September 30, 2009
One year ago today, Marge had her cancer surgery. That was the day the Caringbridge journal I wrote really got underway. Remembering the day after a year is painful but somehow essential.
There are parts of the story that we love to tell, such as the fact that Marge showed up for surgery with a smiley face (rendered in ovarian cancer teal) on her stomach. She had been told that “a happy surgeon does his best work.” What better way to ensure that happiness than with a great big smile.
The whole idea of the smiley face was so much fun that we didn’t think it through. Almost by accident the smile was rendered with a washable marker. We’ve been told since that if we had used a permanent marker, the smile might have caused the surgery to be postponed! But Fortuna smiled on us.
I also like to tell the part of the story about how at the end of the surgery I knew the news was good by the bounce in the surgeon’s step. From meeting him many times, however, I’ve since realized that that’s just the way he walks—whether the news is good or bad. That day the news was good. Fortuna smiled once again.
Over the past year I’ve referred a lot of people to the Caringbridge site, secure in my belief that the whole story was there. Yet I now find that the worst moment of Marge’s entire time in the hospital wasn’t mentioned there at all! Here, as the insufferable Paul Harvey used to say, is the rest of the story:
For four days after the surgery Marge endured a ventilator tube. I was there with her when the tube was finally removed. She seemed exhausted and ready to sleep, so I went home and wrote, exultantly, “Great news today! The ventilator tube is out!”
What I didn’t know was that at just about the time I was writing those words, Marge was falling into what is called narcotic induced apnea. In plain English, the pain medicine she was receiving (Fentanyl) sedated her so much that she stopped breathing! As a result, she got Naloxone, the anti-overdose drug, to overcome the apnea. This started her breathing again but left her with the God-awful pain.
I wouldn’t have known anything about this until the next day if it hadn’t been for Carolyn, the minister from our church, who showed up at the hospital just as Marge’s situation began to get dicey and then came to the house to tell me what she had seen. I was set to rush back to the hospital, but Carolyn talked me out of it by explaining that Marge was finally resting comfortably and might actually get some sleep if I left her alone.
The truth about the journal is that I got better at writing down the whole story as the long weeks passed. Several people have asked me why I put so much into that journal, and the answer is that the act of writing helped me find the courage and focus I needed every day as a caregiver and advocate.
I wrote in the journal nearly every day, and it forced me to do my best to understand the swirl of events. An additional benefit was that the journal made it possible for friends and family to know what was going on without my having to tell the story over and over.
The biggest surprise for me now is I don’t want to write about the BIG LIFE LESSONS that the journal always seemed to be bumping against. It’s true that I’m working on a book that will be derived from the material in the journal, but the book isn’t and won’t be about BIG LIFE LESSONS.
I find that I’m much more interested in writing about small lessons, such as how we managed to get through 3:00 a.m. night after night. The short answer to that, by the way, is together. The long answer will be the book.
What Marge and I treasure most now is the normal, uneventful life we are leading. Now back at school full-time, Marge didn’t even remember that today was the anniversary of her surgery until I mentioned it to her. I think this is how it should be.