I thought my days of blogging about my brain were behind me and enjoyed eight wonderful years since my last treatment. I recently learned that my brain tumor has returned. This is sad news, but know that I am very happy to have you with me. Many of you helped me through my initial diagnosis and treatment nine years ago. I’ve made so many wonderful, new friends in that time - if my tumor history is new to you, the next section is for you.
You have a tumor?
I was first diagnosed nine years ago, was treated, and my tumor responded very well to treatment. I thought, and hoped, that I had the thing beat. For the most part, I put it behind me, and looked forward - and for many of you, this is the first time you’ve heard of it.
The tumor is in my brain stem and spine and is diffuse - meaning it is mixed with healthy cells. This tumor more commonly presents in children and is rare in adults, and there’s no clear understanding of what causes it. It just is. Because this part of the brain is so sensitive, and because the tumor is diffuse, it’s not operable.
What’s up with the tumor now?
It’s hard to say. I had an MRI last week to evaluate the current state of the tumor, but, as I doctor I saw recently put it - a single MRI is like a photo of a moving car. It doesn’t tell you much about how fast the car is moving. I will have a follow up MRI in three weeks, and that might provide more information.
What’s next?
I will continue to see doctor’s over coming weeks to discuss treatment options and chart a course from there. My next appointment is early next week, and I hope to share more with you then. Sarah is attending appointments with me. She is the smartest, strongest person I know. I couldn't ask for a better companion.
How are you feeling?
Pretty well! I can do just about everything as normal and have to be careful on my feet as my balance is a little off. My voice has softened a bit and can be a little harder to understand at times. I have carried most of these symptoms over the past nine years, and when I feel imbalanced or my voice is off, I chalk it up to lack of rest or dehydration. These symptoms spiked dramatically a couple of weeks ago, which is what led me to the hospital. I’m on a low carbohydrate diet to keep inflammation down. If you’ve got an easy low carb recipe that you love, I’m all ears...
What can I do?
I always love hearing from you. Jokes, hugs, everything bright. I may not get back to you as quickly as I normally might, but know it’s appreciated. If you are in the area, Mimsy, Sarah and I have lots of adventures coming up this summer, and we'd love to have you along.
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