"Palliative care (from Latin palliare, to cloak) is any form of medical care or treatment that concentrates on reducing the severity of disease symptoms, rather than striving to halt, delay or reverse progression of the disease itself or provide a cure". We have now entered the palliative portion of Ron's care. We met with the MO on Thursday morning. He said that the PET scan showed that the main tumor, in Ron's right cheek, which was less than 1 cm. on April 9, is now about 5 cm. In addition, there is involvement in his left neck nodes, and his trachea. What this boils down to is that there is no longer a surgical or radiation option. Ron started Erbitux that morning. The first infusion lasted about 3 hours, but the remaining weekly infusions will only take about an hour. Erbitux is a form of chemotherapy called targeted therapy. It actually is a highly active IgG1 monoclonal antibody targeting the epidermal growth factor receptor (EGFR).
Erbitux has been well proven to shrink tumors. This is the goal of Ron's care at this point. We would like to be able to buy as much quality time as we can. We all accept that Ron will not be cured of this horrible cancer. There is a possibility that it may have metastasized to his brain. He will go for a brain MRI on Tuesday afternoon. He has been having a lot of bad headaches lately, but we don't know why. After his first Erbitux treatment, he was completely wiped out. I hope that he will be able to handle them better in the future. He is now on Fentanyl patches in addition to his Roxicet for pain. This seems to have really helped so far. He also used the Fentanyl patches when he was going through treatment in 2005, and they worked very well in controlling his pain. Ron did throw up in the middle of the night after the first treatment, so he also started taking Compazine for nausea.
Palliative care is not the same as hospice care. With palliative care, we are still doing whatever treatment we can to keep Ron well for as long as possible. We are not ready to give up yet! If Ron reaches that point then we will involve hospice, but hopefully that won't be for a long, long time. The MO told us that with the Erbitux, patients who get an acne-like rash are responding well to the treatment, so pray for pimples!
In Honor of My Husband, Ron
Showing posts with label PET scan. Show all posts
Showing posts with label PET scan. Show all posts
Saturday, April 25, 2009
Thursday, April 16, 2009
Chemo to start...
This Monday was Ron's outpatient surgery to get his PORT for chemo. It turned out to be more involved than that. The "cyst" on his behind turned out to be a "fistula in ano", which is a little more serious than a cyst. I am not going to go into great detail, if you want to know more you can look it up. I don't want this to get too graphic. The surgeon opened and drained the area, so he came home with more wounds than we thought he would. The poor guy just can't seem to catch a break. It should resolve itself without too much more intervention. The only worry is that once Ron starts chemo, he will me immuno-compromised, and open to any infections, so that could play a part.
Tuesday was supposed to be his PET scan at Burlington but the machine was not working, so they made us an appointment bright and early Thursday morning at a different hospital. After his PET scan, we came home so he could "eat", and then went to our chemo training appointment. It turned out that he will not be wearing a pack at home at all. He will be starting Erbitux next Thursday, the 23rd. It will then be a weekly process, just until...
It depends on his reaction (or lack of) to the chemo. The MO may also add Cisplatin to the Erbitux. That will depend on the reading of the PET scan from today. The MO is gone for this week, so I'm sure we won't hear anything about the PET results until next week.
On another note, I was surprised this week to find out that our sweet little niece is planning a fundraiser for Ron over Memorial Day weekend at Piggly Wiggly in Lake Geneva. There will be a brat wagon set up for three days, so if you live close by, come out and eat a brat for Ron!
There is not much more to report on his health. He is just very worn out, but he can't sleep for very long at a time, so he is up and down all day and night. I still don't think he takes enough of his pain medication, but he is stubborn! Even though I have had both Doctors and Nurses explain the pain cycle, and how much easier it is to control if you stay on top of the pain, and don't wait until you're in agony to take something, he will not listen. He may need a swift kick in the sore butt :)!
Tuesday was supposed to be his PET scan at Burlington but the machine was not working, so they made us an appointment bright and early Thursday morning at a different hospital. After his PET scan, we came home so he could "eat", and then went to our chemo training appointment. It turned out that he will not be wearing a pack at home at all. He will be starting Erbitux next Thursday, the 23rd. It will then be a weekly process, just until...
It depends on his reaction (or lack of) to the chemo. The MO may also add Cisplatin to the Erbitux. That will depend on the reading of the PET scan from today. The MO is gone for this week, so I'm sure we won't hear anything about the PET results until next week.
On another note, I was surprised this week to find out that our sweet little niece is planning a fundraiser for Ron over Memorial Day weekend at Piggly Wiggly in Lake Geneva. There will be a brat wagon set up for three days, so if you live close by, come out and eat a brat for Ron!
There is not much more to report on his health. He is just very worn out, but he can't sleep for very long at a time, so he is up and down all day and night. I still don't think he takes enough of his pain medication, but he is stubborn! Even though I have had both Doctors and Nurses explain the pain cycle, and how much easier it is to control if you stay on top of the pain, and don't wait until you're in agony to take something, he will not listen. He may need a swift kick in the sore butt :)!
Thursday, April 9, 2009
Round Four
This is a post I hoped I would not have to write. The cancer is back. We had an idea that it was, but it wasn't confirmed until yesterday up at UW-Madison. About 2 weeks ago Ron noticed a lump in his right cheek. It seemed to vary in size from day to day and it was very painful. The last week of March was my spring break from work and we did go to Missouri. It was there that I really started to think that something was wrong. Ron slept from 12-16 hours a day the whole time we were there and he didn't even realize he was sleeping that much. And to my sister, the nurse, his fatigue was very telling.
We had a normal check-up with the surgeon scheduled for Wednesday, April 8, and as soon as he came in and examined Ron he said it didn't look good at all. He did a punch biopsy and sent it to pathology to be read immediately. We were then sent to a Radiation Oncologist there, where the possibility of brachytherapy was mentioned. The RO thought that if the tumor was very localized, the therapy would work for Ron. So we left there knowing that although the cancer was back, we had a radiation option, which surprised us.
Thursday, April 9 we had an appointment with Ron's longtime Medical Oncologist. He said that brachytherapy at this point would do Ron more harm than good. It would be good if the tumor was localized, but he said that Ron had cancer all over his mouth at this point and that the therapy would be very hard on him, and give him no benefit. He is going to start Chemotherapy in two weeks. We don't know for how long. We have an appointment on Monday to get a new PORT installed, Tuesday for a PET/CT fusion to see if the cancer has spread, and Thursday for Chemo training. I can only assume by training that it means that Ron will have a portable pump hooked up for days at a time at home. We are not really sure at this point what the Chemo will be. The MO mentioned Carboplatin, Taxol, and 5FU, with the addition of Erbitux possibly.
That is some heavy duty chemo, so of course I am worried about Ron's ability to withstand it. His first chemo session is scheduled for April 23.
This is the second time that the cancer has come back within 8 weeks of a major salvage surgery. Further surgery will probably not be an option, but I can't say for sure. Ron is willing to do much more than I would, but he knows that no matter what, his family is all here for him. We are not giving up by any means. I am just incredibly sad that he has to go through this again. Please pray for everyone with cancer, as they may be closer than you think.
We had a normal check-up with the surgeon scheduled for Wednesday, April 8, and as soon as he came in and examined Ron he said it didn't look good at all. He did a punch biopsy and sent it to pathology to be read immediately. We were then sent to a Radiation Oncologist there, where the possibility of brachytherapy was mentioned. The RO thought that if the tumor was very localized, the therapy would work for Ron. So we left there knowing that although the cancer was back, we had a radiation option, which surprised us.
Thursday, April 9 we had an appointment with Ron's longtime Medical Oncologist. He said that brachytherapy at this point would do Ron more harm than good. It would be good if the tumor was localized, but he said that Ron had cancer all over his mouth at this point and that the therapy would be very hard on him, and give him no benefit. He is going to start Chemotherapy in two weeks. We don't know for how long. We have an appointment on Monday to get a new PORT installed, Tuesday for a PET/CT fusion to see if the cancer has spread, and Thursday for Chemo training. I can only assume by training that it means that Ron will have a portable pump hooked up for days at a time at home. We are not really sure at this point what the Chemo will be. The MO mentioned Carboplatin, Taxol, and 5FU, with the addition of Erbitux possibly.
That is some heavy duty chemo, so of course I am worried about Ron's ability to withstand it. His first chemo session is scheduled for April 23.
This is the second time that the cancer has come back within 8 weeks of a major salvage surgery. Further surgery will probably not be an option, but I can't say for sure. Ron is willing to do much more than I would, but he knows that no matter what, his family is all here for him. We are not giving up by any means. I am just incredibly sad that he has to go through this again. Please pray for everyone with cancer, as they may be closer than you think.
Sunday, March 22, 2009
In Limbo...
Sunday, March 22, 2009: After our meeting with the Medical Oncologist up at UW-Madison, we have realized that it is best for Ron right now to not do chemo. She explained that, although it is important to be proactive from now on, chemo right now would do more harm than good to Ron. She agrees with our other MO that the cancer will most likely come back, probably fairly soon. She recommends getting a PET scan again in May and see where he is then. He is still healing from a huge life-altering surgery and still trying to get back to "normal", whatever that may be from now on. He has definitely been through the mill this time. He is tired much of the time, but cannot rest for long. He does a lot of wandering the house. It is so hard for him to sit around. Once in a while he has gone out and talked to the guys in the barn, or gone out to shoot guns, but he is so bored. His main nutrition right now is still through the PEG tube. He gets three meals a day using Carnation VHC and Ensure Plus mixed together. He is also swallowing better everyday. He still has a pocket in his mouth that gathers liquid and he has a lot of trouble trying to get that to the back of his throat. He usually has to spit out a small amount. He also is having a lot of drooling going on. He can't really tell when it is happening, because he can't feel it. His speech is much different also. We do understand him generally, but sometimes he has to repeat himself.
Another problem cropped up unexpectedly, too. When he got home from the hospital, he complained about a sore on his behind. I looked and thought it was a small bedsore from his being in the hospital so long. I kept it clean and covered and for a couple of weeks it didn't bother him anymore. Then one evening he told me that it was really hurting again, so I looked and I was shocked! It was actually a Pilonidal Abscess, which had burst open. I won't get too graphic here but it was a mess! So I called his general doctor the next morning and got him right in. The doctor thought that a surgeon should look at it, as it may have to be surgically drained. Just what he needed! He was put on antibiotics for ten days and we saw a surgeon the following week. Thankfully, he said that it looked really good now, and he felt that the worst part was over, just to keep it clean and not worry too much about it.
The next day, Tuesday, March 17, we saw Ron's original ENT surgeon from three years ago, just for a check-up. He was amazed at how quickly Ron has healed in just a month. He said everything looks good, and we have no reason to see him anymore since we are now being taken care of at UW-Madison. We will miss him, he has been wonderful to Ron.
Wednesday, March 18 we were back at UW-Madison to see the swallow specialist and also to follow up with the surgeon. He is swallowing quite well, and really impressed the swallow therapist. We were told that we could move up to very soupy soft foods. The surgeon also said he is doing great, but he will keep a close eye on him from now on. We will see him again in three weeks. Our appointments are finally slowing down to a manageable level, at least for now. He only has one appointment this week just for blood work. The following week is my school's Spring Break, so we are planning to go to my sister's in MO. for a few days, just to get a change of scenery. Can't wait! Thanks to all for your cards! Ron loves getting them.
Another problem cropped up unexpectedly, too. When he got home from the hospital, he complained about a sore on his behind. I looked and thought it was a small bedsore from his being in the hospital so long. I kept it clean and covered and for a couple of weeks it didn't bother him anymore. Then one evening he told me that it was really hurting again, so I looked and I was shocked! It was actually a Pilonidal Abscess, which had burst open. I won't get too graphic here but it was a mess! So I called his general doctor the next morning and got him right in. The doctor thought that a surgeon should look at it, as it may have to be surgically drained. Just what he needed! He was put on antibiotics for ten days and we saw a surgeon the following week. Thankfully, he said that it looked really good now, and he felt that the worst part was over, just to keep it clean and not worry too much about it.
The next day, Tuesday, March 17, we saw Ron's original ENT surgeon from three years ago, just for a check-up. He was amazed at how quickly Ron has healed in just a month. He said everything looks good, and we have no reason to see him anymore since we are now being taken care of at UW-Madison. We will miss him, he has been wonderful to Ron.
Wednesday, March 18 we were back at UW-Madison to see the swallow specialist and also to follow up with the surgeon. He is swallowing quite well, and really impressed the swallow therapist. We were told that we could move up to very soupy soft foods. The surgeon also said he is doing great, but he will keep a close eye on him from now on. We will see him again in three weeks. Our appointments are finally slowing down to a manageable level, at least for now. He only has one appointment this week just for blood work. The following week is my school's Spring Break, so we are planning to go to my sister's in MO. for a few days, just to get a change of scenery. Can't wait! Thanks to all for your cards! Ron loves getting them.
Tuesday, January 27, 2009
Pre-Op Day at Madison
Tuesday, January 27, 2009: What a long day! It was our big pre-op day today at UW-Madison. We started in the ENT clinic for pre and post-op instructions. We were then taken to another office to fill out a bunch of paperwork on Ron's previous history. Then down to the lab for blood work, then to Admissions to pre-register for next Tuesday. We then met with the Surgeon and his team. He went over the surgical plan again and asked if we had questions. He had mentioned that the last PET scan showed some active nodes in the right neck, so he will be taking those. I asked about his left neck, since the Radiation Oncologist we saw up there a couple of weeks ago had felt something concerning in his left neck also. The Surgeon wasn't aware of that, so he sent us to get a CT scan done. All in all, we were there from 8:30 a.m. to just after 3 p.m. We also got a copy of the letter that the Dr. wrote for the insurance company so they could accept the entire claim as in-network. We are receiving conflicting reports as to whether the insurance company has received the letter, so I am going to personally fax it to them myself tomorrow. We are also giving a copy of the letter to Ron's insurance agent, so he can also make sure the company gets it. I tell you, it is always something. There is so much to try to keep track of. I'm so thankful that we are at UW now, since we have a liason person to help me with all of these problems that pop up. Our next appointment is on Thursday, where we will meet with Ron's Medical Oncologist. We would like to discuss further Chemo treatment. If Ron is willing to go through this horrible surgery, I want them to throw the "big guns" at him afterwards, so we will know we tried everything. More updates after that, and don't forget to come Saturday night to wish him well.
By the way, this is the official procedure to be done: Composite resection mandible and tongue, scapular flap reconstruction, excision of submandibular gland, and tracheotomy. Quite a mouthful, isn't it? No pun intended.
By the way, this is the official procedure to be done: Composite resection mandible and tongue, scapular flap reconstruction, excision of submandibular gland, and tracheotomy. Quite a mouthful, isn't it? No pun intended.
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.
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