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!)

My 10 yr Cancer Anniversary

Today is my 10 year DD (diagnosis day). I know I'm not very good at sharing my health status, or managing my social media, but there is such a beauty, and safety, when you slow your external life. Not much has changed with my health, I'm still navigating cancer, and jumping through health hoops, trying to follow my intuition, and fighting for what I feel is right for me. There have been plenty of scares, disappointments, bad news, and I have turned down several treatments as I continue on this journey. Currently I'm hoping that an experimental drug will keep my tumor at bay.

I am sorry that I can't be as open as I used to be, but I want you all to know how grateful I am for your kindness, support, and patience over the past 10 years. I remember hoping for 5 years. Then hoping to survive the 4th brain surgery. I truly can not believe that I am sitting here, 10 years after being told that I had a "massive brain tumor" and that the doctor "wasn't sure if I would live."

Especially today, I keep thinking about how grateful I am to be here on Earth, in this human body, able to smell the spring flowers, to see the little sprouts popping up from our vegetable garden. I can't believe that I'm here - that I'm alive. There is so much wonder and mystery in this human experience, and I get to be here to witness and participate. What a monumental joy!

Since these are unusual times, with necessary adjustments to daily life, instead of celebrating with friends and family, I woke up at my usual 6 am, wandered toward the kitchen to start the kettle for our French press, expecting to get a few moments with Dan before he would head out for work, but instead, the house was lit by candles, with handmade cards. It was magical, and romantic, and very unexpected. He had taken the day off, to celebrate our life together. To acknowledge the hard work that I (we) have put in, the sacrifices I (we) have made, the memories that we have created, the life that we get to relish in.

As an immune compromised human, I'm scared of any threat, let alone this pandemic, so I have been in self quarantine since February. I rarely even go for walks because the few times that I've tried, there's inevitably random runners that sweat past me causing great anxiety (valid or not). But, as I was watering our vegetable garden this morning, all of a sudden there were SO many car horns! And as I rounded the corner, I saw a literal parade from my girls in the Edmonds Walking Group (see the video below). Dan barely managed to grab his phone to record part of it. These ladies are angels. I honestly don't know what my life would look like without them. I learn so much from their prospectives. We laugh, they give me a lot to think about, and they're gracious considering I'm opinionated and often naive. They have taken care of our house, and our pets, during brain surgeries. They even mended our garden, mowing the lawn, making everything better. These women treat me as an equal, and help me feel strong and capable even when I feel that I'm not. I love that we take care of each other. And as they paraded by our house, three times in a row, beeping all the way, I laughed gratefully, as my heart continued to mend from all of the hidden pain that I've tried to ignore. 

I don't know why I get to live this fabulous life, but I'm so very grateful!