Heading into the next stage

The beginning of this week has been crowded with doctors' appointments. First, on Monday we met with the oncologist and all agreed that the FOLFOX hasn't helped, and has, in fact, left me worse off. To my immense relief I'm no longer on the FOLFOX or any chemo. We discussed Clinical Trials (as far as I can find out, I'm not eligible for any) and further types of chemo. Dr. Nickerson is against them, partly because they're a third line of defense and likely to be more debilitating and less helpful than what we've done, and partly because much of what's dragging me down now is the blockage between upper and lower GI tract, which wouldn't be helped by a new chemo.

Because of this, we decided it was time for us to call in Hospice. It's a funny feeling. It means that you can no longer hang onto the tiny bit of denial that says, "It's been great so far. Why can't it continue indefinitely?" Indefinitely becomes bounded, though of course it always was.

The Hospice nurse came in yesterday and turned out to be both warm and efficient. We don't need and may never need the full range of services they offer, everything from getting me a hospital bed if and when I need one to Reiki. I'm going for the massages, I think.
It actually feels good to have this in place, like having a guide and well-set-up catering service when you're going on a tour to an unknown place.

The other problem we talked about with Dr. Nickerson was the intestinal blockage and its effects, which are fairly constant nausea, daily vomiting, and regular constipation (if constipation can ever be regular). He recommended a tube into my stomach to drain off what doesn't get through to the intestines, and set us up to see the surgeon, who agreed.

But yesterday we saw the GI doctor who said that he didn't recommend this, that various mechanical problems would make it risky for infection. What he thought should be done is a two-tube solution, with one going into the stomach to drain it, and another going into the intestine below the blockage as a feeding tube. The three doctors (oncologist, surgeon, gastroenterologist) will get together some time in the next few days to decide what's best.

What they won't give me is any kind of formula that balances quality and quantity of time. I find myself looking at their body language and where their eyes go for some kind of hint. Meanwhile we wait.

I wish I weren't writing this. I've read several blogs where people with cancer get to this point and decide to stop blogging. I want to continue as long as I can, though I certainly wouldn't blame anyone who stopped reading because it's not likely to be as upbeat as it's been. But I'm curious. I want to record what this last stage is like and share it with anyone who has ever wondered....