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
Wednesday, January 13, 2010
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.
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