Tough News
Last night and today have been very difficult. We received the MRI report last night but I wanted to make double sure we understood everything before I told the world. The edema from radiation is considered "rebound edema" that is where the steroids are stopped too early and the edema "flares" and can become very bad. Mom's is very extensive involving over more than a 1/4 of her brain. The oncologist increased her steroids today back up to her max dosage of 12mg/day. He said that we really needed to get this under control because that was what was causing all her symptoms.
The MRI entailed even more bad news in the fact that even though we have cut out the tumor, given it a "life time dose" of radiation, by giving her the best chemo drug available, it has tripled in size. Usually they like to see that the tumor has shrunk or at least become stagnate in size. The doctor said that it was very concerning that it is such an aggressive tumor. He repeated his saying that "to do well in the end, you have to do well in the beginning" and this is not good.
He asked that I call him tonight so we could discuss all this further. When I talked with him this evening he talked a lot about how he will guide his care from here on out. He said that everything would be based on how well she is interacting with us and her quality of life. He said that when the "light was on and no one was home" anymore it would be time to look at hospice and comfort care. He suggested that we begin to interview companies and nurses for this purpose, and decide whether we wanted home hospice or a hospice facility. He said that we have a short period of time left and all this could begin around the first week in February. He promised that he would tell us when it was time if we were not able to see it ourselves. We still want a miracle and are continuing to pray for this, but we definitely do not want mom to suffer or go through anything unnecessary, especially if it is because we can not deal with reality.
I think we all feel that at this point we were more aggressive than what most people might have recommended and it did very little good. She has had cognitive deficits from the very beginning after her surgery and has never fully recovered to a point where any of us would want to "live like that". I think at this point, surgery would be futile since it is such an aggressive tumor. He did mention two other drugs we might try after we get the edema under better control. The drugs can cause a lot of nausea and vomiting and severe fatigue. We will be researching these drugs so we can make a decision soon.
We are all very distraught at this time and need your prayers not only for mom, but for us as well. Mom has been one of the finest ladies I have ever known. She has always been there for us and loved us through everything. Now, we want to return this great love to her in the best way possible. As time marches on in the next several weeks, she and I will be home more and more. If you would like to come and visit, please just let me know so I can make sure we are available to you. I make no promises to have a clean house or tea and crumpets to offer, but you are welcome.
Last night and today have been very difficult. We received the MRI report last night but I wanted to make double sure we understood everything before I told the world. The edema from radiation is considered "rebound edema" that is where the steroids are stopped too early and the edema "flares" and can become very bad. Mom's is very extensive involving over more than a 1/4 of her brain. The oncologist increased her steroids today back up to her max dosage of 12mg/day. He said that we really needed to get this under control because that was what was causing all her symptoms.
The MRI entailed even more bad news in the fact that even though we have cut out the tumor, given it a "life time dose" of radiation, by giving her the best chemo drug available, it has tripled in size. Usually they like to see that the tumor has shrunk or at least become stagnate in size. The doctor said that it was very concerning that it is such an aggressive tumor. He repeated his saying that "to do well in the end, you have to do well in the beginning" and this is not good.
He asked that I call him tonight so we could discuss all this further. When I talked with him this evening he talked a lot about how he will guide his care from here on out. He said that everything would be based on how well she is interacting with us and her quality of life. He said that when the "light was on and no one was home" anymore it would be time to look at hospice and comfort care. He suggested that we begin to interview companies and nurses for this purpose, and decide whether we wanted home hospice or a hospice facility. He said that we have a short period of time left and all this could begin around the first week in February. He promised that he would tell us when it was time if we were not able to see it ourselves. We still want a miracle and are continuing to pray for this, but we definitely do not want mom to suffer or go through anything unnecessary, especially if it is because we can not deal with reality.
I think we all feel that at this point we were more aggressive than what most people might have recommended and it did very little good. She has had cognitive deficits from the very beginning after her surgery and has never fully recovered to a point where any of us would want to "live like that". I think at this point, surgery would be futile since it is such an aggressive tumor. He did mention two other drugs we might try after we get the edema under better control. The drugs can cause a lot of nausea and vomiting and severe fatigue. We will be researching these drugs so we can make a decision soon.
We are all very distraught at this time and need your prayers not only for mom, but for us as well. Mom has been one of the finest ladies I have ever known. She has always been there for us and loved us through everything. Now, we want to return this great love to her in the best way possible. As time marches on in the next several weeks, she and I will be home more and more. If you would like to come and visit, please just let me know so I can make sure we are available to you. I make no promises to have a clean house or tea and crumpets to offer, but you are welcome.
posted by Angie at 11:27 PM
0 Comments:
Post a Comment
<< Home