This will be short, but I just wanted to let everyone know that it is day 4, post chemo, and Wayne is feeling good. He is doing great! No nausea, no balance issues, no problems. Days 3 and 4 are ususally the worst, so I am really hoping he is going to have no side effects this time. He migbt next week though, after he receives the avstin for the first time. But with luck, things will go smooothly that time tim too.
Wayne has had more energy this week that he's had in a long time. He is able to do some easy chores again and that makes him quite happy. It is so hard to have everyone doing everything for you. I know this. Hi is able to bath without assistance, and that is a biggie. It's pretty hard to hae to ask for help in that area. I have had to experience it, and now so has Wayne. He is getting up and down the stairs to bring me things so I can cook and he is neither winded nor unbalanced, and he is so hapopy about it! He takes out the garbage and makes cleaning the kitchen easier for me. He isn't quite back to his old self, but he is much better than when we were in Wenatchee. He loves sitting outside listening to music, looking out over tyhe mountains. It's such a gorgeous view, and he feels well enough to enjoy it. I think he was getting depressed in that awful motel room, but he isn't depressed now.
And he is making two packs of cigerettes last a whole week. I think one of these days he is going to just suprise me and quit. I am doing my very best not to harp on him about it while still encouraging him to do it. It's a fine line as anyone who has smoked and tried to quit would understand. He wants to quit, but it's a crutch that helps him deal with things, so quitting is really hard.
Thanks for all those prayers! Please keep them coming!
Friday, October 29, 2010
Wednesday, October 27, 2010
Chemo, MIssoula Style
I'm sorry I haven't updated the blog as often as I'd have liked. We went to Missoula Monday for Wayne's first appointment with the new oncologist, and we like him. In talking to him though, I realized that Dr. Tucker, who we liked, changed Wayne from a cure path to a palliative one without letting us know that was what he was doing. He was talking about chemo going over the blood brain barrier and encouraging us to wait and see if it worked.
Well, it didn't. Wayne's lung tumor is a centimeter bigger. And there is no change in the brain MRI. The brain tumors are smaller, due to radiation, not chemo, but they are not a lot smaller. The original chemo Dr tucker was going to use was carboplatin and taxel. But when Wayne was not going to be able to have radiation to his lungs because of his advanced emphazema, he changed his mind about using taxel.
The new doctor, who we went with based on Fern saying she though he would fight harder, changed Wayne to taxel and has also changed around the way things are given. Wayne has been getting chemo every three weeks, and for two of those weeks, he was knocked on his butt afterward, but Dr. Nickles said that's not necessary and the results won't chage a bit whether Wayne gets smaller doses every week or if he gets big doses every three weeks. So He will be getting chemo every week from here on out. Every other week, they will also add in avastin, which is fairly strong and even in small amounts can only be given once every other week. He said these have a better chance of crossing that barrier as well as helping with the chest tumor.
We were all so worried about Wayne's brain, that we forgot about the lung. But this is lung cancer, not brain cancer, and so we have to treat it that way. We're really hoping that this new protocol will work. The odds aren't great--Ive seen the numbers--but for every person who has not beaten the odds, I can name two or three who have.
It is time to try alternatives and look at Tampa. We have had a number of products suggested for Waybe's use. The only problem is that I don't have the money to buy any of them. So while I am looking up alternative treatments, I am also looking for funding. In watching tv we learned that several types of lung csncer can be caused by working with asbestos. Wayne worked with it in the Navy, so I am absolutely pursuing that. I don't need the millions promised in the ads, but enough to try everything we want to try. I don't care how we do it: I just want my husband well.
He is also going to be having a second opinion about the changing of his epilepsy drugs and whether or not they might be able to operate on the brain tumors or even do more localized radiation. We were told that last wouldn't be an option, but new people have new ideas and we are sure open to anything that might help.
Still, when I was reading through sll the documents yesterday, I noticed that even Dr. Nickles had written palliative in the expected outcome box and I have to say that gave me pause. We have been told repeatedly that the objective is palliative--in other words, it's treatment that should help the symptoms and may prolong his life, but won't cure him. But I keep putting that out of my head. Seeing it in print really bothered me far more than I thought it would.
NOw, more than ever, I want to be home with him. However, I just got notice that I am about out of unemployment. I think I have at least one more extension coming, but this is not the time for me to have to be out working. I am going to work hard to try to get my book contract for the Korean experience essays that I have been encourgaged to try to publish. Oregon State University Press seems interested, but I have my doubts that I will earn enough to live off a book published there. I may send it around several places. I am also finally writing the book I have promised myself I would write about Wayne since he had his epilepsy surgery in 1990. Still, I don't know if I will be able to get a contract for that one any time soon. This is not the time for me to be away from him. Is is wrong that I want to squeeze out every second that we have together? We don't have to be talking or interacting. I just want to be near him. I wouldn't mind working from home if I coulod find something legitimate. And maybe it will be those books. So while you're all praying for Wayne, please say a little prayer for me that I can find a way to earn a living but still be able to stay home with my husband.
Enough morbidity for the night. Fern is have surgery tomorrow morning so I will stop here so that I can be up and at the hospital tomorrow. I ordered us some good chick flicks for when she is home recuperating. I will try to do better about getting these posts made. I have my computer and the right adapters to use Fern's dsl but I need to talk to the server to configure it. Once that's done, it will be a lot easier for me to do updates.
Well, it didn't. Wayne's lung tumor is a centimeter bigger. And there is no change in the brain MRI. The brain tumors are smaller, due to radiation, not chemo, but they are not a lot smaller. The original chemo Dr tucker was going to use was carboplatin and taxel. But when Wayne was not going to be able to have radiation to his lungs because of his advanced emphazema, he changed his mind about using taxel.
The new doctor, who we went with based on Fern saying she though he would fight harder, changed Wayne to taxel and has also changed around the way things are given. Wayne has been getting chemo every three weeks, and for two of those weeks, he was knocked on his butt afterward, but Dr. Nickles said that's not necessary and the results won't chage a bit whether Wayne gets smaller doses every week or if he gets big doses every three weeks. So He will be getting chemo every week from here on out. Every other week, they will also add in avastin, which is fairly strong and even in small amounts can only be given once every other week. He said these have a better chance of crossing that barrier as well as helping with the chest tumor.
We were all so worried about Wayne's brain, that we forgot about the lung. But this is lung cancer, not brain cancer, and so we have to treat it that way. We're really hoping that this new protocol will work. The odds aren't great--Ive seen the numbers--but for every person who has not beaten the odds, I can name two or three who have.
It is time to try alternatives and look at Tampa. We have had a number of products suggested for Waybe's use. The only problem is that I don't have the money to buy any of them. So while I am looking up alternative treatments, I am also looking for funding. In watching tv we learned that several types of lung csncer can be caused by working with asbestos. Wayne worked with it in the Navy, so I am absolutely pursuing that. I don't need the millions promised in the ads, but enough to try everything we want to try. I don't care how we do it: I just want my husband well.
He is also going to be having a second opinion about the changing of his epilepsy drugs and whether or not they might be able to operate on the brain tumors or even do more localized radiation. We were told that last wouldn't be an option, but new people have new ideas and we are sure open to anything that might help.
Still, when I was reading through sll the documents yesterday, I noticed that even Dr. Nickles had written palliative in the expected outcome box and I have to say that gave me pause. We have been told repeatedly that the objective is palliative--in other words, it's treatment that should help the symptoms and may prolong his life, but won't cure him. But I keep putting that out of my head. Seeing it in print really bothered me far more than I thought it would.
NOw, more than ever, I want to be home with him. However, I just got notice that I am about out of unemployment. I think I have at least one more extension coming, but this is not the time for me to have to be out working. I am going to work hard to try to get my book contract for the Korean experience essays that I have been encourgaged to try to publish. Oregon State University Press seems interested, but I have my doubts that I will earn enough to live off a book published there. I may send it around several places. I am also finally writing the book I have promised myself I would write about Wayne since he had his epilepsy surgery in 1990. Still, I don't know if I will be able to get a contract for that one any time soon. This is not the time for me to be away from him. Is is wrong that I want to squeeze out every second that we have together? We don't have to be talking or interacting. I just want to be near him. I wouldn't mind working from home if I coulod find something legitimate. And maybe it will be those books. So while you're all praying for Wayne, please say a little prayer for me that I can find a way to earn a living but still be able to stay home with my husband.
Enough morbidity for the night. Fern is have surgery tomorrow morning so I will stop here so that I can be up and at the hospital tomorrow. I ordered us some good chick flicks for when she is home recuperating. I will try to do better about getting these posts made. I have my computer and the right adapters to use Fern's dsl but I need to talk to the server to configure it. Once that's done, it will be a lot easier for me to do updates.
Wednesday, October 13, 2010
Going to the Hospital, again
Wayne spent the night in the hospital last night because he was having trouble with balance. He didn't have any. Even with the walker to support him and me to support the walker, he fell, so I called the oncologist's office and they said to have him evaluated.
The same PA who took care of me took care of Wayne too, and we really liked him. He checked for electolite levels and discovered that his sodium and maagnseum levels were low, so after a night of getting them IV and some steroids as well, he is once again home and happy! They forgot to give him his nicotine patch last night, and he was really, really ready to leave.
So that begs the question: will he manage to quit or not. I am betting on not and doing my absolute best not to bug him about it, but it's hard when the doctor tells him that his treatment will work better if he stops smoking. His first stop at home?? The deck of course and a cigerette.
I am very encouraged by the way he came back so fast. He didn't the two previous times. And I have a very tentive reading of a brain CT. There appear to be three tumors. Now having said that, I will also tell you that it's harder to differenciate with tumors with a CT than an MRI. However, he started with four tumors and two lesions, so this might be good news. But it's still to soon to know. He will get another MRI in two weeks and then we will go from there.
Thanks again for all your prayers and love. I have been reading "Chicken Soup for the Survivor's Soul" and it's amazing how many people have come back from something like he has and are alive years later to tell the tale.
The same PA who took care of me took care of Wayne too, and we really liked him. He checked for electolite levels and discovered that his sodium and maagnseum levels were low, so after a night of getting them IV and some steroids as well, he is once again home and happy! They forgot to give him his nicotine patch last night, and he was really, really ready to leave.
So that begs the question: will he manage to quit or not. I am betting on not and doing my absolute best not to bug him about it, but it's hard when the doctor tells him that his treatment will work better if he stops smoking. His first stop at home?? The deck of course and a cigerette.
I am very encouraged by the way he came back so fast. He didn't the two previous times. And I have a very tentive reading of a brain CT. There appear to be three tumors. Now having said that, I will also tell you that it's harder to differenciate with tumors with a CT than an MRI. However, he started with four tumors and two lesions, so this might be good news. But it's still to soon to know. He will get another MRI in two weeks and then we will go from there.
Thanks again for all your prayers and love. I have been reading "Chicken Soup for the Survivor's Soul" and it's amazing how many people have come back from something like he has and are alive years later to tell the tale.
Sunday, October 10, 2010
We're Here
Good afternoon to everyone. I am writingthis on Fern's cmputer instead of mine because I haven't found the cord to plug mine into and she doesn't have wifi. Typing on it is an interesting experience because it doesn't feel anything like mine.
The move went very smoothly I thought. I was able to do more than I had thought I could, so there was no lying around watching others work for me. Just for Wayne. He went with them to the storage unit and he had fun I think. Unfortunetly they were unable to find some of the things we really wanted here, but we will go back in a few weeks and get the rest,
We got here so late last night. Ray had been on the road since five and I imagine Fern and Bob were on the road by six. It was very quick trip. Glenda came with Ray, so you can imagine how tired they all must have been when we finally got here.
Wayne and I started out traveling together but at our first stopping point. which was Moses Lake, WAyne and Glenda traded, and she drove me in our car and Wayne went with Ray in his brand new uber comfortable car. He had a great time talking to Ray and spending time with him, and I enjoyed both the treat of being driven and the company. By the end of the drive, Glenda was finishing my sentences with the exact wording I was formulating in my mind.
This moring everything was unloaded. I told them to wake me up, but there are some readers out there who know that waking me up can be a real challenge. Wayne tried, but not very hard. So I got out of unloading. I will unpack a bit, but I want the move to Miaaoula to be easier.
Today, Donna shows how well she knows her brother. He our on the deck, enjoying the gorgous scenery. Please excuse my typos and spelling errors. My computer screen for them. but tis one isn't. Oh well.
Oh and mone more thing: our cells don't seem to ber working here. I will send Fern's mumber via email.
The move went very smoothly I thought. I was able to do more than I had thought I could, so there was no lying around watching others work for me. Just for Wayne. He went with them to the storage unit and he had fun I think. Unfortunetly they were unable to find some of the things we really wanted here, but we will go back in a few weeks and get the rest,
We got here so late last night. Ray had been on the road since five and I imagine Fern and Bob were on the road by six. It was very quick trip. Glenda came with Ray, so you can imagine how tired they all must have been when we finally got here.
Wayne and I started out traveling together but at our first stopping point. which was Moses Lake, WAyne and Glenda traded, and she drove me in our car and Wayne went with Ray in his brand new uber comfortable car. He had a great time talking to Ray and spending time with him, and I enjoyed both the treat of being driven and the company. By the end of the drive, Glenda was finishing my sentences with the exact wording I was formulating in my mind.
This moring everything was unloaded. I told them to wake me up, but there are some readers out there who know that waking me up can be a real challenge. Wayne tried, but not very hard. So I got out of unloading. I will unpack a bit, but I want the move to Miaaoula to be easier.
Today, Donna shows how well she knows her brother. He our on the deck, enjoying the gorgous scenery. Please excuse my typos and spelling errors. My computer screen for them. but tis one isn't. Oh well.
Oh and mone more thing: our cells don't seem to ber working here. I will send Fern's mumber via email.
Fern's house
We are here at Fern's. We made it. Wayne had a wonderful tim chatting with his nephew Ray, and he got to ride in the comfy new car that
Ray has. He did beutifully! More tomorrow!
Ray has. He did beutifully! More tomorrow!
Saturday, October 9, 2010
Moving Day
Thanks to Donna, Karen, John and Denise, and Carol for your love and support. Today is the day. Fern should be here shortly. I am not packed up because we spent all day the past two days doing errands. Wayne is now napping because my bi-pap machine mask was leaking and the buzzer on it kept going off. (I have complex sleep apnea) He wanted me to get enough rest and didn't take the mask off, just shut off the buzzer, so I am well rested, but he is not. He is trying to sleep while we wait for Fern and Bob and Glenda and Ray. I am glad they're late. It gives me more time to get ready, but now I must go and do that!
But first, Wayne had a day where his balance was as good as it was when we moved down to Leavenworth from Lake Wenatchee. It was just one day, and he had had enough sleep and wasn't tired, but one day like that gives me hope that maybe those tumors in his brain are shrinking. I am anticipating getting more of those days. The doctor said that Wayne should have an MRI in two and a half weeks, and if the tumors are responding then he should continue. If not, then we should look into the tumor vaccine that I wrote about. But I have this feeling that the chemo is working. Keep those prayers and positive energy coming. A friend who sees and auras says that she still sees him as hanging in there and thinks he is nowhere near ready to go anywhere. I choose to believe she is absolutely right! All our prayers are being answered. I just know it.
Gotta go. Fern and Bob just called. They're here!
But first, Wayne had a day where his balance was as good as it was when we moved down to Leavenworth from Lake Wenatchee. It was just one day, and he had had enough sleep and wasn't tired, but one day like that gives me hope that maybe those tumors in his brain are shrinking. I am anticipating getting more of those days. The doctor said that Wayne should have an MRI in two and a half weeks, and if the tumors are responding then he should continue. If not, then we should look into the tumor vaccine that I wrote about. But I have this feeling that the chemo is working. Keep those prayers and positive energy coming. A friend who sees and auras says that she still sees him as hanging in there and thinks he is nowhere near ready to go anywhere. I choose to believe she is absolutely right! All our prayers are being answered. I just know it.
Gotta go. Fern and Bob just called. They're here!
Sunday, October 3, 2010
Eating Jager-schnitzel
Yesterday my cousin, Tom, and his wife, Mary, came over from the Seattle area to spend the weekend with us. They were able to get a room at the same hotel where we are staying. And after a short, light picnic in Riverfront Park, we headed into Leavenworth.
Leavenworth is a tourist town, a Bavarian themed village that survives on tourism. One of the things they do is have festivals. They mirror all the festivals in Germany. This weekend was Oktoberfest, and town was crowded with young people who had obviously been drinking a bit of the imported German beer. Tom wanted a beer and Mary wanted Jager-schnitzel. Well all four of us wanted it.
Wayne worked at Die Musik Box for a long time, and the owners also own one of the best German Restaurants and beer gardens in town. Wayne used to eat lunch there every day because at worst he had to pay the discounted employee price for lunch, and frequently, they bought him lunch. Even though he doesn't work there any more, they still really like him as late as week before last, they bought him lunch!
So we sent Wayne in to see if he would be able to get us in more quickly. Also, another of my cousin's, Tom's sister, Sandy and her husband, Del, were going to meet us in Leavenworth. So we needed a table for six. The hallway going in was full, but Wayne got us that table, with no waiting, and as good a server as I have ever seen.
We all ordered Jager-schnitzel, which is a pork cutlet pan fried with Jager sauce. Jager sauce is made from bacon, beef stock, red wine, mushrooms, and onions. And it is really yummy. It comes with sweet and source spiced red cabbage--so good it's almost like eating dessert--and spatzle, little pasta type dumplings that are simmered in water and then sauteed. It's wonderful! And we don't eat it very often for obvious reasons! Tom and Mary drank beer, I had a coffee drink with chocolate wine, and Wayne stuck with black tea--good for cancer patients.
We had a great time visiting and then later walking around the downtown area of Leavenworth, watching all the inebriated individuals trying to walk around. We had a blast, and other than the fact that he had a walker with him, Wayne looked like himself. It was great to take a night out and not worry about his cancer, but just go and have a good time. And Tom made Wayne some chocolate chip cookies. We need more days like yesterday!
Tonight we are having dinner with some friends we haven't seen in a long time, so that should be fun. Wayne slept most of this afternoon, so he should be good to go for a couple hours tonight. Getting out and doing things is a lot of fun when he is able, but it does wear him out. Still, we are trying to get together with all our friends before we leave so we can say good-bye.
The plan at this time, I believe, is that Fern and someone else will come on Friday night and we will load up and go on Saturday. However, Fern is working on the logistics of this move and we can probably go any time after his chemo. He may have a couple of bad days if the tegretal interacts with the chemo again, but at least I know what we should do, and we'll be at Fern's and she will know what to do.
Anyway, Montana here we come!
Leavenworth is a tourist town, a Bavarian themed village that survives on tourism. One of the things they do is have festivals. They mirror all the festivals in Germany. This weekend was Oktoberfest, and town was crowded with young people who had obviously been drinking a bit of the imported German beer. Tom wanted a beer and Mary wanted Jager-schnitzel. Well all four of us wanted it.
Wayne worked at Die Musik Box for a long time, and the owners also own one of the best German Restaurants and beer gardens in town. Wayne used to eat lunch there every day because at worst he had to pay the discounted employee price for lunch, and frequently, they bought him lunch. Even though he doesn't work there any more, they still really like him as late as week before last, they bought him lunch!
So we sent Wayne in to see if he would be able to get us in more quickly. Also, another of my cousin's, Tom's sister, Sandy and her husband, Del, were going to meet us in Leavenworth. So we needed a table for six. The hallway going in was full, but Wayne got us that table, with no waiting, and as good a server as I have ever seen.
We all ordered Jager-schnitzel, which is a pork cutlet pan fried with Jager sauce. Jager sauce is made from bacon, beef stock, red wine, mushrooms, and onions. And it is really yummy. It comes with sweet and source spiced red cabbage--so good it's almost like eating dessert--and spatzle, little pasta type dumplings that are simmered in water and then sauteed. It's wonderful! And we don't eat it very often for obvious reasons! Tom and Mary drank beer, I had a coffee drink with chocolate wine, and Wayne stuck with black tea--good for cancer patients.
We had a great time visiting and then later walking around the downtown area of Leavenworth, watching all the inebriated individuals trying to walk around. We had a blast, and other than the fact that he had a walker with him, Wayne looked like himself. It was great to take a night out and not worry about his cancer, but just go and have a good time. And Tom made Wayne some chocolate chip cookies. We need more days like yesterday!
Tonight we are having dinner with some friends we haven't seen in a long time, so that should be fun. Wayne slept most of this afternoon, so he should be good to go for a couple hours tonight. Getting out and doing things is a lot of fun when he is able, but it does wear him out. Still, we are trying to get together with all our friends before we leave so we can say good-bye.
The plan at this time, I believe, is that Fern and someone else will come on Friday night and we will load up and go on Saturday. However, Fern is working on the logistics of this move and we can probably go any time after his chemo. He may have a couple of bad days if the tegretal interacts with the chemo again, but at least I know what we should do, and we'll be at Fern's and she will know what to do.
Anyway, Montana here we come!
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