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Birgitta, the Neurologist said I was lucky because I had the option of ceasing treatment and dying sooner from bone marrow failure rather than the Neuro disease which he said would be a much more pleasant way to die.
At least at this point in time I feel as if I have an "out" clause in my contract. If I decide to agree to increase my copper treatment (because my Physician listens and delivers the drug slower with more steroid coverage) and I can tolerate it, then, it's a bonus but if I don't like it...I can just keep on doing what I'm doing until I deteriorate to the point that I don't want any more treatment.
It's the first time I have felt I have had doctors that have given me options that are mine to make without any judgments from them. I feel truly lucky to finally feel comfortable speaking frankly about my end of life decisions with them and not have doctors that pretend that it's not a reality.
Some of this frankness may be because I have some brain damage and i have a little disinhibitition (which I am quite enjoying). For the first time in my life I'm actually saying things that I want to say instead of just thinking them. Kind of like having had a couple of glasses of wine. I'm not being inappropriate or anything...just more open. I even told the cable TV man who tried to sell me a more expensive bundle that the one I had was already too expensive for the heap of rubbish they televised! That felt good!
Ahh...brain damage...got to love it!
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