Exposed: Paraneoplastic Limbic Encephalitis

It’s been exactly 15 days since my last post and I feel as if it’s only been 2. Since I’ve written, I’ve visited Austin twice, accepted a 30 Day Squat Challenge, started my volunteer assignment at Coastal Bend Business Innovation Center, and began another MBA course. I also had my very first Blackberry Iced Latte thanks to the folks at Green Light Coffee. Phew! I get tired just writing about two very short weeks but I’m smiling because this time last year I was not moving much. Based upon my iPhoto and video library, early 2016 was still a period of health uncertainty. I’d regained most of my physical strength post chemotherapy but my brain was still healing—“running on fumes” and experiencing bouts of “turbulence” as noted by my doctors. Therefore, if I couldn’t acknowledge my limitations caused by Paraneoplastic Limbic Encephalitis via Ovarian Cancer, neither could my doctors, family, or friends. These moments simply came and went as my brain found new neural pathways for my body to function.

This disease is so rare and at times crippling. It leaves not only you, but your caretakers at a loss of what to do. Everyday is a new day and with it comes memory recall and sometimes short term memory loss. It’s both strange and sometimes isolating. I often feel as if I’m living in some sort of Groundhogs Day that isn’t serving me much except for the fact that I can easily forget the good, bad, and ugly which leaves little room for regret. Seriously, I’m not sure why my life’s plan was set out to be like this but thanks to an ample amount of therapy and prayer I’ve come to know this:

To live in fear is to be crippled beyond your mind and body.

How I cling to these words and thoughts is not because of physical or mental strength. Yes, each day I embrace exercise and diet with trust that I’m not going anywhere, as in dying, and my cancer is in “remission.” I’m no longer scared because of my faith and trust that God wants me in this place, at this moment. A little grace from the man upstairs and a bit of effort on my part has healed me beyond the rounds immunotherapy that are quite hazy and not missed at all.

I’ve wanted to write about this journey but I’ve been too scared to share my feelings and even what little video I’m okay at looking back at with caution. I then reminded myself that this disease and cancer does not rule me! Sure, this digital throwback exposes me beyond my wildest dreams so might as well share, learn, grow, and maybe, just maybe, shed light on a rare medical perplexity that’s living inside of me (or maybe someone you know) everyday.

xo Moni

PS. The video posted above is of me experiencing involuntary movements and tremors due to Paraneoplastic Limbic Encephalitis via Ovarian Cancer – Teratoma. If this looks like you or anyone you know, I urge you to consult with your doctor asap.

Moni - Austin, Texas
Picture of me as of May 2017

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