what is the prognosis now?

Hello to my community!

Well it has been quite the past month since I last posted. It hasn’t been exactly great, but it hasn’t been horrible either.

Last week, I had to confront a loved one that spread some misunderstood information to people and so I set some good boundaries.

The information that was spread was that I definitely will be here in five years. Unfortunately, that’s not the case. The nuance of timelines is that you can’t predict things. My tumor was only classified as its own thing in 2021, so research on timelines is sorely lacking, but we do know 5% of people with my tumor type live five years. Whether I’ll be one of them is unknown. We can hope for that, but right now it’s really just wait and see.

I had an appointment today where we talked about next steps since I’m not on chemo anymore. The next steps are to work on strengthening my body with recovery, travel, relaxation, school, speech therapy, and immunotherapy. I will continue to have my scans on even number months to monitor growth and have monthly appointments to go over symptoms and monitor for concerns.

I asked something of my doctors that I’ll ask of you now… since timelines are nuanced and unpredictable, I have decided I want to remove those from the conversation, at least until there is decline or an updated step to take to intervene. Why? Because I feel like a timeline is an expectation and expectations are pressurized. It makes me feel like I’m in a box. I don’t want to be boxed in.

I’m hopeful that this exercise in not focusing on timelines will allow me to live more freely. I’m hoping it will give me opportunity and perspective.

I hope this makes sense and that you will embrace this boundary with me.

Thank you,

KB