Jay Lake (jaylake) wrote,
Jay Lake
jaylake

[cancer] Meeting with the palliative care specialist

Yesterday, Dad, Lisa Costello and I met with the palliative care specialist. We spoke for the better part of an hour, much of it concerning my medical history and treatment priorities. They gave us a form entitled Physician's Orders for Life-Sustaining Treatments (POLST) which details more of my end of life decisions in the form of a portable medical order. We talked about the difficulty of planning ahead for end-of-life issues given the myriad possible complications. The doctor made the point that I was just as likely to die of one or another of those complications rather than liver failure -- infection or pneumonia, for example. We had not realized this before now. Their point was that detailed advance planning was unlikely to be particularly fruitful until we know more about the course of my disease and the processes of my decline.

We also talked about the processes of liver failure. The doctor explained that unlike people with primary liver cancer, who typically already have seriously compromised liver function, people such as me with metastatic disease in the liver often have a useful amount of liver function even well into the late stages of illness. The tumor growth isn't replacing liver cells, as such, so much as squeezing them aside. The liver is fairly elastic, in several senses of that term, and can continue to function even with substantial tumor growth. I had not known this. The implication for me is that I'm not likely to see significant liver failure complications until very near the end of my terminal decline. At that point, they will be rapid and severe.

Another topic we discussed was my sleeplessness. I was prescribed trazodone, which I took last night. So far, I am not sure what to think. I slept oddly and woke up groggy (which is unusual for me), but I got an extra 90 minutes or so of sleep compared to my recent baseline. It was less satisfying, however. We shall see.

I am going back to the palliative care specialist in mid-August. That will be after the next scan, where the effectiveness of my Regorafenib treatment can be evaluated, and we'll likely have a somewhat clearer picture of my expected survival time.

Tags: cancer, family, health, personal, radiantlisa
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