When I got the doctor on the phone, I was besides myself. My wife's eyes were blood red and she was in a lot of pain. His answer made me crazy.
The answer- oh yeah that could happen!
I don't remember that in any way as a possible side effect. If it was possible why didn't he tell me.
He wanted me not to worry and said it should clear up in a couple of days. He was right, it did. But why did we have to go through the worry and aggravation? He knew exactly how and when it would clear up. My guess it is more common than he let on.
Thursday, February 4, 2010
Wednesday, February 3, 2010
amityville horror
After a nights stay in the hospital, Marie was released. She went through the radiation well. She did have numbness in her head, but that's all. This type of radiation treatment is not very invasive. Only one night in the hospital for observation, and then home. This was so much better that surgery. And no rehab.
We drove home talking about how great this treatment was, with the total belief that it would work. They talked about possible side effects. How the radiation could kill good brain cells along with the bad ones. It came across as if side effects would be a rare thing.
Of course, a brain tumor is a rare thing. The type Marie had was very rare, and a recurrence is even more rare. So why couldn't she have side effects? We just didn't think about that. We looked at it as, what choice did we have? We couldn't let the tumor keep growing. And surgery was still too fresh to want to relive that nightmare. This was a cake walk. A walk in the park.
The next morning, when we woke up, Marie's eyes were swollen. I mean. so bloated that they were shut closed. And as hard as she tried, she could hardly open them, even enough to have any kind of sight at all. After a few hours of hard work, Marie was able to open her eyes just wide enough for me to see the whites of her eyes. But they wasn't any white. They were red. Blood red. No white at all. It was as if every blood vessel, she has in her eyes, ruptured. Her vision was blurred, and her eyes were in pain. She looked like she was in the Amityville Horror.
Where was that doctors phone number?
We drove home talking about how great this treatment was, with the total belief that it would work. They talked about possible side effects. How the radiation could kill good brain cells along with the bad ones. It came across as if side effects would be a rare thing.
Of course, a brain tumor is a rare thing. The type Marie had was very rare, and a recurrence is even more rare. So why couldn't she have side effects? We just didn't think about that. We looked at it as, what choice did we have? We couldn't let the tumor keep growing. And surgery was still too fresh to want to relive that nightmare. This was a cake walk. A walk in the park.
The next morning, when we woke up, Marie's eyes were swollen. I mean. so bloated that they were shut closed. And as hard as she tried, she could hardly open them, even enough to have any kind of sight at all. After a few hours of hard work, Marie was able to open her eyes just wide enough for me to see the whites of her eyes. But they wasn't any white. They were red. Blood red. No white at all. It was as if every blood vessel, she has in her eyes, ruptured. Her vision was blurred, and her eyes were in pain. She looked like she was in the Amityville Horror.
Where was that doctors phone number?
Tuesday, February 2, 2010
follow ups
To monitor a brain tumor patient, our surgeon does MRI's on a regular basis. If I remember right, he did one in March 2001 which was clear. By clear, I mean so sign of tumor. It did show extreme devastation. You can clearly see the area where the tumor was. It left a large hole in the brain. The tumor was the size of a fist. Now it was gone, leaving the void.
The next Mri was in September 2001. Not so lucky. It was growing back and needed to be addressed. Surgery wasn't deemed necessary. Stereotatic radio-surgery would be the answer. It goes by many names, but basically it's pinpoint cobalt radiation. A large stainless type bowl, resembling a macaroni strainer, was secured to Marie's head. Then that apparatus was locked down to a table that rolls into the radiation machine. Some of the holes in this strainer object were left opened, and some remained closed. When the cobalt was turned on, the radiation flowed through the open holes, in a linear fashion. The lines of radiation intersected at the tumor, with the hope of damaging the lesion. The radiation was left on for a small amount of time and then stopped. Marie was rotated, so that the radiation could be given again, coming from a different angle.
If I remember correctly, the procedure was done in thirteen intervals. Before it started, they did an MRI . A team met, and plan out the entire scenario. How many intervals, what angles, the amount of exposure time. This was all very precise. Very scientific. At the time, there were not that many of these machines around. This was a Gamma-Knife machine, and we had to dive to Lincoln Nebraska for treatment. After the radiation, Marie was kept in the hospital overnight for observation.
This was even more "Mad Scientist" to me than the surgery on Halloween day. Weird looking machinery, literally screwed into your head. Being zapped with radiation. An unforeseen force, killing cells in your brain. And that's the good stuff.
But would it work?
The next Mri was in September 2001. Not so lucky. It was growing back and needed to be addressed. Surgery wasn't deemed necessary. Stereotatic radio-surgery would be the answer. It goes by many names, but basically it's pinpoint cobalt radiation. A large stainless type bowl, resembling a macaroni strainer, was secured to Marie's head. Then that apparatus was locked down to a table that rolls into the radiation machine. Some of the holes in this strainer object were left opened, and some remained closed. When the cobalt was turned on, the radiation flowed through the open holes, in a linear fashion. The lines of radiation intersected at the tumor, with the hope of damaging the lesion. The radiation was left on for a small amount of time and then stopped. Marie was rotated, so that the radiation could be given again, coming from a different angle.
If I remember correctly, the procedure was done in thirteen intervals. Before it started, they did an MRI . A team met, and plan out the entire scenario. How many intervals, what angles, the amount of exposure time. This was all very precise. Very scientific. At the time, there were not that many of these machines around. This was a Gamma-Knife machine, and we had to dive to Lincoln Nebraska for treatment. After the radiation, Marie was kept in the hospital overnight for observation.
This was even more "Mad Scientist" to me than the surgery on Halloween day. Weird looking machinery, literally screwed into your head. Being zapped with radiation. An unforeseen force, killing cells in your brain. And that's the good stuff.
But would it work?
Monday, February 1, 2010
after rehab-now what
What do you do with yourself when you can't work. When other people need to clean your home and take care of your children. What if you can't balance a checkbook and you even struggle with the concept of money. What if others have to schedule your appointments and answer your mail. What if you have trouble even having a clear thought. And the doctors tell you to go home, your all better now.
My experience with some of the therapy was that it helps you find a way to overcome your deficits.
If you can't plan a meal, use a recipe.
What if you can't remember to use a recipe? You make a calendar. On that calendar it would say " at 4:00 pm use this recipe."
What if you can't remember to look at the calender? You set an alarm clock to ring at 3:45 pm, which will remind you to look at the calender.
What if you can't remember why the alarm is ringing? You put a note on the clock that says "when the alarm rings, you should look at the calender."
What if you read the note and you say to yourself, "what calendar?"
How come you don't get a refund when the medical treatments don't work? They provide their services, then they submit their claims to your insurance company. They, in turn, pay their portion of the bill, and you're expected to pay the balance. You know, out of pocket expenses, deductibles, copay's, uncovered services, etc, etc, etc.
What if the medicals had to sign a waiver that said, if the treatment doesn't work, they don't get paid. The medicals make no promises or guarantees. In this case, they told us, surgery, 4 or 5 days in the hospital, and then home for recovery. They explained this as, what you might expect to happen. And that is what I expected, because the medicals said so. But what happened is surgery, weeks in the intensive care, and months of rehab, with Marie being left with many deficits and no job.
My experience with some of the therapy was that it helps you find a way to overcome your deficits.
If you can't plan a meal, use a recipe.
What if you can't remember to use a recipe? You make a calendar. On that calendar it would say " at 4:00 pm use this recipe."
What if you can't remember to look at the calender? You set an alarm clock to ring at 3:45 pm, which will remind you to look at the calender.
What if you can't remember why the alarm is ringing? You put a note on the clock that says "when the alarm rings, you should look at the calender."
What if you read the note and you say to yourself, "what calendar?"
How come you don't get a refund when the medical treatments don't work? They provide their services, then they submit their claims to your insurance company. They, in turn, pay their portion of the bill, and you're expected to pay the balance. You know, out of pocket expenses, deductibles, copay's, uncovered services, etc, etc, etc.
What if the medicals had to sign a waiver that said, if the treatment doesn't work, they don't get paid. The medicals make no promises or guarantees. In this case, they told us, surgery, 4 or 5 days in the hospital, and then home for recovery. They explained this as, what you might expect to happen. And that is what I expected, because the medicals said so. But what happened is surgery, weeks in the intensive care, and months of rehab, with Marie being left with many deficits and no job.
Sunday, January 31, 2010
out patient
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.
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.
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.
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