Christmas in Xeloda Land

I'm writing this retrospectively, since I was absent through so much of my treatment. Christmas was grim: No tree, no decorating of any kind. I don't even think I had the energy to buy gifts. I bought something early in my diagnosis for one of my office cohorts. I don't think Hubby got anything. He didn't mind. He could see how it was for me.

I felt wretched for the first 5 days after chemo. About the time I started to feel better on some level, it would be time to go back and have more poison pumped into me. I also had to take Xeloda at home as an extra chemo bonus. I think it was the Xeloda that caused the mouth sores that continued throughout the time I was taking it. I also had sores on my hands, on the skin in between my thumb and forefinger. On both hands.

I hurt all over. I felt like I weighed 300 pounds and it was 300 pounds of unassailable pain. I couldn't really pinpoint exactly where I hurt (except for the mouth and hand sores) or explain the kind of pain I had. It was definitely bearable, but bearing it took an enormous toll in my energy, concentration and memory. I did, in fact, gain about 20 pounds from the steroids. They were supposed to help with the nausea sometimes experienced by chemo patients. I never had any, so I guess it worked.

There was a me somewhere in that 300 pounds of pain, but I was hard to find most of the time. When I could find myself, it was always in the context of being a tiny speck of personhood in an enormous body. The speck was dedicated to holding on.

I held on. And on and on. Just when I thought I was almost through with chemo, I learned there was another 3 months in store for me. It was demoralizing. I had no choice. So I kept on noting what it felt like to be so sick and trying not to have any feelings or thoughts about that.

Sometimes all you can do is hold on and it takes everything you've got to do it.

Magic

I've been silent a while because of the overwhelming effects of my chemotherapy. Every new round brings mouth blisters and blisters on my hands. I feel like I'm on auto pilot most of the time, just trying to endure the pain and not think too much about the future. I'm getting a lot of practice in living in this very moment. Unfortunately, the more in the moment I am, the more parts of me get shut down. I don't really have the concentration to read or write. Sometimes it feels like there's only a small part of myself that isn't in pain. I continue to try to live in that small space, profoundly aware of the pain, but walled off from the full impact. I have no choice but to insulate myself to whatever extent I'm capable. Luckily, I got really good at this when I was a kid.

This is where the post traumatic stress disorder comes in. Admittedly, ptsd adds a whole layer of complication to life and it diminishes my range of feeling. Those are just a couple of ways that my survival mechanism that saved me keeps me chained to the past. However, the ghost of christmas past has a part to play in helping me to endure the present. I've got an enviable ability to place issues beyond the reach of my mundane thought processes. I imagine the difficulty (or fear, worry or pain) in a box. I imagine opening a door in my mind and placing the box inside of it. I bar and then lock the doors. While I know that the gift box will have to be opened and dealt with at some point, it's safely tucked away so that I can resume my life.

Everyone in my life tells me what an inspiration I am. They're inspired by my ability to find and celebrate humor. They're inspired by my steely determination to get out of bed every day and function at work. They don't know the secret. They don't know that I created a room in my head long ago and that pain gets ushered through that door. Pain and I have an understanding. I'll be back to deal with it as soon as I can. Pain is patient and settles in for the wait.

I've never doubted that I managed to grab some magic from my terrible past. I've used it in far less difficult circumstances than these. When things get too hard, I search for the correct incantation. At those times, I'm grateful for the terror and pain of my childhood.