I’m always all about the why. Always curious to how each new experience will help shape me and/or my views in any way. Sometimes, I even wonder if a situation may become a story to share to help others. Social media can be a beautiful tool. It can create friendships, community, awareness, and so much more. But most of all, it can do all these things and more when it’s bare-naked truthful and vulnerable. When it’s not hidden behind a mask of what others will think. God tugged and tugged and tugged at me to share the story I’m walking in now. So, here we go.
I’ve been recently diagnosed with a tumor on my spine, wrapping around and extending into my right psoas muscle. It’s called a neurofibroma. It is benign. I will never forget taking a walk with Luke after dinner on an evening in September and saying to him, “Something is going to happen. Something is coming. I can feel it.” After two months of doctor’s appointments, CT scan after CT scan, an MRI, an unsuccessful aspiration, we were at a loss. Multiple doctors had told us there was no way they could operate due to their fear of the risks at hand, all the while, my symptoms worsened. Last Sunday morning, November 12th, my right leg had begun to go numb. In ran Orlando Regional Medical Center. Every. Single. Nurse, doctor, PT, told us how glad they were that we came, and how glad they were that we came NOW. After 10 grueling hours in the ER, angel among us PA Pat ran in, grabbed my hand and Luke’s and said
“I’m in. Are you in? I’m in.”
We wept like never before with relief. We were finally going to conquer this. By Monday morning, I couldn’t wiggle or move my right toes, couldn’t lift my right knee off the bed, and from the thigh up I felt nothing. 7 hours of surgery involving spinal deconstruction, partial tumor removal, spinal fusion, hardware placement, and a whole lot of fuzziness afterwards, my family tells me I victoriously wiggled my toes and thrust my right leg in the air (probably far harder than I should have…) shouting, “LOOK WHAT I CAN DO!!!”, to everyone who passed by post-op. My right leg had been salvaged. Praise God.
You may feel crazy, you may feel like no one will listen to you, you may feel like maybe you’re overreacting….but please, please please…if you feel in your gut something is off, do something about it. You will probably run into doctors who will shrug you off. One of my first ones, pre CT scan, told me my symptoms sounded like kidney stones and I basically needed to learn to deal with it. But Luke and I knew there was more to the story. So one step at a time, we fought for a resolution. Fought for more imaging. Fought for more answers. And finally, the diagnoses did all the talking for us. There’s no denying an 8 cm mass.
ORMC…they stood next to us and fought right beside us. All the while showering us with hugs, education, reassurance, and as much comfort as possible in a situation like this. There is still some fighting to do. Due to the size of the tumor and where it grew in one of my nerves, they couldn’t get it all in one operation. We will be followed by our Hero, Dr. Hirschl (who happens to be a Buckeye! O-H!) within the coming weeks to discuss next steps, physical therapy, possibly more surgery, radiation etc. (you know me, I’m already thinkin’ my dearest lavender oil will do the trick). We don’t know what the next steps look like. As of right now, it will be 3 months until I can lift anything heavier than a half gallon of milk, run, dance, jump, bend completely, walk comfortably, etc. 6 months until I’m feeling a lot more normal. And 1 year until I’m at 100%. But what we do know is that we are in the exact right hands at the exact right time.
Needless to say…Orlando Family, we will be in town for the coming weeks. We’d love to see you. Please pray for Luke and for our families. This is as much their new normal as it is mine. And if any of you are reading this and feeling that same little tug that something is off, please, please, please, listen. to. your. body. You only get one. Be your own biggest advocate. And you’ll eventually find the right team brave and passionate enough to fight along with you. I promise.
Hugs and Warm Thoughts,
A Now Semi-Bionic Spined Kelsey