I’ve been having nightmares, waking up crying, struggling to sleep, then fighting desperately to wake up.
In my dreams things have gone horribly wrong, the way things seldom do, but with that brutal speed that is the hallmark of complications during surgery. There were cancer cells in the lymph nodes, cancer cells in the chest wall, there was the necessity of altering the surgical procedure and anesthesia and a heart attack or respiratory failure, and just like that she is gone.
A part of her still lives. Her chest still rises and falls. Her heart still beats. Everything is still there but the wit and the humor and the smile and the shared jokes and twenty years of life experience. What’s left lies on a table surrounded by machines that go whir and beep and ping. I’m looking through a window into the room. Doctors and nurses and assorted medical staff are looking back. Behind me I can hear so many, many people. Her family, our friends, my family.
All telling me what to do. What they would do if they were me. They get louder and louder. And they are angry and afraid and they all have an opinion and not one of them agrees with what I think I should do. The medical staff, by contrast, are completely silent and faceless in their surgical gowns and masks. They just stare, saying nothing, offering no opinion, no hint, no guidance. Only the machines make noise.
And that’s where I usually wake up.
She’s filling out her patient care instructions in anticipation of her surgery in a week. Part of that is deciding whether she wants a Do Not Resuscitate and Comfort Care order and under what circumstances. It’s unlikely that there will be any sort of serious problem, of course, but it’s always good to be prepared. I should do one too, just in case – you never know when you might need one. But I have a special fear of these things, because I have been on the merry-go-round of DNR once before.
My mother had a kidney transplant. It went horribly wrong. When she started rejecting the kidney, her surgical team decided on “aggressive” therapy to save it. This meant pumping her full of immunosuppresants to halt the rejection. With her immune system shut down my mother would then come down with all sorts of ailments that would roar through her body like a forest fire. When she got sick enough that it could no longer be ignored, she would be taken off the suppressants and pumped full of antibiotics and such to ward off whatever was making her sick. Which was great except that then she would start rejecting the kidney again. So back came the suppressants and back came the infection and the cycle repeated over and over again. By the time the decision was reached that the transplant wasn’t viable my mother was too weak to undergo another surgery. So the cycle went on over and over. Eventually she dropped into a coma. A yeast infection was killing her.
A. Fucking. YEAST INFECTION.
My mother had left instructions for this eventuality. They called for comfort care only the minute she was diagnosed as being terminal. Functionally, she was terminal once they couldn’t get the kidney out. Certainly she was terminal once they had gone through several more rounds of treatment and it was obvious to everyone that she wasn’t going to pull out of her downward spiral.
But her doctors wouldn’t say it. And my step-father couldn’t ask. So I had to ask. In fact I had to do more than ask – I had to ask repeatedly and eventually drive to Davis and confront her doctor in person. And in the end I was the one who had to say the words, to not just say them but pull out the DNR order and wave it around and demand that they take my mother off life support and let her die.
My step-father was with me. He looked so small. He didn’t say a word. All I could see in his eyes was “Please don’t do it. Please do.”
In a week we go in for surgery. It’s entirely routine. We should be in and out same day. It shouldn’t even require general anesthesia. A scalpel, some gauze, and the surgical equivalent of a melon baller and we’re done! Huzzah!
But it can go bad so quickly. And it scares me that I can walk into the hospital for something minor and face Armageddon before I walk out. But I will do it. Whatever she puts in her patient care instructions, I will make certain that they are carried out per her wishes. I just have to make sure I am strong enough when the time comes.