I started with the first dosage on Friday night. Throughout the night I suffered with reflux. I'm sure it was due to the fact that I have to take he medicine on an empty stomach. As Saturday went along, it did improve. A FB friend suggested Watermelon because apparently it neutralizes the acid. Surprisingly, Sue found watermelons at Stop and Shop. Even more surprising was that they taste good. It definitely helped the situation.
Tonight is the third of five dosages. After the 5th, I wait 23 days before starting the next round. So far so good with side effects.
To add to the fun, I seem to have a sinus infection. Gotta love it. :-( Sue and I will go to the Doctor tomorrow because she has it too.
Sunday, January 22, 2012
Monday, January 16, 2012
Consubstantial
Consubstantial: of one and the same substance, essence, or nature.
Those of you who are Catholic know that there have been changes to several of the prayers in the mass. We have been told that the changes are a more accurate translation from the original text. When I first read the changes, aside having a negative attitude to the changes, I was most disturbed by the word, "Consubstantial" which is now a part of the "Apostles Creed." As I started to recite the new translation at mass I decided to find out the definition of the word instead of being annoyed by the change. I found that he word is an interesting one and I found that kind of like it. I began trying to use incorporate it into my vocabulary. It became sort of funny as I did, often making Sue laugh of shake her head at me.
One of the uses of the word has occurred when comparing my kids behavior to mine. When Maggie or Thomas do or say something that resembles my personality or behavior, I will say that the two or three of us are consubstantial.
The other night was a difficult one for me. I felt like depression had then control during the day, but I was managing it decently. While skimming through the TV channels to find something to watch, I found, "Mrs. Doubtfire," one of my favorites. Maggie and I were sitting together and I immediately told her what a good movie it is and we should watch it. The movie had just begun. I hit record on the DVR so we could have it for the future. We enjoyed watching the movie together. Maggie especially enjoyed Robin Williams' jokes, which she now repeats throughout the day!
At the end of the movie, Robin William's character is in courtroom fighting for joint custody of his children, he speaks the following monologue:
"the moment I looked at them,
I was crazy about them. Once I held them, I was hooked. I'm addicted to my children, sir. I love them with all my heart. And the idea of someone telling me I can't be with them, I can't see them every day..It's like someone saying I can't have air.
I can't live without air,and I can't live without them."
Although the monologue had to do with divorce and custody, I and I think Maggie connected this to my serious health situation and the unknown to come. At the end of the movie, MAggie began crying. She shrugged her shoulders when asked what she was crying about which means she didn't want to tell us. I just held her and we hugged as hard as possible. Not only was she crying, but Daddy became very emotional as well. At that moment, we were sharing the sadness, the fear and the question of why this has to happen to us. Our connection at that moment was as strong as ever and yes, we are consubstantial.
Those of you who are Catholic know that there have been changes to several of the prayers in the mass. We have been told that the changes are a more accurate translation from the original text. When I first read the changes, aside having a negative attitude to the changes, I was most disturbed by the word, "Consubstantial" which is now a part of the "Apostles Creed." As I started to recite the new translation at mass I decided to find out the definition of the word instead of being annoyed by the change. I found that he word is an interesting one and I found that kind of like it. I began trying to use incorporate it into my vocabulary. It became sort of funny as I did, often making Sue laugh of shake her head at me.
One of the uses of the word has occurred when comparing my kids behavior to mine. When Maggie or Thomas do or say something that resembles my personality or behavior, I will say that the two or three of us are consubstantial.
The other night was a difficult one for me. I felt like depression had then control during the day, but I was managing it decently. While skimming through the TV channels to find something to watch, I found, "Mrs. Doubtfire," one of my favorites. Maggie and I were sitting together and I immediately told her what a good movie it is and we should watch it. The movie had just begun. I hit record on the DVR so we could have it for the future. We enjoyed watching the movie together. Maggie especially enjoyed Robin Williams' jokes, which she now repeats throughout the day!
At the end of the movie, Robin William's character is in courtroom fighting for joint custody of his children, he speaks the following monologue:
"the moment I looked at them,
I was crazy about them. Once I held them, I was hooked. I'm addicted to my children, sir. I love them with all my heart. And the idea of someone telling me I can't be with them, I can't see them every day..It's like someone saying I can't have air.
I can't live without air,and I can't live without them."
Although the monologue had to do with divorce and custody, I and I think Maggie connected this to my serious health situation and the unknown to come. At the end of the movie, MAggie began crying. She shrugged her shoulders when asked what she was crying about which means she didn't want to tell us. I just held her and we hugged as hard as possible. Not only was she crying, but Daddy became very emotional as well. At that moment, we were sharing the sadness, the fear and the question of why this has to happen to us. Our connection at that moment was as strong as ever and yes, we are consubstantial.
Tuesday, January 10, 2012
Wow! It's been a LONG time!
I'm not really sure where and how to begin again. The last post was July of 2009. I'm not sure why I stopped blogging then, but I think t that point I was feeling relatively better both mentally and physically at that time. I had a few clean MRI reports and was starting to move on.
At that time, I was in the middle of a application/interview process for the directorship I now hold. The previous director, Dave Cerullo had announced his retirement in the spring and this is a job that I had wanted for a while. The timing seemed bad at the time since I was in the middle of my recovery, however I felt I had to move ahead. The process was difficult. Thee were a couple of rounds of interviews and then a lot of waiting. It was agonizing to say the least. In the middle of August I had to start the Marching Band season as if I was still in my teaching position. It was band camp week which is a lot of time and effort. I remember being there that week and feeling out of place. I didn't feel like a member of the tam and yet nor an administrator. The unsettled feeling was difficult. By the end of the camp, I just wanted an answer whatever it was...I had to move on and prepare for I would be doing. Finally the call cam from Ross Goldin as I was pulling to the drive through window at McDonalds with my children of all places. I would be recommended to the Board of Ed as the new Director of Fine Arts and Music Education. I met with Ross and the Superintendent to begin the transition. We had already planned in January (before diagnosis) using one of my parents time share weeks to go to the Massanutten Resort in the Shenandoah valley of Virginia. I had been looking forward to this trip especially since the surgery. Since it was late August and I had a new job, I was torn about going with so much work to be done. I decided I would go with the family and half way through the week fly home to begin working. Our friend and Sue's supervisor would fly down to be with the family for the emender of the trip. We loved the resort so much that we decided to purchase a week there. We would have our one week vacation for the rest of our lives and pass it on to our children.
The first two and a half years of the job have been great. I'm doing exactly what I want to be doing and I think I am doing a good job thus far.
Throughout this time, my periodic MRI's have been clean and my anxiety about the scans has diminished greatly. Since the surgery I have experienced whatI would learn is sensory seizures. These are episodes of numbness and tingling that go through the left side of my body. As they continued and became more intense, I decided to see a local Neurologist. He prescribed an anti-seizure drug that should help the seizures. The drugs did not seem to be helping. At one of the scans we spoke to the Neuro-oncologist about the issue as we have done in the past. This time he suggested seeing a colleague of his in the city who is a seizure specialist. We made the appointment and went to Manhattan to see him. Dr. Avila increased the medication and in subsequent visits added another drug to help sop the seizure activity. To this date the meds have not worked at all and in fact the seizures have increased in frequency and intensity. Dr. Avila said that there was not much more he could do and that we should seek treatment of the remaining tumor cells. The most recent scan revealed growth in the tumor. We new that this would occur, it was just a matter of when and if the cells would change into something more serious. I had hoped it wouldn't have happened so quickly. There is no way to remove the entire tumor in a brain due to the damage it would cause. In the appointment with the neuro-oncologist, he suggested treating the tumor with either chemotherapy, radiation, or a combination of the two. We discussed the pros and cons. I told the doctor that I really was not interested in radiation because of permanent side effects that may occur. The decision was to start a chemo regimen.
The side effects of this drug, temodar, seem to be minimal compared to others, however everyone's body is different. I now wait for another scan which will be used as a baseline for future scans to find out if the drug is shrinking the tumor. The goal is to shrink it and hopefully stop the seizures. We would then look to come off of the large amounts of seizure meds.
There is certainly anxiety beginning this treatment. I have tried to limit the "pity parties" b staying positive and even changing the attitude to one of anger and determination to beat this tumor into submission. It is difficult to maintain this and there is often sadness and negativity. This is often replaced when hearing stores of others especially children who are going through much worse health situations that I have.
The family and friend support continues to be overwhelming and very helpful. I feel the love and I know the pryers continue and are working.
In February of 2009, Maggie was about to turn 6. Even back then she displayed an obvious intelligence and awareness beyond her years. She knew something was going on and at some pint we had to tell her that Daddy would be having surgery on his head.
Since then, she continues to become more aware of the world, life and death. She developed much anxiety which showed itself in major melt downs and other emotional breakdowns at home. We decided to seek the assistance of a therapist to help her work through her issues. This has made a huge difference and although there is still anxiety about Daddy's health, she has developed some strategies for dealing and communicating them. She also has a huge support network in school and church which has been huge.
So, I guess that's where we are. I thank you for your continued support and feel free to share the blog with others. this is much easier than repeating the story. I am not particularly private about my situation, but I want people t have accurate information rather than rumor.
Until next time...
At that time, I was in the middle of a application/interview process for the directorship I now hold. The previous director, Dave Cerullo had announced his retirement in the spring and this is a job that I had wanted for a while. The timing seemed bad at the time since I was in the middle of my recovery, however I felt I had to move ahead. The process was difficult. Thee were a couple of rounds of interviews and then a lot of waiting. It was agonizing to say the least. In the middle of August I had to start the Marching Band season as if I was still in my teaching position. It was band camp week which is a lot of time and effort. I remember being there that week and feeling out of place. I didn't feel like a member of the tam and yet nor an administrator. The unsettled feeling was difficult. By the end of the camp, I just wanted an answer whatever it was...I had to move on and prepare for I would be doing. Finally the call cam from Ross Goldin as I was pulling to the drive through window at McDonalds with my children of all places. I would be recommended to the Board of Ed as the new Director of Fine Arts and Music Education. I met with Ross and the Superintendent to begin the transition. We had already planned in January (before diagnosis) using one of my parents time share weeks to go to the Massanutten Resort in the Shenandoah valley of Virginia. I had been looking forward to this trip especially since the surgery. Since it was late August and I had a new job, I was torn about going with so much work to be done. I decided I would go with the family and half way through the week fly home to begin working. Our friend and Sue's supervisor would fly down to be with the family for the emender of the trip. We loved the resort so much that we decided to purchase a week there. We would have our one week vacation for the rest of our lives and pass it on to our children.
The first two and a half years of the job have been great. I'm doing exactly what I want to be doing and I think I am doing a good job thus far.
Throughout this time, my periodic MRI's have been clean and my anxiety about the scans has diminished greatly. Since the surgery I have experienced whatI would learn is sensory seizures. These are episodes of numbness and tingling that go through the left side of my body. As they continued and became more intense, I decided to see a local Neurologist. He prescribed an anti-seizure drug that should help the seizures. The drugs did not seem to be helping. At one of the scans we spoke to the Neuro-oncologist about the issue as we have done in the past. This time he suggested seeing a colleague of his in the city who is a seizure specialist. We made the appointment and went to Manhattan to see him. Dr. Avila increased the medication and in subsequent visits added another drug to help sop the seizure activity. To this date the meds have not worked at all and in fact the seizures have increased in frequency and intensity. Dr. Avila said that there was not much more he could do and that we should seek treatment of the remaining tumor cells. The most recent scan revealed growth in the tumor. We new that this would occur, it was just a matter of when and if the cells would change into something more serious. I had hoped it wouldn't have happened so quickly. There is no way to remove the entire tumor in a brain due to the damage it would cause. In the appointment with the neuro-oncologist, he suggested treating the tumor with either chemotherapy, radiation, or a combination of the two. We discussed the pros and cons. I told the doctor that I really was not interested in radiation because of permanent side effects that may occur. The decision was to start a chemo regimen.
The side effects of this drug, temodar, seem to be minimal compared to others, however everyone's body is different. I now wait for another scan which will be used as a baseline for future scans to find out if the drug is shrinking the tumor. The goal is to shrink it and hopefully stop the seizures. We would then look to come off of the large amounts of seizure meds.
There is certainly anxiety beginning this treatment. I have tried to limit the "pity parties" b staying positive and even changing the attitude to one of anger and determination to beat this tumor into submission. It is difficult to maintain this and there is often sadness and negativity. This is often replaced when hearing stores of others especially children who are going through much worse health situations that I have.
The family and friend support continues to be overwhelming and very helpful. I feel the love and I know the pryers continue and are working.
In February of 2009, Maggie was about to turn 6. Even back then she displayed an obvious intelligence and awareness beyond her years. She knew something was going on and at some pint we had to tell her that Daddy would be having surgery on his head.
Since then, she continues to become more aware of the world, life and death. She developed much anxiety which showed itself in major melt downs and other emotional breakdowns at home. We decided to seek the assistance of a therapist to help her work through her issues. This has made a huge difference and although there is still anxiety about Daddy's health, she has developed some strategies for dealing and communicating them. She also has a huge support network in school and church which has been huge.
So, I guess that's where we are. I thank you for your continued support and feel free to share the blog with others. this is much easier than repeating the story. I am not particularly private about my situation, but I want people t have accurate information rather than rumor.
Until next time...
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