Hi Everyone,

     I have some good news to report. I came home from the hospital on Christmas Eve and since then my pain has been more under control than it’s been in four years. Weakness is still there, and I can’t walk without a walker, pain still arises every now and then but resolves within the hour, but these issues seem like small problems compared with the torture I’ve faced on a daily and nightly basis over the last years. I didn’t know if I would ever experience life with comfort again. Here’s a little bit about how this period of respite began.

      We sang carols in my hospital room two days before Christmas. We made programs and invited friends and family. The room was packed. Reuben and Thomas were very moved by the show of love. Before we began singing, we went around the room, introduced ourselves, and people offered thoughts on what they loved about me. Reuben couldn’t stop crying at first, covering his face with a hospital pillow. Then, in true form, after about ten minutes he was making jokes and cracking everyone up. Thomas did beautifully as well, singing and being his naturally cool clown-angel self.

     It felt like a strange miracle. The next day, on Christmas Eve, the pain let up, and I was discharged. I’ve been home since. My doctors had started me on several new meds with the feeling of a hail-Mary attempt to address the unceasing pain. Even with the correlation between starting those meds I found it hard to believe that they were responsible for the dramatic reduction in pain. It’s been difficult to say what exactly has caused this cessation of pain. My guess is that the rare cordotomy procedure finally started to fully take effect. When I talked with my neurosurgeon who performed the operation, he confirmed that this may very well be the case. Sometimes the cordotomy causes inflammation which can in turn cause pressure on the nearby nerves, prompting its own sort of pain. Then after about two weeks the inflammation usually goes away, and the pain stops. That seems like what probably happened to me.

     I’ve started to slowly taper off many of my meds: opioids, steroids, and a couple others. The steroids have caused me to gain about thirty pounds and have also caused my face to swell. They were also causing insomnia. Since dropping them several days ago I’ve slept like a baby and my face is slowly getting closer to normal size. My pain has stayed mostly manageable since dropping those meds. There has been a small increase in pain since stopping the steroids. But when that pain shows up, I use the bolus on my intrathecal pain pump, and it usually resolves within fifteen minutes.

     Was I healed from constant pain by the Christmas Carols? Was it the Cordotomy? Was it steroids? Probably a mix of everything, with the cordotomy at the top. It was a risky procedure. But, like my surgeon said, I’m glad we took the risk. We were at the end of all our options. We had tried everything. We rolled the dice with that rare and risky procedure that involved burning part of my spinal cord to disrupt pain signals, and it seems to have worked for now. I’m thankful we took the risk.

     Laura and I have a weekend-away-together planned for a couple weeks away, in the hills of Brasstown, North Carolina. I’m here at home when my boys leave and return from school. I help them with homework. We find ways to play outside together. I’ve been back in the kitchen cooking. I’ve also been working on some woodworking projects, on a scale that’s manageable for my limitations. I’ve been playing music. I’m enjoying this chapter of life. I have immense gratitude to all of you for your love and support. Thank you.