As an out patient we would take Marie back and forth to the rehab center. Being on this new anti seizure medication certainly helped. But she never changed the way she felt about speech therapy, or the neuro physcologist. We did see the vascular surgeon, and he did additional testing. He never did find out what was causing the swelling. The swollen hand went back to normal size after another two weeks. No explanation, just another anomaly.
Brain tumors are rare. The possible affects on the brain must be vast. They are sometimes unexplained. Then, they seemingly fix themselves like the bowel movement, the 4 day sleep, and the swollen hand. Sometimes they don't fix themselves like the memory loss or the personality change. Sometimes you just forget that you are a smoker, and never have another cigarette again.
After two months of rehabilitation, Marie was finally all done. Now all she had to do was have periodic MRI's. The medicals wanted to make sure there was no recurrence.
Sunday, January 31, 2010
Saturday, January 30, 2010
neurologist who?????
How could I forget this part. It was another strange side note in the rehab stay. On the day of the discharge we had another visitor, besides the discharge nurse. A man came into Marie's room, and introduced himself, as her neurologist. I told him he must be mistaken because we had a neurologist. No, he said, he was her neurologist. He was assigned to Marie by the rehab center, and he had been seeing her for a little while now. Marie didn't seem to know him, but you couldn't trust her memory. The reason for his visit was to give us a prescription for her anti seizure medication and to give us her follow up appointment time.
To me, he was an odd fellow. The way he talked and his mannerism. As I found out since then, it's not unusual for a hospital to assign their own doctors, instead of contacting yours. I believe it was business decision. Keep the money in the "family", so to speak. I questioned him on the prescription. It didn't say phenobarbital. It was for zonisamide. He said this new medication wouldn't affect her the saame way as the phenobarbital. I asked the discharge nurse about this man, and she confirmed, that he was Marie's neurologist.
This was just another example of the medicals making a decision without our knowledge or consent. In this case something good happened. Marie was off the phenobarbital.
We never did see that neurologist again. I checked with our family doctor who was appalled by the change. He wanted us to keep seeing the neurologist that he referred us to. And we did. But Marie stayed on this new medication. Over time it proved to be a good choice. Although, the cognizant issues remained, she came out of the stupor.
To me, he was an odd fellow. The way he talked and his mannerism. As I found out since then, it's not unusual for a hospital to assign their own doctors, instead of contacting yours. I believe it was business decision. Keep the money in the "family", so to speak. I questioned him on the prescription. It didn't say phenobarbital. It was for zonisamide. He said this new medication wouldn't affect her the saame way as the phenobarbital. I asked the discharge nurse about this man, and she confirmed, that he was Marie's neurologist.
This was just another example of the medicals making a decision without our knowledge or consent. In this case something good happened. Marie was off the phenobarbital.
We never did see that neurologist again. I checked with our family doctor who was appalled by the change. He wanted us to keep seeing the neurologist that he referred us to. And we did. But Marie stayed on this new medication. Over time it proved to be a good choice. Although, the cognizant issues remained, she came out of the stupor.
discharged
On December 22, 2000, Marie was discharged form the hospital. She had been in for two months and was finally going home, Swollen hand and all. I'm not sure what I expected, but what happened was nothing. Marie came home and sat on the couch. The impending holidays didn't seem to matter to her. Today could have been December 22 or August 17. It didn't matter. They were all the same to her. Her life had changed. Her cognizant reasoning ability was different now. She was no longer going to fit into the life we had. We needed to change. To make a new life together.
I recognized the change in Marie, quicker than others, because I was with her everyday. Going on every appointment, and interacting with her on daily life issues. It has taken much longer for our children to recognize the change. The wanted mom to "get better". I felt the doctors saw this as Marie was "better". The tumor was removed and she was home again. Any residual change, due to the surgery, was just part of life. Although today's quality of life, is not as good as yesterdays quality of life, it's better than it might be tomorrow.
Some people have still not accepted the new Marie. This Marie is a great person. Every bit as good as the last Marie, just different in some ways. Not better, not worse, just different. The neuro physcologist described it as both good and bad for Marie. The good was that Marie knew there were now differences. The bad for her is that she didn't know what the differences were.
Even today her mom will ask me if Marie is doing this or that. When she asks me this, she is trying find out if Marie is doing the things that she used to love. Mom can't seem to accept that those times are over and gone. Marie will never be doing those thing again. Her personality has changed. This Marie has other priorities. I feel bad for my Mother in law some times. If you hold on to the past, you will not enjoy the today's.
I recognized the change in Marie, quicker than others, because I was with her everyday. Going on every appointment, and interacting with her on daily life issues. It has taken much longer for our children to recognize the change. The wanted mom to "get better". I felt the doctors saw this as Marie was "better". The tumor was removed and she was home again. Any residual change, due to the surgery, was just part of life. Although today's quality of life, is not as good as yesterdays quality of life, it's better than it might be tomorrow.
Some people have still not accepted the new Marie. This Marie is a great person. Every bit as good as the last Marie, just different in some ways. Not better, not worse, just different. The neuro physcologist described it as both good and bad for Marie. The good was that Marie knew there were now differences. The bad for her is that she didn't know what the differences were.
Even today her mom will ask me if Marie is doing this or that. When she asks me this, she is trying find out if Marie is doing the things that she used to love. Mom can't seem to accept that those times are over and gone. Marie will never be doing those thing again. Her personality has changed. This Marie has other priorities. I feel bad for my Mother in law some times. If you hold on to the past, you will not enjoy the today's.
Wednesday, January 27, 2010
back to today
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.
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.
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.
rehab
Marie stayed in a regular hospital room for a week. She spent Thanksgiving 2000 in her room. They served her ground turkey. It wasn't in a patty shape like a hamburger. It was small chunks of groung up meat. It did not look appetizing and she said it didn't taste very good. Since she hadn't eaten solid food for so long and since she had trouble with mother nature, they wanted to play it safe with her diet. Her mother did sneak her in a dish of spaghetti and homemade sauce. I'm sure the nurse saw it, but she didn't say anything. Happy Thanksgiving, Marie.
The doctors wanted Marie to go through rehabilitation. Her short term memory wasn't good, she still struggled with using utensils, and her balance was bad. She was scheduled for speech, occupational, and physical therapies. This hospital has a Rehab unit attached to it, and it is used by both inpatients and outpatients. After a week in a regular ward, she was cleared to be moved to the rehabilitation floor. This would allow her to have intensive therapies each day.
Physical therapy would help her strength and balance. Occupational therapy would help her day to day functioning. Using utensils, getting dressed, bathe, and other daily life issues. Speech therapy would help her the short term memory and word searching ability. She now had problems finding appropriate words. Her basic math skills were gone. Money was a foreign concept. Her writing became almost illegible. If you had her write her name, it was so small you couldn't read it. I don't mean half the normal size, or even a quarter of the size. I mean way, way smaller. Even she couldn't read her own writing. She needed rehab and she was going to get it, but she was not happy about it. According to her, there was nothing wrong. Everything was normal from the small writing to falling over when she walked. She developed into an angry person that did not want any help. She wanted to go home.
Looking back on this time period, I have to comment that when Marie first awoke from the surgery, she didn't seem to have any of these issues. It all changed after the spinal fluid drainage level was changed. They began to show themselves after the four day sleep. Was it a coincidence or would these issues have shown up anyway? I will never know. When it was all happening, it was one thing after another. It was only after a few years that I looked back, and wondered if all these things were connected. As far as the anger she was having, I believe it was the anti-seizure medication. It seemed to change her personality. I believe the phenobarbital dimmed the light in her spirit. And, that wouldn't change for weeks.
The doctors wanted Marie to go through rehabilitation. Her short term memory wasn't good, she still struggled with using utensils, and her balance was bad. She was scheduled for speech, occupational, and physical therapies. This hospital has a Rehab unit attached to it, and it is used by both inpatients and outpatients. After a week in a regular ward, she was cleared to be moved to the rehabilitation floor. This would allow her to have intensive therapies each day.
Physical therapy would help her strength and balance. Occupational therapy would help her day to day functioning. Using utensils, getting dressed, bathe, and other daily life issues. Speech therapy would help her the short term memory and word searching ability. She now had problems finding appropriate words. Her basic math skills were gone. Money was a foreign concept. Her writing became almost illegible. If you had her write her name, it was so small you couldn't read it. I don't mean half the normal size, or even a quarter of the size. I mean way, way smaller. Even she couldn't read her own writing. She needed rehab and she was going to get it, but she was not happy about it. According to her, there was nothing wrong. Everything was normal from the small writing to falling over when she walked. She developed into an angry person that did not want any help. She wanted to go home.
Looking back on this time period, I have to comment that when Marie first awoke from the surgery, she didn't seem to have any of these issues. It all changed after the spinal fluid drainage level was changed. They began to show themselves after the four day sleep. Was it a coincidence or would these issues have shown up anyway? I will never know. When it was all happening, it was one thing after another. It was only after a few years that I looked back, and wondered if all these things were connected. As far as the anger she was having, I believe it was the anti-seizure medication. It seemed to change her personality. I believe the phenobarbital dimmed the light in her spirit. And, that wouldn't change for weeks.
Tuesday, January 19, 2010
Anti seizure meds
After Marie's focal seizure in October 2000, the neurologist started her on anti-seizure medication. They first tried Tegretol. After a short usage the enzyme levels in her liver began to elevate. She was switched to Dilantin. Again, she had the same reaction. The numerologist wanted her to stay on an anti-seizure medication so seizures wouldn't become a problem. She had so many other things going on, seizures would have been very serious.
They put Marie on Phenobarbital. This medication seemed to work with no lever side effects. Instead, it appeared to make her dazed. It masked her progress. Was she getting better with her memory issues or was the medication keeping her confused and not very responsive. She became somewhat angry, but she didn't know why. In addition to the anti-seizure medication, she was also on steroids to control brain swelling. Don't forget, she had all those laxatives going into her at the same time.
All the trauma on the brain from surgery, the seizures, the medications, the changing spinal fluid drainage level, no wonder she took a four day sleep. No wonder she couldn't move her bowels. Her body seemed to be shutting down. Maybe it couldn't take anymore. Maybe it was protecting itself. After three weeks in the intensive care unit she was ready to move to a regular room. But, she was now facing intensive rehab. Walking, talking, thinking, interacting with others. That was all still ahead of her.
They put Marie on Phenobarbital. This medication seemed to work with no lever side effects. Instead, it appeared to make her dazed. It masked her progress. Was she getting better with her memory issues or was the medication keeping her confused and not very responsive. She became somewhat angry, but she didn't know why. In addition to the anti-seizure medication, she was also on steroids to control brain swelling. Don't forget, she had all those laxatives going into her at the same time.
All the trauma on the brain from surgery, the seizures, the medications, the changing spinal fluid drainage level, no wonder she took a four day sleep. No wonder she couldn't move her bowels. Her body seemed to be shutting down. Maybe it couldn't take anymore. Maybe it was protecting itself. After three weeks in the intensive care unit she was ready to move to a regular room. But, she was now facing intensive rehab. Walking, talking, thinking, interacting with others. That was all still ahead of her.
Monday, January 18, 2010
back to today
Marie is currently taking chemo treatments. Temozolomide capsules. Seven days on....seven days off. Over and over again. This is not generally used for the type of tumor she has. It's normally used for a very aggressive, fast growing, malignant tumor. Remember, Marie has a grade II benign tumor. Are we running out of options? I don't know. There always seems to be new treatments. Advancements, based on research and trials. Things for Marie have been getting better lately. Improved balance, less confusion, a better sense of what is going on. So, maybe it's working. My understanding is, in mid February, Marie will have another MRI, To see if this treatment is succeeding. I am very optimistic.
Sunday, January 17, 2010
the new problem
Marie had been in intensive care for a week and was nowhere ready to leave. She needed a lot of help, learning to regain her balance, using utensils to eat, and how to find the correct words to express herself. Memory and word searching became major challenges. the surgeon told me these problems are not unusual. If they aren't unusual, why didn't he tell us before about these possibilities. Remember, this was supposed to be surgery, in the hospital for 4 or 5 days, and then home to finish recovering. It's already been a week and and she was still in the intensive care unit, with all kinds of problems.
Marie already had a regimen of doctors. Our family doctor. The surgeon. A neurologist. And, A gastroenterologist. The health insurance we had at the time, dictated that our family doctor had to do a referral for every other doctor that she needed to see. She needed a referral for tests, appointments, medications. almost everything. I spent many hours communicating between different doctors and our family doctor to coordinate the referrals so insurance coverage was in tack. What if there was no care giver? Who would do it for the patient? My guess is that no one may have done it, and the patient or their family would end up with large, uncovered medical bills. That insurance company did cover everything they were supposed to, but it took intense scrutiny of all the bills. It took dozens and dozens of phone calls between the doctors offices, the hospital billing departments, the insurance companies. I will get into all that later.
By far, the biggest problem that all these doctors were concerned about was when she would move her bowels. That's right. No talk about memory, balance, the four day sleep. It was all about her bowels. She couldn't be moved from the intensive care until "IT" happened. The hospital ordered in a special bed that gently moved the patient from side to side. This would help limit the possibility of bed sores. they must have expected this to last a while. The nurse told me the bed was a rental, that had to be trucked in from another city. The cost, she said was $10,000 a day. I know that sounds crazy but when they say $10,000 a day they mean that's what will be billed. The real cost could be much, much lower. It depends whose paying the bill. You or the insurance company.
The gastro doctor would come each day, and load Marie up with laxatives. Then, he would come back the next day, expecting positive results. Nothing would happen, and the cycle would continue. More laxatives, more waiting, nothing happening. One day, two days, five days, 8 days. I lost count. The doctor would comment that he had never seen anything like this before. No one could hold this much laxative in their system. He asked me if she had this problem before. Oh sure, she always loads herself up with laxatives and then holds them in. He never did succeed. His intention, from what I could tell, was to keep giving her more until she exploded.
Let's get back to the nurse that woke Marie from her four day sleep. She was assigned to Marie whenever she was on duty. After what seemed like an eternity of laxatives and failures, this angel of a nurse took matters into her own hands. For the second time, I entered Marie's room in the early morning to find her sitting in a chair, with a slight smile on her face. the nurse was there and told me that things finally proceeded as planned. She help mother nature along by putting on a rubber glove, extending a finger that was lubricated with Vaseline. Get the picture. The nurse figured out that Marie was so constipated that a blockage existed. She cleared the blockage and let nature that it's course. To the nurse, it was another day on duty. To me, it was the act of someone who really cares about others. Hooray for nurses who care.
Marie already had a regimen of doctors. Our family doctor. The surgeon. A neurologist. And, A gastroenterologist. The health insurance we had at the time, dictated that our family doctor had to do a referral for every other doctor that she needed to see. She needed a referral for tests, appointments, medications. almost everything. I spent many hours communicating between different doctors and our family doctor to coordinate the referrals so insurance coverage was in tack. What if there was no care giver? Who would do it for the patient? My guess is that no one may have done it, and the patient or their family would end up with large, uncovered medical bills. That insurance company did cover everything they were supposed to, but it took intense scrutiny of all the bills. It took dozens and dozens of phone calls between the doctors offices, the hospital billing departments, the insurance companies. I will get into all that later.
By far, the biggest problem that all these doctors were concerned about was when she would move her bowels. That's right. No talk about memory, balance, the four day sleep. It was all about her bowels. She couldn't be moved from the intensive care until "IT" happened. The hospital ordered in a special bed that gently moved the patient from side to side. This would help limit the possibility of bed sores. they must have expected this to last a while. The nurse told me the bed was a rental, that had to be trucked in from another city. The cost, she said was $10,000 a day. I know that sounds crazy but when they say $10,000 a day they mean that's what will be billed. The real cost could be much, much lower. It depends whose paying the bill. You or the insurance company.
The gastro doctor would come each day, and load Marie up with laxatives. Then, he would come back the next day, expecting positive results. Nothing would happen, and the cycle would continue. More laxatives, more waiting, nothing happening. One day, two days, five days, 8 days. I lost count. The doctor would comment that he had never seen anything like this before. No one could hold this much laxative in their system. He asked me if she had this problem before. Oh sure, she always loads herself up with laxatives and then holds them in. He never did succeed. His intention, from what I could tell, was to keep giving her more until she exploded.
Let's get back to the nurse that woke Marie from her four day sleep. She was assigned to Marie whenever she was on duty. After what seemed like an eternity of laxatives and failures, this angel of a nurse took matters into her own hands. For the second time, I entered Marie's room in the early morning to find her sitting in a chair, with a slight smile on her face. the nurse was there and told me that things finally proceeded as planned. She help mother nature along by putting on a rubber glove, extending a finger that was lubricated with Vaseline. Get the picture. The nurse figured out that Marie was so constipated that a blockage existed. She cleared the blockage and let nature that it's course. To the nurse, it was another day on duty. To me, it was the act of someone who really cares about others. Hooray for nurses who care.
Saturday, January 16, 2010
coma?
Coma is a word that was never mentioned. Marie continued to lay unconscious, in the intensive care unit. Each day the nurse would say, Marie is still asleep. Who sleeps for days, never getting up to go to the bathroom. Never being thirsty or hungry. Why did no one ever say coma. That's the word that came to my mind.
I didn't know if the medical staff was hiding something, or if they just didn't know what was going on. It's a scary thought, that with all Marie had been through, no one knew what was going on. Surgery, seizures. Coma?
Another day come with more examining. They hooked Marie up to all kind of electrodes. There was a machine that was measuring brain waves. The test came back normal. No explanation. She was like sleeping beauty. The drainage bag was still connected and in a level position with her head. She was in this state four days. I continued to sleep in the waiting room, and go in and out of the intensive care unit to check on her. The morning of the fifth day, when I went into her room, Marie was awake and sitting in a chair. The nurse was busy changing the bed linens. She turned to me when I came in and said, surprise. I couldn't believe it. She explained to me that since nothing else seemed to be working, she decided to try something on her own. She had taken a cool wash cloth and kept stroking Marie's arms, legs and face. Eventually she came to.
I spoke to Marie and she responded with a small smile and a nod. There never was an explanation of what had caused the sleeping spell, or whatever it was. But it was over.
I didn't know if the medical staff was hiding something, or if they just didn't know what was going on. It's a scary thought, that with all Marie had been through, no one knew what was going on. Surgery, seizures. Coma?
Another day come with more examining. They hooked Marie up to all kind of electrodes. There was a machine that was measuring brain waves. The test came back normal. No explanation. She was like sleeping beauty. The drainage bag was still connected and in a level position with her head. She was in this state four days. I continued to sleep in the waiting room, and go in and out of the intensive care unit to check on her. The morning of the fifth day, when I went into her room, Marie was awake and sitting in a chair. The nurse was busy changing the bed linens. She turned to me when I came in and said, surprise. I couldn't believe it. She explained to me that since nothing else seemed to be working, she decided to try something on her own. She had taken a cool wash cloth and kept stroking Marie's arms, legs and face. Eventually she came to.
I spoke to Marie and she responded with a small smile and a nod. There never was an explanation of what had caused the sleeping spell, or whatever it was. But it was over.
Friday, January 15, 2010
the twitching leg
Late that evening, Marie's surgeon came to her room. He was checking that darn drainage bag. I told him that his partner had been there, and was concerned about the level of the drainage. I also told him about the twitching leg. As if on cue, the leg starting twitching again.
You have to remember, Marie still had not regained consciousness. The hospital had called at 2:00am. She went for an MRI. She had two different surgeons check her out. Her leg went into violent twitching twice. It was now late in the evening, and we still had no information as to what was going on.
The surgeon finally told me that Marie was experiencing focal siezures. He explained that they were seizures that could take place in one specific area. I believe, the change in the fluid drainage level, created these issues. They couldn't wake her up, and now she was having seizures as well. All we could do now, was wait to see, when or if, she would come to.
You have to remember, Marie still had not regained consciousness. The hospital had called at 2:00am. She went for an MRI. She had two different surgeons check her out. Her leg went into violent twitching twice. It was now late in the evening, and we still had no information as to what was going on.
The surgeon finally told me that Marie was experiencing focal siezures. He explained that they were seizures that could take place in one specific area. I believe, the change in the fluid drainage level, created these issues. They couldn't wake her up, and now she was having seizures as well. All we could do now, was wait to see, when or if, she would come to.
Wednesday, January 13, 2010
today's mail
I want to briefly go back to today, 1/13/10. I received a notice, form a local hospital, about an up coming brain tumor education and support group meeting. This hospital has one every month, and I attended one of their meetings a few months ago. I felt their big thing was, the education, not the support. The one I went to was given by a medical professional, and this one will be given by attorney. I appreciate professionals that give their personal time. It wasn't what I was looking for. If it works for you, I'm glad, and wish you the best. When I attended, I felt like the professional was telling me how the system works. What I got from the meeting was, what I could expect form the medical community. I left thinking that social workers were an extension of that medical community. I felt they wanted to tell me what I could expect, and what I was allowed. When I expressed that it wasn't good enough, I felt I was cut off.
What I want for brain tumor patients and caregivers is openness, honesty, respect, and clear options. Two way communication, about your own specific issues. There were a number of other people there, and I was totally surprised that none of them spoke up to express the same things that I did. Anytime they did speak, it was to say that they had the best doctors and the best care. I was taken back and pretty much put in my place. I seemed to be the only one in the room that had any issues. Then it dawned on me. The others that did speak only had one or two procedures done. My wife had been through eight. Three surgeries, four radiations, and ongoing chemotherapy. She was, at that time, in a hospital bed, with a staff infection. I can't wait to tell you about the staff infection, but that will be a while form now. It took a long time before I realized that, in my opinion, I wasn't getting the full story.
I don't remember feeling informed that Marie could have severe memory issues. That her feet could swell so large that she couldn't wear shoes for months. That her skull wouldn't heal and spinal fluid would leak out creating other more dangerous problems. This list could go on and on. It was only when I looked back to the the road map we had traveled, covered with potholes, that I realized, that I believed, there is a problem. These others at the meeting, had not traveled far enough down the road. I hope they never do. If they do, I hope it's a smooth road, with no problems. I can only speak from my own experience. Two states, three hospitals, eight procedures, and countless doctors and nurses. Many have been outstanding professional and some have disappointing. I feel the heath care system can do better. Much better. I have had people say to me, we should be glad we have the health care system that we do have. It's the best around. I don't know if that's true or not, but I believe that is what they want us to think. Be happy for the health care you get, pay your bill on time, and don't complain about anything.
I would really like to see a brain tumor support group, given for patients and caregivers, by patients and caregivers. I would also like to be a part of a support group for care givers only, and I wish Marie could be a part of a support group for patients only. If things are going to change it needs to be a grass root change. I
What I want for brain tumor patients and caregivers is openness, honesty, respect, and clear options. Two way communication, about your own specific issues. There were a number of other people there, and I was totally surprised that none of them spoke up to express the same things that I did. Anytime they did speak, it was to say that they had the best doctors and the best care. I was taken back and pretty much put in my place. I seemed to be the only one in the room that had any issues. Then it dawned on me. The others that did speak only had one or two procedures done. My wife had been through eight. Three surgeries, four radiations, and ongoing chemotherapy. She was, at that time, in a hospital bed, with a staff infection. I can't wait to tell you about the staff infection, but that will be a while form now. It took a long time before I realized that, in my opinion, I wasn't getting the full story.
I don't remember feeling informed that Marie could have severe memory issues. That her feet could swell so large that she couldn't wear shoes for months. That her skull wouldn't heal and spinal fluid would leak out creating other more dangerous problems. This list could go on and on. It was only when I looked back to the the road map we had traveled, covered with potholes, that I realized, that I believed, there is a problem. These others at the meeting, had not traveled far enough down the road. I hope they never do. If they do, I hope it's a smooth road, with no problems. I can only speak from my own experience. Two states, three hospitals, eight procedures, and countless doctors and nurses. Many have been outstanding professional and some have disappointing. I feel the heath care system can do better. Much better. I have had people say to me, we should be glad we have the health care system that we do have. It's the best around. I don't know if that's true or not, but I believe that is what they want us to think. Be happy for the health care you get, pay your bill on time, and don't complain about anything.
I would really like to see a brain tumor support group, given for patients and caregivers, by patients and caregivers. I would also like to be a part of a support group for care givers only, and I wish Marie could be a part of a support group for patients only. If things are going to change it needs to be a grass root change. I
Tuesday, January 12, 2010
I almost forgot the NURSE
I told you that I went home to sleep because Maire seemed to be doing well, and then the nusrses called about 2:00am to tell me they couldn't wake her up. Marie seemed to be doing good according to the NURSE that she had on duty that night. I used capitol letters to identify that NURSE from all the others. I actually noticed a change in Marie before I decided to go home. The surgeon had changed the level of the spinal fluid draining from her brain. He raised the drainage bag which stopped the fluid from draining.
It affected her. It made her drowsy. One minute she was alert and recovering, the next minute she was drowsy and some what unresponsive. I brought it to the attention of the NURSE and asked her to put in a call to the surgeon, to let him know, there appeared to be a change. This is the last time that I will refer to her as the Nurse. I will now say the BEAST. The BEAST told me that they do not call the doctors, except for emergencies. This didn't seem to her to be an emergency. I asked her again, to make the call, and again, she told me no. She would follow current procedures which dictated no reason for her to BOTHER the doctor. That's right, she didn't want to BOTHER him. I should have thown her out right then and made the call myself. I didn't.
I had convinced myself that I was just worrying too much. Everything was going good. Right? I should just go get some sleep and come back in the morning. Instead I got the phone call at 2:00am that they couldn't wake Marie up.
It was sometime between 4:00am and 5:00am that the tech's brought Marie back to the intensive care unit. The BEAST had gone home the evening before and was not one of the nurses that called at 2:00am. We waited, almost the entire day, before we new what was going on. No one at the hospital offered any information to us. They wouldn't tell us anything. We needed to wait for the surgeon. Marie remained unconscious all this time.
We actually were panicked stricken by the time the surgeon showed up, after dinner. That's correct, after dinner. They took her for and MRI st 2:00am, they called me and told me to get right there, and then there was no information for over 17 hours.
The surgeon came into the room and began to examine Maire. He flashed a light in her eyes. He tried talking to her. And then he turned his attention to the drainage bag. Here's the catch on all this. The surgeon that came in was not Marie's surgeon, it was his senior partner. He spoke out loud and asked who changed the drainage bag level. I told him it was his partner. Then we noticed Marie's right leg. The skin actually started to twitch. Her leg started muscles began flexing, quite quickly. It lasted for a few minutes. He got the nurse on duty, and gave her some orders. He changed the level of the fluid bag, back to be level with her head. The nurse injected something into Marie's IV tube. The twitching ended and he took off. He didn't come back. I wasn't sure what I just witnessed and I still had no idea what was going on.
It affected her. It made her drowsy. One minute she was alert and recovering, the next minute she was drowsy and some what unresponsive. I brought it to the attention of the NURSE and asked her to put in a call to the surgeon, to let him know, there appeared to be a change. This is the last time that I will refer to her as the Nurse. I will now say the BEAST. The BEAST told me that they do not call the doctors, except for emergencies. This didn't seem to her to be an emergency. I asked her again, to make the call, and again, she told me no. She would follow current procedures which dictated no reason for her to BOTHER the doctor. That's right, she didn't want to BOTHER him. I should have thown her out right then and made the call myself. I didn't.
I had convinced myself that I was just worrying too much. Everything was going good. Right? I should just go get some sleep and come back in the morning. Instead I got the phone call at 2:00am that they couldn't wake Marie up.
It was sometime between 4:00am and 5:00am that the tech's brought Marie back to the intensive care unit. The BEAST had gone home the evening before and was not one of the nurses that called at 2:00am. We waited, almost the entire day, before we new what was going on. No one at the hospital offered any information to us. They wouldn't tell us anything. We needed to wait for the surgeon. Marie remained unconscious all this time.
We actually were panicked stricken by the time the surgeon showed up, after dinner. That's correct, after dinner. They took her for and MRI st 2:00am, they called me and told me to get right there, and then there was no information for over 17 hours.
The surgeon came into the room and began to examine Maire. He flashed a light in her eyes. He tried talking to her. And then he turned his attention to the drainage bag. Here's the catch on all this. The surgeon that came in was not Marie's surgeon, it was his senior partner. He spoke out loud and asked who changed the drainage bag level. I told him it was his partner. Then we noticed Marie's right leg. The skin actually started to twitch. Her leg started muscles began flexing, quite quickly. It lasted for a few minutes. He got the nurse on duty, and gave her some orders. He changed the level of the fluid bag, back to be level with her head. The nurse injected something into Marie's IV tube. The twitching ended and he took off. He didn't come back. I wasn't sure what I just witnessed and I still had no idea what was going on.
Monday, January 11, 2010
now what
Maire spent some time in a recovery room and then moved to intensive care. We I arrived in the morning, she was already awake. She had a large white turban like bandage wrapped around her head. She was still drowsy, but responsive and she knew where she was. It appeared that things were going the way the doctor said. She was doing well. As others came by during the day, she continued to get stronger and more alert, talking and laughing with her visitors. They didn't want her to eat yet, and she didn't seem hungry anyway. Over the next couple of days, doctors would check on her, and seem pleased with her progress.
Besides the wrap on her head, there was also a tube, draining spinal fluid from her brain. The fluid flowed into a bag, attached to an IV pole, next to her bed. The surgeon was very particular about that tube. He wanted the drainage bag to be level with her head. He wanted to created an equilibrium. If the bag was lower, it might drain too fast. If it was higher, it might not drain at all. He wanted the fluid to drain in order to keep swelling down. But if it drained to fast, the brain might collapse. After that first couple of days he decided to change the height of the bag so that it was no longer level with Marie's head.
During this recovery time, Marie's sister and brothers, decided to go home. They have their own families. That left my mother and father in laws here with us. I had stayed in the hospital the last couple of nights, sleeping in the intensive care waiting room. Since some people went home, and since Marie seemed to be doing so good, I decided to sleep at home that night. They were going to move Marie to a regular room the next day and I thought I could stay in her room, sleeping in a reclining chair. That meant this would be a good night to get some sleep at home. I was wrong again.
About 2:00am the phone rang. It was a nurse from the intensive care unit. They couldn't wake Marie. They take vital signs and give medication every few hours. Part of the vitals was a responsiveness to communication. They weren't getting anything. The nurse told me, the surgeon has been notified, and that he ordered an MRI. They wanted me to come right down. My mother-in-law went with me and we got there quickly.
When we arrived, Marie had already been taken for the MRI. We had to wait for her to return.
Besides the wrap on her head, there was also a tube, draining spinal fluid from her brain. The fluid flowed into a bag, attached to an IV pole, next to her bed. The surgeon was very particular about that tube. He wanted the drainage bag to be level with her head. He wanted to created an equilibrium. If the bag was lower, it might drain too fast. If it was higher, it might not drain at all. He wanted the fluid to drain in order to keep swelling down. But if it drained to fast, the brain might collapse. After that first couple of days he decided to change the height of the bag so that it was no longer level with Marie's head.
During this recovery time, Marie's sister and brothers, decided to go home. They have their own families. That left my mother and father in laws here with us. I had stayed in the hospital the last couple of nights, sleeping in the intensive care waiting room. Since some people went home, and since Marie seemed to be doing so good, I decided to sleep at home that night. They were going to move Marie to a regular room the next day and I thought I could stay in her room, sleeping in a reclining chair. That meant this would be a good night to get some sleep at home. I was wrong again.
About 2:00am the phone rang. It was a nurse from the intensive care unit. They couldn't wake Marie. They take vital signs and give medication every few hours. Part of the vitals was a responsiveness to communication. They weren't getting anything. The nurse told me, the surgeon has been notified, and that he ordered an MRI. They wanted me to come right down. My mother-in-law went with me and we got there quickly.
When we arrived, Marie had already been taken for the MRI. We had to wait for her to return.
Sunday, January 10, 2010
Marie quits smoking
The week Marie waited in the hospital for the equipment to come was a difficult one for her. She didn't understand what was happening, or why she was there. She believed she had cancer of the abdomen instead of a brain tumor. As confused as a tumor made her, it did not change the way that nicotine affected her body. Her first night in the hospital, she was alone in her room. I decided to spend that night at home. We just returned from Egypt. She seemed to be sleeping a lot and I wasn't sleeping at all. I thought, a good night sleep, would be just what the doctor ordered.
At 2:00am the phone rang. The caller id showed it was the hospital. I answered with apprehension. A woman's voice, on the other end identified herself as my wife's nurse. She went on to tell me. that Marie was being unruly. She was trying to open the 6th floor window so she could smoke a cigarette. Marie had smoked for at least 30 years. The tumor didn't suppress the nicotine addiction. The windows on the floor don't open, but Marie seemed to be unaware of that fact. The nurses kept telling her that smoking wasn't allowed. She yelled at the nurses, swearing at them and calling them names. The nurse that called, informed me, that they didn't have to take that abuse, and if it didn't stop they would not let her stay. I agreed to come right down to the hospital right away.
Thinking back on that event now, I should have told the nurse that she needed to deal with the situation herself. I believe that it was abusive of her to call me at home, in the middle of the night, to tell me my wife was being a naughty girl. As much as Marie wanted a cigarette, I know her well enough to know, that she wouldn't treat other people abusively. I believe it was the tumor affecting her personality. This was still new to me then. I didn't understand either. Hospital, and their staff, need to be familiar with brain tumors and how they affect someone's personality.
Even today, I witness medical staff, ask Marie questions, and write down her answers as if there true. Marie, in my opinion, sometime lives in an alternate reality. Her answers are true to her, so they are accepted as true by the medical staff. They need some type of training, on verifying answers, so they can give the appropriate service. It takes quite a while before the medical staff comes to recognize that her answers, sometimes don't make sense in the current situation. Sometimes the staff members doesn't make the connection and I have to step in to explain the situation.
Anyway, after the surgery, Marie never had another cigarette. She never asked for one, and I don't bring it up. She quit by forgetting that she smoked.
At 2:00am the phone rang. The caller id showed it was the hospital. I answered with apprehension. A woman's voice, on the other end identified herself as my wife's nurse. She went on to tell me. that Marie was being unruly. She was trying to open the 6th floor window so she could smoke a cigarette. Marie had smoked for at least 30 years. The tumor didn't suppress the nicotine addiction. The windows on the floor don't open, but Marie seemed to be unaware of that fact. The nurses kept telling her that smoking wasn't allowed. She yelled at the nurses, swearing at them and calling them names. The nurse that called, informed me, that they didn't have to take that abuse, and if it didn't stop they would not let her stay. I agreed to come right down to the hospital right away.
Thinking back on that event now, I should have told the nurse that she needed to deal with the situation herself. I believe that it was abusive of her to call me at home, in the middle of the night, to tell me my wife was being a naughty girl. As much as Marie wanted a cigarette, I know her well enough to know, that she wouldn't treat other people abusively. I believe it was the tumor affecting her personality. This was still new to me then. I didn't understand either. Hospital, and their staff, need to be familiar with brain tumors and how they affect someone's personality.
Even today, I witness medical staff, ask Marie questions, and write down her answers as if there true. Marie, in my opinion, sometime lives in an alternate reality. Her answers are true to her, so they are accepted as true by the medical staff. They need some type of training, on verifying answers, so they can give the appropriate service. It takes quite a while before the medical staff comes to recognize that her answers, sometimes don't make sense in the current situation. Sometimes the staff members doesn't make the connection and I have to step in to explain the situation.
Anyway, after the surgery, Marie never had another cigarette. She never asked for one, and I don't bring it up. She quit by forgetting that she smoked.
Saturday, January 9, 2010
the operation
The surgeon estimated the operation was to last about 5 hours. Marie's mother was already here, and her sister and two of her brothers flew in to lend support. We all went to the hospital and stayed together in the waiting room. Maire was taken into the operating room about 9:00am, but surgery didn't start until 11:00am. The only updates would come from a volunteer who was manning an information desk. That's how we found out that surgery began 2 hours late. Again, as I've learned over time, a delay is a normal occurrence. They could be setting up equiptment, shaving the scalp, or waiting on the anesthesiologist.
Time went by, and my children became restless. My sister-in-law and brother-in-laws took the kids and they all went to lunch. I stayed and waited for news. I honestly don't remember if my mother-in-law went to lunch or stayed with me. I was in my own world at the time. We finally received word that the procedure was going as planned and the doctor would be out to see us when it was over.
Everyone returned from lunch and we all began waiting again. Time passed as slowly as you could imagine. Every second clicked away, tic-tic-tic. No word. Tic-tic-tic. No word. Tic-tic-tic. Get the picture. My sister-in-law and brother-in-laws began to act like children. Laughing, touching things in the waiting room, playing with the phone. I know there was at lot of tension, but I found it distracting. By now it was late in the afternoon and the volunteer went home. That left no one to man the phone. We would have answered it, but there never was another call. We were not getting any updates. This was taking longer than expected, but we had no idea what was going on. There was no one, anywhere, to ask. We were totally cutoff. More hours passed and we all decided that Maries sister and brothers would take my children home. They would all stay there and wait for my call, when we did get an update. My mother-in-law stayed at the hospital with me. We continued to wait.
You have to remember this all happened on Halloween day and now it was stretching into the evening. Brain surgery on Halloween was like something out of a horror novel. I half expected the Frankenstein monster to come crashing into the waiting room. The door finally began to open. I saw a Green arm, then a green leg. It was the surgeon.
10:00pm.
The surgery lasted 11 hours. Add that to the 2 hour delay making the whole thing a 13 hour procedure with only two updates that came early in the day. When he sat down, I didn't know what he would say. He explained that the tumor was larger than anticipated, comparing it to the size of his fist. His partner actually came in and helped him, because the tumor was so big. While he felt he got it all, he said there was a shadow, deep at the base of the tumor, which could be a small piece, or nothing at all. He wasn't concerned about it, reassuring me, if there was a recurrence, it could be handled, easily, with radiation. He again stated that he expected her to be in the hospital for a few days. Then home for full recovery. He told us to get some sleep. We went home, with the anticipation, of returning in the morning to visit a recovering surgical patient. It wasn't to be as I expected.
The next post will explain how Marie quit smoking.
Time went by, and my children became restless. My sister-in-law and brother-in-laws took the kids and they all went to lunch. I stayed and waited for news. I honestly don't remember if my mother-in-law went to lunch or stayed with me. I was in my own world at the time. We finally received word that the procedure was going as planned and the doctor would be out to see us when it was over.
Everyone returned from lunch and we all began waiting again. Time passed as slowly as you could imagine. Every second clicked away, tic-tic-tic. No word. Tic-tic-tic. No word. Tic-tic-tic. Get the picture. My sister-in-law and brother-in-laws began to act like children. Laughing, touching things in the waiting room, playing with the phone. I know there was at lot of tension, but I found it distracting. By now it was late in the afternoon and the volunteer went home. That left no one to man the phone. We would have answered it, but there never was another call. We were not getting any updates. This was taking longer than expected, but we had no idea what was going on. There was no one, anywhere, to ask. We were totally cutoff. More hours passed and we all decided that Maries sister and brothers would take my children home. They would all stay there and wait for my call, when we did get an update. My mother-in-law stayed at the hospital with me. We continued to wait.
You have to remember this all happened on Halloween day and now it was stretching into the evening. Brain surgery on Halloween was like something out of a horror novel. I half expected the Frankenstein monster to come crashing into the waiting room. The door finally began to open. I saw a Green arm, then a green leg. It was the surgeon.
10:00pm.
The surgery lasted 11 hours. Add that to the 2 hour delay making the whole thing a 13 hour procedure with only two updates that came early in the day. When he sat down, I didn't know what he would say. He explained that the tumor was larger than anticipated, comparing it to the size of his fist. His partner actually came in and helped him, because the tumor was so big. While he felt he got it all, he said there was a shadow, deep at the base of the tumor, which could be a small piece, or nothing at all. He wasn't concerned about it, reassuring me, if there was a recurrence, it could be handled, easily, with radiation. He again stated that he expected her to be in the hospital for a few days. Then home for full recovery. He told us to get some sleep. We went home, with the anticipation, of returning in the morning to visit a recovering surgical patient. It wasn't to be as I expected.
The next post will explain how Marie quit smoking.
Friday, January 8, 2010
back to the hospital
Marie waited 7 days in the hospital for the equipment to come in. It was a device that would allow the surgeon to follow a three dimensional picture of her brain, so they could find all the tumor. After a couple of days of waiting, a nurse on the floor approached me, and said, that a case worker was assigned to follow Marie's condition. That, as it turns out, is a normal thing for an insurance company to do. The nurse told me that she understood, that the case worker wanted Marie to go home and wait for the equipment to arrive, instead of staying in an expensive hospital. I called our family physician and explained the situation to him. He assured me that no one would send her home. She could be a danger to herself. I don't know if the insurance company really wanted to send her home, or if the nurse was jumping the gun, but it was drama that I didn't need at the time.
Wednesday, January 6, 2010
back to today
On Wednesday, we received a letter from Marie's' employer, that said, they have sent four letters requesting leave of absence papers. This was to be the last notice, and if they didn't hear within 3 days they would considered that she terminated her employment. She works part time for a large company, that's been great to her. I believe their letter was fair and well founded.
The problem here has been getting the doctor to fill out the papers. He's had them since late October. I have made so many calls to the office that I lost count. I made one more on Wednesday. They filled out the papers and faxed them in that day. I know they're busy, but so are we. 2 1/2 months, to fill out these papers, seems to me, to be too long. Marie doesn't want to be unemployed. The hope and desire of going back to work, gives her strength. To feel that she contributes to society, gives her a sense of purpose.
No one should feel that there is nothing left. To just sit in your home everyday, waiting to find out what direction your disease will take, is no way to live a life. When they talk about -Quality of Life-to me it seems to be the ability to live your daily life, not just focusing on treatments, MRI's, tests, appointments, etc.
The problem here has been getting the doctor to fill out the papers. He's had them since late October. I have made so many calls to the office that I lost count. I made one more on Wednesday. They filled out the papers and faxed them in that day. I know they're busy, but so are we. 2 1/2 months, to fill out these papers, seems to me, to be too long. Marie doesn't want to be unemployed. The hope and desire of going back to work, gives her strength. To feel that she contributes to society, gives her a sense of purpose.
No one should feel that there is nothing left. To just sit in your home everyday, waiting to find out what direction your disease will take, is no way to live a life. When they talk about -Quality of Life-to me it seems to be the ability to live your daily life, not just focusing on treatments, MRI's, tests, appointments, etc.
to the hospital
We went from the Omaha airport to pick up my mother in law, and then straight to the doctors office. He reviewed the CT scan, from Egypt, which I carried home in a large brown envelope. Today it's all on computer discs. He sent us directly to the hospital and he contacted a surgeon. That began a two month stay in the hospital for Marie. That's a long time for anyone to stay in a hospital. They sent her for an MRI. I've lost count on how many she's had over the years, but that was her first brain MRI.
The surgeon explained to us, that although the tumor was large, it was not immanently life threatening. They would have time to get some special equipment sent in to use during the operation. He felt they could remove the tumor. He told us this trype of tumor is considered benign. It was called a central neurocytoma. It was located in a ventricle so it was blocking the flow of spinal fluid. That created the the tiptoe walk and the balance issues she experienced. He went on to explain that this type of tumor was usually treatable with recurrence being very rare. If you were going to have a brain tumor, then this was a good one to have.
The surgeon had explain to us that the word cancer is just a generic label, and when considering primary brain tumors, they were either malignant or benign. The malignant type was fast growing and could invade healthy tissue. The benign type was slower growing and would not invade the surrounding tissue. To me, it was a vague description. Even to this day I don't know if they consider her to have cancer or not. He never made any promises, but I did come away feeling this was a serious situation but everything would be fine. He thought she would be in the hospital for a few days after the operation and then home to finish the recovery. I just had in my head that recovery was two-to-four weeks and then on with life.
I was wrong.
It took a week for the equipment to arrive. Surgery was scheduled for Halloween day. During that time Marie had friends come to visit her in the hospital She told them she was having surgery of the abdomen, to remove cancer. Her friends would question me on what she was talking about. I believe the tumor was affecting her memory and her reality. I couldn't wait for them to get it out. She never had headaches or other discomforts. The balance was a safety issue and the memory was a concern.Otherwise, she appeared healthy. I never had any reason to believe that things wouldn't work out fine.
A confident surgeon.
A benign tumor.
No other health issues.
The surgeon explained to us, that although the tumor was large, it was not immanently life threatening. They would have time to get some special equipment sent in to use during the operation. He felt they could remove the tumor. He told us this trype of tumor is considered benign. It was called a central neurocytoma. It was located in a ventricle so it was blocking the flow of spinal fluid. That created the the tiptoe walk and the balance issues she experienced. He went on to explain that this type of tumor was usually treatable with recurrence being very rare. If you were going to have a brain tumor, then this was a good one to have.
The surgeon had explain to us that the word cancer is just a generic label, and when considering primary brain tumors, they were either malignant or benign. The malignant type was fast growing and could invade healthy tissue. The benign type was slower growing and would not invade the surrounding tissue. To me, it was a vague description. Even to this day I don't know if they consider her to have cancer or not. He never made any promises, but I did come away feeling this was a serious situation but everything would be fine. He thought she would be in the hospital for a few days after the operation and then home to finish the recovery. I just had in my head that recovery was two-to-four weeks and then on with life.
I was wrong.
It took a week for the equipment to arrive. Surgery was scheduled for Halloween day. During that time Marie had friends come to visit her in the hospital She told them she was having surgery of the abdomen, to remove cancer. Her friends would question me on what she was talking about. I believe the tumor was affecting her memory and her reality. I couldn't wait for them to get it out. She never had headaches or other discomforts. The balance was a safety issue and the memory was a concern.Otherwise, she appeared healthy. I never had any reason to believe that things wouldn't work out fine.
A confident surgeon.
A benign tumor.
No other health issues.
Tuesday, January 5, 2010
the trip home
We were able to get on a flight the next morning. Getting through customs and on to our plane was no problem. The flight took us back to Heathrow airport in London. There were no issuses, and she seemed to be doing fine. I decided it was time to call home and let the family know what was going on. My mother in law answered the phone, and of course wanted to know what was wrong. I wasn't sure how to saw it, that her oldest daughter was returning home to face brain tumor treatments, whatever that was going to be. I had already called our family doctor, who walked me through what to watch out for, and agreed to see Marie the moment we landed in Omaha.
Mom was babysitting our daughter, so whatever I was going to say needed to come across calmly and with confidence. I didn't want my daughter to get upset while we were still out of the country. I told my mother in law that Marie had a siezure in Egypt and the doctors discovered a brain tumor. That was not the right thing to say. Mom lost it and began crying. I immediately told her to stay strong and try to keep it together. We agreed that I would call her when we landed in Chicago.
I alerted the personal, at the check in gate, about the situation, in case we had trouble on the plane. They let me know that the pilot would be in touch with a medical team in the States, in case we had a problem in the air. I thought that was great, and it made me feel that would could actally make the trip. Being in London, I debated on whether we should stay and seek treatment there. I was glad, though, that the airline was so helpful, and was able to get us home.
The first problem we had, occurred when we went to board the plane in London. The ramp, onto the plane, is at a small decline. When Marire was attempting to walk down that ramp, the tumor was blocking the flow of spinal fluid. She started the tiptoe stride again. As she went down the ramp, she began to go faster so she didn't lose her balance. Faster and faster until she was almose running. She couldn't stop until she reached the end of the ramp, and crashed into the side of the plane. The airlne stewardess helpped her get on board. That was the last time I let her walk. We used a wheel chair from then on, until she was safely in the hospital.
Marie slept the entire flight, which lasted about 8 hours. We had someone wheel her through customs and to the connecting gate. While she was going from customs to the gate, she began to lose all sense of where we were, and what was going on. Instead of seeing the airport around her, she began to see the neighborhood she grew up in 35-40years earlier. She was totally hallucinating. Since it was already late at night, and I wasn't sure sure could make the last flight home, I decided to spend the night in Chicago. We stayed at a hotel connected to the airport. I thought if she slept, she may have the strength to continue the trip home. It worked and we found ourselves in Omaha, mid-morning, the next day.
Mom was babysitting our daughter, so whatever I was going to say needed to come across calmly and with confidence. I didn't want my daughter to get upset while we were still out of the country. I told my mother in law that Marie had a siezure in Egypt and the doctors discovered a brain tumor. That was not the right thing to say. Mom lost it and began crying. I immediately told her to stay strong and try to keep it together. We agreed that I would call her when we landed in Chicago.
I alerted the personal, at the check in gate, about the situation, in case we had trouble on the plane. They let me know that the pilot would be in touch with a medical team in the States, in case we had a problem in the air. I thought that was great, and it made me feel that would could actally make the trip. Being in London, I debated on whether we should stay and seek treatment there. I was glad, though, that the airline was so helpful, and was able to get us home.
The first problem we had, occurred when we went to board the plane in London. The ramp, onto the plane, is at a small decline. When Marire was attempting to walk down that ramp, the tumor was blocking the flow of spinal fluid. She started the tiptoe stride again. As she went down the ramp, she began to go faster so she didn't lose her balance. Faster and faster until she was almose running. She couldn't stop until she reached the end of the ramp, and crashed into the side of the plane. The airlne stewardess helpped her get on board. That was the last time I let her walk. We used a wheel chair from then on, until she was safely in the hospital.
Marie slept the entire flight, which lasted about 8 hours. We had someone wheel her through customs and to the connecting gate. While she was going from customs to the gate, she began to lose all sense of where we were, and what was going on. Instead of seeing the airport around her, she began to see the neighborhood she grew up in 35-40years earlier. She was totally hallucinating. Since it was already late at night, and I wasn't sure sure could make the last flight home, I decided to spend the night in Chicago. We stayed at a hotel connected to the airport. I thought if she slept, she may have the strength to continue the trip home. It worked and we found ourselves in Omaha, mid-morning, the next day.
Monday, January 4, 2010
but first something new
I decided to give our first names. I'm George and my wife's name is Marie. We live in Omaha Nebraska. My reason for blogging is to talk about brain tumors, surgery, radiation, chemo therapy, doctors, nurses, insurance companies, billing departments, and anything else that you may ask me. Please comment.
Sunday, January 3, 2010
The diagnosis
The guard translated for me and explained, to the two police officers, what was going on. My wife was loaded into the ambulance, which by the way, was a white van with an old fashioned gurney. The driver and his partner decided to take us to the American hospital, because I only spoke English. The police stayed right behind us as we traveled to the hospital. It really wasn't a hospital. It was lake a very large garage with some examining rooms. The doctor spoke English. I explained to him about the fainting spells, and he set about examining my wife. While that was going on, I was brought to the other end of this examining room. With the help of an interpreter, I found myself being interrogated by the police.
They wanted to know what happened. They were carrying guns. Not in holsters, but in their hands. They weren't threatening me, they just had the guns in their hands. The guns appeared, to me, to be some type of automatic weapon. I have no knowledge of firearms, it's just that they looked the way I would expect automatic weapons to look. As the police were witiing down my statement, I could see the doctor doing tests on my wife. He was using a tuning fork. I still havn't figured out what he was doing, but he did seem quite capable. He called over one of the police officers and that had a short conversation. Then the doctor came over to talk to me. He was very polite and explained that he wanted to send her for pictures of her head. So we got back into the ambulance and off we went. The police stayed right behind us.
We went to a medical type building and we were then separated. They took my wife into a large room with CT scanning equipment. I could see her through a large window. There were other people in this room also having CT scans done. I was surprised that there was no privacy and that they could do a number of scans at the same time. I was ushered up to a check in desk and told the test would cost money. I took out what I had in Egyptian money and the person at the desk took what they needed form my hand. I don't really know what it cost, but I don't think it was more that a hundred dollars. The police stayed with me the entire time, one on each side of me, still with their guns drawn.
About 30 minutes later, a technician came out and talked to one of the police officers. They told me to go with the technician. He took me into the large room with all the patients, and walked me over to a monitor. In front of me was a picture of a brain with a very large mass near the center. I asked him if that was something, and he said yes but that they needed to take more pictures, this time with a dye injected into her vein. He handed me a small packet with a needle protruding from the center. He wanted me to inject the dye. There was no way that I was going to do any injecting. He told he he could do it, but it would cost twenty-five dollars extra. I gave him the money, he did it, and finished the pictures.
We got back into the van and the driver told me he would take us back to the American hospital. Off we went. I then realized the police were gone. After a short drive, we stopped on a side street, and the driver told me thee would be right back. We actually sat in the van about an hour. It took me a awhile, but I figured out, that they went to lunch and left us there. When they returned, we continued to the American hospital. The doctor wasn't there, he was at an actual hospital. They took us there next.
When we caught up with the doctor, he called me aside, and told me he had received the results. He said she had a brain tumor and that she needed to go home for help. He could make her comfortable, but they were not equipped to deal with this type of illness. I decided to tell her myself. I went over to her and explained about the brain tumor, and that we needed to go home right away. She took it very well. The ambulance drivers took us back to our hotel. We had to pay them in cash for their service.
The time was now about 5:00 o'clock. This ordeal had lasted the whole day. Our tour guide came to our room He of course, had been very concerned, not really knowing what happened to us. He arranged for us to have dinner in our room, with that incredible view of the Nile River. He also helped me make plane reservations so we could leave the next morning. That trip could take about 24 hours. It had scheduled stops in both London and Chicago.
The next posting will be the trip home.
They wanted to know what happened. They were carrying guns. Not in holsters, but in their hands. They weren't threatening me, they just had the guns in their hands. The guns appeared, to me, to be some type of automatic weapon. I have no knowledge of firearms, it's just that they looked the way I would expect automatic weapons to look. As the police were witiing down my statement, I could see the doctor doing tests on my wife. He was using a tuning fork. I still havn't figured out what he was doing, but he did seem quite capable. He called over one of the police officers and that had a short conversation. Then the doctor came over to talk to me. He was very polite and explained that he wanted to send her for pictures of her head. So we got back into the ambulance and off we went. The police stayed right behind us.
We went to a medical type building and we were then separated. They took my wife into a large room with CT scanning equipment. I could see her through a large window. There were other people in this room also having CT scans done. I was surprised that there was no privacy and that they could do a number of scans at the same time. I was ushered up to a check in desk and told the test would cost money. I took out what I had in Egyptian money and the person at the desk took what they needed form my hand. I don't really know what it cost, but I don't think it was more that a hundred dollars. The police stayed with me the entire time, one on each side of me, still with their guns drawn.
About 30 minutes later, a technician came out and talked to one of the police officers. They told me to go with the technician. He took me into the large room with all the patients, and walked me over to a monitor. In front of me was a picture of a brain with a very large mass near the center. I asked him if that was something, and he said yes but that they needed to take more pictures, this time with a dye injected into her vein. He handed me a small packet with a needle protruding from the center. He wanted me to inject the dye. There was no way that I was going to do any injecting. He told he he could do it, but it would cost twenty-five dollars extra. I gave him the money, he did it, and finished the pictures.
We got back into the van and the driver told me he would take us back to the American hospital. Off we went. I then realized the police were gone. After a short drive, we stopped on a side street, and the driver told me thee would be right back. We actually sat in the van about an hour. It took me a awhile, but I figured out, that they went to lunch and left us there. When they returned, we continued to the American hospital. The doctor wasn't there, he was at an actual hospital. They took us there next.
When we caught up with the doctor, he called me aside, and told me he had received the results. He said she had a brain tumor and that she needed to go home for help. He could make her comfortable, but they were not equipped to deal with this type of illness. I decided to tell her myself. I went over to her and explained about the brain tumor, and that we needed to go home right away. She took it very well. The ambulance drivers took us back to our hotel. We had to pay them in cash for their service.
The time was now about 5:00 o'clock. This ordeal had lasted the whole day. Our tour guide came to our room He of course, had been very concerned, not really knowing what happened to us. He arranged for us to have dinner in our room, with that incredible view of the Nile River. He also helped me make plane reservations so we could leave the next morning. That trip could take about 24 hours. It had scheduled stops in both London and Chicago.
The next posting will be the trip home.
Saturday, January 2, 2010
The Cairo Museum
We met our tour group in the lobby of the hotel on the morning of our first full day in Egypt. We were so close to the Cairo Museum, we walked there as a group. It was a beautiful day and we were anticipating the beginning of a great adventure. What we got was the start of a nightmare. Just outside the museum while we were waiting in line to get in, my wife suddenly stated that she was going to faint. It didn't appear to me that she fainted. Her arms went straight down to her sides, she threw up, lost her bladder and her knees buckled. A guard from the Museum came quickly to my aid and he brought us inside to a nurse. She gave my wife orange juice and cleaned her up. She sent me back to the hotel to retrive clean cloths to change my wife into. The nurse speculated that my wife may be pregnant. I explained that there was no chance because she had a hysterectomy a few years earlier.
My head was swimming. A funny walk, a collapse in the London airport and now what appeared to be a seizure. I asked the nurse if she could get us an ambulance, but both she and the guard did everything that could to avoid calling for one. She said we should just go back to the hotel and let my wife rest for a while. I couldn't get any more help there so I agreed to take her back to the hotel. I figured I could get the hotel staff to help. I lost track of the tour group. I didn't know, if they knew, what had happened to us.
Back outside the museum, she had another fainting spell. I caught her and began to yell for help. The guard and the nurse had come outside and were watching us. When they heard me yell they came running over to us. I insisted they get us an ambulance. They tried not to, but I started to yell for help again. The guard said he would get an ambulance and a few minutes later one arrived. And so did the police.
My head was swimming. A funny walk, a collapse in the London airport and now what appeared to be a seizure. I asked the nurse if she could get us an ambulance, but both she and the guard did everything that could to avoid calling for one. She said we should just go back to the hotel and let my wife rest for a while. I couldn't get any more help there so I agreed to take her back to the hotel. I figured I could get the hotel staff to help. I lost track of the tour group. I didn't know, if they knew, what had happened to us.
Back outside the museum, she had another fainting spell. I caught her and began to yell for help. The guard and the nurse had come outside and were watching us. When they heard me yell they came running over to us. I insisted they get us an ambulance. They tried not to, but I started to yell for help again. The guard said he would get an ambulance and a few minutes later one arrived. And so did the police.
Friday, January 1, 2010
but first an explanation
Before I start, I want to clear a few things up. I have never written a blog before. I am not a writer. I am a husband and father. Just a regular guy with a great wife and kids. My children are grown now, twenty-eight and twenty-five. The oldest is a son and the youngest is a daughter. When this brain tumor stuff started my son was in college, a three hour drive from home. My daughter was about to turn sixteen and in high school. I haven't identified us by name or location yet only because I have never done this before. I want to walk before I run. I'm really doing this because I need to get things out of my system.
After all these years dealing brain tumors, I found that I lost my faith and trust in others. Not everyone, but so many that I didn't expect. Eventually I became blinded by the emotional stress and financial loss caused by a major illness. You can never be prepared.
I have asked a nurse to leave my wife's room. You should have seen how fast the hospital administration came running down to see me. I asked to work with a new social worker because I felt the first one was treating us like a number, and kept reciting policy and procedures instead of treating us like people with real problems. And then there were the doctors that didn't believe that spinal fluid was leaking out of the top of my wife's head, because they did not see it. Even after a staff infection set in, they still didn't believe there could be a hole in her head. Her hospital nurses discovered the fluid on her pillow, which is exactly what I described to the doctors in the first place. We no longer see one of those doctors. At least the other doctor told me that he missed the hole, and I believe that he learned from the experience.
I have learned to be my own patient advocate. I learned how to, and what kind, of questions to ask. And I learned how to get them most out of our doctor appointments. Those few minutes that they give us, are my wife's minutes, not the doctors minutes. We are there for my wife, not the doctor.
Thanks for letting me vent.
After all these years dealing brain tumors, I found that I lost my faith and trust in others. Not everyone, but so many that I didn't expect. Eventually I became blinded by the emotional stress and financial loss caused by a major illness. You can never be prepared.
I have asked a nurse to leave my wife's room. You should have seen how fast the hospital administration came running down to see me. I asked to work with a new social worker because I felt the first one was treating us like a number, and kept reciting policy and procedures instead of treating us like people with real problems. And then there were the doctors that didn't believe that spinal fluid was leaking out of the top of my wife's head, because they did not see it. Even after a staff infection set in, they still didn't believe there could be a hole in her head. Her hospital nurses discovered the fluid on her pillow, which is exactly what I described to the doctors in the first place. We no longer see one of those doctors. At least the other doctor told me that he missed the hole, and I believe that he learned from the experience.
I have learned to be my own patient advocate. I learned how to, and what kind, of questions to ask. And I learned how to get them most out of our doctor appointments. Those few minutes that they give us, are my wife's minutes, not the doctors minutes. We are there for my wife, not the doctor.
Thanks for letting me vent.
Then
It started in the fall of 2000. We didn't know it then, but there were signs. We just didn't recognize what they meant. On a trip to a local discount store, both my daughter and I noticed my wife seemed to be walking funny. It was like a tiptoe stride. She said she was fine and we kind of laughed about it. What was happening was the tumor was so large it was blocking the flow of spinal fluid. We went to the store because we were doing some shopping for our upcoming trip. My wife and I planned a twenty-fifth wedding anniversary trip to Egypt.
She appeared to be fine after that and we left for our long awaited trip to see the Pyramids. We had a layover in London and spent that time looking around the Heathrow airport. While walking around she had a spell where she lost her strenghth and collapsed into my arms. Two English women came to my aid and brought over a chair for her to sit in. The women suggested that she needed something to eat since our flight had been over night and we didn't get much sleep. We were right near a pub, that is in the airport, so we went in to eat. It did help.
I couldn't help but to wonder if the funny walk and the loss of strength were related. I wanted to go home but she insisted that she was fine and wanted to continue. We did continue and the rest of the flight was uneventful. Everything seemed to be okay again. When we landed in Cairo it was still light outside. We took a bus to our hotel along with other people in our tour group.
Talk about history. As we traveled from the airport, the bus driver pointed out actual statues of Ramses. The hotel was beautiful and our upper floor room overlooked the Nile River. On the opposite side of the river I could see a boat anchored to the bank. It had bright colorful lights on the boat that spelled out what appeared to be english words. I found my binoculars to get a better look. The words spelled out Applebee's.
On the next posting I will talk about the start of the nightmare..
She appeared to be fine after that and we left for our long awaited trip to see the Pyramids. We had a layover in London and spent that time looking around the Heathrow airport. While walking around she had a spell where she lost her strenghth and collapsed into my arms. Two English women came to my aid and brought over a chair for her to sit in. The women suggested that she needed something to eat since our flight had been over night and we didn't get much sleep. We were right near a pub, that is in the airport, so we went in to eat. It did help.
I couldn't help but to wonder if the funny walk and the loss of strength were related. I wanted to go home but she insisted that she was fine and wanted to continue. We did continue and the rest of the flight was uneventful. Everything seemed to be okay again. When we landed in Cairo it was still light outside. We took a bus to our hotel along with other people in our tour group.
Talk about history. As we traveled from the airport, the bus driver pointed out actual statues of Ramses. The hotel was beautiful and our upper floor room overlooked the Nile River. On the opposite side of the river I could see a boat anchored to the bank. It had bright colorful lights on the boat that spelled out what appeared to be english words. I found my binoculars to get a better look. The words spelled out Applebee's.
On the next posting I will talk about the start of the nightmare..
Subscribe to:
Posts (Atom)