I realized it was out of my intestine about one this afternoon. I think I actually knew earlier, but I couldn’t face the reality of what that meant. I found my courage and checked—I will spare you the details—and discovered the key factor that meant it was in my stomach again. I called the doctor and then played phone tag all afternoon. I spoke with one group who is unsure what to do—replace it again or move the site. In other words, cut me open and try again. Finally, the call came back from the provider and for some bizarre reason, they scheduled me for a simple x-ray. I suspect the nurse did not relay the bulk of my message again (see previous blog) and the doctor assumed I was just being overly sensitive.
I know I am not. I know I am looking at getting another tube, or another site—or maybe another solution. The problem is, we are running out of solutions. I am at the point of questioning why I even allowed this in the first place. Sure, I was slowly starving, but maybe I could have figured something out. Yes, there were other reasons as well, but maybe I could have figured those out too. I trust my Gastroenterologist. I know he wouldn’t have recommended this step lightly. I know he could never have foreseen this mess.
It’s just becoming too much. I feel like the patient in a hospital drama. No, scratch that, I feel like a character in a fanfic story where the poor characters have hurt piled on hurt until you wonder how they can possibly come out of it whole. I admit I’ve written a few of those over the years, and more than once they didn’t come out of it the same person they were going in. How can you be unchanged?
I don’t know if I can face it again. I don’t know if I can live anything like a quality life with the shadow of a new feeding tube every week or so, which is what is happening right now. I am struggling with the quality of life versus the quantity life question right now. I’ve heard from, more than once, “If you were a dog, they’d put you down”. That is not comforting, especially when I know for a fact for most people that would be true. They would end the suffering of the poor animal that couldn’t eat, that was in continual pain, that was nauseous all the time, that couldn’t star correctly hydrated. Where does that leave me?
There is no cure for gastroparesis and esophageal spasm. There are “comfort” measures—like the amazing migrating tubes. Only they are not comforting. They are making me question my own decision making. They are making me ask myself “What is the life I want to live?” It’s a hard question. Where do I draw the line between living a quality life and living a longer life?
Right now, though, all I want to do is cry uncle. I want to find the one writing this story in the comfort of their office or bedroom and tell them to stop. Let the hero rescue me, let me drive off into the sunset with hope and the music blaring. I know that is unrealistic, but sometimes it comforts me to think it could happen.
Especially now. What do I do? I don’t know, this time I really don’t know.