Monday, November 9, 2020

11/01/2020 MRI Results

I just got my MRI results; they popped up with a "DING" in my cell phone notifications. The scan was over a week ago, and usually it takes much longer for results, so a fast turnaround dropped my heart into my tittle toe. Usually, in the medical world, the faster the results, the more concerning the situation. (Not always, but often in my experience.) 

I've been on an experimental drug, and although it clearly seems to be working, you never know when the ball might drop. I mean, I've had to hustle ever since I was diagnosed, ten years ago, so the idea of something really working is completely foreign. But it truly is working! My tumor has not grown since May of 2019. Call that what you will, but it feels like a freaking miracle!!!

For the record, I tracked this drug for over 6 years before I could access it. No joke. I have been calling and emailing the drug company to see if they participated in compassionate use yet. I watched it because although it's for a different type of cancer, the drug targets a mutation that I share. I have flown across the country a few times tying to gain access. I have tried to impress doctors, or tried to see if I could get access through mutual connections. I have turned down risky treatments, hoping for access for this safer option. I have been told that I had to do a 5th brain surgery in order to access this drug. I was told that the drug is too expensive ($25,000/mo). Thankfully, all of the hard work, the literal years and years, the doggedness, the fear, the listening to my gut when I was being pressured to tow the medical "line", are paying off. I never know how long the good new will last, but damn if I'm not going to have a glass of champagne tonight, and run in the rain in the morning!  

I'm clearly rusty with my delivery/writing skills, but I wanted to give you an update, and thank everyone for sharing this journey with us. For loving and supporting us. The next MRI will be in January or February. 

I am THRILLED to get the honor - and as cheesy as it is, it is a true honor - to get to be here, and feel sore from a workout, or try a new recipe, or laugh at my dog when she barks in her sleep. 

I still get to be here!!!! I am still here, and life is such a gift.

First patient MRI of the day, then a celebratory lap around Green Lake

Never had any sort of "cool" factor. (Ha!)
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