I’m not sure I knew of Badass Builder Girl Simone Giertz until this week, but BoingBoing shared a powerful video Tuesday and mentioned that her meningioma, Brian, decided to keep growing after her 2018 brain surgery last May.

Most of you remember my writings about my brain tumor. Simone’s public videos talking about her surgery and this latest one about her radiation, are touching, gut wrenching and inspiring.

Simone’s willingness to share and talk about her vulnerability while keeping her sense of humor and optimism is incredibly powerful.

I might get dementia…at 28 years old… but I’m trying my best to forget about that. . . . (smirking and giggling) that’s not funny, that’s really not funny, but it’s a little bit funny.

Badass Builder girl roboticist simone giertz

I resonated with her when she mentioned not talking as much about there still being parts of Brian left behind after her surgery. She and I have roughly the same kind of brain tumor, a meningioma and like me, my surgeon had to leave parts of mine behind too. Similarly, I haven’t shared as much about this part of my story.

From what I can tell, Giertz’s tumor was larger and spread further than mine did by the time it was discovered … the asymmetric white portion of her t-shirt is the part of Brian that was removed! That’s a lot of tumor.

The positioning of my tumor was not good, but Brian seems to have positioned himself in an even more not good way. The side effects she mentions such as blindness, deafness, dementia are scary, I’m guessing that’s partly because of the position of Brian in her head. Still radiation is successful at killing these kinds of tumors 90% of the time without significant harm to the patient.

I had five days of cyber knife radiation, which was very emotionally intense, and Giertz is in the middle of thirty days of I think a different modality of radiation, the kind I was very grateful I didn’t have to do.

She’s a courageous and inspiring woman and I very much wish her the best.

Frankly, I’m feeling a bit annoyed with Brian because as meningiomas go, from my understanding, he’s a bit of a youngster and kind of a stage hog. He’s ambitious and while he clearly has personality, I’m glad that Giertz is burning Brian this year. RIP dude, please.

Giertz is a hugely successful roboticist, teacher and YouTuber. You can support her process this year by subscribing to her Patreon page as I’m going to do right now.

As for me, I feel inspired by her to share a bit more. I’ve made it nearly three and a half years post-op with no measurable growth to my tumor. Yeah! Five years with no growth is the timeline that we look for in watching mine before I’m considered mostly out of the woods tumor-wise. But, radiation can have impacts of its own over longer periods of time.

Managing your healthcare is a part time job the first couple years after treatment, nearly half time for me through 2017. I’ve been hospitalized briefly once annually the past few years but I’m in good health overall. I’ve met a lot of phlebotomists. You want to wait to joke with them until after the’ve drawn your blood.

I’ve also learned the for profit health insurance system is a plague on our society which also does some good.

I know a fraction of what Giertz is dealing with and trust that she has the strength to face these challenges. Now, go to Patreon, support her…

Posted by Jeff Reifman

Jeff is a technology consultant based in the Pacific Northwest.

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