This post has proved much harder for me to write (and share) than I had anticipated. Yet it is necessary because it is the very reason that I have created this blog. I wanted to be brave and start sharing more about myself and my life with the world. And my impetus to be brave is this post…
I have a meningioma growing in my brain. It’s a tumor that is typically slow growing. But mine has been growing at a decent clip. Per the UCLA neurosurgery website, meningiomas are often “slow growing,” increasing in size only 1-2 mm per year. Mine grew 7 mm in one direction and 6 mm in another direction in the first 12 months of observation. That’s quite a bit more than “slow growing”!!
So then my neurologist had me do an MRI after just 6 months. This time it grew 4 mm in one direction and 2 mm in another direction.
My brain grape size:
2.8 cm (anterior-posterior aka front to back)
1.5 cm (lateral aka side to side)
2.7 cm (cranial-caudal aka top to bottom)
It’s about the size of a Scuppernong grape. Imagine a grape squashed between my brain hemispheres and then pressed into the right hemisphere. Fun, right?!
My meningioma (aka brain grape)
Here’s the view of my head from above:
Here’s the view from the back:
And here’s the side view:
After my June 2025 MRI, my neurologist immediately referred me to a neurosurgeon! Which is precisely what I would have wanted! I’d already started looking into neurosurgeons in January (when I saw the results of my 12-month MRI).
I saw the neurosurgeon for the initial consultation on July 8th. I had already decided I wanted to proceed with surgery because my meningioma was showing no signs of slowing down its growth rate and that’s what meningiomas do; they just keep growing. If they’re slow-growing a lot of people wait until they have symptoms and then take them out. Mine is growing way faster than I would like, and I have reviewed the list of symptoms I could look forward to with my type of meningioma (right parafalcine) and none of them are even remotely appealing!!
When I came in for the consultation, the surgeon initially started off saying meningiomas are usually slow-growing… I stopped him right there. I had already typed out my recent history and what my thoughts were about wanting this thing out of me BEFORE it starts causing symptoms. He read over my story (pausing halfway through to say, “this is great!”), looked up at the end and said: Okay let’s get this thing out!!
It was so validating and supportive to be able to make a coherent argument to a provider, have them hear and comprehend that argument, and agree with me and take steps to do the medically responsible thing.
I have experienced a ridiculous amount of medical trauma throughout my life. That’s a story for another day and another post (probably a long series of posts, if I’m ever ready to share). It was such an incredible feeling to have a provider be on my side, and truly be present with me and pay attention to what I said. I will add that writing out my thoughts and having the provider read them made a huge difference I’m sure. Everyone takes in information in different ways and has different learning styles. But you don’t get to be a board certified doctor if you don’t absorb information well through reading things. While doctors do attend lectures in medical school and obviously go through extensive practical training, much of the early part of their education involves absorbing voluminous tomes of information in written form.
I guess when one writes, it helps to know your audience!
Why Brain Grape?
You may be wondering why I titled this post “My Brain Grape.” That is an excellent question! And to answer that I will point you to the similarly excellent TV show The Librarians (2014-2018). I am grateful to the creators and writers of that show. It was an incredibly entertaining show that presented the idea that there truly is magic in the world and there is a Librarian who is tasked with keeping it contained and keeping the world safe. The TV show was based on a series of movies. But in the TV show, instead of a single librarian, they had 3 librarians. And one of them, the only woman librarian, was named Cassandra Cillian. And in the very first episode we find out that she has a brain tumor. Hers is not a meningioma, but it seems slow-growing enough that it has been monitored for some time and continues to be monitored in the early part of the show. She describes it and says it’s about the size of a grape. And notes: Which is too bad, because I used to really like grapes before…
In the third episode, another character refers to it as her brain grape. And that’s what it was called from then on. She had occasional crushing headaches from it, but otherwise seemed unimpaired. What I loved most about her was that she was a brilliant mathematical genius who could visualize math problems and do complex calculations in her head. And of course she was also quirky and did her best to be optimistic and supportive. She provided a beautiful balance to the rest of the characters. I really identified with her spirit and energy and adorable wardrobe choices. For those of you who didn’t know me in high school, which is probably most of you, in senior year I often wore really quirky clothes that were almost exclusively from vintage and second hand clothing stores. My goal was to never look like anyone else at school and always have a unique look. And that feels like Cassandra’s spirit. And of course I worshipped how intelligent she was.
Then in the third season she suddenly collapses and another character takes her to the hospital. She had been resistant to surgery because she felt like her brain grape was potentially helping her become more of a genius. But at this point her surgeon tells her that she has to get it out because it is threatening her life. She ends up having brain surgery to remove it. She was so scared that it would remove some essence of her. Yet when she woke up after the surgery she looked around and found that not only was her genius intact, it was actually significantly enhanced.
[An interview with Lindy Booth, who plays Cassandra, about the surgery episode and more.]
OK so I know the TV show is made up and is about magic in the world. And yes I know that removing my brain grape will not make me more of a genius. But maybe… And the main thing was that I saw a model on TV of a person who had a tumor growing in her brain and went about her life and then proceeded to have it removed and was still completely her and even better.
Mind you, I watched the show 4 or 5 years ago. And only found out about my brain grape in December 2023. But considering the size it was when it was first detected, I most likely had it already growing while I was watching the show. So once I found out in January (2025) that it was growing much faster than it should be, I started considering surgery. And I don’t think I was consciously connecting the dots to my favorite character, but by the time I had my follow-up MRI in June of this year, I think the dots were all connected. And when I got the call to set up my initial appointment with the surgeon, all the pieces came together and I immediately felt like if she could do the surgery and still be her and recover and continue to be awesome and amazing, then so can I.
I am proud to have a brain grape like Cassandra Cillian had. And I will also be perfectly happy to have it removed, just like her!!
And this brain grape and my impending brain surgery are what moved me to finally be brave and create a public blog. I don’t know what will happen and the surgeon explained that the risks are pretty low. But you never know. And when confronted with your own mortality, you sometimes take stock. I thought about what I wanted to put out in the world. And I realized that I wanted to put out pieces of my essence and my creativity and do my best to have more people know a little bit more of the real me.
Thank you for going on this journey with me. 💜
I am here. I am now.
You are here. You are now.
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Addendum:
Symptoms of my type of meningioma:
Location – Parafalcine (arising from the meningeal layer between the hemispheres of the brain)
Common Symptoms:
Seizures, lower extremity weakness, headache, personality changes, dementia, increasing apathy, flattening of affect, unsteadiness, tremor.
Back up the neurosurgeon section
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