Birthday Bittersweet

I love celebrating other people’s birthdays, but I like to have mine pass without much fanfare. Yesterday was my 37th birthday, and I honestly went back and forth on deciding to celebrate in a bigger way than I normally do this year. YOLO, right? Why NOT have a huge party every year that I’m alive!? But also… last week I was so tired with chemo — it was nice not to plan anything, too. At the end of the day, I’d describe it as great– but also strange.

The great: I was able to unplug from my to-do list, and only do what I wanted to do. I spent time with my family, played with the kids and I cooked new foods (including this amazing keto brownie cheesecake). My parents called me and sang happy birthday on speaker phone. I opened many messages, gifts, cards and was reminded how much I am loved and cared for by so many people. It was a beautiful day, and I drove around in the sunshine. I was able to be grateful for so much–and was able to really enjoy that happiness.

What made it strange? I guess it feels kind of wrong to celebrate time passing when you know you have a ticking timer in your pocket. Of course, this has been the case for every birthday I’ve ever had — everyone dies, and I’ve known that since childhood. But this year– it’s an entirely different feeling. Three months ago I was given the name of my internal assassin, with a summary of statistics of how well she usually does the job. I’ve used the tools at my disposal so far to fight back– surgery, chemo, and there’ll be radiation down the road– but still, this assassin is there. Modern medicine doesn’t yet know how to overcome oligodendrogliomas.

When I was born, to the surprise of my parents, I was sick. I had undiagnosed congenital heart disease– a rare combination of heart malformations that made it hard for me to gain weight and grow. I had life-saving surgery when I was 14 months old– surgery that would not have been possible just 5 years before that! At the time, I was being treated with cutting edge modern medicine, and it saved my life. That’s so crazy to think that if I had been born just a few years earlier I wouldn’t be here today. It makes me feel like my whole life has been a gift! And I am so thankful.

But, my experiences as a patient growing up have given me another outlook today: I’ve been here before– in this space of need. I need a modern medical breakthrough in order to survive. I’ve been the “exception to the rule” before– but I hope that this time I am part of changing the rules–to help find a cure, and then being able to grow old for real.

Take a look at what I’m doing to find a cure here.

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