Good news!

Met my new NO team today. Backstory: The NS who ref’d me had come in to our first visit telling me I needed radiotherapy. I did a bunch of research, realized I had a chordoid meningioma, that they’re nasty and deadly, and that radiotherapy is being used to treat them.

Flash forward: my new NO’s responsiveness is freaking amazing. He actually listens. He didn’t treat me like an idiot. He answers direct questions directly.

And my CM is borderline grade 2–like just over the border from grade 1. He thinks we can maintain a 6-month MRI routine, and when recurrence is seen, we might even be able to resect again. He also said there are 2 systemic chemotherapy’s showing promise for CMs (one IV, one oral) and we can see if they are indicated if we have to later on. I most loved when he said, “I think the cognitive loss would be too great for you to do radiotherapy at this point.” Hallelujah! Someone listened.

He offered me 6-, 9-, or 12-month MRI. I said 6 for now, he said, “Yeah, I’d probably do that, too.” And then his scheduler did a bunch of legwork before I even left.

His whole team were amazing, caring, and quick.

Thank GOD! I feel calm again. I know this is a long road and it won’t be an easy one, but I feel like I’m walking it with an excellent team!