Patty,
I have re-read this entire string of posts and I think between Brandon's post and your post immediately preceding his, you have your answer. Brandon stated that he and Tony would have done things differently and also stated in a previous post that Tony just wanted to be left alone instead of continuing treatment. You stated that Joe wanted to retain some quality of life. It is not easy for me to suggest this, but as long as you are satisfied that you have explored all the options and gotten enough educated opinions from good doctors, I think perhaps the right thing to do is to honor Joe's request. If chemo and RAD offer little to no hope of arresting this, he shouldn't have to suffer through them. They are hard enough to get through when the cancer is under control and the person is relatively healthy otherwise. It was excruciatingly difficult for Heather and I think it was at least partly because her cancer was still aggressively advancing and her body just didn't have the resources to fight the cancer and cope with the side effects of the chemo at the same time.
One really big thing we did wrong with Heather was to start chemo instead of having the surgery to remove the tumor and repair her spine first. She chose the chemo first because removing the spinal tumor wouldn't have done anything to halt the other tumor(s), the chemo would have to be delayed until she healed from the surgery and because the surgery itself carried the risk of paralysis. BUT, because she didn't have the surgery, the quality of her life was awful. She was totally dependent on others for everything. She needed help just to stand up and use the bedside commode. She couldn't even wipe herself. The morphine controlled the pain in her face, but it never was able to completely control the pain in her spine. She couldn't sit up because it hurt too much. When she sat on the commode, she had to lean against me because holding her head up was excruciatingly painful. It hurt every time we had to take her for a doctor visit, a chemo treatment or a test. That's why she didn't want to go for another opinion. She could barely stand a 30 minute drive. No way could she stand a 2 hr. drive to Johns Hopkins or a 5-6 hr drive to Sloan-Kettering. Then, on top of that, the chemo left her very weak, gave her joint and muscle pain, made her nauseous and some of it gave her diarrhea.
The upshot of all this is that had we known there was virtually no chance of survival, we would have definitely opted for the surgery first so she could have had a better quality of life instead of opting for the chemo first for the possibly of an extended life. Keeping a person alive as long as you can sounds like the right choice. But having to watch a loved one suffer with terrible, debilitating pain day after day makes one question the wisdom of that decision.
And, before some of you jump down my throat, this is in no way an endorsement of suicide, euthanasia or simply giving up. It's just that there are times to keep fighting and there are times to realize that the fight is over.
Patty, my heart truly goes out to you. You are in an exceptionally difficult position. May God (or whatever higher power there may be) grant you the wisdom to help Joe make the right choice.
Rainbows & hugs,
Rosie
