I was down on the floor, entertaining a two-year-old, while her mother helped my patient onto the commode beside us. My patient was the grandmother. We were in one of the bedrooms, the one with the most comfortable bed and the TV. My patient cried and wailed with each shuffling step, but her daughter was unfazed, so I decided to let them do what they were doing--this was their life, not mine, I was a visitor here--and keep my focus on the child. She was playing with a toy truck, and had it drive up and down her mother's leg until her mother batted it away with her hand. I thought of blowing up a glove balloon, but decided that she was too young and might chew it.
The misery in the room was a very basic kind of misery, the kind caused by physical suffering. I felt how huge it was, and how the child with the truck and her matter-of-fact mother took some of the heft out of it. It can be easy to relieve suffering. The first and hardest part is not shutting down in the face of it.
My patient hadn't slept in two days from the pain. Nobody had called me, because they didn't think of it--I was coming Tuesday, right? They would see me Tuesday. I tell patients and families all the time, "You call any time day or night, we can help you," but so many people are so used to getting by on their own that they don't understand what that means. I walked through the door, and saw a woman with a gaunt, shadowed face, her eyes gleaming with pain, and crying. I felt the horror of it (and hers was an especially terrible cancer, with tumors actually starting to push up from under her skin on her torso, and leg, and back; her insides were so full of tumors, there was no more room for them to grow), and felt the battleax nurse in me get annoyed, too-- "This was avoidable, people! What were you all thinking??"--and also felt how great the need was for somebody to steer this ship away from the shoals. Well, I could do that, and I did.
The thing is, I get to leave. I write out instructions, we discuss the plan, I reassure, I stress the importance of calling if there is a problem, but then I get to pick up my nursing bag and walk out the door. I have to make sure that I have left them with more than bottles of pills and written schedules; I have to be sure that I have given them some nameless something that can help them get through the hours before the next nursing visit. I don't choose to identify what that something is. With each person, it's a little different.
I offered the services of the social worker, and the chaplain, and the home health aide, and tried my best to get them to accept one other discipline in their home other than the nurse (because I know how much it helps--they didn't, couldn't), but they turned all of it down. "All we need is you," they told me,"we trust you."
I have another cancer patient two towns over. He once weighed 300 pounds, mostly muscle, 6 feet tall, and photos of him from years ago startle me, because it could not possibly be the same man, save the sparkle in his eyes. He's now about 145. He used to train horses; he's from horse country, out around Kentucky, and never married. "I couldn't, living that kind of life, I travelled all the time and worked from 5am to midnight. Not that I didn't have lady friends through the years!"
I pulled up a chair, and we talked. I've been seeing him for three months now; he hates the pain, so whenever it starts getting ahead of the medication, he tells me, and we adjust it. He was amazed that the pain meds we used on him worked so well--he'd been taking MS Contin from the oncologist and it hadn't done much. A lot of our talks initially were about how wonderous life had become without being plagued with pain all the time. A full night's sleep was next to heaven. He was able to go for walks again, and was happy to be able to get the the grocery store and get his shopping done without having to have anybody help him.
As time went on, he started telling me stories of his boyhood in the Kentucky hills in the forties. "Do you wish you could go back there? Would you if you could?" I asked, and he answered with a slow smile, "Naw, I'm done with that place. I'm content here."
He told me about his travels, and life on the road, and being poor. One day he was wearing a T-shirt with a decal of wolves on it, and he said, "Somebody saw this today and thought that I was an animal lover!" I laughed and said, "C'mon, I bet you're wearing that because it was fifty cents at the flea market and it fit you." "You are absolutely right!" he grinned.
He's a charming but solitary man. He has pictures of the Virgin Mary on his walls, "just in case," he says, but I don't believe him. He's an atheist, and was never a Catholic. I'll bet there is some other reason that he just hasn't told me yet.
He started to fall off about a month ago, and gave me a worry--sleeping all the time, no more walks, the pain in a new place--but then righted himself and had a few weeks of feeling better. Than this week I went to see him and his face, always pale, was gray around his eyes and cheekbones, and his eyes were dull and troubled. "What's wrong?" I asked, and we talked about it. It wasn't so much the pain and the breathing problems as the weakness and the futility of it all. "I know I won't get any better, but I want to. I don't like this."
"I wish I had a magic nursing wand," I told him,"and could take it all away from you."
"So do I."
"Yeah. But I can't. All I can do is see you on Wednesday. And Friday, too. I'll keep a close eye on you. How's that?"
"Yeah, I think I need it."
I stood up to get my stethescope from my nursing bag, and he said suddenly, "You are beautiful."
I didn't know how to respond at first. "Well, I'm having a really good hair day," I answered, and he gave me a grin. The gentle sparkle in his eyes was back, if only for the moment.
He is a man who takes it as it comes, and rolls with it, and looks for the humor in everything. He also takes life very seriously. He's like me in that way.
And I'm his nurse. I'll be back at the end of the week.
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