Oh yeah, I had my other surgery!

Sorry I've been horrible about keeping up the blog. If it's any consolation it is because I've been feeling so well I've been out living my life and hardly thinking about my "little surgical setbacks." Paul and I and the boys have been greatly enjoying our new backyard and the slightly cooler weather. I spend most of my days in a hammock watching them play baseball, soccer, swinging, jumping on the trampoline or driving their motorized John Deere Gator around the yard - sounds terrible, doesn't it?!? (I'm telling you, I'm convinced I'm Houdini and getting away with a major heist!)

The surgery went very well! When they went in they said I had no measurable flow of cerebrospinal fluid (CSF) at all below my T1 vertebrae, that it was completely blocked off and still - which was not good. They also said all of my spinal cord nerve roots were bunched together by arachnoid adhesions and tethered in many places to the wall of the spinal canal, in addition to the main adhesion of the filum terminale. They also saw the tumor, which was larger than they expected and had several nerves adhered to the outside of it as well as one going right through the middle of the tumor. (so much for the doctors in Austin who said it wasn't intradural and certainly wasn't touching any nerves - PLEASE, PLEASE, PLEASE talk to me if you need a neurologist or neurosurgeon before going somewhere in Austin! I could tell you some very frightening tales...)

Anyway, they removed all the adhesions without incident. On average when they cut the filum terminale a person's spinal cord will rise around 5 mm, mine rose 5.2 cm (yes, centimeters)! They said it shot up like a rubberband. They had to do 3 more laminectomies to get the entire tumor and they said it was a very delicate procedure b/c they had to take a tiny piece at a time so as not to damage any of the nerves it was attached to...which they did perfectly.

The day after my surgery they let me stand and walk a couple of feet using a walker with someone on each side of me. The next morning they woke me up for meds around 6 am and I couldn't fall back to sleep so I grabbed the walker and stood up on my own (luckily Paul wasn't there - I had a shared room, so no sleepover guests - b/c he would have shot me!). I shuffled out my door and walked for about 30 minutes, then, like the biggest Christmas present under the tree, stood a coffee machine! Then it hit me like the disappointment of a child realizing it's not their present when I deduced that I could not carry a cup of coffee with my stupid walker. What an unfair world I live in. I walked my crippled self back to my room as fast as I could, ditched the walker and shuffled all the way back to the coffee machine in the adjoining tower like I'd never been under the knife. And, so began my speedy recovery!

On my caffeine journey I met another woman my age with EDS who had just undergone the same surgeries at nearly the same times, only in reverse order. She had equal determination, the same dopey stupor and addiction to coffee - It was friendship at first sight! We hobbled down the hallways together for several hours a day after that. Soon, if I wasn't in my room, my meals were delivered down the hall to Darla and Sally's room - such service! Our nurses made us write our cell phone numbers down for them and leave a note letting them know where we'd gone so they wouldn't have to call some "patient flight code." My nurse even told me I was the only patient she'd ever had that she had to chase around the hospital to give me my pain medication! I guess so much of it is perspective, and I am physically SO much better off now than I have been in over a year.

I am so blessed to have such a loving husband who has been by my side through this journey. I cannot imagine what it must be like to sit in the neurosurgical waiting room for hours upon hours waiting to hear how your spouse made it through surgery and then seeing the immediate aftermath - which is terrifying and SO not pretty. And seeing your spouse with two 10" scars and knowing they have been forever changed. I asked him if he thought I was a freak now (half-joking, half-terrified). I will never forget his response, "no way, those are the sexiest scars you have because they've made you feel so much better." Wow! That was the nicest, most reassuring thing he could have said.

I also have to thank my Aunt Sheila (my Dad's sister). God has blessed me so greatly through her. It was with her that I prayed to receive Christ, which will always be the most important day of my life. God has taught me so much through her and He continues to challenge and feed me through our relationship. Sheila came to NY to take care of me when I sent Paul back after 5 days to be with the boys. She flew by herself, rented a car, navigated NY during rush hour, endured a very interesting lodging situation that could be a post in and of itself, ministered to me physically and spiritually, kept me great company, shared Godly wisdom with me, taught me to crochet and bought me an MP3 player so I could listen to one of my favorite author's lectures on audio. If you are not familiar with Chuck Missler I encourage you to read some of his lectures or articles or listen to his audio files. God will get you thinking through this man's words.

There are a million other people to thank, but that is all for now...I will devote a special post for that soon.

I love you all and thanks so much for your continued prayers and support.
April