Tuberous Disruptus

White Horse
Post: 

It started almost three months ago, a surpise seizure after a long, stressful day of travel. It really knocked the metaphorical wind out of me. I hadn't had a seizure since 2011, and had weaned myself off anti-seizure meds in 2013.

In 2010 my doc told me, “you have a normal brain, only scar tissue remains,” after almost 18 months of treatment for what had originally been “a very large” brain tumor. Last December I celebrated 5 years cancer-free and have been fully absorbed in setting up White Horse Wellness Center, a nonprofit, public benefit corporation providing all the wellness therapies that helped me, to my friends with cancer.

Enter tuberous disruptus.

It was originally suggested that hormones during my cycle could be a trigger for the seizures, as I could be peri-menopausal, you know.  A couple of MRIs and anti-seizure med dosage increases later, I now wholeheartedly agree with my doctors that the area in my brain previously known as scar tissue has been slowly changing/growing over the last few months and is the cause of the increased number of seizures I've been experiencing.

Turns out I'm not done putting the tuber in her place. She has started to rearrange the furniture in my brain as if she's going to be here for a while, but little does she know that I'm way ahead of her this time.

My oncologist says, “We beat it once before, and we can do it again.” Excellent.

I've met with a neurosurgeon who says, “Nope, surgery too risky and you have so many other options...” Whew.

A neuro-oncologist at UCLA says, “This is so exciting, they are doing so much research on brain tumors in your age group, and we'll find out if you qualify for a clinical trial.  Otherwise, the chemo that you used during the first occurance was very effective, and that is still a really good option. Plus, the tumor is growing so slowly, that we have time to make the right decision for you.” Exciting? If you say so!

And lastly, my neurologist says, “I'm really not surprised you're back – these things have a tendency to recurr.  The good news is, we know what worked and what to do and we can get started right away.” Yes! Loving the good news!

So, long story short, I started having seizures in February for the first time in almost 6 years. I began taking anti-seizure meds in March when the seizures became more frequent harder to control. And now, my docs and I are working on a plan to kick some brain tumor butt.

Oh, no you don't - I'm not giving up on my dream of helping others beat cancer through horses, art, movement, and nature, tuber or no tuber. Hi, ho White Horse, away!

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