Wendy’s Story

Site created on February 14, 2019

On January 20, 2016, I went to the hospital for a routine CT scan to figure out why I was having dizzy spells. On that day, Mr. Jelly showed his face for the first time and thus began a journey of hospitals, doctors, tests, recovery, and relapse. And through it all . . . my special brand of humor. 

Mr. Jelly is a grade II meningioma, the likes of which no one has ever seen. Literally. Even the Mayo Clinic took a look and had to shrug. We all knew I was a one-of-a-kind, but in all seriousness, this makes it very difficult to predict what may happen next. Welcome to my brain tumor odyssey and big thanks to everyone who has supported me throughout. 

#mrjellytumorhumor

Newest Update

Journal entry by Wendy Schindler

Just gonna rip off the band-aid here... Mr. Jelly is back.
 
I’m at a loss and don’t know how to express how I feel (thank goodness for therapy). I’m not afraid of dying, so I’m not grappling with my mortality. I’m not sad or mad exactly… I’m annoyed? Frustrated? Exhausted as hell that I have to keep dealing with this?

Right now, Mr. Jelly is growing very slowly - like 3mm-in-two-years slowly. He’s not causing any issues for me because there is still an empty spot in my skull from the original tumor <insert empty head joke here #MrJellyTumorHumor>. And although he has the potential to cause a lot of damage if allowed to grow too large, he’s not cancerous, which means there isn’t any chance of spreading to other areas of my body. All of this “good” in tumor-land. If anything about a brain tumor can be said to be good. 

So now, I… just wait. We’ll do another MRI in six months instead of waiting a full year to check on Mr. Jelly’s growth (any sooner and there might not be anything to see). At that point, barring some disappearing-tumor miracle, I’ll most likely need a fourth brain surgery. 

My options will be craniotomy or gamma knife radiosurgery. Craniotomy is more invasive and involves a much longer recovery time. Plus, there are all kinds of things that can potentially go wrong when someone pokes around at your brain. Gamma knife would generally be the better option, but the first time I had it, I responded… “atypically,” and ended up having a severe episode of seizures, growing cysts, and needing a craniotomy anyway.

I understand that the situation is out of my control… there’s nothing I can do that I’m not already doing. But that sucks so much. All I can do about my tumor is live with the knowledge that he exists until I can have another MRI... in six months. Ugh.

What I can do is focus on self-care. So in a couple weeks, I'm taking a solo weekend trip to Louisville, and I will enjoy getting away from the daily grind, staying in a place where it's someone else's job to clean, and eating complimentary omelets every morning (HELLO, Embassy Suites). Also, I will probably eat copious amounts of cheesecake.
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