May 29, 2019
When you feel like you’re losing.

I am scared all the time. Scared and helpless. And the helpless part is worse than the fear. I can handle the fear. I can avoid the what-ifs. I can exist off of next steps and next doses needed.

Cool cloth on his forehead — damp and icy.


He remembers this part. Knows to ask for colder when it’s not cold enough.

He doesn’t remember that he likes it placed right up against his chest, to cool the aching chasm he’s opened from coughing over and over and over again. He doesn’t notice when the towel starts picking up tiny bits of hair, and how I have to catch my breath, stabilize my heart rate, when I turn to put the washcloth back by the sink, because he’s getting worse.

But then he needs something else and I’m back.

He likes his hand held and his back rubbed — well, until he doesn’t. But then he’ll tell you. The dying don’t have time to be anything but honest. He likes having his feet rubbed to ease the pain of whatever is making them so, so swollen. He likes inappropriate jokes and Trevor Hall chants on Youtube and the attention. He likes to feel like someone knows him, like someone can speak for him and stand in for the voice that’s beginning to fail him.

He likes to know what medicine he needs next.

We do know, by the way. We know better than anyone. And we know sometimes he doesn’t need it, but he’s afraid and he’ll take whatever it is we have available, because then, for a minute, he can feel as though we’ve begun to attack the thing that’s killing him.

But we haven’t. And I can’t even think about that yet.

This, though, this I can do. I can remember it all. Washcloth, massage, spit cup, ice chips, oxy, oxy ER, nebulizer, robitussin, composites, ibuprofen, senna, miralax, maylox, tylenol, pregnazone, every two hours, every four hours, every six hours, every minute, every moment, every cough, every breath. There’s something to do. And so this, I can handle. I can do.

But when I stop, I am helpless. Helpless because we haven’t even started the fight. Helpless because I’m tired, and if I let my eyes shut, I’m afraid my world will look different when I open them again. Helpless because he deserves to be saved. We need him, I need him.

So I am helpless, and I am scared.

And every single moment must be filled with something to do, because if I stop moving, he might stop breathing.

And if he stops breathing, there’s no guarantee that I’ll be able to pick up where he left off.

27. My dad died after a 24 day battle with cancer. Here are some stream of consciousness journal entries from before, during and after.