There were many, many families in the waiting room that day. There was a lot of conversation about cancer, surgery, and concerns about what would come after. Who would stay at the hospiltal, who was in charge of updating other family members and friends. Where the patient would go after being released from the hospital. Caring and sharing the responsibility of care giving. As the hours passed, the updates from the surgery would continue. Families would go into the private rooms, get the updates and return to their sitting areas. Generally they would come back encouraged as if things were going as planned.
The most distressing thing I witnessed was, when a person came to get one particular family. Instead of going to a private consultation room, they were told they needed to go with that person, to some other area of the hospital. I could see this wasn't a normal occurrence. It took a few minutes for the family to collect all there members. They were told to get all of their things that they brought with them. Not to leave anything in the waiting area. They seemed concerned and confused. They finally were led off, and they never returned. I only saw that one time. After that, each time someone came into the waiting area, I held my breath for a second.
Wednesday, March 31, 2010
today 3/31/10 part II
I will try to continue with the story while we wait it out. We still have a long way to go before you are caught up to today.
today 3/31/10
We are still waiting for the medicals and the insurance to try and work out proposed chemotherapy treatments. The hard part is we haven't heard from either side. When we call the doctor's office, we are not getting return calls. I don't think they know what to tell us yet. But some communication would be better than none. At least that's how I feel.
Thursday, March 25, 2010
the wait
Being in the waiting room made me anxious. There were all kinds of people there. Everyone was staying busy in their own way. Reading, knitting, watching TV, working on computers, doing jigsaw puzzles, and talking. My mother in law was working on a jigsaw puzzle, but I couldn't sit still. I would get up and walk up and down the waiting area, trying to figure out what everyone else was there for. I actually had the feeling that we didn't belong. It was just a benign tumor. Not at all what the other patients must be going through. This was an incredible place with some of the top doctors in their field.
As that two hour time got closer, I became more nervous. To me, it looked like others we getting fidgety as well. Since we all started at the same time, it would be interesting to see what order the families would get an update. One by one, each family was call by the volunteer. They were led to a private room where the nurse would update the family in private. You could always tell the type of news by the looks on the faces, as each family emerged from the private rooms. Our turn finally came. It was quick and concise. The doctor just finished opening the skull and the extraction would begin. Thank you. See you in two hours.
As that two hour time got closer, I became more nervous. To me, it looked like others we getting fidgety as well. Since we all started at the same time, it would be interesting to see what order the families would get an update. One by one, each family was call by the volunteer. They were led to a private room where the nurse would update the family in private. You could always tell the type of news by the looks on the faces, as each family emerged from the private rooms. Our turn finally came. It was quick and concise. The doctor just finished opening the skull and the extraction would begin. Thank you. See you in two hours.
Wednesday, March 24, 2010
surgery
This would be Marie's second surgery. Along with the four stereo tactic radiations, that would make six procedures in about seven and a half years. For a benign tumor, that doesn't recur often, this one has been relentless. We had to check in at 6:00am. Everything went smooth and easy. After the check in, we were led to a large room, filled with beds. Marie was changed for surgery, hooked up to machines, and waited her turn. The place appeared to be full. So many people were there for surgery. I believe they all had to do with tumors or cancer of some sort. When they finally took her, I went to a large waiting area with my mother in law. The surgery was to last about five hours. Her first surgery was much longer. More than twice that amount of time.
We checked in with a volunteer, whose job it was, to keep tracked of you. About every two hours, a nurse was to come by, and give you an update. So it was important for the volunteer to know who you are, and where you were going to be. The waiting area filled up quickly. People would stake out an area, to have enough room for there friends and family. Everyone was going through the same thing that day. Surprisingly people were polite and respectful of each other, and their space. I don't know why I was surprised about that, but I was.
We checked in with a volunteer, whose job it was, to keep tracked of you. About every two hours, a nurse was to come by, and give you an update. So it was important for the volunteer to know who you are, and where you were going to be. The waiting area filled up quickly. People would stake out an area, to have enough room for there friends and family. Everyone was going through the same thing that day. Surprisingly people were polite and respectful of each other, and their space. I don't know why I was surprised about that, but I was.
Sunday, March 21, 2010
back to Houston
We decided to drive to Houston, instead of flying. We didn't know how long we would be there, or if Marie would be in condition to fly home. It took two days to drive, but if was an easy trip. Good roads and weather conditions. Marie's mom was going to fly down and meet us there. We arrived in Houston on Sunday afternoon, checked into our hotel, and relaxed for the rest of the day. Marie's mom arrived on Monday. We checked out of our hotel, picked mom up at the airport, and checked into a different hotel. One that would accommodate us all in one room. Actually it was an up and down, two bedroom suite, with a full working kitchen.
My plans were to stay with Marie at the hospital, as long as she was there, while Maries's mom would take the shuttle back and forth from the hotel. Then we could all stay together when Marie was released. Good or bad, that was our plan.
Before we picked up my mother in law on Monday, Marie had appointments an MD Anderson. First up was cognizant testing with a neuro phycologist. The surgeon wanted a baseline to compare any changes that might occur from the surgery. Then we met with the surgeon to go over the procedure again. He is a good one for dotting the I's and crossing the T's. It turned out to be a long and exhausting day. The next day we would be off. No appointments. We decided a trip to Galveston, and the ocean would be in order. Staying busy would keep our minds clear. No worries. Marie's next time at MD Anderson would be to check in for brain surgery on Wednesday morning.
My plans were to stay with Marie at the hospital, as long as she was there, while Maries's mom would take the shuttle back and forth from the hotel. Then we could all stay together when Marie was released. Good or bad, that was our plan.
Before we picked up my mother in law on Monday, Marie had appointments an MD Anderson. First up was cognizant testing with a neuro phycologist. The surgeon wanted a baseline to compare any changes that might occur from the surgery. Then we met with the surgeon to go over the procedure again. He is a good one for dotting the I's and crossing the T's. It turned out to be a long and exhausting day. The next day we would be off. No appointments. We decided a trip to Galveston, and the ocean would be in order. Staying busy would keep our minds clear. No worries. Marie's next time at MD Anderson would be to check in for brain surgery on Wednesday morning.
Saturday, March 20, 2010
back to the story
I didn't take long, after we returned from Houston, to hear from MD Anderson. The spine MRI showed no sign of tumors. We would proceed with surgery. That was the good news. The bad news was, that didn't rule out the existence of microscopic cells in the spinal fluid. They could be there, which meant, even after surgery, the tumors could come back at any time. The radiation oncologist had explained to us, that whole brain radiation could reduce the possibility of recurrence, by 50%. That's if the cells were present, which no one knew. The tumors had been coming back almost every year. By cutting the chance in half, would that mean every other year? All these treatments were starting to sound less like a cure, and more like a delay. But a delay of what? Were they trying to buy time, waiting for research to come up with a cure? Was doing something, more reasonable than doing nothing? I do believe the medicals were doing everything they could think of.
The trouble with this tumor is there is no owners manual. This was all so rare, there just wasn't much for the doctors to go on. Normal benign brain tumor procedures were being followed. Surgery, radiation, radiation, radiation, radiation, more surgery. Chemotherapy was talked about, but ruled out at that time. It just wasn't reasonable to do. They told us that chemotherapy just didn't have much success against benign brain tumors.
We spent our time filling out leave of absence and FMLA paperwork. Arranging care for the dog. Putting jobs on hold. In three weeks we would be back in Houston, for Marie's surgery, and we didn't know when we would be back.
The trouble with this tumor is there is no owners manual. This was all so rare, there just wasn't much for the doctors to go on. Normal benign brain tumor procedures were being followed. Surgery, radiation, radiation, radiation, radiation, more surgery. Chemotherapy was talked about, but ruled out at that time. It just wasn't reasonable to do. They told us that chemotherapy just didn't have much success against benign brain tumors.
We spent our time filling out leave of absence and FMLA paperwork. Arranging care for the dog. Putting jobs on hold. In three weeks we would be back in Houston, for Marie's surgery, and we didn't know when we would be back.
today 3/20/10
I know I haven't written for a few days, but I will get back to it. I have been absorbed in all the current things going on. We met with the oncologist on Wednesday, and he reminded us again, just how rare these recurrences are. Since they are slow growing tumors, it gives time for the medicals to figure out what to do. The problem is, they don't know what to do. What they describe to us now is what would be reasonable to try. One suggestion was not to do anything at this time, and see how the tumors develop.
The most reasonable treatment appears to be another attempt at chemotherapy. Instead of the capsules, this would be done intravenously. Marie would start with a three day trial, to see how the white blood cells react. If everything looks good, it would move to five days a week, for three months. At least that's how I understood it.
The most reasonable treatment appears to be another attempt at chemotherapy. Instead of the capsules, this would be done intravenously. Marie would start with a three day trial, to see how the white blood cells react. If everything looks good, it would move to five days a week, for three months. At least that's how I understood it.
Monday, March 15, 2010
last day in Houston-part I
On our last day in Houston, Marie went for an early morning MRI of the spine. This actually took much longer than I expected. As it turned out, it was two MRI's. Since the spine is so long, they took an MRI of the upper half, then turned her around, and took one of the lower half. The only rush was that we had an afternoon flight back to Omaha. When the MRI was finished we needed to go to another building. MD Anderson has a good system of shuttles to get you from one place to another.
Off we went to see the radiation oncologist. Strangely, this time, there was no team. It was one doctor who met with us, as a courtesy. He was nice enough, and took the time to explain whole brain radiation. He felt that Omaha had quality radiation available, so there would be no reason to have it done in Houston. We left there thinking that radiation is something that we could pursue, if we wanted.
Surgery was a definite, radiation a maybe, and chemotherapy would be a last attempt. Okay so that's what we would do. Come back for surgery. But before coming back, we would ask about radiation at home.
Off we went to see the radiation oncologist. Strangely, this time, there was no team. It was one doctor who met with us, as a courtesy. He was nice enough, and took the time to explain whole brain radiation. He felt that Omaha had quality radiation available, so there would be no reason to have it done in Houston. We left there thinking that radiation is something that we could pursue, if we wanted.
Surgery was a definite, radiation a maybe, and chemotherapy would be a last attempt. Okay so that's what we would do. Come back for surgery. But before coming back, we would ask about radiation at home.
Saturday, March 13, 2010
back to the hotel
It had been a long day. We learned a lot. No chemo, Yes surgery. Radiation maybe. The next day would start with an early morning MRI, followed by an appointment with radiation. Then turn in the rental car and fly home. We know now that we would be coming back. Our best guess would be two weeks in Houston for the surgery and recovery. I just kept thinking about the last surgery. Two months in the hospital and another for more therapy. And what kind of deficits would happen now. What difference would this new surgeon make. Aren't all brain surgeons brilliant? Could there be that much difference? We were going to find out.
blood test
The last appointment of the day was for blood work. That's one thing we found out with subsequent appointments. There is always blood work. You know when you get to that area. There are people everywhere. In the waiting room. In the next waiting room. In the hallways. Just wandering around. Maire had to go up to the desk and fill out some paperwork, drop the paperwork into a basket, and wait. Every once in a while, a person would come from the door way and call out five or six names. Those people would come forward and they would be led back through the doors. Amazingly it goes fast. If you go there you won't believe it. But it does go quickly. More than likely you will see people you recognize. Not that you know them, but you have seen them. On your shuttle, or at the MRI waiting room, or even in the cafeteria. You begin to wonder why they are there. Then you back to thinking about your own stuff.
explaination of the surgery
Our main question was, why MD Anderson? The answer was partly MD Anderson, but the biggest reason was this particular surgeon. The chance for extreme, irreparable damage was too great for just any surgeon. Marie needed someone that was so skilled that that they would even attempt, what was about to be explained to us. Also MD Anderson has an operating room called the Brain Suite. The surgeon would have the ability to have an MRI taken right in the operating room. Progress could be followed, and success more likely.
What the surgeon was going to attempt to do was, to take the two hemispheres of the brain and pull them apart, slightly. Pull them apart? Slightly? And then slip down through the brain, while avoiding blood vessels, and reach the tumors. Extract the tumors, pull out of the brain, and push the two hemispheres back together. At least, this is the explanation that I heard. He described this to us, like he was describing, setting up a swing set in the back yard. A little bit of work, but no big deal.
Then as quickly as they had come in the room, the team got up and left. We just sat there, until it struck me, they were done. We got up and walked out of the examining room, walked down the long hallway, and left.
What the surgeon was going to attempt to do was, to take the two hemispheres of the brain and pull them apart, slightly. Pull them apart? Slightly? And then slip down through the brain, while avoiding blood vessels, and reach the tumors. Extract the tumors, pull out of the brain, and push the two hemispheres back together. At least, this is the explanation that I heard. He described this to us, like he was describing, setting up a swing set in the back yard. A little bit of work, but no big deal.
Then as quickly as they had come in the room, the team got up and left. We just sat there, until it struck me, they were done. We got up and walked out of the examining room, walked down the long hallway, and left.
the surgeon
Next up was the surgeon. He also lead a team of medicals. A nurse was there to note all the conversation, and student doctors were there to learn. Our surgeon at MD Anderson was really leading the whole thing for Marie. He set up the appointment with the oncologist. And he wanted her to see the radiation team as well. No stone would be left unturned. This man was friendly, comforting, and confident. Surgery would be the treatment. But a course of chemotherapy, combined with whole brain radiation, could be an option. It was a agreed that the MRI of the spine should be done, to rule out spreading. That would be done the next day, before we would leave for the airport, to return home. Also, it was important that Marie met with the radiation team, to get their take on everything. No matter what they said, surgery was still to be done. It would be scheduled for three weeks away, so we could get things settled at home.
back to today 3/13/10
Just a quick update on the current situation. The chemo treatment that Marie was doing didn't work. The oncologist here in Omaha worked with the same oncologist we had at MD Anderson to come up with a new chemo option. We will meet with our oncologist in Omaha on Wednesday to find out what he recommends. I've talked to him, by phone, a couple of times. Both calls were initiated by him, to keep us updated and informed. He is thorough and caring. Truly one of the best. With all the doctors that Marie has had, I would rank him in the top tier. What I like so much is, that I feel, he is treating the patient, not the disease.
the oncologist
After filling out all the paper work, we waited to be called to see the doctor. The waiting area is pretty typical of any other doctors office, except it was filled with people. Everyone waiting they turn. Marie had two doctor appointments on this day. First up would be an oncologist.
We were ushered through the doors into a long hallway. There appeared to be examining rooms and and offices on both sides. Medicals were walking up and down the hallway going everywhere. It was like a people highway. Finally we were put in a room, and met with a nurse, who went through the customary questions of what are your symptoms, when did they start, and so on. She left, and we waited for what seemed an eternity. Then a knock on the door, and in walked a team of people. If my memory serves me, three people came in, the oncologist, his nurse, and another doctor in training. The nurse kept notes. She was meticulously recording, what seemed like everything.
The doctor introduced himself and we went through the history of Marie's tumors. His job was to determine whether chemotherapy should be used to treat her tumors. He explained that microscopic cells could be traveling in the spinal fluid and that could be tested with a spinal tap but he didn't want to do it at this time. He did want Marie to have an MRI of the spine, to see if there was any spreading. The oncologist went on to explain that chemotherapy was not generally used to treat a benign brain tumor. It had to do with the blood brain barrier. The chemo just can't seem to get to the tumor. At this point he was ruling out treatment. Chemo would be saved as a last effort.
We were ushered through the doors into a long hallway. There appeared to be examining rooms and and offices on both sides. Medicals were walking up and down the hallway going everywhere. It was like a people highway. Finally we were put in a room, and met with a nurse, who went through the customary questions of what are your symptoms, when did they start, and so on. She left, and we waited for what seemed an eternity. Then a knock on the door, and in walked a team of people. If my memory serves me, three people came in, the oncologist, his nurse, and another doctor in training. The nurse kept notes. She was meticulously recording, what seemed like everything.
The doctor introduced himself and we went through the history of Marie's tumors. His job was to determine whether chemotherapy should be used to treat her tumors. He explained that microscopic cells could be traveling in the spinal fluid and that could be tested with a spinal tap but he didn't want to do it at this time. He did want Marie to have an MRI of the spine, to see if there was any spreading. The oncologist went on to explain that chemotherapy was not generally used to treat a benign brain tumor. It had to do with the blood brain barrier. The chemo just can't seem to get to the tumor. At this point he was ruling out treatment. Chemo would be saved as a last effort.
Wednesday, March 10, 2010
the elevator
After the MRI, it was time to meet with the surgeon. We needed to fine our way to the right elevator bank to get to the correct floor. Scattered throughout the hospital, there are location machines. When you type in your patient id number, your appoint schedule appears on the screen. You can ask it to show you directions to your next appointment. It really helped us get from place to place. We found our elevator and got on. On the elevator is a sign, which tells what each floor is for. There it was, on the wall of the elevator, different floors for different cancers. Even though each one of those floors is a blessing for so many people, I found it depressing. I kept thinking of all the people in the lobby. I found the button for the brain and spine center and pushed it.
The doors opened on the correct floor and we got off the elevator. We stood in line to check in and pay our copay. That process went quickly. Before meeting the surgeon, we were taken to our financial person. They needed to verify all the insurance information, and help get us set up on the my MD Anderson web site. We received an MD Anderson manual for new patients, which is filled with all kind of information and contact numbers. It was very professional and organized.
The doors opened on the correct floor and we got off the elevator. We stood in line to check in and pay our copay. That process went quickly. Before meeting the surgeon, we were taken to our financial person. They needed to verify all the insurance information, and help get us set up on the my MD Anderson web site. We received an MD Anderson manual for new patients, which is filled with all kind of information and contact numbers. It was very professional and organized.
the lobby
We woke early an Monday and had a good breakfast, which was included with the hotel rate. It was like being on vacation. Nothing to be afraid of today. Just consultations and tests. First up was an MRI. The medicals wanted new pictures of the brain, to help confirm, what their treatment proposal would be. Marie had so many MRI's in the past that this was no big deal for her. Just a new hospital. The difference between Sunday and Monday was the amount of people. The place was a bustling metropolis. The front entrance was lined by cars for valet parking. It wasn't just cars, it was shuttles, limos, and handicap vans. This wasn't a vacation spot, it's a refuge for people with a serious disease. People that need help. People that travel from all over the world looking for hope.
As I looked around at all the people, it didn't take me long to realize that cancer affects all people. Everyone was represented there. Men, women, and children. And there are all kinds of cancer. Brain, breast, liver, blood, and on and on. I felt like they were all there in the lobby, on a Monday morning. All kinds of people, with all kinds of cancer, in the lobby, all at once. Marie was oblivious to all this. She wanted to get to her MRI on time. Like other patients going through the lobby, trying to get treatment. Not paying attention to anyone else. They were there for a reason. They were there for help.
The MRI area was full. We went to the desk and checked in. We filled out the standard MRI forms and the lady at the desk asked us to have a seat. It seemed like most of the patients were not alone. Family and friends, caregivers of all sorts were in that waiting room. Cancer affects more than the patient. But not everyone had someone. Occasionally, a person would come to the counter alone. I wondered how they had the strength to do this by themselves.
As I looked around at all the people, it didn't take me long to realize that cancer affects all people. Everyone was represented there. Men, women, and children. And there are all kinds of cancer. Brain, breast, liver, blood, and on and on. I felt like they were all there in the lobby, on a Monday morning. All kinds of people, with all kinds of cancer, in the lobby, all at once. Marie was oblivious to all this. She wanted to get to her MRI on time. Like other patients going through the lobby, trying to get treatment. Not paying attention to anyone else. They were there for a reason. They were there for help.
The MRI area was full. We went to the desk and checked in. We filled out the standard MRI forms and the lady at the desk asked us to have a seat. It seemed like most of the patients were not alone. Family and friends, caregivers of all sorts were in that waiting room. Cancer affects more than the patient. But not everyone had someone. Occasionally, a person would come to the counter alone. I wondered how they had the strength to do this by themselves.
Houston the first time
The way Marie's treatment would work at MD Anderson was to start with a consultation appointment. Without a consultation there would be no treatment. We would have to travel to Houston on a weekend and be ready for Monday appointments. We flew down on a Sunday and checked into our hotel. All we wanted to do was relax. It would be a short few days in town and then back home.
The area in Houston where the cancer center is located, is called the medical center. There are numerous hospitals located in a central area. Around the medical center are many hotels and apartments, as well as other businesses. Most of the hotels have shuttles that run on regular schedules, taking people back and forth to the hospitals. We decided on Sunday afternoon to take the shuttle from our hotel to MD Anderson, so we could become familiar with it. I think we wanted to take the scariness out of it. It was short ride to the medical center. MD Anderson is a big place. The building was beautiful. Across the street are a clinic and a hotel, both connected by covered elevated walkways. The driver let us off at the front entrance and we went inside. We were surprised that the place seemed deserted, except for one security guard. He was quite friendly and asked how he could help. We explained that Marie had appointments there the next day, and we were trying to get familiar with the place. The guard gave us a map of the complex and showed us the different elevator banks. We were invited to look around the lobby. They have a number of fish tanks through the area and the whole place was peaceful and serene. There was nothing to be afraid of. It as a nice place with helpful, friendly people. We went back to our hotel and sat by the pool.
The area in Houston where the cancer center is located, is called the medical center. There are numerous hospitals located in a central area. Around the medical center are many hotels and apartments, as well as other businesses. Most of the hotels have shuttles that run on regular schedules, taking people back and forth to the hospitals. We decided on Sunday afternoon to take the shuttle from our hotel to MD Anderson, so we could become familiar with it. I think we wanted to take the scariness out of it. It was short ride to the medical center. MD Anderson is a big place. The building was beautiful. Across the street are a clinic and a hotel, both connected by covered elevated walkways. The driver let us off at the front entrance and we went inside. We were surprised that the place seemed deserted, except for one security guard. He was quite friendly and asked how he could help. We explained that Marie had appointments there the next day, and we were trying to get familiar with the place. The guard gave us a map of the complex and showed us the different elevator banks. We were invited to look around the lobby. They have a number of fish tanks through the area and the whole place was peaceful and serene. There was nothing to be afraid of. It as a nice place with helpful, friendly people. We went back to our hotel and sat by the pool.
Sunday, March 7, 2010
the call
After numerous calls to the medicals here, things finally changed. It had to be March 2008 when the phone rang and it was MD Anderson. The person on the other end, called to advise us of our appointment time with the surgeon in Houston. I was hoping for radiation, but our doctors here told us surgery would probably be the solution. And the surgeon in Houston had to be one of the top in the world. A world class surgeon for these two small benign tumors?
Our doctor here said we would need an exceptionally skilled surgeon, and if MD Anderson would take the case, we should jump at the chance. Not sure of why we needed such a skilled surgeon, I pressed the question with our doctor here. He explained that the right frontal lobe was cut during the first surgery, and that now one of these tumors was on the left side. If both the right and the left side of the frontal lobe are cut then there was a risk of a condition called abulia. We never heard that term before. The doctor explained that would be like a person with no emotion. What kind of quality of life would that be? That's why we needed such a skilled surgeon. It would be a dangerous surgery. Someone had to get to the tumors without cutting the brain.
A million questions crossed my mind. Sorry to say, none of them were about Marie's surgery. I wondered about health insurance. I wondered about loss of income, how lone we would be out of work. I wondered about plane fares, hotels, meals. I know it seems crazy, but we had been through this for almost eight years. A major illness is expensive. Very expensive. People will generally say, "I could imagine your medical bills". The truth is it encompasses much more. Copay's, out of pocket expenses, hotels, travel, meals, medication, loss of income for both the ill person and the caregiver. It could also include items to convert your home to accommodate someone disabled from the disease. The list of expensive seems to go on and on.
Our doctor here said we would need an exceptionally skilled surgeon, and if MD Anderson would take the case, we should jump at the chance. Not sure of why we needed such a skilled surgeon, I pressed the question with our doctor here. He explained that the right frontal lobe was cut during the first surgery, and that now one of these tumors was on the left side. If both the right and the left side of the frontal lobe are cut then there was a risk of a condition called abulia. We never heard that term before. The doctor explained that would be like a person with no emotion. What kind of quality of life would that be? That's why we needed such a skilled surgeon. It would be a dangerous surgery. Someone had to get to the tumors without cutting the brain.
A million questions crossed my mind. Sorry to say, none of them were about Marie's surgery. I wondered about health insurance. I wondered about loss of income, how lone we would be out of work. I wondered about plane fares, hotels, meals. I know it seems crazy, but we had been through this for almost eight years. A major illness is expensive. Very expensive. People will generally say, "I could imagine your medical bills". The truth is it encompasses much more. Copay's, out of pocket expenses, hotels, travel, meals, medication, loss of income for both the ill person and the caregiver. It could also include items to convert your home to accommodate someone disabled from the disease. The list of expensive seems to go on and on.
Friday, March 5, 2010
the wait
One thing about this benign tumor, things never seemed to be in a hurry. The surgeon said he would send the info to the cancer center, and that we should call on Friday, if we hadn't heard anything. And that began the weekly phone call routine. Week after week. Call after call. No news.
We really didn't know anything about MD Anderson. Looking it up on the internet, I found that it was in Houston, in what was described as a medical center. Oh great, a whole center full of medicals. That's all we needed. I believed we would get a call saying that, MD Anderson reviewed the case, and they feel we should stay in Omaha, and proceed with radiation. I didn't want Marie to go there. I wanted to believe that it was just a benign tumor. Nothing special. No need to go to a cancer center.
As time passed, we began to worry. Why no news? How bad is this? Then more time passed, and we worried even more. No News? Is there no cure? Were they wrong about the type of tumor this is? Finally we got a little angry. Why no news? Don't they care? Isn't this tumor good enough?
Of course all that was wrong. MD Anderson is an incredible place. In my opinion they have some of the best doctors in the world. Marie's tumor was presented to a tumor board. Where experts discuss. This takes time. And time was one thing Marie still had on her side. These two tumors were benign and slow growing. The important thing here was to do the right thing. She already had surgery and four radiation treatments. It was time to look at the cause, as well as the cure.
We really didn't know anything about MD Anderson. Looking it up on the internet, I found that it was in Houston, in what was described as a medical center. Oh great, a whole center full of medicals. That's all we needed. I believed we would get a call saying that, MD Anderson reviewed the case, and they feel we should stay in Omaha, and proceed with radiation. I didn't want Marie to go there. I wanted to believe that it was just a benign tumor. Nothing special. No need to go to a cancer center.
As time passed, we began to worry. Why no news? How bad is this? Then more time passed, and we worried even more. No News? Is there no cure? Were they wrong about the type of tumor this is? Finally we got a little angry. Why no news? Don't they care? Isn't this tumor good enough?
Of course all that was wrong. MD Anderson is an incredible place. In my opinion they have some of the best doctors in the world. Marie's tumor was presented to a tumor board. Where experts discuss. This takes time. And time was one thing Marie still had on her side. These two tumors were benign and slow growing. The important thing here was to do the right thing. She already had surgery and four radiation treatments. It was time to look at the cause, as well as the cure.
Thursday, March 4, 2010
the decision
Late in 2007, after the medicals monitored the tumors for a while, we got a call from the surgeons office. They wanted us to come in. We thought it was odd that the surgeon wanted to see us if the other doctor was going to do radiation. I was convinced that radiation was the way to go. I was hoping, it was the way to go.
When we arrived, we had to wait longer than normal to see the surgeon. He was usually pretty close to schedule, but any kind of emergency could have come up. When we were finally taken to the back, we were surprised to see the radiation oncologist, and the surgeon, together. They explained to us that too much radiation could be troublesome, and they both felt we should go to MD Anderson for a consultation. This central neurocytoma was not doing what they had expected. All these recurrences were not normal and they felt it was time to get the opinion of a major cancer center.
It was decided to send the info to the cancer center and see what they said.
When we arrived, we had to wait longer than normal to see the surgeon. He was usually pretty close to schedule, but any kind of emergency could have come up. When we were finally taken to the back, we were surprised to see the radiation oncologist, and the surgeon, together. They explained to us that too much radiation could be troublesome, and they both felt we should go to MD Anderson for a consultation. This central neurocytoma was not doing what they had expected. All these recurrences were not normal and they felt it was time to get the opinion of a major cancer center.
It was decided to send the info to the cancer center and see what they said.
Wednesday, March 3, 2010
two tumors
Talking with the radiation oncologist, he was confident about doing another stereo tactic treatment.. He did want to discuss it with our surgeon. That made sense to me. They would be able to compare notes and give us the best direction. I was pretty sure it would be radiation. It worked in the past and the radiation oncologist said he felt he could do it again. What they decided was to continue to monitor the situation by periodic MRI's. What I understood was, the tumors were small and growing slowly. They were not causing any symptoms, so there was no rush. Marie started the MRI cycle to watch the changes.
Even though the radiation oncologist said he could do the treatment, the surgeon seemed to overrule. There was a concern about too much radiation. The medicals wanted to be careful. I was all for the radiation and hoped that's what they would decide. Marie just wanted theses "things" out of her head. So she went from MRI to MRI. There were changes. The tumors were getting bigger.
Even though the radiation oncologist said he could do the treatment, the surgeon seemed to overrule. There was a concern about too much radiation. The medicals wanted to be careful. I was all for the radiation and hoped that's what they would decide. Marie just wanted theses "things" out of her head. So she went from MRI to MRI. There were changes. The tumors were getting bigger.
is it spreading
During this time period, the medicals decided to send Marie for a PET scan. That stands for positron emission tomography. Don't ask me to explain how it works. It's way over my head. The way I understand, it is a mapping of the inside of a body. If there are tumors growing, then that area would light up, showing activity. They were looking to see if the tumor was spreading. If there were microscopic cells in the spinal fluid, the possibility existed, for the tumor to spread anywhere down the spine. That test came back negative for any spreading. That was a good thing. The tumor seemed to be confining itself to the same general area of the brain. As long as they continued to treat the tumor, as it showed up, and there was no evidence of spreading, then it was reasonable to assume, that this condition was curable. Sure, there would be cognizant issues, and the quality of like would be reduced, but so what. Life would continue.