Not what I wanted to hear….

I got some good news on Friday. I got some disappointing news on Friday.

I had been telling myself to prepare for something, but the something still caught me by surprise.

Now, I’m working it out mentally and emotionally. It feels surreal. The whole thing feels surreal, honestly.

Let’s start with good news. I am happily home from the hospital. My extended stay focused on treating the problems from MOG largely worked. A week of steroids, a week of plasmapharesis and a dose of RituxanAB and my sight is mostly restored and the optic neuritis pain is gone. We are giving my body the best chance to let the Rituxan manage the anti-bodies that are attacking. I have a few more weeks before we’ll know 100% if it’s working, but I am hopeful and so are my drs. So that’s good!

On Friday, I had follow up with my surgeon focused on the chordoma removal. The good news, the surgery was very successful. A good clean removal of the calcified chordoma that had flummexed him in early August. My nose is healing nicely.

But when the exam room door opened and the head of the proton radiation center at Winship Cancer Center walked in, I knew it wasn’t all good news and it certainly wasn’t the news I was hoping for…I think my exact words were “well this can’t be good news”.

While reviewing my post-op MRI the Drs. have identified two more spots that “we need to be concerned about.” Neither are are big enough to merit operation at this time. Because there are two more spots, they want to do full spinal MRI to confirm there aren’t any other spots. Additional sites of chordoma would be unusual. I admit that makes me nervous, I have been a model of unusual this summer.

I had prepared myself for the potential of radiation. I wasn’t prepared for TWO MORE SPOTS. Now I’m just hoping there aren’t others.

Once we have the full picture we’ll create a treatment plan that will include at least 37 proton radiation sessions. Which, in and of itself, isn’t a huge deal, but the chordoma locations are a big deal. That’s the challenge with chordomas, they often live in and around critical functioning areas and shooting focused radiation at critical functioning areas is a delicate job.

Gratefully, Atlanta has a proton therapy center, shiny and new actually. But the “we’re working in a delicate area” sentence repeated by my doctor does create alarm bells in my head. Plus, it’s just been that summer for me.

Success with early treatment is high, better than 80% in fact. So that is good news. I am trying to focus on that.

I find myself resigned that getting better is not easy and that the path ahead still has surprises for me. I am overwhelmed by it all. I am scared. I am determined to get through it and be healthy again, and I would sure appreciate a break. I don’t want to talk about it, except when I want to talk about it. I want to curl into a ball in cry, except when I want to sit in the sun and smile. I would like a day that doesn’t involve some health management focus and know that is a long way off. I am sad. I am grateful for my life, for Andy, my children, family, friends. I am sorry for putting them through all this.

And that is where I am right now. And, in the backyard enjoying this lovely early fall day.