I scheduled my colostomy surgery about six weeks before I had it. That afforded me a comfortable window of time to overthink it and work myself up. I am a logical person. I am a scientist. I understand the risks and rewards of procedures and meds and so on. But I am also human. While I knew it was the right decision, when I was alone, I often thought about all the ways it could go wrong.
One of my friends asked me if I was ready for surgery a couple of weeks before I went in for it. “I wish I could just do it right now,” I answered. “Once it’s my reality, it’ll be fine. This thinking about it all the time is exhausting.” I think that sums it up well. I just need these things to happen because once they become my reality, I just deal with it and move on.
Part of why mast cell disease is scary is because so many things can go wrong. That doesn’t mean they ever will, but even if you feel confident you can manage your symptoms, you can’t help but think about all the horrors lurking in the dark places of the world. But it’s not productive or comfortable to live your days living afraid of all the terrors that might befall you. When living with mast cell disease is your reality, you just do what you have to do to get through your day. It’s okay to worry as long as it doesn’t keep you from living.
I got a port placed today. I have known this was coming for some time and I know plenty of people who have them. It was not something I was logically worried about.
But last night, the mental gymnastics started and suddenly I was worried about IV contrast accidentally being used and my friends and family reading my journals after I died from the reaction. There was no reason to think this would happen. It was pure ridiculousness. But that doesn’t mean it’s not scary.
I told a friend about it. “Oh, I thought I was the only one who did that!” she said. No, you’re not. We all do it, whether or not we admit it.
This morning I arrived at my hospital at 6:30am to have my port placed. I met with the PA doing the procedure at 7. He had read my entire history (“Which is really long and interesting,” he noted) and did some research on masto. He went through the entire procedure, what materials would be used, what meds would be pushed, and made necessary changes. (No Tegaderm, no chlorhexidine, absolutely not under any circumstances IV contrast.) He asked what I wanted for premeds and ordered them for one hour before the procedure exactly as I requested, right down to the diluted Benadryl pushed over 10 minutes followed by a slow flush. The nurses and technologist were excellent and the procedure went very well. I am very sore and tired, but I have an accessed port and no PICC line and no reaction to speak off. That’s what I call success.
Whenever my body changes in a noticeable way, I show it to my animals and let them investigate it. Tonight I sat on the floor and Story came over and sniffed at my port and mouthed at it a little. “It’s okay,” I told her. “My body used to look different but now it looks like this and it’s okay.”
And you know what? It really is. This reality is not so bad at all.
