Getting the Ending Right

Yesterday’s trip to the oncologist taught me exactly how easy it is to hear what you want to hear. Specifically, when last week I heard “dramatic improvement,” what I didn’t hear was the context: Susan’s brain is filled with too many lesions to count, and the ongoing inflammation can only be moderated — not eliminated — by steroids.

Yes, the size of the lesions had dramatically improved. But the truth is, the brain is delicate. When you throw a handful of gravel into it, the size of the individual pebbles is only one of the things that matters.

So while I’ve been pinning the blame of these episodes on Decadron, the fact is they would be happening regardless. The timing would just be different.

So: we’re up to twice as much Decadron now as we used to be.

But the truth is, it doesn’t matter much. Things are changing fast now.

Here’s what I mean.

As we got back from the doctor yesterday — around noon or so — and I had gotten Susan into the wheelchair to go into the house, the weather was so perfect I suggested we go for a walk instead of going into the house.

That sounded good to Susan.

So I pushed her around the neighborhood, loving the feel of Autumn: warm sun, cool breeze. The trees in the valley are changing colors, and the sound of a wheelchair rolling over crunchy leaves is incredibly soothing.

We talked, and Susan seemed — for the first time that day — to be happy and herself again.

After an hour or so she was tired, so I wheeled her home and got us lunch.

By the time lunch was over, she could no longer remember that we had been on the walk. She couldn’t remember the trip to the doctor. And for a while, she was certain that she was not at her home at all.

And she got worse as the day progressed. She’s now confused, lost, and afraid most of the time. It is unbearable for me to watch. Not so much that her reality is slipping; I expected that to happen eventually. What I hate is that it’s slipped into such an awful place.

So I spent the afternoon trying to answer the question: how can I be kind? Kind to Susan, and kind to the children, who can’t understand what’s going on and find themselves frustrated and scared when they try to answer Susan’s impossible questions (“Is that me walking around upstairs?” “Have I died?”).

The answer I’ve come up with is something like this:

I know how this will end now; the last chapter of Susan’s cancer is already written. I can’t control that. I can however try to exert some control over how Susan experiences this last chapter. And equally important to me: I can control how my kids experience it.

So we’re switching to hospice now, and the emphasis of the medication Susan takes will be on blocking the fear and confusion she’s feeling. I can try to make her time with the family pleasant for her, even if I can’t hope to have her understand it.

And meanwhile, I’m explaining as best as I can to the kids that mom has spent her whole life taking care of us, and now it’s our turn to take care of her.

There’s one big piece of this puzzle I haven’t figured out yet, though: I am clearly pretty messed up right now, but I’m dealing with it by staying extremely busy. I feel OK whenever I’m making myself useful. So far, that’s working, because I have a lot to do. But I know it’s not a permanent solution. I’ll get to that later.

For now I need to focus on my wife and kids.

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