The first thing to tell you is that Wayne and I are officially divorced. He went to court today to finalize it. I already had a physical therapy appointment scheduled when we got the date, but it was better that he went because I would have cried for sure. I half expected Wayne to change his mind because last week when we talked about it, he was having second thoughts. But we need him to have good medical. Right now we have to pay $1000.00 plus every month for his medicaid. (The hospital is writing it off but we have to talk about it and I think it's a real pain for them and us.) Now he will not only have his medicaid, but he will also have his Social Security or SSI, plus he will have food stamps, so our meager income is going to get better. But the price was really high. Neither of us wanted to be divorced. We've been married over 23 years and we really wanted to at least get to 25. Both of our hearts are breaking.
Also Wayne wasn't able to transfer to Dr.Thomas after all, partially because Dr. Nicholes didn't want to let him go. So Wayne is continuing to have chemo every week. He made the decision to do this and I am supporting him. Dr. Nicholes told us that he can keep Wayne alive for a long time with chemo. I don't know what a long time means. But Amanda is coming tomorrow, and I am hoping she will ask all the questions that I either forgot or didn't get adequate answers for.
One thing we found out was that Wayne has permanent brain damage from the radiation, and that is is responisible for a number of Wayne's symptoms, such as not being able to walk well and his speech, which has gotten worse. So it's hard to know what is caused by the radiation and what is caused by chemo. I do know the chemo is making it very hard for Wayne's gums to heal enough to get his dentures. We are hoping by the beginning of March he will be healed enough to get his impressions. Anyway, we are seeing the neurologist again on Thursday so I will try to explain his brain damage better next post.
This is a short post, but I will try to get another one out soon after seeing the neurologist so I can explain that.
Tuesday, February 22, 2011
Tuesday, February 8, 2011
Back in the Hospital, again
The fact that Wayne is back in the hospital is probably known to everyone by now. However, I don't know if you know why. Friday night he went to bed and lay there moaning so I asked what was wrong. He told me his heart hurt. So we went to the ER. It was packed but he got right in, no waiting. They did an EKG and ran cardiac enzymes and there was nothing wrong with his heart. Thank GOD. But then they did a chest CT to check for a pulmonary embolism, and he didn't have one of those either, also thank God. However.
Apparently there is another tumor. It's in his right abdominal area, up high and is larger than the one in his lung was when it was first found. The doctor also said it was also suggestive of cancer in his spine. So that was obviously upsetting. Then Wayne started falling apart cognatively. He became unable to answer questions or even talk. Then he started getting agitated, and the doctor called it sun downing, which is a type of dementia that happens to late stage cancer patients (and alzheimer's patients) in the evening. That was even more upsetting. So they admitted him. We were in the ER from about 9 pm until 3:45 am and finally they sent me home and told me I would need to get some sleep and that it would still be at least another hour and they had to have a sitter with him who would have to be called in from home.
Saturday morning the oncologist on call came in to see us just as I got to the hospital. He told us emphatically that this is a terminal cancer and that we are looking at months, not years. He has a great bedside manner though and even though he delivered the worst of news, Glenda, Carol and I all liked him. Over the next few days, Glenda and I liked him even more and when Wayne started coming around, he did too. So we have fired Dr. Nicholes and will be transfering to this new doctor, Dr. Thomas. Since making that decision, we have talked to a number of medical personel who don't like him either, three of whom had relatives who had him as a doctor and who really didn't like him. The general consensis is that he is rude and has a horrible bedside manner, but for me, I feel betrayed,
He led us to believe that Wayne could live with cancer for a very long time. And when I'd ask questions, he wouldn't answer or just blow me off. And
I want to know why he didn't know about the other tumor. And you'll never believe what he said when I asked him about it. He said it wasn't significant. I'm upset because he refuses to follow up with Wayne's leg pain or with whether or not there is cancer in the spine. And then there were the two units of packed red blood cells that Wayne had to have yesterday, when he kept telling us that Wayne's blood counts were just great, even after the VA had sent us the CBC report they did three weeks ago that noted that Wayne is anemic and saying they were sure the oncologist would take care of that. But then it's pretty hard to go over much when you see the doctor for two minutes at best, and in an open area where other patients are. (Hippa violations????) And today he said that the chemo wouldn't cause the anemia, so Wayne must be bleeding internally and ordered more tests. But then even when I have told him that avastin really wipes Wayne out, he told me it wouldn't do that. He doesn't listen to me and is quick to tell me I am wrong and won't answer questions. So we are switching and we are very happy about it.
Glenda and i have also wondering if Wayne shouldn't, at the very least, have a break from chemo. Wayne is so worn down and tired that he won't go anywhere or do anything. He spends his days laying down, listening to music or sleeping, and watching a little TV. He is no longer interested in anything he used to be interested in. He hasn't even tried to quilt, and he has stopped going places with me. He used to go to the store with me or on other errands but he doesn't feel good enough to do that any more. He has no quality of life. He doesn't eat much anymore either. Dr. Thomas said that when the tumor sizes are down, that is a good time to take a break. He also said he felt that avastin isn't indicated. I feel like Dr. Nicholes doesn't see people; he just sees tumors that need to be shrunk and getting them smaller at any cost is what he believes in. One nurse said that her grandmother died of cardiac arrest due to too much chemo. She said she wishes she had known about Dr. Nicholes before, but that was before she became an oncology nurse.
Wayne isn't just a tumor and I won't have him treated that way any longer. It sounds as though we may lose him, but miracles happen and maybe we can have one. I hope everyone will keep up their prayers. And while we prepare for the worst, we should all hope for the best. Wayne's attitude is very good still and he is still all about fighting. He wants to live and I want him to live too as do all of you. And there are always clinical trials as long as he's not just a guinea pig.
Apparently there is another tumor. It's in his right abdominal area, up high and is larger than the one in his lung was when it was first found. The doctor also said it was also suggestive of cancer in his spine. So that was obviously upsetting. Then Wayne started falling apart cognatively. He became unable to answer questions or even talk. Then he started getting agitated, and the doctor called it sun downing, which is a type of dementia that happens to late stage cancer patients (and alzheimer's patients) in the evening. That was even more upsetting. So they admitted him. We were in the ER from about 9 pm until 3:45 am and finally they sent me home and told me I would need to get some sleep and that it would still be at least another hour and they had to have a sitter with him who would have to be called in from home.
Saturday morning the oncologist on call came in to see us just as I got to the hospital. He told us emphatically that this is a terminal cancer and that we are looking at months, not years. He has a great bedside manner though and even though he delivered the worst of news, Glenda, Carol and I all liked him. Over the next few days, Glenda and I liked him even more and when Wayne started coming around, he did too. So we have fired Dr. Nicholes and will be transfering to this new doctor, Dr. Thomas. Since making that decision, we have talked to a number of medical personel who don't like him either, three of whom had relatives who had him as a doctor and who really didn't like him. The general consensis is that he is rude and has a horrible bedside manner, but for me, I feel betrayed,
He led us to believe that Wayne could live with cancer for a very long time. And when I'd ask questions, he wouldn't answer or just blow me off. And
I want to know why he didn't know about the other tumor. And you'll never believe what he said when I asked him about it. He said it wasn't significant. I'm upset because he refuses to follow up with Wayne's leg pain or with whether or not there is cancer in the spine. And then there were the two units of packed red blood cells that Wayne had to have yesterday, when he kept telling us that Wayne's blood counts were just great, even after the VA had sent us the CBC report they did three weeks ago that noted that Wayne is anemic and saying they were sure the oncologist would take care of that. But then it's pretty hard to go over much when you see the doctor for two minutes at best, and in an open area where other patients are. (Hippa violations????) And today he said that the chemo wouldn't cause the anemia, so Wayne must be bleeding internally and ordered more tests. But then even when I have told him that avastin really wipes Wayne out, he told me it wouldn't do that. He doesn't listen to me and is quick to tell me I am wrong and won't answer questions. So we are switching and we are very happy about it.
Glenda and i have also wondering if Wayne shouldn't, at the very least, have a break from chemo. Wayne is so worn down and tired that he won't go anywhere or do anything. He spends his days laying down, listening to music or sleeping, and watching a little TV. He is no longer interested in anything he used to be interested in. He hasn't even tried to quilt, and he has stopped going places with me. He used to go to the store with me or on other errands but he doesn't feel good enough to do that any more. He has no quality of life. He doesn't eat much anymore either. Dr. Thomas said that when the tumor sizes are down, that is a good time to take a break. He also said he felt that avastin isn't indicated. I feel like Dr. Nicholes doesn't see people; he just sees tumors that need to be shrunk and getting them smaller at any cost is what he believes in. One nurse said that her grandmother died of cardiac arrest due to too much chemo. She said she wishes she had known about Dr. Nicholes before, but that was before she became an oncology nurse.
Wayne isn't just a tumor and I won't have him treated that way any longer. It sounds as though we may lose him, but miracles happen and maybe we can have one. I hope everyone will keep up their prayers. And while we prepare for the worst, we should all hope for the best. Wayne's attitude is very good still and he is still all about fighting. He wants to live and I want him to live too as do all of you. And there are always clinical trials as long as he's not just a guinea pig.
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