Update
I have not posted for a while. Sometimes it seems like things just seem to stand still and I do too!. It seemed like we did that for a while. Hospice helped us get Orin a lift chair which helps him stand to transfer to the wheel chair. This has been a tremendous help. I dont think he would have been able to get out of his regular recliner any longer. We were able also to purchase a used "rascal" scooter for him to use out side and it has been wonderful as he can get around the yard and be out with us. We even took a day trip to Debbie's for Ray's graduation party a couple weeks ago... the boys loaded us here and of course there were lots of guys there to unload us. We had a great time. Orin was tired when we got home but made the trip ok.
The kids decided to camp at Roaring River this weekend and we decided to go down Friday night (we got a room ) but unfortunately this didnt go as well. Orin had a bad night, we came home Saturday morning. I realized we were done traveling. Even being a nurse, I didnt like being that far away from home with him having problems.
So where are things? I am not sure. A month ago he seemed really bad, then kind of rallied. We have had a little reprieve from the major but still with slow steady decline.
He cant walk at all, but that is probably the decadron that is doing that. and of course with out the decadron he has headaches, dizziness and disorientation.. is that tumors growing or just swelling from the radiation?? I dont know and on hospice they dont "test" anymore.
He has developed a pain in his neck and shoulders that wont go away. Again we arent sure if that is a tumor or if he has an injury from a fall that he took several weeks ago. I think we are going to address that the first of the week with an xray at least.
His appetite remains good, probably the decadron helps with that. He has not lost weight. The down side of that is that he is difficult for me to help because of his size. We have to have help for him to go in and out of the house and will soon need it from chair to wheelchair and bed. He is not in a hospital bed yet although we have discussed it and know that it is coming.
He is having a lot of problems with his bladder of late. Is that normal aging issues, end stage issues or another tumor? again we arent sure. The Dr is doing what he can to treat the symptoms without being invasive
In the past two weeks he has started having swelling in his feet. This is a new symptom altho the neuropathy (lack of feeling) actually started several months ago. I dont know if the two are related or not. I have suspected that there is a tumor regrowing down near the original site which if so could be pressing on a nerve that would affect the legs but thats just my thinking..( he complains of tailbone pain some and that was an original symptom) again they wont "test" so we probably will never really know and it doesnt really matter anyway.
June was here last week and she and Orin had a great 2 day visit while I worked. It is such a joy to see them enjoy each other! They are a true example of what a brother and sister should be to each other.
I have cut my work hours back to three days a week. That has helped a lot with giving me time to keep things done.
Orin's spirits are really pretty good considering. He hates not being able to do things. But he is getting better at instructing me. The other day I learned how to take the spark plug out of the tiller!! His biggest burden is having to ride in the car while I drive. But he is very patient and I haven't killed us yet! We try to keep our sense of humor and actually had to laugh at ourselves yesterday... an old man with a brain tumor ..an old lady on the verge of alzehimers.. in the hills of missouri WITHOUT a map... now thats a SCARY thing... its really a miracle we made it home at all!
We are living each day in the Grace of the Living God. We love each other deeply. We laugh as much as we can. We cry when we need to. Though this valley seems long we both know that it is really but a short distance to the other side where we are assured eternity in green pastures with our Savior. We wouldnt have it any other way. Blessings Kathy
The kids decided to camp at Roaring River this weekend and we decided to go down Friday night (we got a room ) but unfortunately this didnt go as well. Orin had a bad night, we came home Saturday morning. I realized we were done traveling. Even being a nurse, I didnt like being that far away from home with him having problems.
So where are things? I am not sure. A month ago he seemed really bad, then kind of rallied. We have had a little reprieve from the major but still with slow steady decline.
He cant walk at all, but that is probably the decadron that is doing that. and of course with out the decadron he has headaches, dizziness and disorientation.. is that tumors growing or just swelling from the radiation?? I dont know and on hospice they dont "test" anymore.
He has developed a pain in his neck and shoulders that wont go away. Again we arent sure if that is a tumor or if he has an injury from a fall that he took several weeks ago. I think we are going to address that the first of the week with an xray at least.
His appetite remains good, probably the decadron helps with that. He has not lost weight. The down side of that is that he is difficult for me to help because of his size. We have to have help for him to go in and out of the house and will soon need it from chair to wheelchair and bed. He is not in a hospital bed yet although we have discussed it and know that it is coming.
He is having a lot of problems with his bladder of late. Is that normal aging issues, end stage issues or another tumor? again we arent sure. The Dr is doing what he can to treat the symptoms without being invasive
In the past two weeks he has started having swelling in his feet. This is a new symptom altho the neuropathy (lack of feeling) actually started several months ago. I dont know if the two are related or not. I have suspected that there is a tumor regrowing down near the original site which if so could be pressing on a nerve that would affect the legs but thats just my thinking..( he complains of tailbone pain some and that was an original symptom) again they wont "test" so we probably will never really know and it doesnt really matter anyway.
June was here last week and she and Orin had a great 2 day visit while I worked. It is such a joy to see them enjoy each other! They are a true example of what a brother and sister should be to each other.
I have cut my work hours back to three days a week. That has helped a lot with giving me time to keep things done.
Orin's spirits are really pretty good considering. He hates not being able to do things. But he is getting better at instructing me. The other day I learned how to take the spark plug out of the tiller!! His biggest burden is having to ride in the car while I drive. But he is very patient and I haven't killed us yet! We try to keep our sense of humor and actually had to laugh at ourselves yesterday... an old man with a brain tumor ..an old lady on the verge of alzehimers.. in the hills of missouri WITHOUT a map... now thats a SCARY thing... its really a miracle we made it home at all!
We are living each day in the Grace of the Living God. We love each other deeply. We laugh as much as we can. We cry when we need to. Though this valley seems long we both know that it is really but a short distance to the other side where we are assured eternity in green pastures with our Savior. We wouldnt have it any other way. Blessings Kathy
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