I didn’t do my usual birthday post. August 1st came and went. I thought about it, but wasn’t motivated. It’s not that I am depressed, or maybe I am, I’m just not sure what to say. Then I wrote this blog in September and it’s been sitting in my drafts since then. But today, a year ago, I finished proton beam radiation. So maybe it’s time to share again.
I’m okay. I’m even fine most days, except when I’m not. Except when I’m mad or depressed or when I have eye pain or fatigue so bad that all I can do is sleep or rest. I’m living a fairly normal day to day life. I’m enjoying my big life. I’m doing meaningful work. I’m walking the dogs with my darling husband. I’m celebrating with and hugging dear friends. I’m planning travel again. I suspect many of you can relate to that. After all we’re all coming out of the pandemic, my pandemic time was just complicated by illness. So let’s celebrate that, together.
Well done, we made it!!
But do I feel good? I’m not even sure what ‘good’ will be and what normal will be like. I’ve been in some form of active treatment since June 9, 2020. That’s 17 months. A small drop for some people who have had longer, harder battles. But it’s still all new to me and I’m trying to figure it out. I’ll never feel like I did in May of 2020, that seems certain. But I am working to get back to that quality of life. I know I can get there, because remember, the thing you focus on is the thing that happens. Right!?! I have my vision.
Once some more milestones pass, I’ll begin to relax, I hope. My 6 month scans confirmed the cancer is sitting still and behaving. Phew! I continue to have bi-weekly IVIG infusions to keep MOG at bay, which leave me fatigued for day followed by pretty decent days. I’ve started a new drug protocol, Cellcept, that will hopefully replace the IV infusions after the first of the year. Pills 2x a day over IVs bi-weekly, yes please.
So yeah, I am okay. And that is really okay. And I’m working on living my vision. I am working through the creative tension, or some days, just TENSION that has found my life. I’m positive, I’m grateful, I’m OKAY!
I am so glad to hear this update. You are one of my major role models for how to approach living life. I only hope that I can be as strong and as positive as you when facing life’s inevitable challenges. Much love cousin
I have the privilege of being your mom. I had the privilege of having you, Andy and all three grandsons for Thanksgiving! You may not be your old OK but you are a great new OK. You inspire me every day. Thanks for your Big Life Vision. I so admire your determination and positivity. I love you!