Ok... Here is the latest.
For those of you who don't know, I have a pituitary tumor and I also have masses in both sides of my chest that will have to be surgically removed.
The endocrinologist here has not seen may of these tumors and that is understandable. According to the MD Anderson site, only 3 in 1,000,000 people per year get these kinds of tumors. Of those that DO get this tumor, I somehow have fallen into the even smaller group that have the kind to make me develop masses in my chest. None of the doctors I have seen so far, have ever seen anything like this.
No offense to the Doctors in Amarillo, but I want the best of the best. I think I will find something close to that at MD Anderson.
We spoke to someone from MDA on Friday and she let us know that the surgical team had reviewed my stuff and was passing that info on to the endocrinology group. We are supposed to hear from MDA again tomorrow to see when our appointment time is.
If you are reading this, you need to know that God is good in many ways. It it from Christ Jesus that my family gets strength and courage to fight this and it is Christ alone who is worthy of getting the glory for the good things that happen.
I can not wait to see how God works this out for my family and what good things He has in store for us.
Sunday, March 29, 2009
Sunday, March 15, 2009
New Post - 03/15/09
Sorry that it has been so long since the last post. It it not because I haven't wanted to post, but there has been very little to post about...
Dad has been, in my opinion, has been slowly improving - at least his mood has. I notice it when I talk to him on the phone. He is more cheerful and upbeat. His short term memory loss still seems to be present, but I think it is improving.
Dawn is going to go to radiation with him on Wednesday the 18th and talk to Dr. McCormick to get an update. I want to also know when dad will have another MRI so we can tell if the tumor has shrunk.
When I know more, I will post again.
Continue to pray that this radiation does what it is supposed to do and totally gets rid of these tumors. Also pray that whatever depression he is feeling is replaced by contentment and peace that only Christ can give.
*******************************************************
I know you are here for updates on Dad and I appreciate that.
I do have something else that I would like you to lift up in prayer.
Me. Around Christmas '08, I discovered a very sore spot in my chest. I went to our family doc to see what the heck was up. We watched it for a while and it continued to get bigger. My Doc referred me a couple of weeks ago (about the time we put dad in the hospital) to a specialist. He did all kinds of blood work, a bone density scan, and some other tests.
Long story made short is this. The blood work and the MRI that I have show that I have a tumor in my brain on my pituitary gland. I go to the Dr. tomorrow for a more throughout discussion of what we are going to do about this tumor in my head. During the conversation I had with him last week, he indicated that he did not want to look at surgery quite yet, so we will likely be perusing some meds that he said can be effective in shrinking this kind of tumor.
I have a surgery consult later this month about the mass in my chest. I don't know a bunch about it yet.
I have told Dawn about my issues, but not my dad. If you see and/or talk to him, please do not mention this to him. He has enough on him plate right now as it is and I don't want to tell him until I have something concrete to tell him.
I'm not sure what to say next....... Pray for us.
Todd
Dad has been, in my opinion, has been slowly improving - at least his mood has. I notice it when I talk to him on the phone. He is more cheerful and upbeat. His short term memory loss still seems to be present, but I think it is improving.
Dawn is going to go to radiation with him on Wednesday the 18th and talk to Dr. McCormick to get an update. I want to also know when dad will have another MRI so we can tell if the tumor has shrunk.
When I know more, I will post again.
Continue to pray that this radiation does what it is supposed to do and totally gets rid of these tumors. Also pray that whatever depression he is feeling is replaced by contentment and peace that only Christ can give.
*******************************************************
I know you are here for updates on Dad and I appreciate that.
I do have something else that I would like you to lift up in prayer.
Me. Around Christmas '08, I discovered a very sore spot in my chest. I went to our family doc to see what the heck was up. We watched it for a while and it continued to get bigger. My Doc referred me a couple of weeks ago (about the time we put dad in the hospital) to a specialist. He did all kinds of blood work, a bone density scan, and some other tests.
Long story made short is this. The blood work and the MRI that I have show that I have a tumor in my brain on my pituitary gland. I go to the Dr. tomorrow for a more throughout discussion of what we are going to do about this tumor in my head. During the conversation I had with him last week, he indicated that he did not want to look at surgery quite yet, so we will likely be perusing some meds that he said can be effective in shrinking this kind of tumor.
I have a surgery consult later this month about the mass in my chest. I don't know a bunch about it yet.
I have told Dawn about my issues, but not my dad. If you see and/or talk to him, please do not mention this to him. He has enough on him plate right now as it is and I don't want to tell him until I have something concrete to tell him.
I'm not sure what to say next....... Pray for us.
Todd
Wednesday, February 25, 2009
02/25 - Noon
Praise God!
The pet scan came back all clear - no tumors anywhere anywhere else outside of the brain!
They have already started the super-duper radiation on him and it is, I guess, going well.
He is at home now with some assistance from GoodCare Home services. They have been awesome!
I'm not sure what else to report. If you can think of questions, please let me know.
I will blog again when I know more.
Todd
The pet scan came back all clear - no tumors anywhere anywhere else outside of the brain!
They have already started the super-duper radiation on him and it is, I guess, going well.
He is at home now with some assistance from GoodCare Home services. They have been awesome!
I'm not sure what else to report. If you can think of questions, please let me know.
I will blog again when I know more.
Todd
Tuesday, February 24, 2009
2/24 - 9:00am
I just talked to the Nurse from Harrington Cancer Center.
The new MRI they did was a stronger MRI than the one that they had previously done last week. This new scan shows that there are 3 tumors in Roger's brain. Lora (the nurse) indicated that this was good news because apparently it is easier to eliminate a small tumor than it is a larger one. She said that Dr. McCormick was still confident that he could rid dad of these.
The PET scan that he had yesterday that will show any kind of tumors anywhere else in the body should be back today some time after noon. She said she will call my cell phone to let me know those results too.
My fear is that if there are three in the brain, then are there more elsewhere. I already had that fear, but now that we are dealing with multiple tumors in the brain, I am even more nervous.
Every prayer you say is precious to Dawn and I - and to Roger also.
I appreciate every one of you who read this and I know dad does too.
Todd
The new MRI they did was a stronger MRI than the one that they had previously done last week. This new scan shows that there are 3 tumors in Roger's brain. Lora (the nurse) indicated that this was good news because apparently it is easier to eliminate a small tumor than it is a larger one. She said that Dr. McCormick was still confident that he could rid dad of these.
The PET scan that he had yesterday that will show any kind of tumors anywhere else in the body should be back today some time after noon. She said she will call my cell phone to let me know those results too.
My fear is that if there are three in the brain, then are there more elsewhere. I already had that fear, but now that we are dealing with multiple tumors in the brain, I am even more nervous.
Every prayer you say is precious to Dawn and I - and to Roger also.
I appreciate every one of you who read this and I know dad does too.
Todd
Monday, February 23, 2009
2/23 - 9:30pm
So... It has been a quiet couple of days, and I am so glad for it.
Dad has been doing some generalized radiation on his head to slow the growth of this tumor. They are working on his super duper fancy-shmanchy radiation that will only target the tumor, but while we are waiting on the physicists to get it all set up, we are doing what we can to slow this damn thing down.
So far dad is taking it very well - no ill side effects. I have not noticed much difference in his memory, but every time I talked to him today, he seemed to be better than I remember him in several weeks. Thank you, God.
Today dad had both a PET scan and another MRI. These were to make sure that this tumor we know about in his brain is the only one we are dealing with. If it is not, then Dan and I have some quite difficult decisions to make.
Dad is supposed to go home on Tuesday (tomorrow). We have some help coming in for the mornings and we will take him Monday-Friday to radiation.
I don't know what else to say until we find out what the MRI and PET scan show.
Please keep praying.
Todd
Dad has been doing some generalized radiation on his head to slow the growth of this tumor. They are working on his super duper fancy-shmanchy radiation that will only target the tumor, but while we are waiting on the physicists to get it all set up, we are doing what we can to slow this damn thing down.
So far dad is taking it very well - no ill side effects. I have not noticed much difference in his memory, but every time I talked to him today, he seemed to be better than I remember him in several weeks. Thank you, God.
Today dad had both a PET scan and another MRI. These were to make sure that this tumor we know about in his brain is the only one we are dealing with. If it is not, then Dan and I have some quite difficult decisions to make.
Dad is supposed to go home on Tuesday (tomorrow). We have some help coming in for the mornings and we will take him Monday-Friday to radiation.
I don't know what else to say until we find out what the MRI and PET scan show.
Please keep praying.
Todd
Thursday, February 19, 2009
2/19 - 11pm
I can not speak for dawn, but this has been undoubtedly been the most stressful day of my life.
We started the day early at 8:30 meeting with Rich Jones and Dr Cone. They showed Casey and I the scans they had done of the tumor and the problems with it. They explained why they could not operate on it and gave us their opinions on why they felt like radiation might not be a viable option for dad.
After meeting with them we felt that we needed to be considering hospice or other options, to make dad comfortable and to prepare ourselves for dad to maybe not be with us in a few months. It was a low of lows... But considering that dad had told us that he did not want to do chemo again, we felt like that probably included the idea of radiation. The reason he did not want to do chemo, was because of how terrible it made him feel. We could only deduce that he would not want to do radiation if it was going to cause the same side effects.
While trying to make plans with hospice and make plans about what kind of care we were going to be able provide for dad, Dr Ferrero showed up to talk to us. We had decided to DO hospice. We were ready to go. The nice lady from hospice was ready to call a transport to get dad over to hospice. But like I said... Dr. Ferrero entered the picture.
Dr. Ferrero is from Columba. That is not a bad thing. Where it became a problem was first of all the cultural differnces and second, the language barrier. Instead of coming to us and letting us know that he had an option that we might want to consider for dad, he came to us telling us he was NOT going to sign any odrers that would allow dad to go into Hospice care. He was abrasive, arrogant and hostile. This did not set well with any of us and caused quite the stir and quite the scene in the waiting area of the 6th floor at BSA.
So, now the situation is this. Dr Ferrero is forcing us to listen to him in broken english talk about something that he can not find the appropriate english words for and telling us that he will not sign papers releasing dad into the car of hospice. He tells us that he has scheduled an appointment for dad to have a consultation with the radiological oncologist on next Tuesday. One of the big problems with that is that dad is now being discharged from the hospital and is in need of constant care - which hospice was going to provide for 5 days while we got things settled. But now if we chose to go with the option of meeting with oncology, hospice will not take us because we are seeking treatment. But we can not get into hospice because Dr. Ferrero will not sign the $%#$ papers. Rock, meet hard place.... Hard place, meet Mr Rock.
My loving wife. Lord, I love her. She asks Dr. Ferrero why we have to wait till Tuesday for a consult with the radiological oncologist... Well... turns out, the is out of town. But my loving bride suggests that Dr Ferrero use a new device called a "telephone" to find a different radiological oncologist here in Amarilo to meet with us so we don't have to wait till Tuesday. Between this and Casey crawling his case and me chosing my words and expletives not very wisely, Dr. Ferrero found us a new radiological oncologist.
New radiological oncologist=Dr McCormick at Harrington Cancer Center.
Dr. McCormick has a fancy radiation machine with a really long name that I do not remember. It makes a very precise beam hit the tumor and has no ill side effects (like conventional radiation).
There is more to it, but the quick verson is this: Dawn and I think that because it does not have the crappy side effects like chemo does, we want to try it to give dad a chance. There are some different tests that we are going to do to see if there are more tumors in other places in the body and brain, but with the information we have today, we believe this is the best option for dad and would honor his wishes.
Please please please keep praying for wisdom and strength.
Isa 43:2 - When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.
We started the day early at 8:30 meeting with Rich Jones and Dr Cone. They showed Casey and I the scans they had done of the tumor and the problems with it. They explained why they could not operate on it and gave us their opinions on why they felt like radiation might not be a viable option for dad.
After meeting with them we felt that we needed to be considering hospice or other options, to make dad comfortable and to prepare ourselves for dad to maybe not be with us in a few months. It was a low of lows... But considering that dad had told us that he did not want to do chemo again, we felt like that probably included the idea of radiation. The reason he did not want to do chemo, was because of how terrible it made him feel. We could only deduce that he would not want to do radiation if it was going to cause the same side effects.
While trying to make plans with hospice and make plans about what kind of care we were going to be able provide for dad, Dr Ferrero showed up to talk to us. We had decided to DO hospice. We were ready to go. The nice lady from hospice was ready to call a transport to get dad over to hospice. But like I said... Dr. Ferrero entered the picture.
Dr. Ferrero is from Columba. That is not a bad thing. Where it became a problem was first of all the cultural differnces and second, the language barrier. Instead of coming to us and letting us know that he had an option that we might want to consider for dad, he came to us telling us he was NOT going to sign any odrers that would allow dad to go into Hospice care. He was abrasive, arrogant and hostile. This did not set well with any of us and caused quite the stir and quite the scene in the waiting area of the 6th floor at BSA.
So, now the situation is this. Dr Ferrero is forcing us to listen to him in broken english talk about something that he can not find the appropriate english words for and telling us that he will not sign papers releasing dad into the car of hospice. He tells us that he has scheduled an appointment for dad to have a consultation with the radiological oncologist on next Tuesday. One of the big problems with that is that dad is now being discharged from the hospital and is in need of constant care - which hospice was going to provide for 5 days while we got things settled. But now if we chose to go with the option of meeting with oncology, hospice will not take us because we are seeking treatment. But we can not get into hospice because Dr. Ferrero will not sign the $%#$ papers. Rock, meet hard place.... Hard place, meet Mr Rock.
My loving wife. Lord, I love her. She asks Dr. Ferrero why we have to wait till Tuesday for a consult with the radiological oncologist... Well... turns out, the is out of town. But my loving bride suggests that Dr Ferrero use a new device called a "telephone" to find a different radiological oncologist here in Amarilo to meet with us so we don't have to wait till Tuesday. Between this and Casey crawling his case and me chosing my words and expletives not very wisely, Dr. Ferrero found us a new radiological oncologist.
New radiological oncologist=Dr McCormick at Harrington Cancer Center.
Dr. McCormick has a fancy radiation machine with a really long name that I do not remember. It makes a very precise beam hit the tumor and has no ill side effects (like conventional radiation).
There is more to it, but the quick verson is this: Dawn and I think that because it does not have the crappy side effects like chemo does, we want to try it to give dad a chance. There are some different tests that we are going to do to see if there are more tumors in other places in the body and brain, but with the information we have today, we believe this is the best option for dad and would honor his wishes.
Please please please keep praying for wisdom and strength.
Isa 43:2 - When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.
I will be with you;Wednesday, February 18, 2009
2/18 - 9:30pm
Dawn and I spoke to Dr. Cone's office today and found out that the tumor is not operable.
Apparently radiation is the next best option.
Dawn and I are going to meet with Dr. Cone and Rich Jones on Thursday and find out what kind of time that will give dad and what kind of success rate they think it will have.
Dawn and I both are pretty stressed out right now and don't really know what to do. I guess we'll find out more tomorrow.
Please keep praying.
Apparently radiation is the next best option.
Dawn and I are going to meet with Dr. Cone and Rich Jones on Thursday and find out what kind of time that will give dad and what kind of success rate they think it will have.
Dawn and I both are pretty stressed out right now and don't really know what to do. I guess we'll find out more tomorrow.
Please keep praying.
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