors tell him. He has to decide what he can live with, and what he cannot. The Oncologist also said that he did not think the Cyberknife would be an option, but I had already made an appointment with an RO up at St. Luke's to discuss the option, so we are at least going to find out what he thinks. After we meet with the RO on the 22nd, we then have an appointment with the salvage surgeon. I will be very interested in what he has to say. If he is not being clear or not explaining exactly what will happen to Ron, I am going to insist he tell Ron what the outcomes could be. Whatever Ron is willing to do, I will support him in every way, but I want him to be clear about what he will and will not accept.
So we have the two appointments on Monday, then two on Tuesday, just blood work and an appointment with his general doctor for a physical, to make sure he can get a Port placed on the 30th. Oh, I forgot to mention, the Oncologist said that for now we are to "sit tight" on chemo! That upset me also, because the last visit he told us, this cancer is so aggressive and growing so quickly, we must start chemo as soon as possible. Now we are to wait until we find out what the surgeon thinks he can do. After these two rough days this week, we are then driving to my sister's in MO. again. We have such fun there, and we really need to leave all of this behind for a while. I will update with the suggestions we get tomorrow. Please pray that the Cyberknife is a possibility for Ron.
Monday, December 15. We had an appointment with the Oncologist today. As I have said before, he is kind of bleak in his predictions for Ron's success. Well, this visit kind of floored us. He started by saying that if we do nothing, Ron would be gone in three months. Ron and I looked at each other in amazement. I'm sorry, but I just don't think he is anywhere near that point. He has no mets to distant areas. It is all located in his mouth. He then said that with treatment we would have at least a year. He wants to start Erbitux this week. If the chemo fails, we will be looking at entering a clinical trial. He mentioned Chicago, but if we have to do a trial, we are going to go up to UW-Madison. I have heard great things about them, and am still wondering if we should send his file up there and see if they would be more optimistic about his future. So of course, we left there feeling quite devastated again.
Tuesday, December 16. The Tumor Board met this morning to discuss Ron's case and give their recommendations. We had an appointment with his original surgeon. He came in and said "Well, what's going on? I heard they are calling a Tumor Board meeting on Tuesday." I said that was this morning, and he said "Oh no, I missed it. They even paged me, but I was in my office and forgot all about it." I smacked his leg with my little notebook and told him we were counting on him to give us the scoop on what the plan was. So he was no help with that, but he did start talking about using Cyberknife treatment, since Ron cannot have traditional radiation anymore. He wants to send us back to his brother, the surgeon who did Ron's first Salvage Surgery in September to see what he thinks. I wasn't thrilled about going back to him, but if he can offer a good option, I am happy to give him another shot. We left this appointment feeling very hopeful about the Cyberknife.
Wednesday, December 17. Follow up meeting with the Oncologist. Oy. Another downer. He came in and said that the Tumor Board discussed every possible option, and the concensus was that Ron needs another salvage surgery, along with Erbitux. The second biopsy from the floor of the mouth was also positive for SCC. Now, he had already told us a few visits ago, that no more surgery would help! I am very concerned about what this surgery would entail. I mean, they may suggest a total glossectomy (taking out the entire tongue), or placing a permanent trach, or even that he would no longer be able to eat except through a PEG tube. Ron said if that was the case, he would not want to do it. I told him that he has to be in charge from now on, not just blindly do whatever the doctors tell him. He has to decide what he can live with, and what he cannot. The Oncologist also said that he did not think the Cyberknife would be an option, but I had already made an appointment with an RO up at St. Luke's to discuss the option, so we are at least going to find out what he thinks. After we meet with the RO on the 22nd, we then have an appointment with the salvage surgeon. I will be very interested in what he has to say. If he is not being clear or not explaining exactly what will happen to Ron, I am going to insist he tell Ron what the outcomes could be. Whatever Ron is willing to do, I will support him in every way, but I want him to be clear about what he will and will not accept.
So we have the two appointments on Monday, then two on Tuesday, just blood work and an appointment with his general doctor for a physical, to make sure he can get a Port placed on the 30th. Oh, I forgot to mention, the Oncologist said that for now we are to "sit tight" on chemo! That upset me also, because the last visit he told us, this cancer is so aggressive and growing so quickly, we must start chemo as soon as possible. Now we are to wait until we find out what the surgeon thinks he can do. After these two rough days this week, we are then driving to my sister's in MO. again. We have such fun there, and we really need to leave all of this behind for a while. I will update with the suggestions we get tomorrow. Please pray that the Cyberknife is a possibility for Ron.
Tuesday, December 2, 2008
Cautiously optimistic...
Tuesday, December 2, 2008. It's Ron's 56th birthday today! Guess what he got to do? Have a colonoscopy. What a lucky guy! We were given the choice between having it on his birthday or the day after, in which case he would have been doing the "prep" on his birthday, and as you all probably know, that is the worst part of the procedure. At least now he can have dinner and have a piece of apple pie (his favorite) for dessert tonight. He has gained another 5 pounds since my last post! We went down to Missouri to see my sister and her family over Thanksgiving and she stuffed him like a Christmas goose. Now to catch everyone up on what's been happening since the last post. On Tuesday, November 18, Ron saw the surgeon. He could not see any areas of concern, and his feeling was that the PET scan was done too soon after surgery to be accurate. He told Ron to go ahead and have the other tests done and come back to see him after that. Our next appointment was on November 21st with a Gastroenterologist, to take Ron's history and schedule the colonoscopy. He also did not think there would be cancer found. On November 25th, Ron had his Thyroid scan done.
Wednesday, November 26th was our big meeting with the Radiation Oncologist. It was good to see him again, after 2 years. He gave Ron a thorough exam, and did find a small nodule under his tongue, and had me come and feel where it was. That was the only area that concerned him. He said that he would not agree to re-radiate until we were sure the cancer was back. He told Ron to go back to the surgeon so he could do a biopsy of the area. Only with positive results would he agree to radiation, and he mentioned that it might be a different type than IMRT. If the results of the biopsy are negative, he wants to wait and repeat the PET in January. He also mentioned that Ron has Perineural Invasion, or PNI. I didn't ask anything about it at the time, but have started to search to find out what that means. From what I understand so far, it acts as a scaffold for the cancer cells to spread. We left the RO's office feeling much more positive about the future. There were now three doctors that thought the PET results would be inaccurate so soon after the surgery. Oh, how we hope they are right. Right after the appointment we drove for 8 hours down to my sister's, and had a wonderful time visiting with all of them until Sunday, the 30th, when we drove back home.
Monday, December 1. Ron had an appointment with the chemotherapy doctor today. He said the Thyroid scan was negative. Thank God! One less area to worry about. He agreed with the RO that the surgeon should biopsy the spot under the tongue. Right after this appointment, we had an appointment with the surgeon. He agreed that the nodule was suspicious, but will not do a needle biopsy. Instead, Ron will have outpatient surgery next Monday, where the surgeon will remove the entire nodule if possible, to send to pathology. He said that he is not as certain that Ron cannot be cured of this cancer again, and said that he thought the oncologist was being too "bleak." We just don't know what to think at this point. Ron is very positive about being able to beat this again. I need to draw on some of that strength of his! Today, December 2, Ron had his colonoscopy. The doctor came out and told me that no cancer was found! He did have some small pockets of diverticulosis, but it shouldn't be a concern. Ron can't eat nuts or popcorn anymore anyway without teeth. He suggested more fiber, so I will pick up some supplements, since he also has trouble eating raw fruits and vegetables. So now we wait until Monday, the 8th, to find out the results of the biopsy. Keep praying, please. So far things are looking up!
Wednesday, November 26th was our big meeting with the Radiation Oncologist. It was good to see him again, after 2 years. He gave Ron a thorough exam, and did find a small nodule under his tongue, and had me come and feel where it was. That was the only area that concerned him. He said that he would not agree to re-radiate until we were sure the cancer was back. He told Ron to go back to the surgeon so he could do a biopsy of the area. Only with positive results would he agree to radiation, and he mentioned that it might be a different type than IMRT. If the results of the biopsy are negative, he wants to wait and repeat the PET in January. He also mentioned that Ron has Perineural Invasion, or PNI. I didn't ask anything about it at the time, but have started to search to find out what that means. From what I understand so far, it acts as a scaffold for the cancer cells to spread. We left the RO's office feeling much more positive about the future. There were now three doctors that thought the PET results would be inaccurate so soon after the surgery. Oh, how we hope they are right. Right after the appointment we drove for 8 hours down to my sister's, and had a wonderful time visiting with all of them until Sunday, the 30th, when we drove back home.
Monday, December 1. Ron had an appointment with the chemotherapy doctor today. He said the Thyroid scan was negative. Thank God! One less area to worry about. He agreed with the RO that the surgeon should biopsy the spot under the tongue. Right after this appointment, we had an appointment with the surgeon. He agreed that the nodule was suspicious, but will not do a needle biopsy. Instead, Ron will have outpatient surgery next Monday, where the surgeon will remove the entire nodule if possible, to send to pathology. He said that he is not as certain that Ron cannot be cured of this cancer again, and said that he thought the oncologist was being too "bleak." We just don't know what to think at this point. Ron is very positive about being able to beat this again. I need to draw on some of that strength of his! Today, December 2, Ron had his colonoscopy. The doctor came out and told me that no cancer was found! He did have some small pockets of diverticulosis, but it shouldn't be a concern. Ron can't eat nuts or popcorn anymore anyway without teeth. He suggested more fiber, so I will pick up some supplements, since he also has trouble eating raw fruits and vegetables. So now we wait until Monday, the 8th, to find out the results of the biopsy. Keep praying, please. So far things are looking up!
Monday, November 17, 2008
Post Surgical PET Results
Monday, November 17. We had our appointment with the Oncologist today. The results were not quite what we were hoping for. Ron's latest PET scan now shows three, possibly four more areas of cancer. There are definite areas in the right parotid position, right sublingual, and left thyroid lobe. There was also FDG uptake in the anal area. What this means is that, since the surgery September 30, the cancer has come back in these three areas, and possibly four. The Oncologist really does not think that the uptake in the anal area is anything, but Ron must now have a Colonoscopy to make sure. He also needs a Thyroid scan. The Tumor Board met, and they all agreed that Ron does need Chemotherapy and Radiation again. He will also have a PORT placement again to receive the chemo and for blood draws. So within the next few weeks, we will be pretty busy with appointments.
The Oncologist stressed again that Ron will no longer be cured, just managed. He is planning to use Erbitux for 10-12 weeks. Radiation has not been set yet, but will be soon. The RO is still reluctant, but since the Tumor Board is recommending radiation again, the Oncologist is sure that he will agree. He also agreed with Ron when Ron told him he did not want the PEG tube again. He said that he had the most trouble with that the last time. It makes me a little worried about him losing too much weight, but this is totally his decision. If we get going and he starts losing too quickly, he can always decide that he should have the PEG again. The good news is that he has gained six pounds since coming home from the hospital. I hope to get that number up before treatment starts. If he could, I would like him to gain at least twenty, but I don't know if that will happen! I also told the Oncologist that at some point, we would like to do some traveling around the country, and asked if he would let us know when we should do that. He smiled and said probably when Ron is done with treatment and recovered a little bit we should start.
I am feeling much more emotionally fragile this time around. I'm not sure why, and it is only when I am alone, and start to think too much. When I am with Ron, especially at appointments, I try not to be emotional at all because I don't want to upset him and I need to keep it together so I can write everything down. I just don't know if I'm ready for this horrible stuff again. Ron is though, and if he can do it again, I can too. The Oncologist did say that from this point on there would be no more surgery, and Ron agreed that he did not want anymore. Treatment now will be only chemo and radiation. Ron is ready to go! He has healed so quickly from the surgery. He is now walking without a cane (okay, limping really). His leg looks fantastic. The only trouble he has occasionally now is that the free flap sometimes swells more than others and it becomes uncomfortably tight around his right ear. He says it feels like an ear-ache, but he knows it's not. He is in good spirits though, as always. He's an amazing guy!
The Oncologist stressed again that Ron will no longer be cured, just managed. He is planning to use Erbitux for 10-12 weeks. Radiation has not been set yet, but will be soon. The RO is still reluctant, but since the Tumor Board is recommending radiation again, the Oncologist is sure that he will agree. He also agreed with Ron when Ron told him he did not want the PEG tube again. He said that he had the most trouble with that the last time. It makes me a little worried about him losing too much weight, but this is totally his decision. If we get going and he starts losing too quickly, he can always decide that he should have the PEG again. The good news is that he has gained six pounds since coming home from the hospital. I hope to get that number up before treatment starts. If he could, I would like him to gain at least twenty, but I don't know if that will happen! I also told the Oncologist that at some point, we would like to do some traveling around the country, and asked if he would let us know when we should do that. He smiled and said probably when Ron is done with treatment and recovered a little bit we should start.
I am feeling much more emotionally fragile this time around. I'm not sure why, and it is only when I am alone, and start to think too much. When I am with Ron, especially at appointments, I try not to be emotional at all because I don't want to upset him and I need to keep it together so I can write everything down. I just don't know if I'm ready for this horrible stuff again. Ron is though, and if he can do it again, I can too. The Oncologist did say that from this point on there would be no more surgery, and Ron agreed that he did not want anymore. Treatment now will be only chemo and radiation. Ron is ready to go! He has healed so quickly from the surgery. He is now walking without a cane (okay, limping really). His leg looks fantastic. The only trouble he has occasionally now is that the free flap sometimes swells more than others and it becomes uncomfortably tight around his right ear. He says it feels like an ear-ache, but he knows it's not. He is in good spirits though, as always. He's an amazing guy!
Tuesday, October 28, 2008
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.
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.
Saturday, October 4, 2008
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.
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.
Sunday, September 28, 2008
Deja Vu...
All was well with Ron until July of 2008. He had continued to have CT and PET scans every three months since 2005 and they were all clear. Things had really returned to "normal", at least our new normal. He could and did eat anything, even without teeth. Sometime in July he had eaten some potato chips and felt like one had made a sore in his mouth, on his right cheek. He had me look several times with a flashlight, but I really could not see any obvious wound. There was a small white area, and again, as he was not scheduled for any doctor visits for months, I told him we should go to his surgeon so he could check it out. I made the appointment for August 13, 2008.
I was not at all prepared for what we were told at this appointment. Later that night Ron said that he knew what was happening but didn't want to tell me. So the surgeon looked at Ron's cheek and said "Oh yeah, that doesn't look good at all. I think it's cancer again." He then showed me the lesion, and I swear it was so big I don't have any idea how I could not see it at home. The surgeon felt that this time there would be bone involved, which would have to be reconstructed. Since the local hospital, where Ron had his original surgery, did not have a Plastic Surgeon available, he told us that he was sending us to his brother in Milwaukee. His brother is also an ENT Surgeon, one of the top in his field. We would consult with him and he would bring in a Plastic Surgeon to do the reconstruction part of the surgery. Ron took all of this in stride, as he always does, but I can say that I left there in shock and just devastated.
When we got home, Ron went out to the barn to talk to his brother. I was sitting on the steps outside having a cry when Ron came up and just patted my shoulder. I said "I just didn't want you to have to go through all this again", and he made a dismissive motion with his hand and said "Ah, this is nothing. I'll be fine." He really amazes me. I don't know how, after all he has been through, he can keep his positive attitude. I then went in and called my sister, who is my best friend and counsel. She always helps me cope and helps me think of things to do first. She suggested that we should call Ron's Oncologist and let him know what was happening, and ask for a PET and CT scan immediately. Ron's appointment with the surgeon in Milwaukee was scheduled for the following week, but we felt that we should get scans done first, in case we were looking at more than a localized lesion. The Oncologist agreed, and also wanted to see Ron. Later that evening, I told the kids. Well, they're not really kids anymore, they are all young adults. Our youngest is 20, and we also have a niece living with us who is 19. It went as well as it could, I suppose. They were all very upset. Our oldest daughter is engaged and planning to marry soon, and I told her that she can't change her plans. Life cannot be put on hold, and I told her that if humanly possible, her dad would be there at her wedding.
On Monday, August 18, we saw the Oncologist. He felt the lesion and said it was about 3 cm., a Stage II at this point. He reminded us, as he always did, that this cancer was particularly difficult to "cure." He said that Ron had done so well for three years, he was hoping that he would be one that would make it. Well, didn't we all. Cancer is such an insidious disease in more ways than one. Once you or someone you love has been diagnosed, every single day you think about it. Oh, that pain, could that be the cancer again? Oh, he's so tired, I wonder if the cancer is back. Every little thing brings the thought of cancer to mind. And with every year that passes with the cancer gone, you get a little bolder. Thinking there's no way it could come back now, look he's made it for three years already. I know in my mind, I was waiting for the 5 year mark. His Oncologist had told us that they never consider this cancer "cured" even after 5 years, but in my mind, that was the marker. I thought that if Ron made 5 years, we would be able to relax and perhaps not think about it every day anymore. Ah well...
Ron had a PET scan on the 19th and a CT scan on the 20th. He also had a routine appointment with his Cardiologist on the 20th, where he had an EKG, which was fine. I (kind of) jokingly told the Cardiologist that the low-fat diet was out the window for now, and that I had asked Ron to please gain about 50 pounds in the next week. I just remember how much weight he lost the first time, and with what sounds like even more surgery on his mouth, I imagine he will lose quite a bit of weight. The doctor said not to worry about diet at this point, just warned him to try not to take in too much salt. Okay, that we can do. Ron's weight at this visit was 183 pounds. The doctor wished us all the best with the upcoming ordeal. On the way home we stopped to get a few groceries, and while in the store, the Oncologist's office called Ron. They wanted to see him the following morning as soon as the office opened up. I of course, being the glass half-empty person, thought this must mean that the PET was worse than expected. Unfortunately, we could not go to the Oncologist that early because our appointment with the surgeon in Milwaukee was for 10:30, so we would be leaving at about 9 a.m. They told Ron to call after our appointment was done in Milwaukee, and we could stop to see the Oncologist after that.
Thursday, August 21. The big appointment with the Surgeon was here. I will just say right now that he was nothing like his brother. And in case I haven't said it before, I like and respect his brother very much. He did the usual exam and went over Ron's history. He said that it would be a 6-8 hour operation, and more than likely Ron would have to have a Fibular Free Flap, probably a tracheotomy, a nasal feeding tube, and that he would be in the hospital for a week. He would set up an appointment with the Plastic Surgeon he works with, who could tell Ron more about the reconstructive aspect of the surgery. We left there and went to see the Oncologist again. As soon as he came in the room he said, "Oh Ron, we will not cure this cancer." He went on say that he had talked to the surgeon, and the surgeon basically asked why we were bothering to do the surgery at all. The Oncologist told him that we were going to do everything we could to save Ron. Wow, that reinforced my first impression of the surgeon, that's for sure. He also told us that Ron would have Chemo again, and that he would discuss with the RO the possibility of further radiation. One of the things Ron is dreading if he has chemo again is, the first thing that hits you when you open the clinic door is the stench of really strong, almost burnt coffee. This aroma permeates every inch of the place. Now, Ron loves coffee, but when you are already nauseous, that smell just further turns your stomach. Even I would leave there nauseated. I can't believe that they haven't had tons of complaints about that, with all of the cancer patients they see every day.
Our appointment with the Plastic Surgeon was on August 28. He was a very personable and funny man, which always makes Ron feel more comfortable. He did an exam and took several photos of Ron's mouth. He agreed with the surgeon that it would be about a 6-8 hour operation, possibly longer. He is fully expecting mandible involvement, which means that they will take the middle section of a Fibula bone from his leg to reconstruct the jawbone. He also said he will probably do a free flap from a forearm to fill in the cheek area. The main incision will be from the center of his bottom lip, down through the chin, and over to the right on his neck so they can then basically "peel" this area back to work. Ugh, I hate even writing that. I just can't imagine the pain he will be in. Ron does love his scars though, so he should have plenty to show off after this. He has a very warped sense of humor and I think he loves the shock factor.
So now we wait. Ron got the call the following week that his surgery was scheduled for September 30. I was quite upset by that. It was a whole month away! I felt that there should have been more of a sense of urgency about it. He was also now feeling quite a bit of pain that was keeping him awake at night. I called the Oncologists office and asked for pain medication. I'm not sure who I talked to, but I had never dealt with her before. She acted like we were drug seeking, and said that they would call in a small prescription, but that if he had more pain, he should call the surgeon. The Oncologist also felt that the date for surgery was not too far away, so we left it at that. I still felt quite nervous about that, though. I did end up calling Ron's original surgeon to ask for more pain medication, and he called Ron back personally to tell him how important it was to stay on top of the pain. He ordered a more than adequate supply of Vicodin, thank God. If they only knew that I usually have to practically order him to take it at all! We are now also smarter about opiates and he is also taking Colace, Dulcolax when needed, and prune juice to prevent problems.
We had one more appointment with the Oncologist on September 25. Ron had blood work done, and the doctor did another examination. He was shocked at how much bigger the lesion was, and felt that now for sure there would be bone involvement. This is where my anger comes from. We have waited for over a month now since he was diagnosed with the recurrence, just giving the cancer plenty of time to grow at will. So now, he will have to have a more extensive surgery that may not have been necessary if they would have done it immediately. Sometimes you just want to scream at somebody, but who??? The Oncologist again said that from now on the cancer will be treated, not cured. He said that the surgeon will probably say again that they got it all, but it will not be true. He said that after treatment, we may get another three years. I so hope he is wrong about this, and that Ron can beat the odds. If it were only depending on attitude, Ron would beat it for sure. He is the most positive, ridiculously up-beat person I know. I am naturally kind of a depressive, moody person and he has made me laugh at least once a day for 25 years now. I can't think of anything better than that...except more of it.
I was not at all prepared for what we were told at this appointment. Later that night Ron said that he knew what was happening but didn't want to tell me. So the surgeon looked at Ron's cheek and said "Oh yeah, that doesn't look good at all. I think it's cancer again." He then showed me the lesion, and I swear it was so big I don't have any idea how I could not see it at home. The surgeon felt that this time there would be bone involved, which would have to be reconstructed. Since the local hospital, where Ron had his original surgery, did not have a Plastic Surgeon available, he told us that he was sending us to his brother in Milwaukee. His brother is also an ENT Surgeon, one of the top in his field. We would consult with him and he would bring in a Plastic Surgeon to do the reconstruction part of the surgery. Ron took all of this in stride, as he always does, but I can say that I left there in shock and just devastated.
When we got home, Ron went out to the barn to talk to his brother. I was sitting on the steps outside having a cry when Ron came up and just patted my shoulder. I said "I just didn't want you to have to go through all this again", and he made a dismissive motion with his hand and said "Ah, this is nothing. I'll be fine." He really amazes me. I don't know how, after all he has been through, he can keep his positive attitude. I then went in and called my sister, who is my best friend and counsel. She always helps me cope and helps me think of things to do first. She suggested that we should call Ron's Oncologist and let him know what was happening, and ask for a PET and CT scan immediately. Ron's appointment with the surgeon in Milwaukee was scheduled for the following week, but we felt that we should get scans done first, in case we were looking at more than a localized lesion. The Oncologist agreed, and also wanted to see Ron. Later that evening, I told the kids. Well, they're not really kids anymore, they are all young adults. Our youngest is 20, and we also have a niece living with us who is 19. It went as well as it could, I suppose. They were all very upset. Our oldest daughter is engaged and planning to marry soon, and I told her that she can't change her plans. Life cannot be put on hold, and I told her that if humanly possible, her dad would be there at her wedding.
On Monday, August 18, we saw the Oncologist. He felt the lesion and said it was about 3 cm., a Stage II at this point. He reminded us, as he always did, that this cancer was particularly difficult to "cure." He said that Ron had done so well for three years, he was hoping that he would be one that would make it. Well, didn't we all. Cancer is such an insidious disease in more ways than one. Once you or someone you love has been diagnosed, every single day you think about it. Oh, that pain, could that be the cancer again? Oh, he's so tired, I wonder if the cancer is back. Every little thing brings the thought of cancer to mind. And with every year that passes with the cancer gone, you get a little bolder. Thinking there's no way it could come back now, look he's made it for three years already. I know in my mind, I was waiting for the 5 year mark. His Oncologist had told us that they never consider this cancer "cured" even after 5 years, but in my mind, that was the marker. I thought that if Ron made 5 years, we would be able to relax and perhaps not think about it every day anymore. Ah well...
Ron had a PET scan on the 19th and a CT scan on the 20th. He also had a routine appointment with his Cardiologist on the 20th, where he had an EKG, which was fine. I (kind of) jokingly told the Cardiologist that the low-fat diet was out the window for now, and that I had asked Ron to please gain about 50 pounds in the next week. I just remember how much weight he lost the first time, and with what sounds like even more surgery on his mouth, I imagine he will lose quite a bit of weight. The doctor said not to worry about diet at this point, just warned him to try not to take in too much salt. Okay, that we can do. Ron's weight at this visit was 183 pounds. The doctor wished us all the best with the upcoming ordeal. On the way home we stopped to get a few groceries, and while in the store, the Oncologist's office called Ron. They wanted to see him the following morning as soon as the office opened up. I of course, being the glass half-empty person, thought this must mean that the PET was worse than expected. Unfortunately, we could not go to the Oncologist that early because our appointment with the surgeon in Milwaukee was for 10:30, so we would be leaving at about 9 a.m. They told Ron to call after our appointment was done in Milwaukee, and we could stop to see the Oncologist after that.
Thursday, August 21. The big appointment with the Surgeon was here. I will just say right now that he was nothing like his brother. And in case I haven't said it before, I like and respect his brother very much. He did the usual exam and went over Ron's history. He said that it would be a 6-8 hour operation, and more than likely Ron would have to have a Fibular Free Flap, probably a tracheotomy, a nasal feeding tube, and that he would be in the hospital for a week. He would set up an appointment with the Plastic Surgeon he works with, who could tell Ron more about the reconstructive aspect of the surgery. We left there and went to see the Oncologist again. As soon as he came in the room he said, "Oh Ron, we will not cure this cancer." He went on say that he had talked to the surgeon, and the surgeon basically asked why we were bothering to do the surgery at all. The Oncologist told him that we were going to do everything we could to save Ron. Wow, that reinforced my first impression of the surgeon, that's for sure. He also told us that Ron would have Chemo again, and that he would discuss with the RO the possibility of further radiation. One of the things Ron is dreading if he has chemo again is, the first thing that hits you when you open the clinic door is the stench of really strong, almost burnt coffee. This aroma permeates every inch of the place. Now, Ron loves coffee, but when you are already nauseous, that smell just further turns your stomach. Even I would leave there nauseated. I can't believe that they haven't had tons of complaints about that, with all of the cancer patients they see every day.
Our appointment with the Plastic Surgeon was on August 28. He was a very personable and funny man, which always makes Ron feel more comfortable. He did an exam and took several photos of Ron's mouth. He agreed with the surgeon that it would be about a 6-8 hour operation, possibly longer. He is fully expecting mandible involvement, which means that they will take the middle section of a Fibula bone from his leg to reconstruct the jawbone. He also said he will probably do a free flap from a forearm to fill in the cheek area. The main incision will be from the center of his bottom lip, down through the chin, and over to the right on his neck so they can then basically "peel" this area back to work. Ugh, I hate even writing that. I just can't imagine the pain he will be in. Ron does love his scars though, so he should have plenty to show off after this. He has a very warped sense of humor and I think he loves the shock factor.
So now we wait. Ron got the call the following week that his surgery was scheduled for September 30. I was quite upset by that. It was a whole month away! I felt that there should have been more of a sense of urgency about it. He was also now feeling quite a bit of pain that was keeping him awake at night. I called the Oncologists office and asked for pain medication. I'm not sure who I talked to, but I had never dealt with her before. She acted like we were drug seeking, and said that they would call in a small prescription, but that if he had more pain, he should call the surgeon. The Oncologist also felt that the date for surgery was not too far away, so we left it at that. I still felt quite nervous about that, though. I did end up calling Ron's original surgeon to ask for more pain medication, and he called Ron back personally to tell him how important it was to stay on top of the pain. He ordered a more than adequate supply of Vicodin, thank God. If they only knew that I usually have to practically order him to take it at all! We are now also smarter about opiates and he is also taking Colace, Dulcolax when needed, and prune juice to prevent problems.
We had one more appointment with the Oncologist on September 25. Ron had blood work done, and the doctor did another examination. He was shocked at how much bigger the lesion was, and felt that now for sure there would be bone involvement. This is where my anger comes from. We have waited for over a month now since he was diagnosed with the recurrence, just giving the cancer plenty of time to grow at will. So now, he will have to have a more extensive surgery that may not have been necessary if they would have done it immediately. Sometimes you just want to scream at somebody, but who??? The Oncologist again said that from now on the cancer will be treated, not cured. He said that the surgeon will probably say again that they got it all, but it will not be true. He said that after treatment, we may get another three years. I so hope he is wrong about this, and that Ron can beat the odds. If it were only depending on attitude, Ron would beat it for sure. He is the most positive, ridiculously up-beat person I know. I am naturally kind of a depressive, moody person and he has made me laugh at least once a day for 25 years now. I can't think of anything better than that...except more of it.
Saturday, September 27, 2008
Now a triple bypass?
Sometime in April 2007, Ron started coming in complaining about shortness of breath. Of course, I immediately thought maybe the cancer was back and had metastasized to his lungs. He wasn't scheduled for another check-up until about 3 months later. I told him we were not waiting that long. He wasn't too happy about that, and thought it was nothing to worry about, but I wasn't convinced. I called his Oncologist and explained his new symptoms. On May 14, he was seen and had blood work done along with a CT scan which showed some calcifications around his heart. The doctor wanted to follow up, so two days later Ron went for Pulmonary Function Tests (which came out fine), and a stress test.
He lasted approximately three minutes on the treadmill before the doctor stopped him because he was so worried he would collapse right then. He was sent for an immediate cardiac catheterization, which showed 3 very bad blockages. He spent the night in the ICU so he could be monitored. The following day, May 17, he was transferred to St. Luke's in Milwaukee by ambulance. On May 18 he had a triple bypass. The surgery went very well, but he came out of it with tubes everywhere. He had three chest tubes along with a central line for instant medication access. He also had a catheter, which I think bothered him more than anything else. He was of course on heavy duty pain medication, so he mostly slept for the first 24 hours. My sister had come up to be with us in the hospital, which was so appreciated. She is an OB RN, so she's a good resource for medical questions. The following day, Ron was moved to the Telemetry floor. He got to the elevator by standing behind a wheelchair and pushing it down the hall probably at least 50 feet. My sister was so impressed by that because she said she has C-section patients that don't even want to get out of bed on the second day.
On May 20 Ron had his chest tubes removed. He had been losing quite a lot of blood through them, so he received a blood transfusion. The following day he got all his IV's removed, and also got another blood transfusion. On the 22nd, the pacemaker wires were removed for the telemetry. Ron came home on the 23rd, only 5 days post-op. Part of his home care was keeping all of his wounds clean and dry. On May 29th, I noticed the left chest tube site was getting a little pussy looking. I called the doctor and was told to leave it open to the air. For the next two days, he ran a fever on and off, and the site became more reddened. On Friday, June 1, he got progressively worse with fever and obvious signs of infection. I tried to call every doctor on his heart team, but could not get ahold of any of them. I finally that evening took him to the local urgent care. They immediately diagnosed an infection along with a pleural effusion. They started him on IV Cipro, and tried to get ahold of his cardiac surgeon. They finally got ahold of him about 2 hours later, and he was transferred by ambulance to St. Luke's again. He spent two nights there receiving IV antibiotics.
Once he got home again, he was very lethargic and weak. He also still continued to run fairly high fevers on and off. He spent a lot of time just sleeping. The pain wasn't too bad at this point, but he has never been one to take pain medication unless I tell him he needs it. He really wanted to get back on his Harley, but the doctor told him to wait two or three more weeks. He really healed fairly quickly, and he said that compared to the cancer treatment, this was nothing. We had another small scare in August when he felt two nodules on his right neck at the site of his previous cancer surgery. He was sent back to the head and neck surgeon who felt sure that they were undisolved stitches. Thank God! I don't think we could take any more bad news at this point.
He lasted approximately three minutes on the treadmill before the doctor stopped him because he was so worried he would collapse right then. He was sent for an immediate cardiac catheterization, which showed 3 very bad blockages. He spent the night in the ICU so he could be monitored. The following day, May 17, he was transferred to St. Luke's in Milwaukee by ambulance. On May 18 he had a triple bypass. The surgery went very well, but he came out of it with tubes everywhere. He had three chest tubes along with a central line for instant medication access. He also had a catheter, which I think bothered him more than anything else. He was of course on heavy duty pain medication, so he mostly slept for the first 24 hours. My sister had come up to be with us in the hospital, which was so appreciated. She is an OB RN, so she's a good resource for medical questions. The following day, Ron was moved to the Telemetry floor. He got to the elevator by standing behind a wheelchair and pushing it down the hall probably at least 50 feet. My sister was so impressed by that because she said she has C-section patients that don't even want to get out of bed on the second day.
On May 20 Ron had his chest tubes removed. He had been losing quite a lot of blood through them, so he received a blood transfusion. The following day he got all his IV's removed, and also got another blood transfusion. On the 22nd, the pacemaker wires were removed for the telemetry. Ron came home on the 23rd, only 5 days post-op. Part of his home care was keeping all of his wounds clean and dry. On May 29th, I noticed the left chest tube site was getting a little pussy looking. I called the doctor and was told to leave it open to the air. For the next two days, he ran a fever on and off, and the site became more reddened. On Friday, June 1, he got progressively worse with fever and obvious signs of infection. I tried to call every doctor on his heart team, but could not get ahold of any of them. I finally that evening took him to the local urgent care. They immediately diagnosed an infection along with a pleural effusion. They started him on IV Cipro, and tried to get ahold of his cardiac surgeon. They finally got ahold of him about 2 hours later, and he was transferred by ambulance to St. Luke's again. He spent two nights there receiving IV antibiotics.
Once he got home again, he was very lethargic and weak. He also still continued to run fairly high fevers on and off. He spent a lot of time just sleeping. The pain wasn't too bad at this point, but he has never been one to take pain medication unless I tell him he needs it. He really wanted to get back on his Harley, but the doctor told him to wait two or three more weeks. He really healed fairly quickly, and he said that compared to the cancer treatment, this was nothing. We had another small scare in August when he felt two nodules on his right neck at the site of his previous cancer surgery. He was sent back to the head and neck surgeon who felt sure that they were undisolved stitches. Thank God! I don't think we could take any more bad news at this point.
Wednesday, September 10, 2008
Aftermath...
Ron's last day of treatment was October 28, 2005. While this day was certainly a cause for celebration, it was by no means the end of his problems. In fact, he actually had his worst days in the weeks following. He continued to be in a lot of pain, which meant he was still on the Fentanyl patches, also taking either Tylenol 3's or Vicodin. Now, this is not always explained to patients, but that many painkillers have a bad side effect of bowel impaction. I will try not to get too graphic, but I think caregivers should know that this may happen. Ron did, in fact, get impacted and I had to "assist" him in relieving it. Thankfully, I used to be a Nurses Aide, so I was equipped to handle this. It was not a pleasant experience for either of us, but when your loved one is in pain, you do whatever you can to relieve that pain. He had been taking stool softeners all along to try to prevent this, but they did not. So I'm just pointing out that this may happen. And, as you can imagine, that only adds to any other discomfort that is happening.
Ron also vomited more in the two weeks following treatment, for some reason. He lost a total of about 50 pounds by the time he was all done. He was still also going in for blood tests, and continued to receive Aranesp for low RBC's and Neupogen for low WBC's. I was quite worried at this point about his low immunity, and the possibility of him catching something from either myself, who works in a High School and is constantly around sick teenagers, or one of our own teenagers being ill. I think if he had caught even a common cold at that time, he would have ended up in the hospital. Thankfully, that didn't happen.
By the middle of November, his blood work started coming back in the normal range. He reached his lowest weight of 167. Before cancer, his weight was about 225. He had huge biceps from farming and a fair sized "beer belly", even though he didn't drink all that much beer. At treatments end, he had really no muscle mass left. It would be a long road to build himself up again. The first week of December, he had both PET and CT scans, and they both came back clear! YAY! Looks like all the pain was worth it.
The rest of December and January was spent with the Dentist and Oral Surgeon preparing his mouth for dentures. He had to have some bone shaved from his gums, and let that heal. He got his dentures February 1. His Port and PEG were removed on February 5, 2005. That was a good day, to get that PEG removed. As much as we know he needed it, it was a constant source of irritation to deal with. Two weeks after getting and wearing the dentures, he had a check at the Dentist, and he noticed a "spot" on the floor of Ron's mouth. He was told not to wear the bottom denture to let it heal. On March 1st, at another check, the Dentist found another "spot". Now he was sent to the Oral Surgeon, who in turn sent him to his ENT Surgeon that did the original surgery. It was decided that he could take no chances, so another surgery was done on March 13. Thankfully, it was completely benign!
For the next year, Ron went for CT and PET scans every three months. Nothing ever showed up on any of them, thank God. He continued to struggle with the teeth issue. He now only wears the upper denture, and that is usually only when I "make" him. He would be just as happy to not wear them at all, and can even eat steak with no teeth. Don't ask me how, I don't think I could do that! So 2006 was a year of adapting to a new normal, healing, getting clear scans, frequent doctor visits to make sure no other issues cropped up, and Ron getting back to full-time farming. Oh, by the way, his new hip was working great now, too! So glad he had that hip replacement.
Ron also vomited more in the two weeks following treatment, for some reason. He lost a total of about 50 pounds by the time he was all done. He was still also going in for blood tests, and continued to receive Aranesp for low RBC's and Neupogen for low WBC's. I was quite worried at this point about his low immunity, and the possibility of him catching something from either myself, who works in a High School and is constantly around sick teenagers, or one of our own teenagers being ill. I think if he had caught even a common cold at that time, he would have ended up in the hospital. Thankfully, that didn't happen.
By the middle of November, his blood work started coming back in the normal range. He reached his lowest weight of 167. Before cancer, his weight was about 225. He had huge biceps from farming and a fair sized "beer belly", even though he didn't drink all that much beer. At treatments end, he had really no muscle mass left. It would be a long road to build himself up again. The first week of December, he had both PET and CT scans, and they both came back clear! YAY! Looks like all the pain was worth it.
The rest of December and January was spent with the Dentist and Oral Surgeon preparing his mouth for dentures. He had to have some bone shaved from his gums, and let that heal. He got his dentures February 1. His Port and PEG were removed on February 5, 2005. That was a good day, to get that PEG removed. As much as we know he needed it, it was a constant source of irritation to deal with. Two weeks after getting and wearing the dentures, he had a check at the Dentist, and he noticed a "spot" on the floor of Ron's mouth. He was told not to wear the bottom denture to let it heal. On March 1st, at another check, the Dentist found another "spot". Now he was sent to the Oral Surgeon, who in turn sent him to his ENT Surgeon that did the original surgery. It was decided that he could take no chances, so another surgery was done on March 13. Thankfully, it was completely benign!
For the next year, Ron went for CT and PET scans every three months. Nothing ever showed up on any of them, thank God. He continued to struggle with the teeth issue. He now only wears the upper denture, and that is usually only when I "make" him. He would be just as happy to not wear them at all, and can even eat steak with no teeth. Don't ask me how, I don't think I could do that! So 2006 was a year of adapting to a new normal, healing, getting clear scans, frequent doctor visits to make sure no other issues cropped up, and Ron getting back to full-time farming. Oh, by the way, his new hip was working great now, too! So glad he had that hip replacement.
Saturday, September 6, 2008
Mid-treatment
Monday, October 3, 2005: Saw the Radiation Oncologist before his IMRT. Ron's mouth is full of small ulcers (called muscositis) from the radiation. Between the nausea and the mouth sores, he is finding it much harder to eat anything. Even drinking liquid hurts. The RO told us that now is the time to depend on the PEG tube to get most of his nutrition. The RO also started Ron on Triple Elixir to swish in his mouth before drinking or taking pills, etc. It consists of xylocaine to numb the area, Zovirax to heal the sores, and Maalox to coat the mouth and throat. Ron said it tastes horrible, so sometimes he just swishes and spits instead of swallowing it, but it does help numb the pain for a little while. He is feeling much more tired and spent these days. Because of his pain though, he does not sleep much. He is still only taking Vicodin or Tylenol 3 and then only when I make him. He is a stubborn one. He continues to do some chores, but by the time we get home from radiation, he is just worn out so he isn't doing the evening milking anymore. Thank goodness he farms with his brother, nephew, and our son.
Wednesday, October 5: Second Chemo. He is getting 20% less Cisplatin this time because his blood work is showing low WBC's and RBC's. This is not at all unusual--just another side effect of chemotherapy. If his numbers get too low, there are medications he can get to help.
Sunday the 9th, Ron is halfway through treatment! He is now down about 30 pounds. His bloodwork on October 12 showed an even lower WBC count, so he was given a shot of Aranesp. On the 14th I called and asked for a prescription for Ambien so he could get some sleep. He had a fairly good weekend. The following week passed fairly normally with IMRT every day, but his mouth was getting worse. He was getting more sores and now white patches also.
Monday, October 24: We saw a different doctor before radiation. He diagnosed Ron with thrush in his mouth, so he was given Diflucan for that. He also prescribed Fentanyl patches for the pain. This worried me a little because I know how powerful Fentanyl is, but it was a godsend. For the first time, I think Ron actually got some pain relief. He was also given Gelclair for his mucositis. These were little miracle packets! The Gelclair actually formed a kind of barrier in his mouth, which allowed him to drink and eat some things much easier. I was kind of glad we had to see a different doctor. I'm not sure his original doctor would have given him so much relief with that one appointment!
Wednesday, October 26, 2005: Last Chemo!! He is given 20% less Cisplatin this time, also. The following morning his blood work showed low WBC's again, so he was given another Aranesp shot. He also got his IV fluids. Friday the 28th was his last IMRT! He got a certificate for completing treatment, and got to ring the bell to celebrate the end! My sister actually came from a different state to be here for the occasion. She has been such a source of strength for me throughout this whole ordeal. She is an RN, and has been there to give sound advice when needed, or just to listen to me cry when I needed to. I could never thank her enough for the support and love she has given to all of us.
Now treatment is over...it's time to start healing!
Wednesday, October 5: Second Chemo. He is getting 20% less Cisplatin this time because his blood work is showing low WBC's and RBC's. This is not at all unusual--just another side effect of chemotherapy. If his numbers get too low, there are medications he can get to help.
Sunday the 9th, Ron is halfway through treatment! He is now down about 30 pounds. His bloodwork on October 12 showed an even lower WBC count, so he was given a shot of Aranesp. On the 14th I called and asked for a prescription for Ambien so he could get some sleep. He had a fairly good weekend. The following week passed fairly normally with IMRT every day, but his mouth was getting worse. He was getting more sores and now white patches also.
Monday, October 24: We saw a different doctor before radiation. He diagnosed Ron with thrush in his mouth, so he was given Diflucan for that. He also prescribed Fentanyl patches for the pain. This worried me a little because I know how powerful Fentanyl is, but it was a godsend. For the first time, I think Ron actually got some pain relief. He was also given Gelclair for his mucositis. These were little miracle packets! The Gelclair actually formed a kind of barrier in his mouth, which allowed him to drink and eat some things much easier. I was kind of glad we had to see a different doctor. I'm not sure his original doctor would have given him so much relief with that one appointment!
Wednesday, October 26, 2005: Last Chemo!! He is given 20% less Cisplatin this time, also. The following morning his blood work showed low WBC's again, so he was given another Aranesp shot. He also got his IV fluids. Friday the 28th was his last IMRT! He got a certificate for completing treatment, and got to ring the bell to celebrate the end! My sister actually came from a different state to be here for the occasion. She has been such a source of strength for me throughout this whole ordeal. She is an RN, and has been there to give sound advice when needed, or just to listen to me cry when I needed to. I could never thank her enough for the support and love she has given to all of us.
Now treatment is over...it's time to start healing!
Saturday, August 30, 2008
Chemotherapy and Radiation...
I made an error in my previous post. The oral cancer staging was T1N2M0. The T1 actually means that his primary tumor was 2 cm. or less. The rest of the explanations were correct.
One thing to remember before treatment begins is that it is very important to have prescriptions filled and ready at home for side effects from treatment. We already had pain medication available, and the doctor also prescribed Compazine and Ativan for nausea and anxiety. Also, as Ron's caregiver, I am not ashamed to say that at the start of this nightmare, I went to my own doctor and asked for Xanax to help me cope with the really bad days. I knew I would need some help in holding myself together for Ron and for our kids, and it really did help. I am not in any way comparing my problems to the ones Ron faced, but sometimes I think that caregivers don't look after their own well-being. Do not be ashamed or afraid to ask for help if you need it!
Wednesday, September 14, 2005 was Ron's first day of treatment. The day started at 8 a.m. for his first Chemo session. If I remember correctly, this took about 4-5 hours in total. Then we drove about 45 minutes away to another Vince Lombardi clinic for the Radiation. An hour before the IMRT, he was given Amifostine IV to help protect his salivary glands. Our long day ended at about 4 p.m. He had no ill effects from treatment at this early stage.
One thing that helped Ron take his mind off of what was happening during chemo was listening to his favorite music. My sister had sent Ron an entire box full of goodies when he was diagnosed, including a Walkman, various CD's, Live Strong bracelets for the whole family, an inspirational book, and several do rags for when he lost his hair. (He is a Harley rider, so he always wears do rags anyway when he's riding). He never did lose a hair on his head!
September 15, we were at the chemo clinic in the morning for IV fluids. This was a normal part of his treatment. The chemo is so hard on the kidneys that they like it to be flushed out as soon as possible. Ron likes to drink Gatorade also, which helps keep his electrolytes balanced. He has been told to take Compazine about a half hour before each IMRT, which he did during the drive over. Had his Amifostine and radiation with no problems. Later that evening, he started feeling very nauseous. It is a good thing he has the PEG tube in when he doesn't feel like eating anything. Both the chemo clinic and the radiation clinic are very good about giving us plenty of Ensure and Boost to see us through, so we don't actually have to go out and buy it. I guess we're really paying for it anyway, though! Ron actually threw up for the first time on the 16th after his radiation. I was waiting in the car, and I saw him come out of the building. All of a sudden he bent over and threw up in their beautifully landscaped flowerbed! Oh, I felt so bad for him. He had a miserable ride home, holding on to a bucket, and kind of dry heaving. Got home and took more Compazine, and later an Ativan to try to help him sleep.
I think we were both surprised at how soon he experienced the bad stuff we feared. It is such a helpless feeling. I can't really make it better. Yes, I can fix him soup, or give him medication, but other than that, I don't know what to do. Just kind of a miserable night. Thank goodness it was Friday, so he had two days off to look forward to. He was still doing some farming during this time too, when he felt well enough to work. I would get upset at how much he was doing. I thought he should be resting up and conserving his energy, but this is the guy I married. He has never been one to sit still no matter what, and cancer wasn't going to stop him either!
The week of September 19-23 brought some new problems. The Compazine was failing to keep the nausea at bay, so he was given Zofran to try. That didn't work either, so he was told that he could try Kytril. At the time I believe Kytril was fairly new, and the cost was about $100 for ONE pill! Thankfully, we were given enough samples for Ron to take, because he had no prescription insurance. He was also given Salagen this week, because he was beginning to experience dry mouth.
He had two very bad nights this week following radiation. On Thursday and Friday, he had shaking chills and started running a fever. I put him to bed and buried him in blankets, and the bed just shook. I alternated giving him Tylenol and Ibuprofen every 4 hours and felt helpless in between. Of course the worst night was Friday. I called the Lombardi radiation clinic first, and got the answering service. They told me to call the chemo clinic, and then I got THEIR answering service. Their advice=Tylenol. Gee, thanks. I never would have thought of that. I was about ready to bundle him up in the car and drive him to the ER when his fever started responding. I was not happy at all that not one of his doctors called to check on him. Saturday and Sunday he continued to have occasional fevers. I was worried that he may have gotten the flu or some kind of virus because his resistance was so low.
On Monday, the 26th, we met with his Radiation Oncologist before his IMRT. He told us that he thought the shaking chills and fevers were a reaction to the Amifostine, so that was discontinued. That must have been the case, because he never had the problem again. I also told the doctor about my problem on Friday night trying to get ahold of him. He said that never should have happened, that he should have been called immediately, and that he would make sure the answering service would not respond that way again, which I appreciated.
So far Ron has lost 20 pounds. He is still eating when he isn't too nauseated. He sticks to soft foods like scrambled eggs, mashed potatoes and gravy, or rice with gravy, and meat that has been cooked until it's very soft. Also puddings, Jello, cottage cheese, milkshakes. Usually after radiation if he isn't too nauseated, I drive through a fast food restaurant and get him either a shake or a sundae. I also try to get him to drink Carnation Instant Breakfast several times a day for the calories. He supplements with his PEG tube every day also. The easiest way he has found is to use a large syringe without the barrel. He just pours the Ensure or Boost in and lets gravity take over. It takes only a few minutes to get each can in this way. It is always followed by bottled water to flush the tube. His mouth is getting very sore at this point, and his neck very red and dry. He was given special lotion to coat his neck after the radiation. He can't have any lotion on his skin during treatments. Two weeks down, five to go!
One thing to remember before treatment begins is that it is very important to have prescriptions filled and ready at home for side effects from treatment. We already had pain medication available, and the doctor also prescribed Compazine and Ativan for nausea and anxiety. Also, as Ron's caregiver, I am not ashamed to say that at the start of this nightmare, I went to my own doctor and asked for Xanax to help me cope with the really bad days. I knew I would need some help in holding myself together for Ron and for our kids, and it really did help. I am not in any way comparing my problems to the ones Ron faced, but sometimes I think that caregivers don't look after their own well-being. Do not be ashamed or afraid to ask for help if you need it!
Wednesday, September 14, 2005 was Ron's first day of treatment. The day started at 8 a.m. for his first Chemo session. If I remember correctly, this took about 4-5 hours in total. Then we drove about 45 minutes away to another Vince Lombardi clinic for the Radiation. An hour before the IMRT, he was given Amifostine IV to help protect his salivary glands. Our long day ended at about 4 p.m. He had no ill effects from treatment at this early stage.
One thing that helped Ron take his mind off of what was happening during chemo was listening to his favorite music. My sister had sent Ron an entire box full of goodies when he was diagnosed, including a Walkman, various CD's, Live Strong bracelets for the whole family, an inspirational book, and several do rags for when he lost his hair. (He is a Harley rider, so he always wears do rags anyway when he's riding). He never did lose a hair on his head!
September 15, we were at the chemo clinic in the morning for IV fluids. This was a normal part of his treatment. The chemo is so hard on the kidneys that they like it to be flushed out as soon as possible. Ron likes to drink Gatorade also, which helps keep his electrolytes balanced. He has been told to take Compazine about a half hour before each IMRT, which he did during the drive over. Had his Amifostine and radiation with no problems. Later that evening, he started feeling very nauseous. It is a good thing he has the PEG tube in when he doesn't feel like eating anything. Both the chemo clinic and the radiation clinic are very good about giving us plenty of Ensure and Boost to see us through, so we don't actually have to go out and buy it. I guess we're really paying for it anyway, though! Ron actually threw up for the first time on the 16th after his radiation. I was waiting in the car, and I saw him come out of the building. All of a sudden he bent over and threw up in their beautifully landscaped flowerbed! Oh, I felt so bad for him. He had a miserable ride home, holding on to a bucket, and kind of dry heaving. Got home and took more Compazine, and later an Ativan to try to help him sleep.
I think we were both surprised at how soon he experienced the bad stuff we feared. It is such a helpless feeling. I can't really make it better. Yes, I can fix him soup, or give him medication, but other than that, I don't know what to do. Just kind of a miserable night. Thank goodness it was Friday, so he had two days off to look forward to. He was still doing some farming during this time too, when he felt well enough to work. I would get upset at how much he was doing. I thought he should be resting up and conserving his energy, but this is the guy I married. He has never been one to sit still no matter what, and cancer wasn't going to stop him either!
The week of September 19-23 brought some new problems. The Compazine was failing to keep the nausea at bay, so he was given Zofran to try. That didn't work either, so he was told that he could try Kytril. At the time I believe Kytril was fairly new, and the cost was about $100 for ONE pill! Thankfully, we were given enough samples for Ron to take, because he had no prescription insurance. He was also given Salagen this week, because he was beginning to experience dry mouth.
He had two very bad nights this week following radiation. On Thursday and Friday, he had shaking chills and started running a fever. I put him to bed and buried him in blankets, and the bed just shook. I alternated giving him Tylenol and Ibuprofen every 4 hours and felt helpless in between. Of course the worst night was Friday. I called the Lombardi radiation clinic first, and got the answering service. They told me to call the chemo clinic, and then I got THEIR answering service. Their advice=Tylenol. Gee, thanks. I never would have thought of that. I was about ready to bundle him up in the car and drive him to the ER when his fever started responding. I was not happy at all that not one of his doctors called to check on him. Saturday and Sunday he continued to have occasional fevers. I was worried that he may have gotten the flu or some kind of virus because his resistance was so low.
On Monday, the 26th, we met with his Radiation Oncologist before his IMRT. He told us that he thought the shaking chills and fevers were a reaction to the Amifostine, so that was discontinued. That must have been the case, because he never had the problem again. I also told the doctor about my problem on Friday night trying to get ahold of him. He said that never should have happened, that he should have been called immediately, and that he would make sure the answering service would not respond that way again, which I appreciated.
So far Ron has lost 20 pounds. He is still eating when he isn't too nauseated. He sticks to soft foods like scrambled eggs, mashed potatoes and gravy, or rice with gravy, and meat that has been cooked until it's very soft. Also puddings, Jello, cottage cheese, milkshakes. Usually after radiation if he isn't too nauseated, I drive through a fast food restaurant and get him either a shake or a sundae. I also try to get him to drink Carnation Instant Breakfast several times a day for the calories. He supplements with his PEG tube every day also. The easiest way he has found is to use a large syringe without the barrel. He just pours the Ensure or Boost in and lets gravity take over. It takes only a few minutes to get each can in this way. It is always followed by bottled water to flush the tube. His mouth is getting very sore at this point, and his neck very red and dry. He was given special lotion to coat his neck after the radiation. He can't have any lotion on his skin during treatments. Two weeks down, five to go!
Friday, August 29, 2008
In the beginning...
Welcome! This will be a new experience for me. My name is Lori and my husband is Ron. He was diagnosed in 2005 with Oral cancer. Specifically, Squamous Cell Carcinoma of the tongue, stage IV. T1N2M0. I believe this means 1 primary tumor, 2 lymph nodes involved, with no metastases. We are gearing up to fight the oral cancer fight again, so I thought I would start a blog about it. I wish I had known 3 years ago to keep a record of all of Ron's good and bad days. There is so much I have forgotten (or blocked out!) about that time in our lives.
Ron's story began in the spring of 2005. We had been married for 20+ years at that point, and he had always had a limp. His right hip really began hurting and I finally talked him into going to an orthopedist to find out what was wrong. It turns out that when he was a teenager, he got something called Legg–Calvé–Perthes disease, which causes bone death in the hip. The doctor was surprised that Ron could walk at all, as the ball joint of the hip was pretty much gone. He was scheduled for a hip replacement on June 20, 2005. In preparation for the surgery, he was sent to get a complete physical. Now remember, we had been married for over 20 years at this point and I think I had forced him to go to a doctor maybe twice in all that time for illnesses. He is a stubborn farmer whose favorite line was (said in the appropriate accent) "I don't need no stinking doctors." This doctor, who I would love to name as he saved Ron's life, saw an area on the right side of his tongue that looked suspicious. He told Ron that he was sending him to see a Head and Neck surgeon soon after his hip surgery. He had his hip replacement, which went very well, and he came home to recover.
On July 20, 2005, Ron saw the Head and neck surgeon who took a biopsy of the spot. Ron got a phone call the next afternoon and was told that he had malignant squamous cell carcinoma. I will never forget that afternoon. Here he was, still hobbling around with crutches, and now facing an actual life or death situation. July 27 he had an MRI of the head and neck. We met with the surgeon on July 29 and were told that the MRI showed the lesion on the tongue along with some enlarged lymph nodes on the right side of the neck. The treatment plan would start with surgery. Wednesday, August 3, 2005 Ron had a partial glossectomy (about a third of the tongue removed), along with a partial neck dissection. Pathology showed clear margins on the tongue and 2 of 15 lymph nodes positive for SCC. Ron did amazingly well after surgery, and came home the next afternoon. On August 10, we had a follow-up appointment with his Orthopedic Surgeon who took a new X-ray of his right leg and said that his recovery may be somewhat delayed because he now had a stress fracture from the insertion of the rod into his femur!! He then made a joke that I did not appreciate at the time, but it made Ron laugh. Upon hearing that Ron now had cancer, the doctor said "Hey, I told you the replacement would last for the rest of your life--now it will for sure!" Okay, a little too soon for me to be laughing about this cancer!
Anyway, Ron continued to do very well recovering from both surgeries. On August 16 we went to meet his Radiation Oncologist. This is where my world fell apart. I think things just came to a head that day. As I sat there listening to what they would have to do to my husband, I started crying. I didn't want to, I wanted to stay strong for Ron, but everything just sounded so horrible to me. The doctor said first we will have to send you to the dentist to check your teeth, because the radiation will weaken the jaw bone and dry out your mouth, which may cause a lot of problems keeping your teeth. Then you will go have a Port inserted in your chest to receive the chemo and where they can draw blood without having to poke you multiple times. Then you will have a PEG tube inserted into your stomach, because you will not be able to eat or drink normally because of the radiation effects on the mouth. (This is where I lost it. That PEG just sounded so horrible to me. Now, I thank God he had it because even with it, he lost over 50 pounds over the course of treatment). He would have IMRT (Intensity Modulated Radiation Therapy) radiation Monday through Friday for 7 weeks. During this time, he would also get chemotherapy. We would have to discuss which chemo he wanted with the Chemotherapy Oncologist. We left the RO's office with an appointment for a PET/CT fusion. Ron was told to be ready to begin treatments in early September.
On August 17 Ron went to the dentist, where he found out that he had gum disease and several cavities. The dentist sent him to an oral surgeon, and because he was facing radiation, it was suggested that all of his teeth be removed. If they tried to save the teeth, he would have had to have many, many treatments in a Hyperbaric Oxygen chamber. It just seemed like more trouble down the road, so Ron agreed to have all of his remaining 28 teeth pulled the following day, on August 18. (OK, side rant here: before extracting the teeth, Ron was sent back to the regular "dentist" to have molds made for dentures. The dentist took what seemed to be 100 pictures of his smile from every angle possible, and said that the dentures would look like his normal teeth. HA! When we got them fitted about 6 months later they were the big, boxy, impossibly white teeth that are never seen in nature! End of rant.) On August 19, we had the appointment with the Chemotherapy Oncologist. The choice given was 3 treatments of Cisplatin (every three weeks), or Carboplatin with Taxol given every week for the 7 weeks. It was explained that the Cisplatin effects would be just as bad, but since it was given every 3 weeks, there would be more time to recover in between treatments. Ron decided that he would rather puke every three weeks as opposed to weekly, so he went with the Cisplatin. Ron would also be given Amifostine before his radiation to minimize the damage to his salivary glands.
We had a whole ten days off with no appointments except for removal of stitches from his mouth and continued physical therapy for his hip. On August 31, we went up to St. Luke's in Milwaukee for the PET/CT. September 1 he had the Port placement as an out-patient at the local hospital. The following day the PEG tube was placed, also out-patient. On September 6 he was fitted for his mask for radiation. What an instrument of torture this thing was! I am claustrophobic, so it gave me the heebies just imagining having that thing strapped on my face and being screwed down to the table! Thank God it didn't seem to bother Ron! On the 7th, we went to PEG tube teaching to learn how to care for his new appendage. Ron got a phone call later that day saying that something happened and he would have to go back to St. Luke's to repeat the PET the following day, the 8th. September 9 was another appointment with the Chemotherapy Oncologist to set up his chemo. The 13th, he had his radiation dry run to set correct position, etc. More to come...
Ron's story began in the spring of 2005. We had been married for 20+ years at that point, and he had always had a limp. His right hip really began hurting and I finally talked him into going to an orthopedist to find out what was wrong. It turns out that when he was a teenager, he got something called Legg–Calvé–Perthes disease, which causes bone death in the hip. The doctor was surprised that Ron could walk at all, as the ball joint of the hip was pretty much gone. He was scheduled for a hip replacement on June 20, 2005. In preparation for the surgery, he was sent to get a complete physical. Now remember, we had been married for over 20 years at this point and I think I had forced him to go to a doctor maybe twice in all that time for illnesses. He is a stubborn farmer whose favorite line was (said in the appropriate accent) "I don't need no stinking doctors." This doctor, who I would love to name as he saved Ron's life, saw an area on the right side of his tongue that looked suspicious. He told Ron that he was sending him to see a Head and Neck surgeon soon after his hip surgery. He had his hip replacement, which went very well, and he came home to recover.
On July 20, 2005, Ron saw the Head and neck surgeon who took a biopsy of the spot. Ron got a phone call the next afternoon and was told that he had malignant squamous cell carcinoma. I will never forget that afternoon. Here he was, still hobbling around with crutches, and now facing an actual life or death situation. July 27 he had an MRI of the head and neck. We met with the surgeon on July 29 and were told that the MRI showed the lesion on the tongue along with some enlarged lymph nodes on the right side of the neck. The treatment plan would start with surgery. Wednesday, August 3, 2005 Ron had a partial glossectomy (about a third of the tongue removed), along with a partial neck dissection. Pathology showed clear margins on the tongue and 2 of 15 lymph nodes positive for SCC. Ron did amazingly well after surgery, and came home the next afternoon. On August 10, we had a follow-up appointment with his Orthopedic Surgeon who took a new X-ray of his right leg and said that his recovery may be somewhat delayed because he now had a stress fracture from the insertion of the rod into his femur!! He then made a joke that I did not appreciate at the time, but it made Ron laugh. Upon hearing that Ron now had cancer, the doctor said "Hey, I told you the replacement would last for the rest of your life--now it will for sure!" Okay, a little too soon for me to be laughing about this cancer!
Anyway, Ron continued to do very well recovering from both surgeries. On August 16 we went to meet his Radiation Oncologist. This is where my world fell apart. I think things just came to a head that day. As I sat there listening to what they would have to do to my husband, I started crying. I didn't want to, I wanted to stay strong for Ron, but everything just sounded so horrible to me. The doctor said first we will have to send you to the dentist to check your teeth, because the radiation will weaken the jaw bone and dry out your mouth, which may cause a lot of problems keeping your teeth. Then you will go have a Port inserted in your chest to receive the chemo and where they can draw blood without having to poke you multiple times. Then you will have a PEG tube inserted into your stomach, because you will not be able to eat or drink normally because of the radiation effects on the mouth. (This is where I lost it. That PEG just sounded so horrible to me. Now, I thank God he had it because even with it, he lost over 50 pounds over the course of treatment). He would have IMRT (Intensity Modulated Radiation Therapy) radiation Monday through Friday for 7 weeks. During this time, he would also get chemotherapy. We would have to discuss which chemo he wanted with the Chemotherapy Oncologist. We left the RO's office with an appointment for a PET/CT fusion. Ron was told to be ready to begin treatments in early September.
On August 17 Ron went to the dentist, where he found out that he had gum disease and several cavities. The dentist sent him to an oral surgeon, and because he was facing radiation, it was suggested that all of his teeth be removed. If they tried to save the teeth, he would have had to have many, many treatments in a Hyperbaric Oxygen chamber. It just seemed like more trouble down the road, so Ron agreed to have all of his remaining 28 teeth pulled the following day, on August 18. (OK, side rant here: before extracting the teeth, Ron was sent back to the regular "dentist" to have molds made for dentures. The dentist took what seemed to be 100 pictures of his smile from every angle possible, and said that the dentures would look like his normal teeth. HA! When we got them fitted about 6 months later they were the big, boxy, impossibly white teeth that are never seen in nature! End of rant.) On August 19, we had the appointment with the Chemotherapy Oncologist. The choice given was 3 treatments of Cisplatin (every three weeks), or Carboplatin with Taxol given every week for the 7 weeks. It was explained that the Cisplatin effects would be just as bad, but since it was given every 3 weeks, there would be more time to recover in between treatments. Ron decided that he would rather puke every three weeks as opposed to weekly, so he went with the Cisplatin. Ron would also be given Amifostine before his radiation to minimize the damage to his salivary glands.
We had a whole ten days off with no appointments except for removal of stitches from his mouth and continued physical therapy for his hip. On August 31, we went up to St. Luke's in Milwaukee for the PET/CT. September 1 he had the Port placement as an out-patient at the local hospital. The following day the PEG tube was placed, also out-patient. On September 6 he was fitted for his mask for radiation. What an instrument of torture this thing was! I am claustrophobic, so it gave me the heebies just imagining having that thing strapped on my face and being screwed down to the table! Thank God it didn't seem to bother Ron! On the 7th, we went to PEG tube teaching to learn how to care for his new appendage. Ron got a phone call later that day saying that something happened and he would have to go back to St. Luke's to repeat the PET the following day, the 8th. September 9 was another appointment with the Chemotherapy Oncologist to set up his chemo. The 13th, he had his radiation dry run to set correct position, etc. More to come...
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