Let me tell you what’s weird in Brain Cancer World. Two weeks ago, when mom’s hospice nurse came to visit, she declared my mom’s condition “status quo, with deterioration.”
I think that means, “Still living, but a little less than she was before.”
Last Thursday, a day after we visited with Mary and Tim and one of their brothers and sister-in-law, I got a phone call. Everything the day before had been status quo: Mom slept most of the visit, but when she was awake, she was listening and responding. That day, the day after the visit with the family, something changed, and I raced down to her house. The nurse had stopped by earlier, and noticed that Mom’s color had changed. Her lung capacity was diminished, which we knew, but she had what the nurse called “the Look.” It was this Look she didn’t know how to describe but knew well from her work with dying patients. It’s not a good Look, basically. It’s not a Look we’re going for these days.
So, based on her color and the Look, mom’s status is thus changed. The end is “getting close,” the nurse says, but she’s “not actively transitioning yet.”
This is what I hear:
When my dad was in the hospital before he died, we experienced these same fits and starts, these scares, but in a more condensed way. He’d had pancreatic cancer for 16 months–a cancer we were still unwilling to admit he might not beat–when he had a medical emergency at home. He died once upon arrival at the hospital and was revived (“Almost dead!”), but went into a coma. We held vigil in the ICU for a week, and there were two or three other prompts– the “we think it’s time”– from the nurses before the end actually came. We would perk to attention, stand around his bedside, holding his hands, touching him, telling him it was okay to go…and then his breathing would steady out again and we’d go back to wondering and bracing ourselves and our shock that this was happening in the first place. The staff addressed us with experience after these moments. “He’s still trying to work something out with his angels,” one of them said, her voice calm with knowing, and patted me on the elbow. Dad did not go gently into that good night. Neither, unsurprisingly, is his “bride,” as he called her all the way through. Mom, the nurse said, is very healthy other than that pesky brain cancer. There is literally nothing else wrong with her–so we are just watching that stupid tumor do its miserable work in this finale.
I’ve seen better shows.
I don’t want Mom to go. David asked me if it was easier this way, watching her leave us bit by bit, rather than the sudden swift loss we thought we’d have to endure. No, I said. Of course not. It was a silly question. As long as my mom is still telling the kids she loves them when they leave her house, and is still calling me “Sweetie,” and is holding my hand when I crouch down beside her, she’s here, on this side of the known. I’m not ready to be a daughter without a mom. These past few months have provided a reminder of everything I love about her and will miss about her the most. They’ve pushed the issues or old arguments or personality differences to the side and left all the good stuff: her sense of humor. The way she could make me feel like love was unconditional. The way she was a counterpart in the sense that I could talk with her, walk with her, laugh through important moments with her in a way we can’t do with our spouses and children. Our moms have known us the longest. We’ve known them our entire lives.
She’s in pain now. It comes and goes, we think: body aches and bed sores and bruises. Mom’s in the pre-active stage of dying. So many stages. So many levels to move through before you get to the final door. But she’s still alive.
And, by the way, she would have an absolute fit if she knew anyone was thinking of her as “almost dead.” So I won’t anymore. Because she’s still alive.
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