OK....my father was diagnosed 4/20/2007 with GBM IV Left temporal lobe. He was operated on with nearly a 100% perfection rate. He did radiation and temodar. This past August my father had his last Temodar treatment. It was time for him to start the next round of Chemo and he had just started feeling better and did not want to take it and go back to feeling ill again.
Please bare with me and hear me out......
When my father got sick (he is 65) he made me (an only child and primary caregiver) promise to never just allow him to "exist". That is just not him. Once my father became ill his life went down the tube. The amount of doctors that he had to see on a weekly bases was unbelievable! You need a doctor for this and a doctor for that and each doctor was just writting out prescriptions for this that and the other thing and it got to the point that he literally almost DIED! I found him laying on the side of his driveway one morning and thought that he was dead. It turned out that his General Doctor gave him 2 prescriptions that interacted with a drug that another doctor gave him and it depleted his sodium level. We knew that something was wrong and took him to another Dr. for bloodwork but no one ever checked his Sodium level, which for anyone who knows about sodium levels his was at 114 when he was rushed to the E.R. and spent 4 days in ICU.
So anyway. We spent an entire summer at every doctor for every test and my father had had enough. He went for his final MRI in September which came back No Change.
That was the last time that my father has been to a Dr. We went out to Dinner together, to a very nice restaurant this past Friday evening. He is better today than he was this entire past summer. He is however on 2mg's of Decadron daily. He became very ill in the end of Nov. and into December. We had some left over and 2 refills left of it. He refused to go to a Dr. (nobody tells my father what to do--nicest man you would ever want to meet, but at the same time he is who he is). So we gave him the smallest amount of Decadron (1mg).
That 1mg of Decadron turned my father right around he has been on it ever since and is doing sooooo well. He still refuses to go to a doctor. The doctors are either "all or nothing". They just can't see you without this test and that test and this doctor and that. I do not blame my father for one minute for not wanting to live out his days in peace!
I do notice however that he is slowing down a bit, and that his left shoulder is weakening. But he is really doing so much better than what the doctors suggested, and as I said, so much better than he was just this summer.
My reason for writting is....what can I expect from here? Has anyone had a similar circumstance? I know that this is not the norm...but we can't be the only ones refusing treatment. Please be honest and give me some insight.
Thank you for your time reading this long....long...message.
~Joann
*I did not proof read this because I would have changed half of what I wrote!