I was diagnosed with Colon Cancer on April 24, 2010. It all started shortly after I returned home from Missouri in late February. I had been feeling very tired and run down, so I made an appointment with my family Doctor. She ran some blood tests and had me take home a Fecal Occult Blood Test. I returned it the next day and she called and said it was positive. Well, me being me, I decided to ignore it and dismiss it. I was also very anemic and had a very low Vitamin D level. A couple of more weeks went by and I was feeling worse so I went back to the Doctor and got another test to take home. I returned that one the next day, and again, she called and said it was positive, so I needed to make an appointment with a Surgeon for a Colonoscopy.
I had an Endoscopy and Colonoscopy on April 23, and when it was over the Surgeon would not say anything until my son and daughter came back to the hospital. So I knew he had found something, but I never expected to hear that he had found a mass that looked suspicious. The mass was located at the Ileocecal Valve, which is where the small intestine joins the large. He took 3 separate biopsies and the next day I got the call that I did have Moderately to Poorly Differentiated Adenocarcinoma, or Colon Cancer. To tell the truth, it really did not sink in right away. I was more worried about the kids reactions to hearing the "C" word again so soon. It just didn't seem fair. Ron has not even been gone a year and now we have to deal with this all over again?
I had a CT of the abdomen and pelvis on April 28 and a CT of the chest on May 4. The CT of the abdomen showed a right adrenal mass and just accidentally discovered a nodule within the right lower lobe of the lung. That is why the CT of the chest was scheduled. It showed five lung nodules: 3 in the right lung and 2 in the left. It also showed some "suspicious" lymph nodes in the mediastinal area. I felt so bad for my family Doctor. I had an appointment with her the day after the chest CT and asked her if she had the report yet. She checked on the computer and it was there, so I asked her to read it to me. She really didn't want to but I insisted. When she told me about the nodules in the lungs and the lymph nodes, then I started worrying that this was a metastatic cancer. One thing I would like to stress to anyone with cancer is to get copies of all scans, blood tests, X-rays, whatever is done to you. Remember it is your right to ask for a copy of everything. You will find that it comes in handy because you are likely going to have a team of several physicians, and some may not be able to access records from another location.
Things moved very quickly at this point. I met with my husband's Oncologist on May 6, and he said that he thought I was Stage IV and that the lung nodules were more than likely metastases from the colon. We discussed Chemotherapy options and he suggested FOLFOX (which is a mixture of 3 chemo drugs: Leucovorin, 5-FU, and Oxaliplatin) and Avastin for 6 months. If the lung nodules are proven to be cancer, that may add another 6 months of chemo. I had my surgery on May 7. It is called a Right Hemicolectomy, which means that my ascending colon was removed along with about 6-8 inches of small intestine. The small intestine is then reattached to the transverse colon. Luckily, I was able to have this done laparoscopically, with 3 very small incisions and one larger one, as he did a hand-assisted surgery. The first night all I remember is pain. I had a PCA pump with Morphine and I could not wait until the light blinked again. All of my kids were there along with my sister, and they could hardly stand to watch me. My sister, being a nurse, realized that the Morphine was not enough and tried to get the nurses to call the surgeon for something else. We don't really know if they ever did call. They said they did and he would not change the medication. He said he never knew anything about it. My family timed my pain and I had about 4 minutes of relief for every 10 minutes.
The next day the medication in the PCA was changed to Dilaudid, which worked much better, and I was finally able to get a little rest. I stress a little because for one thing, I cannot sleep on my back, so I would try to lay on my side a little bit, but it really hurt so I could not ever get very comfortable. Also, the entire time I was in the hospital, there was construction going on right outside my door. They usually started at about 6 in the morning and went until 10 at night. This is on a surgical floor! I don't know how they expected anyone to get any rest or comfort with all of that going on. It really was a bad experience and I will never go back to that hospital again. There were just a lot of mistakes that went on. I am so glad my family was there almost constantly because we caught several medication errors, my PCA was left with a clamp on it, so I could not get pain relief for about an hour, until my sister actually discovered the clamp and released it.
I got to go home on Tuesday, May 11, thank God. I had gotten my drain removed that morning and almost immediately, the pain went away. If I hadn't had to have a drain, I don't think I would have had much pain at all. It felt so good to be in my own bed, in my own home again. I think I slept for a total of about 6 hours the entire time I was in the hospital, so I slept for a long time once I got home. On May 13 I had a PET scan of the entire body to see if there were any more areas of concern. I also got the word from the surgeon that out of 32 abdominal lymph nodes taken, NONE were positive. I was so happy about that, but also confused. I thought for certain one or two would be positive, especially if it jumped up to my lungs. The PET scan did not show the lung nodules very clearly but the lymph nodes indicated increased metabolic activity. I went to the Oncologist again on May 17, and he said even though the nodules didn't show up very well we could not wait, so he is sending me to a great Cardio-Thoracic Surgeon at St. Luke's in Milwaukee. I know he's great because he did Ron's triple bypass surgery in 2007. My stage is T-4, N-0, M-X.
This surgery will be performed in two stages. The first is called a Mediastinoscopy, where the Surgeon will make an incision much like one for a tracheotomy, then use a scope on the outside of the trachea to get the lymph nodes out. The second part will be turning me onto my left side and making at least 2 small incisions in my right side, so they can access my lung through the ribs. There is one nodule that is right at the bottom of the right lung that he thinks will be easy to get, and he will try to get another if he has a good view. This part is called a Wedge Resection of the Lung. I will have a drain again, but he said I could probably go home in two days. Well, I have been doing some reading, and I doubt that I will be going home that soon. But St. Luke's is a wonderful hospital, and I know that I will have a much better experience there. The surgery date is not yet scheduled, but it will be next week sometime. At least I will get to spend my birthday at home and not in the hospital! The big 5-0 on Sunday. On May 20, I had a follow up with my original surgeon. I showed him an area that is hard and very painful right above the largest incision site. It is called a Seroma, which is a pocket of fluid. It should go away on it's own, but it really hurts. He said to come back next week if it was still there and he would drain it with a needle. I wish he would have done it at the time, as again, that is the only thing that hurts right now.
So that's my story so far. I don't know what will be found next week. One doctor seems to think this is a separate cancer, an actual lung cancer. Another doctor thinks that it is a metastatic cancer from the colon. We won't know until they get some of it out and biopsy it. I hope this will be the end of the operations, anyway. I am going to try my best to do Ron proud. If I could have even a quarter of his strength, I will be okay. There was a long time when I really wanted to die to be with him again. I don't feel that way anymore. I want to be here as long as I can for my kids (and future grandkids)! Everyone please get your Colonoscopies! You never know what may show up. On May 23, I am having sort of an impromptu "open house" for whoever would like to come over (after noon). So if you are reading this and you know where I live, come on by! Smoked pork sandwiches for all!
In Honor of My Husband, Ron
Showing posts with label Chemotherapy. Show all posts
Showing posts with label Chemotherapy. Show all posts
Friday, May 21, 2010
Saturday, April 25, 2009
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!
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!
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.
Thursday, January 29, 2009
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!
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!
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.
Friday, January 16, 2009
UW-Madison is our answer!
Tuesday, January 13, 2009: Our big day at UW-Madison. The weather was horrible! We had driven to Madison the afternoon before and spent the night with our daughter and son-in-law because the weather sounded bad. When we woke up, it was freezing cold, snowing and blowing all over. Our son-in-law drove our car, and with the help from my new TomTom, we made it. The minute we walked in, I just had a feeling about this place. It was beautiful but huge! I thought I had just gotten St. Luke's down, and now I will have to try to navigate another huge hospital complex. We got checked in right away, and got good directions for the first office. We made it to the right place, and of course I had a 2 page form to fill out. I had barely started when we were called in to the office. We went in and sat down, and met our future "liason", the Head and Neck Cancer Coordinator. She was very nice, and sat and talked with us for quite a while and asked a lot of questions about Ron's previous treatments. She gave us a guidebook that we will bring with us every time we come here, which will be helpful because up until now, I have used datebooks for everything, so now I carry a total of 4. It will be easier to carry just one.
The coordinator then left and the Dr. came in with his assistant. What a nice man! I feel like I should not use his name on this blog but I wish I could. He immediately put us at ease. He said that he had read through all of Ron's records, and felt that this was a last-ditch effort, which we knew already. He does feel, however, that Ron's chances are good with an extensive second salvage surgery. He said that he would not use hip bone as this was quite a painful procedure. He talked with Ron about what Ron wanted to do afterwards. Ron said that he wanted to be able to ride his Harley and shoot guns, including shotguns. The Dr. said that in that case, he was not going to use any bone from Ron at all. He will use metal plates to replace the mandible. He had thought that he would use part of the scapula, but since Ron wants to shoot guns, that would have an impact on his ability to handle the recoil. He will also replace Ron's tongue using abdominal muscle. He explained that this would give him the most favorable outcome in using his tongue again, for speech and for eating. He did say that Ron would probably never eat steak again, but he will be able to eat most things. Ron will have to have a PEG tube again of course, but the Dr. said that hopefully, it would not have to be permanent. The Dr. will have to use a lot of tissue to rebuild what is lost. This cancer is quite large, so a lot will have to be removed. He is hoping not to have to remove the entire tongue, just a portion of it. Ron's speech may be quite different, but he should be able to be understood. He will definately have speech and swallowing therapy to help him get used to his new tongue. The Dr. also explained that radiation would not be an option for Ron. The tumor is too large to do any Cyberknife treatments beforehand, and he has already had his limit of radiation. He does agree that Chemotherapy is necessary after the surgery, and after Ron has healed somewhat. I am hoping that we can do the Chemotherapy locally, with Ron's Medical Oncologist that he has seen for the past three years. The Dr. also used a scope that went down Ron's nose to view his larynx and throat area. He said everything looked great, and he feels that Ron will not have to have a permanent trach. He will have to have a temporary one placed during the surgery again for possible swelling. The Dr. spent at least an hour with us and answered all of our questions. I can't explain the immense confidence that I felt immediately in this man. I truly believe that he is Ron's best option for the best possible outcome.
After this appointment, we had a little while before the next one, so we were shown to the cafeteria area to get drinks. We then went to the next office to meet with the Radiation Oncologist. Again, I had just started filling out the form when we were called in. The RO came in and he was very nice also. He went through Ron's entire history, and explained that he thought Ron's best shot was the surgery. He didn't feel the Cyberknife would work for Ron because the cancer is so large. The Cyberknife is a much better option for one small tumor. Also the Cyberknife therapy would affect the surgical option. So this appointment was kind of unneccessary, but the RO was very nice and he also spent a lot of time with us explaining everything. All in all, we left the hospital feeling very hopeful for the future.
One problem did come up that day. We found out that UW-Madison was "out of network" for Ron's insurance. Wow, I was not expecting that. I didn't even think to call ahead of time to check. This didn't mean that they wouldn't pay at all, but they would pay less than normal. Now, for most claims this wouldn't be a big deal, but we are talking about a huge surgery and a lengthy hospital stay. In other words, a big deal. We called Ron's agent, and he said that he would call the company to see if anything could be done. He called back and said that if we could have the Dr. write a letter explaining why Ron needed his expertise, we would have a better chance that they would accept the claim as normal. I called our liason and told her what we needed. She said that she would work with us and help us as much as possible.
Friday, January 16. The Doctor called Ron today and said that his surgery would be on February 2. The surgery will take all day, so he is his only patient that day. I am wondering just how long it will be because the last one was 9 hours and that was with two doctors! He also said that he will be in the hospital for 7-14 days. Ron got a call later to schedule his pre-op appointments. They will be on January 27. First he will have his pre-op tests done, and then we will meet with the surgeon again so he can explain in more detail what the surgery will involve. I think I will call Ron's Oncologist next week and make an appointment with him to let him know what we have decided to do. He has been with Ron every step of the way for the past three years, and we like and respect him very much and would like to continue with him for Chemo. We are now in waiting mode again, but very much looking forward to the future!
The coordinator then left and the Dr. came in with his assistant. What a nice man! I feel like I should not use his name on this blog but I wish I could. He immediately put us at ease. He said that he had read through all of Ron's records, and felt that this was a last-ditch effort, which we knew already. He does feel, however, that Ron's chances are good with an extensive second salvage surgery. He said that he would not use hip bone as this was quite a painful procedure. He talked with Ron about what Ron wanted to do afterwards. Ron said that he wanted to be able to ride his Harley and shoot guns, including shotguns. The Dr. said that in that case, he was not going to use any bone from Ron at all. He will use metal plates to replace the mandible. He had thought that he would use part of the scapula, but since Ron wants to shoot guns, that would have an impact on his ability to handle the recoil. He will also replace Ron's tongue using abdominal muscle. He explained that this would give him the most favorable outcome in using his tongue again, for speech and for eating. He did say that Ron would probably never eat steak again, but he will be able to eat most things. Ron will have to have a PEG tube again of course, but the Dr. said that hopefully, it would not have to be permanent. The Dr. will have to use a lot of tissue to rebuild what is lost. This cancer is quite large, so a lot will have to be removed. He is hoping not to have to remove the entire tongue, just a portion of it. Ron's speech may be quite different, but he should be able to be understood. He will definately have speech and swallowing therapy to help him get used to his new tongue. The Dr. also explained that radiation would not be an option for Ron. The tumor is too large to do any Cyberknife treatments beforehand, and he has already had his limit of radiation. He does agree that Chemotherapy is necessary after the surgery, and after Ron has healed somewhat. I am hoping that we can do the Chemotherapy locally, with Ron's Medical Oncologist that he has seen for the past three years. The Dr. also used a scope that went down Ron's nose to view his larynx and throat area. He said everything looked great, and he feels that Ron will not have to have a permanent trach. He will have to have a temporary one placed during the surgery again for possible swelling. The Dr. spent at least an hour with us and answered all of our questions. I can't explain the immense confidence that I felt immediately in this man. I truly believe that he is Ron's best option for the best possible outcome.
After this appointment, we had a little while before the next one, so we were shown to the cafeteria area to get drinks. We then went to the next office to meet with the Radiation Oncologist. Again, I had just started filling out the form when we were called in. The RO came in and he was very nice also. He went through Ron's entire history, and explained that he thought Ron's best shot was the surgery. He didn't feel the Cyberknife would work for Ron because the cancer is so large. The Cyberknife is a much better option for one small tumor. Also the Cyberknife therapy would affect the surgical option. So this appointment was kind of unneccessary, but the RO was very nice and he also spent a lot of time with us explaining everything. All in all, we left the hospital feeling very hopeful for the future.
One problem did come up that day. We found out that UW-Madison was "out of network" for Ron's insurance. Wow, I was not expecting that. I didn't even think to call ahead of time to check. This didn't mean that they wouldn't pay at all, but they would pay less than normal. Now, for most claims this wouldn't be a big deal, but we are talking about a huge surgery and a lengthy hospital stay. In other words, a big deal. We called Ron's agent, and he said that he would call the company to see if anything could be done. He called back and said that if we could have the Dr. write a letter explaining why Ron needed his expertise, we would have a better chance that they would accept the claim as normal. I called our liason and told her what we needed. She said that she would work with us and help us as much as possible.
Friday, January 16. The Doctor called Ron today and said that his surgery would be on February 2. The surgery will take all day, so he is his only patient that day. I am wondering just how long it will be because the last one was 9 hours and that was with two doctors! He also said that he will be in the hospital for 7-14 days. Ron got a call later to schedule his pre-op appointments. They will be on January 27. First he will have his pre-op tests done, and then we will meet with the surgeon again so he can explain in more detail what the surgery will involve. I think I will call Ron's Oncologist next week and make an appointment with him to let him know what we have decided to do. He has been with Ron every step of the way for the past three years, and we like and respect him very much and would like to continue with him for Chemo. We are now in waiting mode again, but very much looking forward to the future!
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!
Saturday, August 30, 2008
Chemotherapy and Radiation...
I made an error in my previous post. The oral cancer staging was T1N2M0. The T1 actually means that his primary tumor was 2 cm. or less. The rest of the explanations were correct.
One thing to remember before treatment begins is that it is very important to have prescriptions filled and ready at home for side effects from treatment. We already had pain medication available, and the doctor also prescribed Compazine and Ativan for nausea and anxiety. Also, as Ron's caregiver, I am not ashamed to say that at the start of this nightmare, I went to my own doctor and asked for Xanax to help me cope with the really bad days. I knew I would need some help in holding myself together for Ron and for our kids, and it really did help. I am not in any way comparing my problems to the ones Ron faced, but sometimes I think that caregivers don't look after their own well-being. Do not be ashamed or afraid to ask for help if you need it!
Wednesday, September 14, 2005 was Ron's first day of treatment. The day started at 8 a.m. for his first Chemo session. If I remember correctly, this took about 4-5 hours in total. Then we drove about 45 minutes away to another Vince Lombardi clinic for the Radiation. An hour before the IMRT, he was given Amifostine IV to help protect his salivary glands. Our long day ended at about 4 p.m. He had no ill effects from treatment at this early stage.
One thing that helped Ron take his mind off of what was happening during chemo was listening to his favorite music. My sister had sent Ron an entire box full of goodies when he was diagnosed, including a Walkman, various CD's, Live Strong bracelets for the whole family, an inspirational book, and several do rags for when he lost his hair. (He is a Harley rider, so he always wears do rags anyway when he's riding). He never did lose a hair on his head!
September 15, we were at the chemo clinic in the morning for IV fluids. This was a normal part of his treatment. The chemo is so hard on the kidneys that they like it to be flushed out as soon as possible. Ron likes to drink Gatorade also, which helps keep his electrolytes balanced. He has been told to take Compazine about a half hour before each IMRT, which he did during the drive over. Had his Amifostine and radiation with no problems. Later that evening, he started feeling very nauseous. It is a good thing he has the PEG tube in when he doesn't feel like eating anything. Both the chemo clinic and the radiation clinic are very good about giving us plenty of Ensure and Boost to see us through, so we don't actually have to go out and buy it. I guess we're really paying for it anyway, though! Ron actually threw up for the first time on the 16th after his radiation. I was waiting in the car, and I saw him come out of the building. All of a sudden he bent over and threw up in their beautifully landscaped flowerbed! Oh, I felt so bad for him. He had a miserable ride home, holding on to a bucket, and kind of dry heaving. Got home and took more Compazine, and later an Ativan to try to help him sleep.
I think we were both surprised at how soon he experienced the bad stuff we feared. It is such a helpless feeling. I can't really make it better. Yes, I can fix him soup, or give him medication, but other than that, I don't know what to do. Just kind of a miserable night. Thank goodness it was Friday, so he had two days off to look forward to. He was still doing some farming during this time too, when he felt well enough to work. I would get upset at how much he was doing. I thought he should be resting up and conserving his energy, but this is the guy I married. He has never been one to sit still no matter what, and cancer wasn't going to stop him either!
The week of September 19-23 brought some new problems. The Compazine was failing to keep the nausea at bay, so he was given Zofran to try. That didn't work either, so he was told that he could try Kytril. At the time I believe Kytril was fairly new, and the cost was about $100 for ONE pill! Thankfully, we were given enough samples for Ron to take, because he had no prescription insurance. He was also given Salagen this week, because he was beginning to experience dry mouth.
He had two very bad nights this week following radiation. On Thursday and Friday, he had shaking chills and started running a fever. I put him to bed and buried him in blankets, and the bed just shook. I alternated giving him Tylenol and Ibuprofen every 4 hours and felt helpless in between. Of course the worst night was Friday. I called the Lombardi radiation clinic first, and got the answering service. They told me to call the chemo clinic, and then I got THEIR answering service. Their advice=Tylenol. Gee, thanks. I never would have thought of that. I was about ready to bundle him up in the car and drive him to the ER when his fever started responding. I was not happy at all that not one of his doctors called to check on him. Saturday and Sunday he continued to have occasional fevers. I was worried that he may have gotten the flu or some kind of virus because his resistance was so low.
On Monday, the 26th, we met with his Radiation Oncologist before his IMRT. He told us that he thought the shaking chills and fevers were a reaction to the Amifostine, so that was discontinued. That must have been the case, because he never had the problem again. I also told the doctor about my problem on Friday night trying to get ahold of him. He said that never should have happened, that he should have been called immediately, and that he would make sure the answering service would not respond that way again, which I appreciated.
So far Ron has lost 20 pounds. He is still eating when he isn't too nauseated. He sticks to soft foods like scrambled eggs, mashed potatoes and gravy, or rice with gravy, and meat that has been cooked until it's very soft. Also puddings, Jello, cottage cheese, milkshakes. Usually after radiation if he isn't too nauseated, I drive through a fast food restaurant and get him either a shake or a sundae. I also try to get him to drink Carnation Instant Breakfast several times a day for the calories. He supplements with his PEG tube every day also. The easiest way he has found is to use a large syringe without the barrel. He just pours the Ensure or Boost in and lets gravity take over. It takes only a few minutes to get each can in this way. It is always followed by bottled water to flush the tube. His mouth is getting very sore at this point, and his neck very red and dry. He was given special lotion to coat his neck after the radiation. He can't have any lotion on his skin during treatments. Two weeks down, five to go!
One thing to remember before treatment begins is that it is very important to have prescriptions filled and ready at home for side effects from treatment. We already had pain medication available, and the doctor also prescribed Compazine and Ativan for nausea and anxiety. Also, as Ron's caregiver, I am not ashamed to say that at the start of this nightmare, I went to my own doctor and asked for Xanax to help me cope with the really bad days. I knew I would need some help in holding myself together for Ron and for our kids, and it really did help. I am not in any way comparing my problems to the ones Ron faced, but sometimes I think that caregivers don't look after their own well-being. Do not be ashamed or afraid to ask for help if you need it!
Wednesday, September 14, 2005 was Ron's first day of treatment. The day started at 8 a.m. for his first Chemo session. If I remember correctly, this took about 4-5 hours in total. Then we drove about 45 minutes away to another Vince Lombardi clinic for the Radiation. An hour before the IMRT, he was given Amifostine IV to help protect his salivary glands. Our long day ended at about 4 p.m. He had no ill effects from treatment at this early stage.
One thing that helped Ron take his mind off of what was happening during chemo was listening to his favorite music. My sister had sent Ron an entire box full of goodies when he was diagnosed, including a Walkman, various CD's, Live Strong bracelets for the whole family, an inspirational book, and several do rags for when he lost his hair. (He is a Harley rider, so he always wears do rags anyway when he's riding). He never did lose a hair on his head!
September 15, we were at the chemo clinic in the morning for IV fluids. This was a normal part of his treatment. The chemo is so hard on the kidneys that they like it to be flushed out as soon as possible. Ron likes to drink Gatorade also, which helps keep his electrolytes balanced. He has been told to take Compazine about a half hour before each IMRT, which he did during the drive over. Had his Amifostine and radiation with no problems. Later that evening, he started feeling very nauseous. It is a good thing he has the PEG tube in when he doesn't feel like eating anything. Both the chemo clinic and the radiation clinic are very good about giving us plenty of Ensure and Boost to see us through, so we don't actually have to go out and buy it. I guess we're really paying for it anyway, though! Ron actually threw up for the first time on the 16th after his radiation. I was waiting in the car, and I saw him come out of the building. All of a sudden he bent over and threw up in their beautifully landscaped flowerbed! Oh, I felt so bad for him. He had a miserable ride home, holding on to a bucket, and kind of dry heaving. Got home and took more Compazine, and later an Ativan to try to help him sleep.
I think we were both surprised at how soon he experienced the bad stuff we feared. It is such a helpless feeling. I can't really make it better. Yes, I can fix him soup, or give him medication, but other than that, I don't know what to do. Just kind of a miserable night. Thank goodness it was Friday, so he had two days off to look forward to. He was still doing some farming during this time too, when he felt well enough to work. I would get upset at how much he was doing. I thought he should be resting up and conserving his energy, but this is the guy I married. He has never been one to sit still no matter what, and cancer wasn't going to stop him either!
The week of September 19-23 brought some new problems. The Compazine was failing to keep the nausea at bay, so he was given Zofran to try. That didn't work either, so he was told that he could try Kytril. At the time I believe Kytril was fairly new, and the cost was about $100 for ONE pill! Thankfully, we were given enough samples for Ron to take, because he had no prescription insurance. He was also given Salagen this week, because he was beginning to experience dry mouth.
He had two very bad nights this week following radiation. On Thursday and Friday, he had shaking chills and started running a fever. I put him to bed and buried him in blankets, and the bed just shook. I alternated giving him Tylenol and Ibuprofen every 4 hours and felt helpless in between. Of course the worst night was Friday. I called the Lombardi radiation clinic first, and got the answering service. They told me to call the chemo clinic, and then I got THEIR answering service. Their advice=Tylenol. Gee, thanks. I never would have thought of that. I was about ready to bundle him up in the car and drive him to the ER when his fever started responding. I was not happy at all that not one of his doctors called to check on him. Saturday and Sunday he continued to have occasional fevers. I was worried that he may have gotten the flu or some kind of virus because his resistance was so low.
On Monday, the 26th, we met with his Radiation Oncologist before his IMRT. He told us that he thought the shaking chills and fevers were a reaction to the Amifostine, so that was discontinued. That must have been the case, because he never had the problem again. I also told the doctor about my problem on Friday night trying to get ahold of him. He said that never should have happened, that he should have been called immediately, and that he would make sure the answering service would not respond that way again, which I appreciated.
So far Ron has lost 20 pounds. He is still eating when he isn't too nauseated. He sticks to soft foods like scrambled eggs, mashed potatoes and gravy, or rice with gravy, and meat that has been cooked until it's very soft. Also puddings, Jello, cottage cheese, milkshakes. Usually after radiation if he isn't too nauseated, I drive through a fast food restaurant and get him either a shake or a sundae. I also try to get him to drink Carnation Instant Breakfast several times a day for the calories. He supplements with his PEG tube every day also. The easiest way he has found is to use a large syringe without the barrel. He just pours the Ensure or Boost in and lets gravity take over. It takes only a few minutes to get each can in this way. It is always followed by bottled water to flush the tube. His mouth is getting very sore at this point, and his neck very red and dry. He was given special lotion to coat his neck after the radiation. He can't have any lotion on his skin during treatments. Two weeks down, five to go!
Subscribe to:
Posts (Atom)
Posts
