What a trigger it always is when a public figure battles cancer, especially when the cancer wins. It hurts less and less each year (each month even, moving at a fast pace as I approach five years after my loss), I'm less and less called to shout out to their partners, to cry in the streets, to feel it in my own bones that there will be another small emptiness somewhere in the world soon.
But I still feel it, and I still want to respond as an authority — to laugh like a disrespectful teenager when a newscaster asks, as above (earlier today, before she passed): "What does that mean, to say that 'further treatment would be unproductive?'" It means they're dying, you simpleton. Did you know, anchorman, that people are meant to age, to lose hair, to wrinkle? But we need an explanation. It's not enough to say, "they are dying," or as I would tell my child, "their body is starting to slow down and doesn't work as well any more." It's got to be concrete, physical, specific, and not use any trigger words like "death" or "dying." That's not enough: nature's not enough. We have to explain, and understand, and take it one step at a time.
So Dr. Gupta talks about fluids building up and so forth.
Why is it not enough to say, as they have, "she's at home among family and friends"? That would be enough to make me totally jealous, of both John Edwards (as myself) and of her (in the role of Gavin).
I didn't know any better either, though I wasn't on the news, and my crazy hair had nothing to do with that. I remember the last hospitalization — the week he spent in the CICU before "we" were sent to an inpatient hospice. Here are some ways the ICU doctors and nurses tried to explain dying to me in their own concrete, observable, ways:
- Yesterday afternoon he lost the ability to walk over to the toilet in his room [it was ten feet from the bed]. Sudden loss of strength is a sign that someone is dying.
- He's getting discouraged.
- From him: "Just get me out of here. Anything, just to leave here."
- His body has been fighting really hard for a long time.
- Actually, his heart function is higher — at 40%. This often happens as the other organs get worse, like a rallying. But the heart function doesn't change the picture at all.
- So, he's been through all the treatments that are customary for this cancer?
- Whole brain radiation is a brutal therapy. I don't think there would be any benefit to it in his case.
- I'm not his doctor any more. On this ward, we only supervise cases for 24 hours unless there is a positive change. Unless you want to start an aggressive treatment?… which I think I said I didn't recommend, when I was on his case…?
- This is a bad ward to be in. More than two thirds of patients who are here die. You said you don't want him to die in the hospital… you have to get him out of this ward soon.
- These infections he's fighting off… they mean he has no immune system left. [It seems so vicious, counterintuitive, petty, impossible to be felled by a fungus or a yeast infection after two years living with giant tumors!]
- More antibiotics wouldn't make a difference at this point. — His organs are shutting down. [I started to hear it]
- His body is showing color changes that indicate the dying process has begun. [I got it.]
I understand the need for science-based medicine, for diagnoses based on observation. I know I wasn't listening at all. I don't fault anyone for anything they said. I loved the care Gavin got in that CICU, as bad as the staff (wonderful people!) kept trying to tell me it was for him. I am even trying to forgive myself and my ears for trying to protect me.
I have a dream that I am part of a culture where we can hear the words, "he's dying," and not disassociate. Where science is wonderful, but the words "he's at home, among family and friends" send a clear undeniable message to us all. When I will be changed too, as part of this change; and I will be able to live and die in this brave and humble world.
But the newsmen still annoy the hell out of me. Just a little.