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.
Wednesday, January 6, 2010
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)