Erbitux seems to be working!

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

Palliative care...

"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!

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 :)!

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.

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.

Trach is out!

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

Ice Chips, Yum!

Thursday, February 26, 2009: Check-up at UW-Madison today with the surgeon. He removed the remaining stitches and staples from Ron's face and neck. Mouth looks great. He was given a plug for his trach, so he can spend longer times with the ability to speak. The doctor said that once he can leave the plug in day and night for at least 3 days, the trach will be removed. Our next appointment is next Wednesday, so that is our goal. They will remove the trach that day and then he will immediately have his swallow study done. He was given some ice chips in the hospital so they could just see if they would make him choke. He did fine with them, so he is to have them at home as often as he wants. The doctor is just sure that he will be able to eat again. We are so excited! I told the team that he was torturing himself yesterday by watching the Food Network. I came in and said "Doesn't that make you hungry to see all that food?" He nodded...and the worst part was that they were making pancakes at the time--one of his very favorite foods! He has lost 14 pounds since right before the surgery. I have ordered 4 cases of Carnation VHC, which is a very high calorie supplement, like Ensure or Boost but the calories and the amount of protein is higher. He was sent home with exercises to do with his tongue and he is to practice swallowing hard. He is very motivated to eat again and I will feel like I can return to work if he gets rid of the trach, so that is what prayers should be directed for at this time. He is feeling as well as can be expected right now. The only problem we haven't been able to solve is that he is getting very little sleep. After discussing with the doctor today, we got a prescription for sleeping pills to use as sparingly as we can. I think he would be happy to get a good nights sleep every other night or even every third night. It would be an improvement! We have an appointment on Monday with the Chemotherapy Oncologist, so I will update after that.

Ron is Home!

Sunday, February 22, 2009: All apologies to those who follow this blog. I promised to keep you informed of Ron's progress in the hospital and I didn't. I decided to not bring my laptop because I would have had to carry it all over the hospital with me. I'm so sorry. I tried to keep in touch with many by phone. Anyway, Ron came home this past Wednesday, February 18, after 16 days in the hospital. He had to spend more time than we thought because he had a setback that I will explain. I will try to reconstruct our time.
Monday, February 2: We got to the hospital at about 5 a.m., a little early. The nerves were working big time! I was just sure that Ron would be changed forever after this surgery, and I was so worried about that. While we were waiting in the pre-surgical area, our daughter came back to see us and along with her was my sister! She surprised me by making the drive (again) all the way from Missouri just to be with us. I was so glad she was there. She will never know how much she means to me and Ron. They wheeled Ron away at about 7 a.m. and we didn't see him again for 17 hours, at midnight. We all went to the surgical waiting area and tried to settle in. I had again brought things to read, but my mind just would not let me concentrate on anything. It really helped to have our daughter and son-in-law there along with my sister. They were there the entire time with me. I also got a surprise that morning. A woman came up to me and asked if I was Lori. I said yes, and she introduced herself as someone I knew only from the OCF website. She lives in Madison and her husband had been treated there by the same Doctor. She had made a special trip just to see me and wish us luck. I was so surprised and happy to meet her. Unfortunately, she lost her husband last October, but she told me that UW-Madison had allowed him to live a longer and better quality life. This is just an example of the wonderful people on the OCF website. They have helped me so much!
We got phone updates throughout the day, about every hour and a half. At 3 p.m. we were told that the micro vascular work was starting and that it would be about 2 or 3 more hours. At 5 p.m., they said they were about one to one and a half hours away. At 6 p.m. they were finishing up. Ron's doctor came out at about 6:30 p.m. to tell us how it went. Ron did not lose his tongue! I was so thrilled at that news that the rest of it really didn't sink in right away. Ron still has about 1/3 of his original tongue. The tumor was large, with the right mandible fully necrotic and cancerous. There were suspicious looking nodes both in the left neck and under his chin, which were removed. Everything on the right neck looked good. The right mandible was removed and replaced with a metal plate. The tissue was replaced with scapular muscle from his back. The flap looked great but was not initially perfusing very well, so that will be watched closely. Ron was sent to the recovery room at 7:30 p.m. We were told to go to the ICU family room at this point. For the next four and a half hours, we were told nothing. I was really losing it at this point and was very angry that we never had one update from the recovery room at all. My sister said that I shouldn't be getting mad, and I snapped at her and left the room. I felt horrible right after that. I was so worried about Ron at this point and not hearing anything was making it so much worse. I cried in the hallway for a while and then went back in and apologized to everyone for losing it. I love my sister so much, she is the last person I wanted to snap at. It was a very long day. We finally were allowed to go into the ICU to see Ron at midnight. He was totally out of it, and I'm not sure he even knew we were there, but it was just so good to see him again. He looked the same as he looked after the surgery in September since the same incision was used. The only difference this time was that the neck incision extended to the left side as well as the right. He had three drains, one scapular, one in his left neck and one in his right neck. He also had a trach, an arterial line, several IV's, a catheter and a nasal feeding tube. Once we got to see him and know that he was alright we left the hospital to get some sleep. My sister had rented an apartment in the same building where our daughter and son-in-law live, and I would stay with her while she was here. What a wonderful thing to fall into bed that night.
The next few days passed quickly. My sister had to go back home, but I was so happy to have had her here! Every day Ron had lines removed, which is always a good thing. There were areas of concern with the flap. Some areas were perfusing better than others, so the doctor was keeping a very close eye on it. Ron was on IV steroids to help with the facial swelling, so it looked much better than in September. February 5 Ron was moved from the ICU to the regular ENT Surgical floor. On Friday, February 6, the PEG tube was put in his stomach. When he got back to the room, he was beyond pain. It turns out, they could not anesthetize him because it would increase secretions, so he had only an IV pain medication. He felt every bit of the PEG tube insertion. He told the nurse that his pain was a 6. He has never used a number that high before, so it was a bad night attempting to get on top of the pain, and keep it under control. Thankfully, it did get under control and the following day the nasal tube was removed.
Sunday, February 8: The doctor came in and placed 4-5 stitches inside Ron's mouth. He apparently had kind of a tunnel that was gathering drainage. Ron had been having a lot of bloody sputum building up in his mouth and he would have to frequently attempt to spit it out. It's very hard to get rid of sputum when you can't control your tongue! There is an infection in Ron's own tissue now, so he was changed from one antibiotic to two very powerful ones. The doctor said that he may have to go back in to remove the infected tissue if the antibiotics do not get it under control quickly. We are all praying that he won't have to go back in, but the doctor has an OR scheduled for Wednesday, just in case. The next two days it appeared that the new antibiotics were really working, but on Wednesday morning, the doctor said that he would have to go in again and remove infected tissue. He briefly mentioned the possibility of having to remove the metal jaw, but I didn't worry too much about that.
Wednesday, February 11: Ron was scheduled for the OR at 2 p.m., but he was not taken in until 3:30. They had told me that it should just be an hour to an hour and a half. The OR called the floor nurse at 5:45 to say that there was about an hour to an hour and a half to go. At this point, I knew that they were removing his jaw. The doctor came to Ron's room to talk to me at 6:30 p.m. He said that they did have to remove the jaw, and that it would not be replaced. He felt just terrible about this outcome, but I told him I understand that it's no one's fault and that infection is a huge risk with any extensive surgery. He also had to remove a lot of infected tissue. He left part of the incision open on the right side and placed antibiotic packing in the space. Some packing will be removed every day. The only thing I worried about was Ron's future ability to eat without a right jaw, but the doctor said that he thought Ron would get to the point where he could at least eat soft foods. I just know that we are in the best place for the best possible outcome and if anyone can eat again, it will be Ron. The following day, Ron's plastic temporary trach was replaced with a steel one that could end up being permanent, although we certainly hope it won't. It is much easier to take care of though. The days following went well. Ron was feeling much better everyday with the infection gone, and the remaining packing was removed on Sunday, the 15th. On Monday the doctor said that Ron could go home on Thursday. Tuesday his staples were removed from his scapular incision. We didn't get a good picture of it, but there were 38 staples in there!
On Wednesday, February 18, I had just been getting ready to go to the hospital at my daughter's apartment when I got the phone call that Ron could go home! YAY! Released a day early! We all got ready very quickly and I packed up all of my things so we could get to the hospital ASAP. Of course, once we got there we had a lot of sitting around and waiting as per usual. We had a ton of instructions to go through, as well as talking to the pharmacist about all of his medications. We finally got out of there and dropped off our daughter and son-in-law and got back home at about 5 p.m. We were thankfully sent home with a ton of supplies as well as a case of nutritional supplements for his PEG tube. Our poor son and other daughter were sent out with the prescriptions to get them filled for his evening doses. The Walmart here did not have the liquid antibiotics. They called the local Walgreen's, and they didn't have them either. So they had to drive to another town to that Walmart to get them. It took them about 3 hours to get back home from what was supposed to be a very easy errand.
Our days now are trying to get into a good routine. I follow spreadsheets every day so I don't forget anything. I didn't really realize how much there would be to do every day. Ron is feeling better than expected. He is only having pain medication about three or four times a day. His biggest complaint is still the amount of expectorating he has to do although it is much less now than when in the hospital. One very unexpected thing happened on Thursday. I had checked our bank balance online and realized that a paycheck had been deposited for me. I knew this was a mistake, as I have missed 3 weeks of work at this point. I decided to go in to school on Friday so I could talk to my bosses and figure out if I needed to sign papers to take more time off and to let the payroll secretary know that there was an error made. Later that night, I checked my work email. The administrator had written to me to tell me that my friends at work had donated some of their sick days so I could get a paycheck. Well, I lost it and started crying. I love my job so much, and they are so good to me there. I went in on Friday and it was very emotional for me. A lot of the students came up and hugged me, and they had also made me a huge card saying that they missed me. I was also given a card, signed by many friends at work. I just glanced at it because I saw so many names and there was cash inside, and I knew that I would lose it if I read it right there. I made the rounds to say hello to as many as I could, and show them Ron's photo. They thought that his face must be sunken in since his jaw was removed, but it isn't because there is so much back muscle in there, it is quite firm. I found out while I was there that I am not eligible for the FMLA because I don't work enough hours through the year, but I was told that it didn't matter. I could take as much time off to be with Ron as I needed to. I am hoping to return to work the second week of March. I miss it so much. I am so lucky to have the job that I have, and so many wonderful friends there. It truly is like a family.
We have an appointment with the surgeon on Thursday, Feb. 26. I would imagine that the staples will be removed from Ron's face and neck at that appointment. We have an appointment with his Medical Oncologist on March 2 to discuss when to begin chemotherapy. Ron will have a swallow study scheduled within the next few weeks, also. We need to find out if he is able to swallow again, and make sure that he does not aspirate into his lungs. All in all, we feel so blessed: That he made it through the surgery, still has some tongue left, and, oh yeah, the nodes removed were all negative for cancer!! Also, our wonderful families and friends. We love and thank you all for your good wishes and prayers.

Chemo Dr. Visit...

Thursday, January 29, 2009: We met with Ron's Medical Oncologist again today to bring him up to speed, but he was already up to speed! He had already spoken at length to the ENT Surgeon at UW-Madison about Ron. He said the surgeon asked him if he thought Ron could handle the surgery, and he said that if ANYONE could, it would definitely be Ron! He marvels at Ron's strength and attitude every time we see him. He also told us that the other doctors on the team do not feel that Ron is a candidate for chemotherapy after this surgery, but he wants to give him at least four treatments anyway. We said YES, you be a rebel! We definitely want it. We are trying to buy as much time as we can.
The Oncologist felt that the cancer would come back, possibly even within a few weeks or months again, but we know that we are doing what we have to do at this time. And Ron is clear that even knowing the cancer will come back, he is still willing to go through this huge life-changing surgery, so that is what we will do. The doctor did confirm that this cancer is poorly differentiated, which means it spreads much faster than "normal" cancer. We are also dealing with the Perineural Invasion, which increases the chance of recurrence. So the odds are against us, but we will fight it to the end!
UW-Madison had also mentioned to us that Ron should probably apply for disability, and we had never thought of that. He is retiring from farming now, and is selling his shares to his nephews to give us some income, but we will be applying for disability also. The MO agreed that it was a good idea, and didn't think Ron would have any problems qualifying. So we are gearing up for Monday. Ron has been deciding what he would like to eat on Sunday, and we finally decided I would make "Thanksgiving" dinner, turkey and all the trimmings. And it will be a day of thanks: thankful that Ron is still here, thankful that we have a wonderful family, and wonderful friends, and thankful that we found our wonderful team at UW-Madison.
We will also be thankful for seeing all of Ron's friends on Saturday night at the Zenda Tap! Don't forget to come and wish him well!

UW-Madison is our answer!

Tuesday, January 13, 2009: Our big day at UW-Madison. The weather was horrible! We had driven to Madison the afternoon before and spent the night with our daughter and son-in-law because the weather sounded bad. When we woke up, it was freezing cold, snowing and blowing all over. Our son-in-law drove our car, and with the help from my new TomTom, we made it. The minute we walked in, I just had a feeling about this place. It was beautiful but huge! I thought I had just gotten St. Luke's down, and now I will have to try to navigate another huge hospital complex. We got checked in right away, and got good directions for the first office. We made it to the right place, and of course I had a 2 page form to fill out. I had barely started when we were called in to the office. We went in and sat down, and met our future "liason", the Head and Neck Cancer Coordinator. She was very nice, and sat and talked with us for quite a while and asked a lot of questions about Ron's previous treatments. She gave us a guidebook that we will bring with us every time we come here, which will be helpful because up until now, I have used datebooks for everything, so now I carry a total of 4. It will be easier to carry just one.
The coordinator then left and the Dr. came in with his assistant. What a nice man! I feel like I should not use his name on this blog but I wish I could. He immediately put us at ease. He said that he had read through all of Ron's records, and felt that this was a last-ditch effort, which we knew already. He does feel, however, that Ron's chances are good with an extensive second salvage surgery. He said that he would not use hip bone as this was quite a painful procedure. He talked with Ron about what Ron wanted to do afterwards. Ron said that he wanted to be able to ride his Harley and shoot guns, including shotguns. The Dr. said that in that case, he was not going to use any bone from Ron at all. He will use metal plates to replace the mandible. He had thought that he would use part of the scapula, but since Ron wants to shoot guns, that would have an impact on his ability to handle the recoil. He will also replace Ron's tongue using abdominal muscle. He explained that this would give him the most favorable outcome in using his tongue again, for speech and for eating. He did say that Ron would probably never eat steak again, but he will be able to eat most things. Ron will have to have a PEG tube again of course, but the Dr. said that hopefully, it would not have to be permanent. The Dr. will have to use a lot of tissue to rebuild what is lost. This cancer is quite large, so a lot will have to be removed. He is hoping not to have to remove the entire tongue, just a portion of it. Ron's speech may be quite different, but he should be able to be understood. He will definately have speech and swallowing therapy to help him get used to his new tongue. The Dr. also explained that radiation would not be an option for Ron. The tumor is too large to do any Cyberknife treatments beforehand, and he has already had his limit of radiation. He does agree that Chemotherapy is necessary after the surgery, and after Ron has healed somewhat. I am hoping that we can do the Chemotherapy locally, with Ron's Medical Oncologist that he has seen for the past three years. The Dr. also used a scope that went down Ron's nose to view his larynx and throat area. He said everything looked great, and he feels that Ron will not have to have a permanent trach. He will have to have a temporary one placed during the surgery again for possible swelling. The Dr. spent at least an hour with us and answered all of our questions. I can't explain the immense confidence that I felt immediately in this man. I truly believe that he is Ron's best option for the best possible outcome.
After this appointment, we had a little while before the next one, so we were shown to the cafeteria area to get drinks. We then went to the next office to meet with the Radiation Oncologist. Again, I had just started filling out the form when we were called in. The RO came in and he was very nice also. He went through Ron's entire history, and explained that he thought Ron's best shot was the surgery. He didn't feel the Cyberknife would work for Ron because the cancer is so large. The Cyberknife is a much better option for one small tumor. Also the Cyberknife therapy would affect the surgical option. So this appointment was kind of unneccessary, but the RO was very nice and he also spent a lot of time with us explaining everything. All in all, we left the hospital feeling very hopeful for the future.
One problem did come up that day. We found out that UW-Madison was "out of network" for Ron's insurance. Wow, I was not expecting that. I didn't even think to call ahead of time to check. This didn't mean that they wouldn't pay at all, but they would pay less than normal. Now, for most claims this wouldn't be a big deal, but we are talking about a huge surgery and a lengthy hospital stay. In other words, a big deal. We called Ron's agent, and he said that he would call the company to see if anything could be done. He called back and said that if we could have the Dr. write a letter explaining why Ron needed his expertise, we would have a better chance that they would accept the claim as normal. I called our liason and told her what we needed. She said that she would work with us and help us as much as possible.
Friday, January 16. The Doctor called Ron today and said that his surgery would be on February 2. The surgery will take all day, so he is his only patient that day. I am wondering just how long it will be because the last one was 9 hours and that was with two doctors! He also said that he will be in the hospital for 7-14 days. Ron got a call later to schedule his pre-op appointments. They will be on January 27. First he will have his pre-op tests done, and then we will meet with the surgeon again so he can explain in more detail what the surgery will involve. I think I will call Ron's Oncologist next week and make an appointment with him to let him know what we have decided to do. He has been with Ron every step of the way for the past three years, and we like and respect him very much and would like to continue with him for Chemo. We are now in waiting mode again, but very much looking forward to the future!

Second Opinion Coming...

Saturday, January 10: Just a quick update. We had a wonderful peaceful, holiday in Missouri. We always enjoy it there so much. It was so nice to see our niece and her husband and their adorable 4 little boys. We also got to spend time with our nephew. He and our son were always very close as boys, so it was nice that they got to see each other again. We ate tons of wonderful food and played Trivial Pursuit almost every day. I even talked Ron into staying an extra two days. I knew that we wouldn't have much to look forward to once we got home, so I was so glad to stay. The weekend after we got home, we had a wonderful visit with some old friends of Ron's family. While speaking with them, they really encouraged us to get a second opinion up at UW-Madison. I had been thinking that I should call them, so that lit the fire. I called them on Monday from work, explained Ron's situation and they were very accommodating. We have an appointment with an ENT Surgeon there on the 13, and then an appointment with a Radiation Oncologist. We are so hopeful that they will have other options for us to consider.

The surgeon that we met with for the second salvage surgery didn't call Ron until yesterday. He apologized for the delay, but was very happy to hear that Ron was going up to Madison. He has worked with the team up there before, and thought that they really might have some other options for Ron to consider. If we get up there and they tell Ron that the surgery is his best option, we will probably come back and have the surgeon at St. Luke's do this one also. I am so anxious for this to be some new miracle solution. Yesterday we also went to the farm's long-time lawyer to get things in place just in case. That was rough. Ron's brother has been so good to him, and is making sure his family will be taken care of.

I also have to thank the High School I work for. They have been so good to me throughout the past three years. I have been there now for 10 years, and I love it so much. I really enjoy going to work because the kids make sure that my mind is not on our troubles at home. They make me laugh every day. The Administrator even came down to the Library to tell me not to worry about missing work, even if I have to take a leave. They are behind me during this difficult time. My co-workers have been a wonderful support system. And a special shout-out to some of my favorite "kids", Brad, Pablo, both Steves, Matt, Kelly, Taylor, Kate, Ally (and Marty), Sam, Ryan, and many others. You all make my day! I will update after our appointments on Tuesday.

Update on the future...

Monday, December 22: We had two appointments today. The first was with the RO up at St. Luke's. We were pleasantly surprised that he said the Cyberknife would be an option for Ron. He told Ron that his best chance for survival would be a second salvage surgery. His odds were 80% for the surgery. If he chooses not to do the surgery, he could have 5 Cyberknife treatments. Those odds he placed at about 60%. Ron's third option would be more chemo and IMRT radiation, with about 30% chance of survival. He was not talking about a cure, because since this is Ron's third bout with Oral cancer in three years, it most likely will come back, but we just can't say when. It could be right away again, or we could have a few years cancer free. We were offered a tour to see the Cyberknife and how it works, but we were very close to our other appointment time, so we had to leave. We left there feeling much more positive.

Our second appointment was with the surgeon who did Ron's last surgery. If you have been reading this blog for a while, you know that I was not really fond of that surgeon, but I must say he was much nicer this time. This was our difficult appointment. He explained a second salvage surgery would be much more aggressive. Basically, the entire lower right quarter of Ron's mouth would be removed and rebuilt, using hip bone, a metal plate, and tissue from the hip area. He also said that he would have to remove at least half of what remains of Ron's tongue. This cancer is below his tongue, on the floor of the mouth, and it wraps around the right side of the tongue. There is also the possibility that he would have to remove the tongue completely, called a glossectomy. This brought up the discussion of "quality vs. quantity". That is where we are now. Ron must decide what he is willing to live with. I told him that I would be there no matter what. If he has to have a trach and a PEG tube for the rest of his life, I have no problem taking care of them. I think what is bothering Ron the most is the chance that he would not be able to eat again, especially if they remove his tongue. The surgeon did say that he had one patient who could eat some things after their glossectomy. I told Ron that he would be the second! If anyone could do it, he could. And he hates the PEG tube! He really does not want one again, but I told him that we could get a different kind, one that would not irritate so much and get caught on his clothing.

So this is where we are right now. We ended up cancelling the other appointments to get him ready for the PORT, since chemo will not start until after another surgery and his recovery from that. The surgeon is going to consult with the plastic surgeon and the Oncologist and get back to Ron with a surgical plan, and he can then decide to go for it or not. The surgery would be within the next two weeks. We are happy that we at least have the option of the Cyberknife. I really believe that Ron will go for the surgery again, though. He just wants to live, and that will give him the best shot. It will be a different life, but it will be LIFE and that is all that matters to us. We are headed down to Missouri tomorrow for the holidays with my sister's family again. We are leaving all of this cancer stuff behind for a few days! We wish all of you a very Merry Christmas and Happy New Year! May 2009 be kind to us all.

Also, thank you so much for the comments. We really enjoy and appreciate them!

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.

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!

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!