Here is a very long update...
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|Sat, 11-15-2003 - 10:47am|
We took him to the ER and they rushed us right back. It was awful and terrifying. He was admitted to Vanderbilt and put on massive steriods through an IV. The reason he lost use of his left leg is the fifth tumor-the newest one. It is a really aggressive growing tumor and it had grown from the right side of the brain to the left. He has severe swelling of his brain and edema. The steriods have taken some of the pressure off and he has regained use of his leg. He is eating so much from the steriods that nothing fits him anymore.
His neurologist gave us some options-try a new protocal at Duke, go on a chemo while he was in the hospital or do nothing. We decided on the new chemo which has a 60-70 percent chance of not working. It is also a temporary measure.
We had a long talk about the future with the doctor. He told Devin that there would come a time when he would recommend a DNR for Devin and recommend that no chemo be taken. He said that he did not know when the time would come-a few weeks or a few months. It was a really good, really sensitive speech. He wants Devin to think about a DNR while his thinking is clear.
We talked about it and Devin wants to fight. He thinks a DNR is giving up and I can't convince him that there are things worse than death. I have asked him to attend Living with Dying at Gilda's and he won't. I have asked him to talk to somebody that has had to make decisions about end of life issues and he won't. I am just going to try to give it to God and let it go. I worry about it constantly.
My gut feeling is that he is not going to make it much longer. We have had to get a beside potty because he is having issues knowing when he needs to pee. We have to dress him and he is losing so much diginity. His mind is clear, though and his humor has turned bitter. I know we don't know God's timing but I think he will be gone by January. I just don't want him to suffer and he is. This has been the most painful time of my life. People keep asking me how I am doing and I have no blasted idea. Life has became a series of days and hours. I am so happy he can walk again that the rest of it is in the back of my mind. I knew when I married him that we would not grow old together but I was so naive. I thought he would suffer a tad, we would learn our spiritual lessons and life would go on. I had no idea of the pain it would bring and how much he would suffer. I am so angry and so sad and so bitter. I don't see any spiritual lessons in this suffering and agony. None.