It’s been a draining week. Let’s finish with something good. The twins’ Halloween costumes.
Katie’s a princess.
Yes, a 7-year-old girl being a princess for Halloween. Unbelievable.
Carrie’s a sorceress.
Note that she is not a witch. I am not clear on the distinction, but she is emphatic.
Happy Halloween!
Susan’s good stretch lasted maybe 20 hours. In hindsight, maybe it was foolish of me to hope that it would last much longer than that. In fact, I had hoped that she’d be OK for weeks, or at least a few days.
So I couldn’t sleep last night.
Instead, I laid beside Susan as she pressed her hand to my chest to stop the flow of blood from the knife wound she was certain she had just given me.
There was more. All of it horrible.
Around 2:00am, I gave her more drugs, hoping they would help her sleep. They did not.
As the night wore on, I tried new tactics.
I stopped responding directly to what she said, instead telling her what I wanted her to know. This didn’t work; for the first time since we’ve been married (yes, really), Susan started shouting at me.
Eventually, I stopped responding at all, figuring that nothing I said made any difference, so maybe saying nothing would be an improvement.
Around 5:00am, Susan went to sleep. But by then I was — am — too frazzled to settle down.
Through the night, I kept thinking: cancer isn’t just bad-as-in-unfortunate. Cancer is evil. It took my wife’s breast, then her health, then her hip, then her energy, then her dexterity — all things she cared about.
But Susan stayed tough and positive through all of that.
And so now it’s taken her mind and her ability to enjoy being with her family.
Right now, to me, cancer seems both insulting and malicious.
I hate it.
By the end of Monday, I didn’t really think I’d ever get a chance to talk with Susan — my real Susan — again. And that, more than any of the other fifty things that have me messed up, left me on the verge of panic.
And then, yesterday afternoon, Susan became herself again. It sounds odd, maybe, but others noted it too: you could tell even before talking to her. Just looking at her eyes was enough.
And so she and I (with the help of my Mom, who is doing a wonderful job of taking care of us) went about having an ordinary day: helping the kids with homework, planning Halloween costumes, going on a walk in what must be the best Fall weather the world has ever had.
Until yesterday, I really had no idea how wonderful an ordinary day is. But as I watched Susan help one of the twins with her reading homework, I thought to myself that I would rather be right there than on a trip to Hawaii or Italy or anywhere.
Then, after the kids went to bed, I talked with Susan about our hospice nurse and how we’re focusing our efforts right now on helping her keep her mental clarity — though I really had no idea we’d have such great success.
It was such a relief to have the conversation with Susan, to have her be a full partner in this, instead of it being a decision I was having to make mostly on my own and imposing on her. Now I can feel right about it.
More important than the talk about our shift in focus — from fighting the cancer in her body to fighting the symptoms coming from the cancer in her brain — I got an opportunity I expect billions and billions of people have wished for: Having thought I had missed my last opportunity to tell Susan all the things I want to, I suddenly had a new opportunity drop into my lap.
A second chance.
And you can bet I did not pass it up.
Susan’s still herself today. She got up with me and helped get the kids ready for school, just like any ordinary day.
But ordinary now feels so amazingly extraordinary.
Now, I don’t consider this a “call to action” blog (though, honestly, could fatcyclist.com now be any further from its original purpose of being a cycling lifestyle / comedy / weight-loss blog?).
But I’m going to make an exception today. I’m going to tell you to put yourself in my shoes.
Think for a moment about the person you care most about. Now think about what you’d wish you could have said if that person were taken away from you. Now think about how glad you would be if you were given a second chance to say those things.
And then go say them.
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.
Last weekend was the most difficult I’ve ever had, but it feels too personal; I don’t feel like I have the right to write about it yet. Plus, I don’t have the will.
The short version is that on Friday night, Susan became completely unresponsive. Her eyes were open but she couldn’t move at all. We went to the emergency room in one hospital, then to a different hospital to check her in, for insurance reasons.
As the weekend progressed, Susan’s consciousness came back; she is now more or less herself again, although very weak.
I’m certain it’s tied to reducing the Decadron dosage; the correlation is too strong for it to be anything else. But I don’t know what we’re going to do about it.
We’re seeing the oncologist this morning.
I’m really glad that my sister Kellene happened to be staying with us when all this happened. Thanks to her, I was able to focus on taking care of Susan.