Having announced we have decided to move to Fern's until we can find a place in Missoula, we realized that we need to wait until next weekend. Wayne has chemo again next Friday, the 8th, so we checked with the doctor and decided it is best to wait that week.
He is also going to be titrating down on his tegretal, the epilepsy medicine that he has taken for years and years because it interferes with the chemo. They are wanting to do that over just one week, and so they may need to hospitalize him to safely do that. We asked the neurologist here to talk with Dr. Wilinski, the neurologist Wayne has seen for years and years at the Epilepsy Center at Harborview in Seattle. I am not sure she has talked to him and we haven't heard about when to start the taper. Theoretically, if he has enough of the new medication in his system, then it should go smoothly, but with Wayne and his epilepsy, it is never smooth, nor easy, nor textbook. The doctors always say he is really fragile with his epilepsy, meaning not that he is weak and fragile and hurts easily, just that he has seizures easily and they seem to be set off easily. I am nervous about this new med, especially because we will be so far away from Seattle. And given Wayne's cancer and all the side effects he already has from the radiation and chemo--not to mention the illness itself--I would rather he didn't have a seizure.
I am a bit concerned as well about him going off too quickly and going into status--which is having one seizure immediately following another or seizing for longer than a minute or two at a time. He has a history of this. When he was in the hospital following the first brain surgery they did so they could map out his brain, they needed him to have a seizure, so they put him on an exercise bike and lowered his tegretal and instead of getting one seizure, he had multiple seizures. And those seizures left him with Todd's paralysis--he couldn't feel the inside of his mouth so he was unable to speak clearly. (He also couldn't feel his food and the first morning he had it, he was eating sausage links for breakfast, and they stayed in his cheeks, until his cheeks puffed up like a chipmunk. Donna and Arlen came to visit that day so they may remember, and I think Karen was still there as well. I know that Mandy and I had been asleep because the status started in the middle of the night, but she woke up and got the nurses--and she was only seven. After that I don't think she went back to sleep at all. In all, he had 17 grand mal or partial grand mal seizures within a 12 hour framework. I am going to ask the neurologist here for a prescription for injectable Valium or ativan so that if he should go into status, we will have a way to get him out. It is a very scary thing for me, and I am hardly fazed by his seizures any longer. I just take them in stride.
On another note, I was able to talk with a retired oncologist about Wayne. He volunteers at a local agency called Wellness Place, a place of resources for people with cancer. They have books to borrow and free hats or scarves. They provide Ensure nutritional supplements free--two cases a month. They have all kinds of programs, including matching patients or family members with mentors, who can help process a lot of the information that we get. I told him how tired Wayne is, and he told me that decadron, the steroid he takes to keep his brain swelling under control, can cause him to be tired. As well, apparently tumors themselves cause tiredness. Top that with chemo that he started a week earlier than originally planned and the whole-brain radiation and it's no wonder he is so tired. It was great for me to have that explained so well. I know I have talked about his tiredness before, but this really made me understand. He is his usual cheery self though. He smiles and laughs, makes jokes and talks about growing old. He is positive all the time. And he never, ever, complains. I'm not sure how he does this, but I really admire his ability to do so.
We are really excited to get out of this dreadful motel. Wayne is looking forward to having a place to work on his quilting, and I am looking forward to practicing my cake decorating again. And we are both looking forward to getting to Montana and getting settled in a place of our own.
Wednesday, September 29, 2010
Sunday, September 26, 2010
Tumor vaccine
When we get 12 posted comments on one entry, it tells me that I need to write a new entry. We are still in Wenatchee, wishing we had an apartment in Missoula. Glenda is trying, and the complex we'd like to go into has a waiting list for ground floor apartments. We are going stir crazy here. There is very little room so it's hard to find anything to do other than be on the computer, watch TV, read or listen to music. Wayne really needs to have a place to work on his quilts. He hasn't done anything on them in months.
I don't know if I ever mentioned the tumor vaccine that I read about. My cousin, Marrisha, spotted the article on CNN. It was about a man who had inoperable brain tumors and who underwent a procedure that worked. The doctor went in and took a piece of the tumor. Then he used it to make a vaccine for that specific type of cancer, re-injected it, and a year and a half later, the man had no tumors in his brain.
So I wrote to the doctor, hoping that he might still be doing that trial and that Wayne might be eligible. The doctor is in San Fransisco, and we both have family in the area. The doctor wrote back and said he'd have his assistant triage us, but what we got was a list of trials going on. There is a trial for the vaccine and it is specifically for patients with metastatic, non small cell, adneo carcinoma lung cancer, which had spread to the brain. Bingo! That's Wayne. However, the study is in Tampa Florida, so we are not sure we can do that, even if he were accepted.
But I am going to write to them anyway, and see what we can do. If it's meant to be, the way will show itself.
Meanwhile, Wayne is doing okay. He tires really easily and spends a great deal of time lying down, listening to music on his MP3 player. Boy what that the best investment I ever made! He has a lot of songs on it, and it saves him from being totally bored. The tiredness is called cancer fatigue. It stems from the disease as well as the treatment. Our friend Denise went through it when she had chemo two years ago. She said that it was horrible because she couldn't really sleep, but she was so tired all she could do was lie there. She wasn't able to watch TV or movies because she couldn't concentrate well enough to follow along. This seems to be true for Wayne as well. He either sits outside and watches cars go by or he is lying down listening to music. And sometimes he falls asleep. But you don't have to concentrate when you listen to music, so it really is the thing that makes it easier for Wayne.
For Denise, the tiredness hit following each chemo treatment, but for Wayne, it seems to have hit following his radiation. He did great all through it, but afterward he has been really tired. Also, I think they started the chemo two weeks earlier than originally planned because his tumors hadn't shrunk much. So he didn't really get that recovery time he needed in between. But he doesn't complain. He just accepts what is happening and uses his energy to be positive and fight.
He is up for finding out more about the vaccine trial in Tampa. I will write more about it when I hear back from them. Meanwhile, thanks to everyone for your prayers love and comments. Keep them coming. Wayne really loves hearing all of them.
I don't know if I ever mentioned the tumor vaccine that I read about. My cousin, Marrisha, spotted the article on CNN. It was about a man who had inoperable brain tumors and who underwent a procedure that worked. The doctor went in and took a piece of the tumor. Then he used it to make a vaccine for that specific type of cancer, re-injected it, and a year and a half later, the man had no tumors in his brain.
So I wrote to the doctor, hoping that he might still be doing that trial and that Wayne might be eligible. The doctor is in San Fransisco, and we both have family in the area. The doctor wrote back and said he'd have his assistant triage us, but what we got was a list of trials going on. There is a trial for the vaccine and it is specifically for patients with metastatic, non small cell, adneo carcinoma lung cancer, which had spread to the brain. Bingo! That's Wayne. However, the study is in Tampa Florida, so we are not sure we can do that, even if he were accepted.
But I am going to write to them anyway, and see what we can do. If it's meant to be, the way will show itself.
Meanwhile, Wayne is doing okay. He tires really easily and spends a great deal of time lying down, listening to music on his MP3 player. Boy what that the best investment I ever made! He has a lot of songs on it, and it saves him from being totally bored. The tiredness is called cancer fatigue. It stems from the disease as well as the treatment. Our friend Denise went through it when she had chemo two years ago. She said that it was horrible because she couldn't really sleep, but she was so tired all she could do was lie there. She wasn't able to watch TV or movies because she couldn't concentrate well enough to follow along. This seems to be true for Wayne as well. He either sits outside and watches cars go by or he is lying down listening to music. And sometimes he falls asleep. But you don't have to concentrate when you listen to music, so it really is the thing that makes it easier for Wayne.
For Denise, the tiredness hit following each chemo treatment, but for Wayne, it seems to have hit following his radiation. He did great all through it, but afterward he has been really tired. Also, I think they started the chemo two weeks earlier than originally planned because his tumors hadn't shrunk much. So he didn't really get that recovery time he needed in between. But he doesn't complain. He just accepts what is happening and uses his energy to be positive and fight.
He is up for finding out more about the vaccine trial in Tampa. I will write more about it when I hear back from them. Meanwhile, thanks to everyone for your prayers love and comments. Keep them coming. Wayne really loves hearing all of them.
Monday, September 20, 2010
New MRI
Because Wayne was having problems with balance again, and feeling weak on the left side as well as being dizzy, he went into the hospital yesterday. They decided to get an MRI again today to see what's going on, and without the radiologist's read, the neurologist thought it looked good, and that a couple of the tumors had decreased in size a bit. Who Hoo! His balance is back to his new normal.
(In the meantime, Glenda is looking for an oncologist in Missoula and trying to find temporary housing while we wait for an apartment, We'd rather go to Montana sooner than later.)
However, they think that this may have been caused by the chemo and how it interacts with Wayne's other medicines, particularly tegretal, which is his tried and true epilepsy med. But it interferes with so many other medicines that they really want to change his med. I called the epilepsy specialist who Wayne sees in Seattle, Dr. Wilinksi, and he said to go ahead and make the change. They are going to keep Wayne in the hospital tonight and tomorrow to see how he reacts to the new med and then release him if he is doing well. They will taper his tegretal down and we'll have to watch for seizures. But if the new med works as well as tegretal, the we will be really happy because it doesn't really react much with any other meds. I will know more tomorrow, including the official MRI report and then we will go from there. I'll put us another post when I have more to report.
Sunday, September 19, 2010
Back in the Hospital
Wayne did really well with his chemo--we thought. They told him that carboplantin had the nasty habit of hitting people with nausea on the second and third days, but Wayne only had mild problems that were totally controlled by his compazine. So we thought he was going to do very well.
Then he woke up this morning and he was dizzy and off balance again. I called the on-call oncologist, and after discussing everything, including our living quarters, she suggested coming in to the hospital. So we packed him up, and went to the ER to be admitted. But first the ER doctor ran a number of tests, including a CT of the brain. She said she was looking for fluid buildup. We don't know what is causing this because she couldn't tell from the CT, but it could just be a side effect of the chemo. Maybe we'll know more tomorrow when Dr, Tucker comes along.
What we do know is that we have to get out of that motel room we're living in. It's terrible. There is just no room to move in it. So we are considering going to Montana this week. Fern offered for us to stay with her, but with the health issues Wayne has, I think we need to be in Missoula. Glenda thinks that she might be able to get us a better price at the hotel where she works and if so, that would be perfect. It will likely be easier to find a place to live if we're already there. So we will see if we can work out the logistics, find an oncologist over there, and make an appointment for our first day there, so that if an emergency comes up, he has a doctor already, and get moved. We can come back for the rest of our stuff.
Saturday, September 18, 2010
First Chemo
Because we decided to move to Montana, and because the radiation didn't work as well as we expected or had thought after seeing the PET scan, Dr. Tucker decided to start chemo two weeks earlier than planned. Before I go in to that, I need to clear up the confusion about the PET scan results. Thanks to Fern for asking the right questions!!! I did not explain the new MRI results with any discussion of the PET results that didn't show tumors. Apparently PET scans don't always show what is really going on in the brain. Because Wayne was having more balance issues as he tapered down on the steroid that was keeping his brain from swelling, the doctor ordered another MRI. It showed that the tumors may have gone down just a bit, but the swelling was worse, So he went back up to the higher dose of steroids and got going quickly on the chemo, which is now the only chance we have of shrinking both the brain and the lung tumors: because Wayne had whole brain radiation, he cannot have additional radiation to his brain because it would cause too much damage,
So after getting the port in on Thursday, Friday morning Wayne started chemo. He was nervous and didn't sleep too well the night before. I sure understand that; I didn't sleep too well either. But the best part was that Donna and Arlen (Wayne's sister and brother-in-law) came over for it. They sent a couple emails wondering if they should come at all and then sent another saying they had to come, both for us and for themselves, I am so glad they did. They were there at the hospital waiting for us, and we all went back to the chemo room together. I can't tell you how happy Wayne was to see them. Having family around is a real blessing.
First they did his prechemo labs, and then started the nausea meds. They went in really fast, and then he had to wait half an hour to get the other two. The newer one went first and was given "IV push" style, which only took ten minutes. Then the carboplantin, which took 45 minutes. We were out of there in just over two hours and Wayne felt great. They sent him home with compazene for nausea, and he didn't have to take one until late afternoon. The chemo didn't affect his appetite. He had a pretty good sized breakfast right afterward--all of his large breakfast and some of mine. Then he was ready to rest.
We headed back to the motel, got Donna and Arlen a room and Donna and I went to the store to buy ingredients for galbi, pa jeon, and wasabi napa cabbage salad. (This is a Korean barbecue that everyone I have ever fed it to has loved.) When I decided to try making this dinner in the minuscule kitchen I have here all I really considered was that I could fry it rather than barbecuing it. However, I didn't consider the work that goes into it and the fact that I have no counter space or anything to cut veggies on. Still, I did make it work. Donna was helping me do various things, and we were talking about cooking in tight quarters, so I told her the story of our second Thanksgiving in Korea.
First, Korean apartments don't come with ovens. You get a two burner gas stove and that's it. Most westerners buy toaster ovens and we were no exception. We had to work on Thursday of course, but that Saturday I made dinner. Our friend, Kelly, who was working in Seoul, went to a foreign market there and got us an 11 pound turkey. On Friday night she carried that thing all the way down to Daejeon on the bus along with all the things she needed to the weekend. We thawed it in the sink with cold running water and in the morning I made stuffing, ( I took all my spices with me to Korea because I knew from the previous time that there were a lot I would not be able to buy there.) Then I borrowed toaster ovens and set up a second table. I cut that turkey into five pieces, put some stuffing with each one and wrapped them all up in tin foil. Then I put them in the toaster ovens. Here at home you can probably set a toaster over for up to an hour or more, but all the ones I borrowed had to be reset every fifteen minutes and mine only made it thirty minutes. I called it the Dance of the Toaster Ovens. At any rate, I managed to cook the whole turkey and make the entire dinner, pumpkin pie included, and then we had about ten people in our little 500 square feet apartment eating it. It was a blast, but it taught me that we can do a lot with a little.
So making galbi in this kitchen wasn't nearly as hard as I may have thought although since our table is covered with groceries we took it all over to Donna and Arlen's room to eat. Wayne seemed to really enjoy it as did Donna and Arlen. I even got out the go goo jeong, that Korean red pepper paste, and Arlen really liked that. Wayne made it through the night without any significant nausea, and he is taking the compazene on schedule in order to stay ahead of it. The nurse did tell us that the carboplantin has a nasty reputation for hitting hard on days two or three with nausea, but so far today he is doing okay. He'll have one more round of this in three weeks and then another CT and MRI to be sure this is the right chemo.
Oh, and the financial worker at Wenatchee Valley Medical Center called while we were there, and told us that Wayne has finally been approved for Medicaid! Yeah! What relief that is. While we can get some of his meds from the VA, we have been paying for all the rest. I think that we will be getting some money back from the pharmacy here. He's been approved back to May first. They are still working on mine, but I can't imagine that they wouldn't approve it. What a relief.
Wayne still has a wonderfully positive attitude and has been joking about the things we'll be doing when we're ninety! If anyone can get through this he can. So keep those prayers and spiritual work coming. We want him to win the war!
.
Thursday, September 16, 2010
Port-a-cath
Just a quick update to say that Wayne had his port-a-cath, an under-the-skin port for use with his chemo, implanted surgically today. The procedure was short--twenty minutes, and he didn't even spend much time in recovery. The worst part was that although they wouldn't let him eat after midnight last night or drink anything after 11 am today, they didn't get him into surgery until after four! He spent more time in the admitting room than he did in surgery and recovery combined! By the time the doctor took me back to recovery, Wayne was sitting up wide awake drinking apple juice and asking for food, which they promptly brought. He made short work of two packages of pudding, one apple sauce, one jello and a plate full of various crackers. Then we left, stopped at the store and bought him a new pair of jeans because he has outgrown all his old ones, and went out to eat, where he ate a hot turkey sandwich with potato soup and mashed potatoes and gravy.
All that food is getting to him. His belly is still growing and his face is rounded. He looks great to me, and he is gaining fast. As of today, he weighs 156 and is in the biggest sized pants he's ever been in. And he just came in from outside and now is eating chocolate pudding out of the bowl he made it in. He is really enjoying his food, and I am really glad. I hope that continues after he starts chemo.
Yesterday we went to Leavenworth because I had an appointment with my doctor. He lost his first wife to cancer the year after the Sorenson family reunion. They were our next door neighbors, and I remember how quickly she went downhill. When we talked about Wayne, I told him I knew he knew how I was feeling. He told me that there would be bad days, but that there would be great days, that will become cherished memories. With that in mind, after my appointment, we decided to play tourist and check out all the new shops downtown. We had a great time, and we ate our way from one end of Front Street to the other. We got cream filled cream puffs at the Danish bakery, ice cream at Bearly Perfect, and taffy from the taffy store. And while I was at the doctor's, Wayne was enjoying a free meal at King Ludwig's. Then we went for Chinese (hoping to recreate our memories of eating Chinese delivery in Korea. It didn't work, but we had a great time anyway.) We had a great time and although he may have said good bye to friends who work downtown, we didn't dwell on that at all. And we also got a couple of angels: a guardian angel lapel pin for Wayne, a courage angel lapel pin for me, and and angel of hope worry stone to share. Our day yesterday is a memory I will cherish, regardless of the outcome of his cancer.
Tomorrow morning, he starts chemo. He's getting carboplantin, and old but strong drug that works well for his type of lung cancer. To that Dr. Tucker has added a newer one called pemetrexed. They give anti-nausea meds before they start the chemo, and although he will lose all the hair on his body, he shouldn't get too sick. I really hope the doctor is right about that because I think Wayne needs to be able to eat. Donna and Arlen are coming to be here for his first treatment, and Wayne is excited to see them. I think that one of the good things that is coming out of his cancer is he is getting to see his family more.
I'll write again tomorrow after chemo, when we find out how well he did with it.
Tuesday, September 14, 2010
Talk with the Doctor
Today we went to talk to Dr. Tucker, Wayne's oncologist. We wanted to discuss the meaning of the results of the MRI as well as tell him that we have decided to move to Missoula for to be near family. He told us he thought that is a very good idea. He said the upcoming months could be rough.
However, he is the maverick that we need. Once again, he was able to give us hope in a situation where other doctors would not. He told us that he had a patient in Texas who did not respond to the radiation in the brain either. For that patient, again with the same type of cancer Wayne has, chemo was the answer. He wasn't able to "cure" her, but he was able to keep her alive for seven years. He didn't say, but it sounded like she is still alive now. Can you imagine what seven years could bring? It could bring a cure.
Dr. Tucker was not as enthusiastic about putting chemo directly into the brain via a port. He explained that there are some cancers that does work well for: breast cancer, for one, but it doesn't work for lung cancers, and so it wouldn't be an option. But even though we are told that chemo doesn't go past the brain/blood barrier easily, he said that it absolutely can. Time, however, is of the essence.
So he is going to start Wayne's chemo on Friday morning. Tomorrow we go and talk to the surgeon about getting the port put in, Thursday morning he gets the port in, and Friday morning he gets his first round of chemo. The idea is that no matter where we are, Wayne should get two rounds of chemo and then have an MRI of his brain and a CT of his lungs. If the tumors are reducing in size, then they can continue with the same drugs. However, if not, then they can change the drugs and try something else. The idea is to find the chemo drugs that his tumors respond best to and then go a full course.
If it works, then likely eventually he may need to repeat it. I think the idea is to keep the tumors under control without beating Wayne up too much. And Dr. Tucker did say that even at this point some doctors would just offer to keep Wayne comfortable. But Wayne is a fighter. We all know that. I have watched him fight for years. He had to learn to read and write three times; he had to relearn vocabulary; he had to relearn to converse: he's been through hell with his epilepsy and he always comes out on top, smiling and laughing. He is not ready to give up or give in, and it's important that we all support that. Whatever Wayne decides he wants to do, I am right there with him. If he wanted to go to Timbuktu I'd be ready to go.
But, because of the swelling in his brain, Wayne still has to take the full dosage of his steroid, decadron. The advantage of this is that he has much better balance than he had for the last couple of months before his cancer was diagnosed. The additional advantage is that he is eating a lot and gaining weight. He weighs more now than he ever has, and he looks great. The only downside is that I think he is going to need new pants! There is no way he will get long johns under his jeans; he is barely getting the jeans on now! I told him I'd love him just as much fat and bald!!
Again, thanks to everyone who is reading and commenting on the blog--even if the comments are in emails or phone calls. I am reading every response and email to him. Your love and concern go a long way toward keeping Wayne's morale up. He is still laughing and finding the humor in every situation. And as long as he can do that, he is ahead of the game.
However, he is the maverick that we need. Once again, he was able to give us hope in a situation where other doctors would not. He told us that he had a patient in Texas who did not respond to the radiation in the brain either. For that patient, again with the same type of cancer Wayne has, chemo was the answer. He wasn't able to "cure" her, but he was able to keep her alive for seven years. He didn't say, but it sounded like she is still alive now. Can you imagine what seven years could bring? It could bring a cure.
Dr. Tucker was not as enthusiastic about putting chemo directly into the brain via a port. He explained that there are some cancers that does work well for: breast cancer, for one, but it doesn't work for lung cancers, and so it wouldn't be an option. But even though we are told that chemo doesn't go past the brain/blood barrier easily, he said that it absolutely can. Time, however, is of the essence.
So he is going to start Wayne's chemo on Friday morning. Tomorrow we go and talk to the surgeon about getting the port put in, Thursday morning he gets the port in, and Friday morning he gets his first round of chemo. The idea is that no matter where we are, Wayne should get two rounds of chemo and then have an MRI of his brain and a CT of his lungs. If the tumors are reducing in size, then they can continue with the same drugs. However, if not, then they can change the drugs and try something else. The idea is to find the chemo drugs that his tumors respond best to and then go a full course.
If it works, then likely eventually he may need to repeat it. I think the idea is to keep the tumors under control without beating Wayne up too much. And Dr. Tucker did say that even at this point some doctors would just offer to keep Wayne comfortable. But Wayne is a fighter. We all know that. I have watched him fight for years. He had to learn to read and write three times; he had to relearn vocabulary; he had to relearn to converse: he's been through hell with his epilepsy and he always comes out on top, smiling and laughing. He is not ready to give up or give in, and it's important that we all support that. Whatever Wayne decides he wants to do, I am right there with him. If he wanted to go to Timbuktu I'd be ready to go.
But, because of the swelling in his brain, Wayne still has to take the full dosage of his steroid, decadron. The advantage of this is that he has much better balance than he had for the last couple of months before his cancer was diagnosed. The additional advantage is that he is eating a lot and gaining weight. He weighs more now than he ever has, and he looks great. The only downside is that I think he is going to need new pants! There is no way he will get long johns under his jeans; he is barely getting the jeans on now! I told him I'd love him just as much fat and bald!!
Again, thanks to everyone who is reading and commenting on the blog--even if the comments are in emails or phone calls. I am reading every response and email to him. Your love and concern go a long way toward keeping Wayne's morale up. He is still laughing and finding the humor in every situation. And as long as he can do that, he is ahead of the game.
Sunday, September 12, 2010
Moving
We have decided to move to Montana. I wish I had better news on the cancer front, but we are being told that at this point the radiation to the brain didn't work, so we are looking at chemo to prolong life rather than cure cancer. Given this news, Wayne decided he'd like to go home. We have talked with a number of people, including our daughter, and the consensus is that moving to Montana is the right thing to do. We discussed where in Montana and have decided that Missoula is the best place. Wayne can get good medical care there, and it might be easier for me to find a job there.
We are talking to Glenda, Wayne's sister, and she is going to help us find a place to live and get us moved over there. He will have two other sisters nearby: Fern in Plains and Carol Ann in Kalispel. He has two nieces and a nephew in Missoula as well, so he will be surrounded by family. I think this is a wonderful thing for him, and I will enjoy getting to know his family better. I have known them all for many years, but never well, so this will give me a new opportunity to connect with them.
And maybe, once he is surrounded by all that love and care, a miracle will happen. There are a few new things for brain tumors on the cancer front. We discovered that they can take a piece of a tumor and use it to make a vaccine for that specific type of cancer. We also learned that it is possible to put a port directly into Wayne's brain to shrink the tumors with chemotherapy. Brain tumors don't usually respond to regular chemo because it doesn't cross the blood/brain barrier every well. So we do have things to check out. Wayne is still up for the fight, and so we will all support him in that fight. Keep praying for a miracle!
We are talking to Glenda, Wayne's sister, and she is going to help us find a place to live and get us moved over there. He will have two other sisters nearby: Fern in Plains and Carol Ann in Kalispel. He has two nieces and a nephew in Missoula as well, so he will be surrounded by family. I think this is a wonderful thing for him, and I will enjoy getting to know his family better. I have known them all for many years, but never well, so this will give me a new opportunity to connect with them.
And maybe, once he is surrounded by all that love and care, a miracle will happen. There are a few new things for brain tumors on the cancer front. We discovered that they can take a piece of a tumor and use it to make a vaccine for that specific type of cancer. We also learned that it is possible to put a port directly into Wayne's brain to shrink the tumors with chemotherapy. Brain tumors don't usually respond to regular chemo because it doesn't cross the blood/brain barrier every well. So we do have things to check out. Wayne is still up for the fight, and so we will all support him in that fight. Keep praying for a miracle!
Friday, September 10, 2010
New MRI Results
For the past several days, Wayne has been getting more unsteady on his feet again. While he never made it back to mountain goat status, he was pretty stable on his walker and had good strength in both sides of his body. On Wednesday I noticed a bit of a problem and by yesterday, it was obvious that the balance issue was exacerbated.
We went to our chemotherapy "teach" appointment yesterday, and while there let them know about Wayne's balance exacerbation. They were able to get him an MRI very quickly. There had been a cancellation just when the nurse called and he was able to go straight on down. Today we were told that his MRI looks about the same as it did the first time, with a bit more swelling in one area. Obviously I was shocked. I had taken that PET scan that didn't show any tumors to heart. But apparently this isn't necessarily bad news. The radiation can take some time to shrink the tumors and it continues to work for four to five weeks after stopping, so it could still take them down. As well, some might be just shadows so we really don't know anything. But it is frustrating and frightening not to know.
However, Wayne has to increase his decadron, which is the steroid that keeps the swelling down in his brain. This is not a bad thing, but he is still gaining weight and I think that with the steroid back up to the higher dose, he is going to grow out of his clothes! His jeans are really getting tight.
Thank you to everyone who is writing, either here or to my email and to everyone who is praying for Wayne. We appreciate every one of you. Wayne isn't writing emails but I am reading them to him as well as all your comments.
We went to our chemotherapy "teach" appointment yesterday, and while there let them know about Wayne's balance exacerbation. They were able to get him an MRI very quickly. There had been a cancellation just when the nurse called and he was able to go straight on down. Today we were told that his MRI looks about the same as it did the first time, with a bit more swelling in one area. Obviously I was shocked. I had taken that PET scan that didn't show any tumors to heart. But apparently this isn't necessarily bad news. The radiation can take some time to shrink the tumors and it continues to work for four to five weeks after stopping, so it could still take them down. As well, some might be just shadows so we really don't know anything. But it is frustrating and frightening not to know.
However, Wayne has to increase his decadron, which is the steroid that keeps the swelling down in his brain. This is not a bad thing, but he is still gaining weight and I think that with the steroid back up to the higher dose, he is going to grow out of his clothes! His jeans are really getting tight.
Thank you to everyone who is writing, either here or to my email and to everyone who is praying for Wayne. We appreciate every one of you. Wayne isn't writing emails but I am reading them to him as well as all your comments.
Sunday, September 5, 2010
Chemotherapy Versus Radiation
I wish I had great news to report, but I don't. When we talked to Dr. Tucker last week, he said that the best chance for a cure would be doing radiation to Wayne's lung, with low-dose chemo at the same time. However, he was concerned about the condition of Wayne's lungs. He said he'd talk to Dr. Register the radiologist-oncologist and we'd decide on Friday.
On Friday, we went in and Dr. Tucker told us that he had talked to Dr. Register as well as to his mentor, who is a lung cancer specialist. They all agreed that to do the radiation right now would at best cause a great deal of damage to Wayne's lung. Apparently Wayne has advanced emphysema. His lungs have a number of collapsed air sacks. Radiation causes scarring and that will damage the healthy lung tissue that Wayne has left. Because the tumor is so large and there are some lymph nodes in other parts of the lung, they would have to radiate the entire lung. They just can't take that chance because at best Wayne would have to go on oxygen for life and at worst it could kill him now. This was not at all what we wanted to hear.
So what they want to do is a round of a much more aggressive chemotherapy first and see if it will shrunk the tumor enough that they can just radiate one small spot on the lung. As well, they will get another MRI of the brain to be sure the tumors are gone there. If they are, and the lung tumor is smaller, then they will go ahead and do the radiation at that point. So it's going to be a while before we know anything.
The chemo won't start for three weeks because they want Wayne to recuperate some from the radiation. And the effects of the radiation continue for up to four more weeks. Right now he is exhausted much of the time. He has lost interest in most everything and spends most of his time lying down with his mp3 player, listening to music. He sleeps a lot as well. But sometimes he can't sleep. When he is up he likes to just sit and talk. This tiredness is called cancer fatigue, which is a byproduct of radiation or chemotherapy. We expect that it will get worse before it gets better.
Our wonderful friend Denise, who flew out from Missouri to help when Wayne was in the hospital, had colon cancer. She was subjected to six months of aggressive chemo, and she said that it got worse each round. She had hers every two weeks. Wayne will be getting six treatments, each three weeks apart. They give time in between for the body to recover some before the next, so I think that since his is a three week recovery, it is going to be a tough one. As well he is going to have to get a cathaport put in so that the chemo won't burn his veins. That will be put in by a surgeon in a couple weeks.
As for the prognosis, we don't really know yet. It is possible that the chemo will shrink the tumor enough to radiate. And it is possible that the radiation will still get rid of the rest of the tumor. But we don't know for sure. We don't even know if he will get to have the radiation, and without it, there is no chance for a cure.
And although he has agreed to stop smoking, he hasn't yet. He says he is tapering down, but I still think he's smoking a lot. I know how hard it is. I did it 14 years ago, but if he doesn't stop the whole treatment thing will be moot. Nagging doesn't help at all. Rather it makes him want to smoke more. But if anyone has any ideas on ways to help him quit, I am open to hearing them. I can then gently pass them along to him.
We have moved into temporary housing at a hotel that takes people on weekly or monthly rates. We will be trying to find an apartment for the next few weeks and with luck, we can move into one soon. Meanwhile, this isn't the worst living situation. We could have gone to the homeless hotel, where there are degenerates and shared kitchens and TVs and no air conditioning and rooms 8x8! Yikes! This hotel room is better than the studios they gave the teachers in Korea who were single. At least this room has a stove with four burners and an oven!
I had expected to find some dishes to use, but there were none at all, so we went to the Goodwill and found a couple of really pretty plates as well as some other things that we will need. The plates are really Asian looking, square, with light yellow calla lilies and white and black. We are always drawn to Asian looking things. When I got them home and started washing them, I noticed on the back that they were made in Korea!
I am reading Wayne all the comments, so keep them coming! I hope you all are having an easier time getting on. Wayne needs lots of support and love right now. The news on Friday was really upsetting to both of us. Keep all those prayers going as well. We really appreciate that.
On Friday, we went in and Dr. Tucker told us that he had talked to Dr. Register as well as to his mentor, who is a lung cancer specialist. They all agreed that to do the radiation right now would at best cause a great deal of damage to Wayne's lung. Apparently Wayne has advanced emphysema. His lungs have a number of collapsed air sacks. Radiation causes scarring and that will damage the healthy lung tissue that Wayne has left. Because the tumor is so large and there are some lymph nodes in other parts of the lung, they would have to radiate the entire lung. They just can't take that chance because at best Wayne would have to go on oxygen for life and at worst it could kill him now. This was not at all what we wanted to hear.
So what they want to do is a round of a much more aggressive chemotherapy first and see if it will shrunk the tumor enough that they can just radiate one small spot on the lung. As well, they will get another MRI of the brain to be sure the tumors are gone there. If they are, and the lung tumor is smaller, then they will go ahead and do the radiation at that point. So it's going to be a while before we know anything.
The chemo won't start for three weeks because they want Wayne to recuperate some from the radiation. And the effects of the radiation continue for up to four more weeks. Right now he is exhausted much of the time. He has lost interest in most everything and spends most of his time lying down with his mp3 player, listening to music. He sleeps a lot as well. But sometimes he can't sleep. When he is up he likes to just sit and talk. This tiredness is called cancer fatigue, which is a byproduct of radiation or chemotherapy. We expect that it will get worse before it gets better.
Our wonderful friend Denise, who flew out from Missouri to help when Wayne was in the hospital, had colon cancer. She was subjected to six months of aggressive chemo, and she said that it got worse each round. She had hers every two weeks. Wayne will be getting six treatments, each three weeks apart. They give time in between for the body to recover some before the next, so I think that since his is a three week recovery, it is going to be a tough one. As well he is going to have to get a cathaport put in so that the chemo won't burn his veins. That will be put in by a surgeon in a couple weeks.
As for the prognosis, we don't really know yet. It is possible that the chemo will shrink the tumor enough to radiate. And it is possible that the radiation will still get rid of the rest of the tumor. But we don't know for sure. We don't even know if he will get to have the radiation, and without it, there is no chance for a cure.
And although he has agreed to stop smoking, he hasn't yet. He says he is tapering down, but I still think he's smoking a lot. I know how hard it is. I did it 14 years ago, but if he doesn't stop the whole treatment thing will be moot. Nagging doesn't help at all. Rather it makes him want to smoke more. But if anyone has any ideas on ways to help him quit, I am open to hearing them. I can then gently pass them along to him.
We have moved into temporary housing at a hotel that takes people on weekly or monthly rates. We will be trying to find an apartment for the next few weeks and with luck, we can move into one soon. Meanwhile, this isn't the worst living situation. We could have gone to the homeless hotel, where there are degenerates and shared kitchens and TVs and no air conditioning and rooms 8x8! Yikes! This hotel room is better than the studios they gave the teachers in Korea who were single. At least this room has a stove with four burners and an oven!
I had expected to find some dishes to use, but there were none at all, so we went to the Goodwill and found a couple of really pretty plates as well as some other things that we will need. The plates are really Asian looking, square, with light yellow calla lilies and white and black. We are always drawn to Asian looking things. When I got them home and started washing them, I noticed on the back that they were made in Korea!
I am reading Wayne all the comments, so keep them coming! I hope you all are having an easier time getting on. Wayne needs lots of support and love right now. The news on Friday was really upsetting to both of us. Keep all those prayers going as well. We really appreciate that.
Thursday, September 2, 2010
How to Post and Other Things
I just got an email from Carol telling me she was unable to post comments. So I started writing her back and realized that others of you might need the info as well, so here it is.
The comments are at the very bottom of each post. There are comments there already that you should be able to read. I think that to post a comment, you have to have a gmail account. That's pretty easy though and once you have it you don't ever have to use it except for this. I do know that getting the gmail account can be a pain sometimes. They give you some characters to input that are supposed to match theirs and I can not tell you how many times I have had to do that part up to three or four times when creating an email. (I was managing a supported employment company in Wenatchee and I used to create emails for my clients every day.) Once you get past that hurdle though all you have to do is sign in at the blog site and you will be able to post comments. Let me know if you still have trouble. Donna said she couldn't get on either, but we have another friend who got on just fine.
You should see Wayne. He is taking steroids and he has gained weight! He dropped about 10 pounds before he was diagnosed, but he has put that back on and more. He is getting a pretty good tummy on him and his face is rounded. His clothes are going to be too small if he keeps gaining. But he looks great at his weight! I'll take some pictures. He's also almost bald. We cut his hair off in anticipation of its falling out during the radiation process. They were concerned that if he left it, the mask they made him wouldn't fit. However, it didn't fall out, so now he has a buzz cut because what was cut is starting to grow back in. But it will just come out again with the chemo he is going to start next week. I'll take some pictures and get them up or I'll have Amanda do that.
We are moving on Friday so while I will make every effort to get a post up I can't make any promises. As I mentioned before, we were asked to leave with very little notice, so we aren't sure where we are going. But we'll let everyone know as soon as we can.
The comments are at the very bottom of each post. There are comments there already that you should be able to read. I think that to post a comment, you have to have a gmail account. That's pretty easy though and once you have it you don't ever have to use it except for this. I do know that getting the gmail account can be a pain sometimes. They give you some characters to input that are supposed to match theirs and I can not tell you how many times I have had to do that part up to three or four times when creating an email. (I was managing a supported employment company in Wenatchee and I used to create emails for my clients every day.) Once you get past that hurdle though all you have to do is sign in at the blog site and you will be able to post comments. Let me know if you still have trouble. Donna said she couldn't get on either, but we have another friend who got on just fine.
You should see Wayne. He is taking steroids and he has gained weight! He dropped about 10 pounds before he was diagnosed, but he has put that back on and more. He is getting a pretty good tummy on him and his face is rounded. His clothes are going to be too small if he keeps gaining. But he looks great at his weight! I'll take some pictures. He's also almost bald. We cut his hair off in anticipation of its falling out during the radiation process. They were concerned that if he left it, the mask they made him wouldn't fit. However, it didn't fall out, so now he has a buzz cut because what was cut is starting to grow back in. But it will just come out again with the chemo he is going to start next week. I'll take some pictures and get them up or I'll have Amanda do that.
We are moving on Friday so while I will make every effort to get a post up I can't make any promises. As I mentioned before, we were asked to leave with very little notice, so we aren't sure where we are going. But we'll let everyone know as soon as we can.
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