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Thanks everyone, and update
Thanks again for all your kind messages and your encouragement. My breathing continues to worsten, oxygen is at max, making me fear I don't have many days left. Strangely, other than not being able to breathe, I feel just fine, which certainly wasn't true of the past several months. I'm terribly grateful for that, because I felt so bad for so long.
Per Hospice suggestion, I've started taking small doses of methodone at night to get my body used to this narcotic, as this is what my hubby will use to "ease me on my way" when I really begin suffocating. At least , that's what I've asked him to do. It is a great relief to me to have this drug on hand, my biggest fear has always been that fish-out-of-water suffocation death. I nearly had it a couple months ago and it is an exquisite torture.
I'm still taking the hormonals. My conservative, non-breast-cancer-specialist onc here (only one available to me in Hawaii) refused to prescribe xeloda/tykerb for me because I progressed on it in the past, although I explained it was the only thing that ever induced a response in my cancer and since it is oral therapy I wouldn't have to leave hospice. My good onc in OR cannot prescribe in Hawaii so I don't know where that leaves me. I've asked if there is a way for her to prescribe the drugs thru ProCare pharmacy in OR and they would ship them to me here, but I don't know what the medical ethics involved are. It is hard, knowing the true expert on metastatic bc in OR would prescribe something but can't, while my generalist, in-way-over-his-head onc here could prescribe it but won't.
My onc here suggests abraxane instead but I can hardly travel in the car anymore cuz of breathing problem. Not sure what to do now.
Thanks all of you for listening.
Theresa
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