[cancer] Talking about dying and death

Yesterday, Lisa Costello, Dad and I met with my palliative care doctor. There was some discussion of my sleep issues, now essentially gone because I am off the Regorafenib. We also told them about our efforts at clinical trials. They were less interested in the medical details than in how I was experiencing the process. They talked about people who sometimes had better outcomes without entering chemo or trials at all. I pointed out that I had to be doing something or I’d go nuts.

Also had a long discussion of hospice options and how the place and manner of my death would impact [info]the_child. They provided a list of names of local hospice providers they held in high regard. Naturally, when I checked later, none of these providers were in-network for my health insurance.

We also talked about the difficulty of predicting life expectancy in my situation. The palliative care doctor said there are two main factors in their experience.

The completely unpredictable factor is when and how some catastrophic event occurs. For example, organ failure, or an opportunistic infection. There’s no way to anticipate the timing of such an event, though once it happens, I will likely pass very quickly.

The more predictable factor is rate of change, in effect. As they put it, if I am seeing significant changes in health or functionality that take place over the course of months, I have months yet to live. If I am seeing significant changes over the course of weeks, I have weeks yet to live. When the changes take place over the course of days, I have days yet to live.

Where these two factors intersect, clearly enough, is that unpredictable catastrophic event changing my health literally overnight, or over a day or two. At that point, my remaining life is likely measured in days.

This was both fascinating and sobering, and also one of the most useful descriptions of the dying process I have ever encountered. It neither gives me hope or incites despair, but it does grant me some perspective.

The palliative care doctor wants to continue to see me as I progress through the clinical trials process, every two or three months. I told them we would keep them informed. Our current followups are to check my hospice benefits with my health insurance carrier, figure out which Portland area facilities are in-network, and schedule some site visits. I’ll schedule another visit with my palliative care doctor once we know more about my clinical trial schedule.

5 thoughts on “[cancer] Talking about dying and death

  1. have you decided if you are going to stay home or go to a hospice center?

    1. Jay says:

      It’s not a simple question, unfortunately.

  2. Laurie Mann says:

    I think it’s also a different process for people due to their age. I think a lot of Jim’s uncle who was diagnosed with pancreatic cancer in August 2010 and died in October 2012. He was in his mid-80s. While he tolerated chemo pretty well the first course, he had trouble with falling. When the cancer reoccured in 2012, going back on chemo made the falling much worse. He had a head injury from a fall, was semi-comotose for about week there after and died in the hospital’s hospice unit. I think his death certificate said he died from heart disease and pneumonia – I don’t think the cancer was even mentioned.

    1. Jay says:

      My palliative care doctor says that hardly anyone ever has cancer as a direct cause of death. It’s almost always something else as a collateral complication

  3. pelican says:

    How We Die by Sherman Nuland is a good quick book that talks about the biological processes that go on in the end stages of a number of common diseases. You might not have the time/head space to read it, but it might be worthwhile for one of your support people to read and give you an executive summary? Good practical info to help think through your wishes for care?

    I’m sad for you that there’s so much else you have to deal with right now- sending you best wishes for some quiet space to just enjoy the love of your friends and family.

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