We had an appointment today, at the oncologist's office. All of Marie's blood tests were good. She is tolerating the chemo extremely well. It was decided, to continue the chemo, and take a new MRI in mid February. Then we will know if the chemo is working. Her appetite has decreased and she is losing weight because of it. There have been no episodes of nausea. The medicals(yes that's my new name for people that work in the medical industry)do not want to see her lose weight. They want her to keep her strength up, and stay as healthy as possible. This makes sense to me. This new set of medicals really seem to care about the patient. I'm glad she's going there.
Any time we face an MRI, I become apprehensive. It doesn't bother Marie at all. I find, that I live from MRI to MRI. For me, an MRI, is a traffic sign. It determines what direction things will take. If it shows slow growth, we may have to change the chemo treatment. If it shows fast growth, it could mean surgery, rehab, or deficits. If it shows the tumor is stable, it could mean continuing the current treatment. Whatever it shows, it will map our future.....until the next MRI. I will be nervous for the next three weeks.
Wednesday, January 27, 2010
vascular doctor
The swollen hand was perplexing. Marie was ready to go home from rehabilitation, but now an unknown medical condition was holding that up. She was disappointed, and frustrated. What else could go wrong?
I know you won't believe this, but Marie's rehab doctor came into her room and told us that she would be released the next day. We should be ready the next morning. A nurse would go over her post rehab plan, and Marie would be released. I asked about the swollen hand, and he told me that, the nurse would go over that, at discharge time. An appointment was made for Marie to see a vascular surgeon and the nurse would give us all that information.
We sat there dumbfounded the rest of the day, wondering why the sudden discharge. Wondering what was going on with her swollen hand. And, what vascular surgeon. I wasn't even sure what a vascular surgeon was. We seemed to take all of this in stride. The next day would be December 22. Home for Christmas. nothing else mattered at this time. Happy holidays. After two months in the hospital, we would all be home, together.
I know you won't believe this, but Marie's rehab doctor came into her room and told us that she would be released the next day. We should be ready the next morning. A nurse would go over her post rehab plan, and Marie would be released. I asked about the swollen hand, and he told me that, the nurse would go over that, at discharge time. An appointment was made for Marie to see a vascular surgeon and the nurse would give us all that information.
We sat there dumbfounded the rest of the day, wondering why the sudden discharge. Wondering what was going on with her swollen hand. And, what vascular surgeon. I wasn't even sure what a vascular surgeon was. We seemed to take all of this in stride. The next day would be December 22. Home for Christmas. nothing else mattered at this time. Happy holidays. After two months in the hospital, we would all be home, together.
Tuesday, January 26, 2010
home? not quite yet
Home was the ultimate goal. Marie was so unhappy, and she began to feel that everyone was against her. I think she believed, that we were holding her without her consent. She was working hard, but her mind wasn't right. Her mother thought Marie was depressed. I didn't think so. The neuro phycologist never came to that conclusion. I am totally convinced it was the phenobarbital.
And then, with no advanced notice, her attending rehab doctor said he would release her, as long as we guaranteed we wouldn't leave her home alone. He actually spoke to us like we were children. I thought he was pompous. All Marie heard was she was going home. The doctor said it would take a couple of days to complete all the paperwork for the discharge, and set up a rehab schedule for Marie, as an out patient.
It was such a quick decision that Marie would go home, that it made me wonder, if the insurance was running out for inpatient rehab. I never asked. It didn't seem important at the time. I wanted Marie to come home, too.
The next day, when I came to see Marie, I discovered her hand was swollen. My memory now, is that it was her right hand. And when I say swollen, I mean monstrous. Huge. A catchers mitt. I have never seen anything like it, ever. And it was obvious that the doctors had not either. Was this the last straw or just a speed bump. We had no idea.
And then, with no advanced notice, her attending rehab doctor said he would release her, as long as we guaranteed we wouldn't leave her home alone. He actually spoke to us like we were children. I thought he was pompous. All Marie heard was she was going home. The doctor said it would take a couple of days to complete all the paperwork for the discharge, and set up a rehab schedule for Marie, as an out patient.
It was such a quick decision that Marie would go home, that it made me wonder, if the insurance was running out for inpatient rehab. I never asked. It didn't seem important at the time. I wanted Marie to come home, too.
The next day, when I came to see Marie, I discovered her hand was swollen. My memory now, is that it was her right hand. And when I say swollen, I mean monstrous. Huge. A catchers mitt. I have never seen anything like it, ever. And it was obvious that the doctors had not either. Was this the last straw or just a speed bump. We had no idea.
Sunday, January 24, 2010
sadness in the rehab
Marie was just not happy. She was recovering from her brain tumor nightmare. Instead of being thankful for surviving, she was angry, confused, and aloof. I was back at work at this time, but I came to the hospital every morning before going to work. I came every day at lunch, and I went directly there after work. I would stay until 9:00 or 10:00 at night. I would bring Christmas gifts there on the weekends, and tried to get her to help me wrap them. I was trying to motivate some enthusiastic. A reason to get better. She wasn't buying it. Marie just wanted to go home.
Therapies continued to drag on. Day after day. Marie was miserable. There never seemed to be any concern about Marie's outlook. How she was feeling about herself or what had happened to her. She was getting stronger and more able with daily functions. But her attitude was getting worse. This continued for weeks. The whole thing was difficult on everyone. My concentration at work was interrupted. The kids were doing their best to stay focused in school. My father in law had gone back home, but Marie's mother was still with us. It's tough to be away from home that long, especially with the holidays on top of you. My mother in law was doing all the cooking and cleaning while I went back and forth to the hospital. She was well into her 70's at the time. It was physically exhausting for her.
People did say they were sorry to hear about Marie's condition. And some asked us to let them know what they could do. The truth is. we had so much going on, and we were so tired, that there was no way we could coordinate helpers. There were a few of Marie's closest friends that didn't wait to be asked. They came over and did things. On one else, ever, did come by. But Marie's closest friends were heaven sent.
Therapies continued to drag on. Day after day. Marie was miserable. There never seemed to be any concern about Marie's outlook. How she was feeling about herself or what had happened to her. She was getting stronger and more able with daily functions. But her attitude was getting worse. This continued for weeks. The whole thing was difficult on everyone. My concentration at work was interrupted. The kids were doing their best to stay focused in school. My father in law had gone back home, but Marie's mother was still with us. It's tough to be away from home that long, especially with the holidays on top of you. My mother in law was doing all the cooking and cleaning while I went back and forth to the hospital. She was well into her 70's at the time. It was physically exhausting for her.
People did say they were sorry to hear about Marie's condition. And some asked us to let them know what they could do. The truth is. we had so much going on, and we were so tired, that there was no way we could coordinate helpers. There were a few of Marie's closest friends that didn't wait to be asked. They came over and did things. On one else, ever, did come by. But Marie's closest friends were heaven sent.
Saturday, January 23, 2010
rehab for the body, not the mind
Marie now faced the month of December in rehab. Speech, physical, and occupational. The physical work was hard for her. She needed to get her balance back while strengthening her right side. Because of the surgery, it created some weakness on her right side.
The occupational helped her to use utensils and daily care.
The most difficult for her was the speech therapy. This is where she would exercise the thinking part of her brain. She needed help in reasoning, word finding. and planning. She didn't recognize that she had any problems with any of these things. The therapist would become upset that Marie was not cooperating, and would expect her family to tell her that, she better get with the program. This is the second health care professional that complained Marie was being naughty, and they wanted us to come and fix it. First, it was the nurse complaining that Marie wanted to smoke, and now it was a speech therapist. I wish I would have fired both of them and asked for someone new. If they find their job difficult, they should talk to their boss, not me. The way it came across to me was, the nurse and the speech therapist, that did the complaining, did so because they wanted Marie's behavior to change. they didn't like it and they were not going to put up with it. They didn't explain how they wanted to help Marie. Or seeking our help, so we could all work together, to help a patient in need. these professionals wanted change and they wanted it now. It was going to be there way or the highway. I listened to them and tried to help. I was wrong. It didn't help, it made things worse for Marie. It's not about making it better for the professional, it's about making it right for the patient. If it was now, I would refuse to let them work with my wife, and I would be the one complaining.
Marie also began to see a neuro physcologist at the rehab center. They would talk alone together, a few times a week. The doctor would talk frankly with Marie and tell her, the therapy could help her live with her deficits. I respected this doctor because she talked openly about Marie's status and future. It was a refreshing change to have a doctor tell it like it is. For Marie this was not good. There was nothing wrong with her. We were all crazy. Her surgeon said she would have an operation and then a short recovery. She believed that, and no one else was going to change her mind.
She did well in the physical and occupational stuff but she never did get it with the speech therapy. I didn't agree with the position that the speech therapist took. Being hard nosed and demanding cooperation. That seemed to Marie, to be supported by the neuro physcologist. I wish they would have found a way to connect with Marie on a more personal level and get her to understand, and accept her deficits. Of course she was still on the phenobarbital, and I believe that played a part in the way she was reacting in speech therapy. We'll never know for sure.
The occupational helped her to use utensils and daily care.
The most difficult for her was the speech therapy. This is where she would exercise the thinking part of her brain. She needed help in reasoning, word finding. and planning. She didn't recognize that she had any problems with any of these things. The therapist would become upset that Marie was not cooperating, and would expect her family to tell her that, she better get with the program. This is the second health care professional that complained Marie was being naughty, and they wanted us to come and fix it. First, it was the nurse complaining that Marie wanted to smoke, and now it was a speech therapist. I wish I would have fired both of them and asked for someone new. If they find their job difficult, they should talk to their boss, not me. The way it came across to me was, the nurse and the speech therapist, that did the complaining, did so because they wanted Marie's behavior to change. they didn't like it and they were not going to put up with it. They didn't explain how they wanted to help Marie. Or seeking our help, so we could all work together, to help a patient in need. these professionals wanted change and they wanted it now. It was going to be there way or the highway. I listened to them and tried to help. I was wrong. It didn't help, it made things worse for Marie. It's not about making it better for the professional, it's about making it right for the patient. If it was now, I would refuse to let them work with my wife, and I would be the one complaining.
Marie also began to see a neuro physcologist at the rehab center. They would talk alone together, a few times a week. The doctor would talk frankly with Marie and tell her, the therapy could help her live with her deficits. I respected this doctor because she talked openly about Marie's status and future. It was a refreshing change to have a doctor tell it like it is. For Marie this was not good. There was nothing wrong with her. We were all crazy. Her surgeon said she would have an operation and then a short recovery. She believed that, and no one else was going to change her mind.
She did well in the physical and occupational stuff but she never did get it with the speech therapy. I didn't agree with the position that the speech therapist took. Being hard nosed and demanding cooperation. That seemed to Marie, to be supported by the neuro physcologist. I wish they would have found a way to connect with Marie on a more personal level and get her to understand, and accept her deficits. Of course she was still on the phenobarbital, and I believe that played a part in the way she was reacting in speech therapy. We'll never know for sure.
Friday, January 22, 2010
back to today again
Last night was confusing for Marie, and it stayed with me all day. About 10:00pm when I was getting ready for bed, Marie came over to me and said " I guess this means we're not celebrating New Years." I told her that it was January 21st, but she was convince that the next day would be New Years day. She thought it was New Years Eve and that I wasn't going to celebrate it with her. I assured her it wasn't New years Eve, but she was convinced. I wished her happy New Years and that seemed to settle it for last night.
Today, I called Marie from work. She was upset that I wasn't home. She said that she had expected me to be home by noon. Marie said I told her weeks ago, that I would get out early, today because I worked on New Years Day. The facts are that I didn't work on New Years. I was home all day with Marie.
I don't know if this is confusion or a delusion. Whatever it is, she's had the same one a few times before. I took her to a movie tonight, to get her mind off New Years. She's fine now. I don't know what causes this. If it's from the surgery or the chemo treatments. Will these episodes keep coming? Will there be a time that she doesn't come back to reality? If anyone has any input on this, I would appreciate it.
Today, I called Marie from work. She was upset that I wasn't home. She said that she had expected me to be home by noon. Marie said I told her weeks ago, that I would get out early, today because I worked on New Years Day. The facts are that I didn't work on New Years. I was home all day with Marie.
I don't know if this is confusion or a delusion. Whatever it is, she's had the same one a few times before. I took her to a movie tonight, to get her mind off New Years. She's fine now. I don't know what causes this. If it's from the surgery or the chemo treatments. Will these episodes keep coming? Will there be a time that she doesn't come back to reality? If anyone has any input on this, I would appreciate it.
Wednesday, January 20, 2010
who's in charge
The surgeon thought Marie would be in the Hospital 4 or 5 days after surgery. We waited a week for the equipment to arrive so he could perform surgery. So, the total time should be less than two weeks. It had now been a month, with no end in sight.
When I look back, I can see that I asked the wrong question. How long will Marie be in the hospital. The answer was 4 or 5 days after surgery. It wasn't the doctors fault the equipment took time to arrive. He told me how long she would be there after surgery. He could not have predicted her problems after surgery. He was quoting his estimate based on the best scenario.
My problem is, he never told me those type of problems could occur. I believe he thinks his estimate is pretty accurate. He said 4 or 5 days after surgery. Again, when he adds the week, waiting for equipment, that makes the total about two weeks. Its been four weeks. That means his estimate was only two weeks off. That's not bad, right?
What about the rehab. She's still in the same hospital. Well that's where things change. The surgeon is done with her. As far as he's concerned she's out of the hospital. Released. Done. The rehab is a brand new hospital stay. That it's in the same building, is coincidental. These, are a new set of doctors. If you have questions, go ask them. Thanks you and please pay your bill on time. I will see you for a check up in three months. Good luck and goodbye.
Each doctor seems to be in charge of their part of the care. No one ever seems to be in charge. After they see the patient in the hospital, they write notes in the patients log book, which I believe now gets entered into the hospital computer. As each doctor visits, they read what the other doctors said, and then they leave their own notes. When you get to the hospital, you don't get to read the notes. Patient privacy and all. If you want to ask the doctor what's going on, you have to wait until they show up.
If you don't stay in the hospital room 24 hours a day, you may never no what doctors visited, what tests were done, or what is scheduled to be done. I'm not saying the medical community is withholding information. I believe the system is flawed. They appear to have a successful system of communicating with each other by using the log book. There isn't any caregiver log book or communication system, and that's what I would like to see change. The health care professionals don't appear to be shy. They have no problem waking you up at 2:00 am because your wife is was demanding to have a cigarette. But if you want to know why she is unconscious for days, good luck getting that answer.
When I look back, I can see that I asked the wrong question. How long will Marie be in the hospital. The answer was 4 or 5 days after surgery. It wasn't the doctors fault the equipment took time to arrive. He told me how long she would be there after surgery. He could not have predicted her problems after surgery. He was quoting his estimate based on the best scenario.
My problem is, he never told me those type of problems could occur. I believe he thinks his estimate is pretty accurate. He said 4 or 5 days after surgery. Again, when he adds the week, waiting for equipment, that makes the total about two weeks. Its been four weeks. That means his estimate was only two weeks off. That's not bad, right?
What about the rehab. She's still in the same hospital. Well that's where things change. The surgeon is done with her. As far as he's concerned she's out of the hospital. Released. Done. The rehab is a brand new hospital stay. That it's in the same building, is coincidental. These, are a new set of doctors. If you have questions, go ask them. Thanks you and please pay your bill on time. I will see you for a check up in three months. Good luck and goodbye.
Each doctor seems to be in charge of their part of the care. No one ever seems to be in charge. After they see the patient in the hospital, they write notes in the patients log book, which I believe now gets entered into the hospital computer. As each doctor visits, they read what the other doctors said, and then they leave their own notes. When you get to the hospital, you don't get to read the notes. Patient privacy and all. If you want to ask the doctor what's going on, you have to wait until they show up.
If you don't stay in the hospital room 24 hours a day, you may never no what doctors visited, what tests were done, or what is scheduled to be done. I'm not saying the medical community is withholding information. I believe the system is flawed. They appear to have a successful system of communicating with each other by using the log book. There isn't any caregiver log book or communication system, and that's what I would like to see change. The health care professionals don't appear to be shy. They have no problem waking you up at 2:00 am because your wife is was demanding to have a cigarette. But if you want to know why she is unconscious for days, good luck getting that answer.
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