The biggest exhale. I was nervous to share my recent MRI because I didn't have an official radiology report. At my appointment Friday (5/29) with my neuro-oncologist, he said from what he could see on the images the residual tumor was stable — but from what I could see, it looked bigger. I spent these last few days preparing myself for a report that said there was an increase in size, and bracing for feelings of defeat. I didn't understand the weight I was carrying until I read the words "No interval disease progression." It's crazy that a part of me still thinks they missed something and I don't believe it. That's what years of misdiagnosis, medical trauma, and being in the rare tumor world will do to you — but I am really determined to put in the work so that I live in the moment and celebrate every win. I have been feeling soooo not good after stopping targeted therapy, so it's a relief to know it was my body coming off the meds and not a tumor growing. My next MRI is July 13th.
In other news, Monday I started a new medication that was literally just FDA approved, called Imcivree. It blows my mind that there are people out there smart enough to make a medication that helps repair the damage to my hypothalamus. One of the main things it addresses is hypothalamic obesity — which, in my case, is due to where the tumor damaged my hypothalamus. This is totally weird, but I have been living the past four+ years not knowing at all what the feeling of fullness is when I eat. If I had no restraint, I would literally eat nonstop and never have a brain signal telling me I was full — just a constant, nagging hunger. Even though I have been religiously calorie tracking and exercising, I could not lose weight. The hypothalamic damage also caused me to burn fewer calories than a normal person. It makes me sad that I blamed myself for not being disciplined enough. When I started Imcivree on Monday, June 1st, it confirmed that I had been fighting an unfair fight. I felt the feeling of being full for the first time that Monday. It's SUPER weird. My type of tumor is a total asshole. Not only does it take away your personality when it grows, but then it destroys your body beyond your control when it's not even active. It's exciting to me that I have now taken two different new medications that fight back — and the fact that I have an EXTREMELY rare tumor and new treatments keep coming just in time solidifies that God is here with me. I'm telling you, the power of prayer is real, and I practice this every single morning and night. I also started feeling like myself again and getting the energy of my prior self back. Yes, there are side effects like fatigue, headaches, and nausea — those should pass as my body adjusts — but I haven't woken up and felt good since February, so I am incredibly thankful for these past days. The spark is back. I know this because I feel like playing music again. I have no idea where this path is going to lead, but I am so grateful I can live in the now and take in all the blessings, day by day.
