Kristen’s Rolling Wheelchair Life-SCI & Ependymoma
Donation protected
Sounds like a made up word, Ependymoma, think Jason Momoa, Ep-en-die-mow-maa, just way less sexy & definitely not earth friendly. Nor human friendly. So this evil speck took me down, fast, hard, & no warning. While brushing my teeth, I meet the floor, can’t feel my leg & no control of my leg, no sensation even when I touch it. I had tripped at work in my classrooms 3 times that day & didn’t know why. It Just wasn’t being a leg anymore. Quick, To the ER! Jan 22nd, 2020, 35 year old teacher, cubscout den mom, daughter of the coolest veteran now part terminator w/his shiny new hips after being Airborne one too many times, proud sister & wife, LMT, & GOD fearing science nerd almost was broken in half by a brain tumor that went south down into my spinal cord instead. It is usually, in children & teens, this ‘thing’ was a bit bigger than a large gummy bear Inside of my spinal cord. 5cm x 3.9cm. Imagine a straw is your spinal cord, now stick a gummy bear inside it about half way down. Pour some liquid into straw. No more cerebral spinal fluid flowing…Yeah, so no more legs. No more thoracic body normalcy. T-6 down is inert, disappearing function fast. My dr was not wasting time w/tests as soon as the ER couldn’t figure out base reasons. By Jan 27, tons of MRIs finds the evil speck, immediately put in hospital. Lots of fun poke & prods, more MRIs, spinal tap, catscans, promptly told, dead by spring. OR try crazy ass surgery & likely won’t survive it, but if I do, never have legs back probably & it has caused an SCI. It’s obviously making other leg go numb now, it is getting worse & tumor seems to be growing, fast, so no guarantee of bladder, bowel, sexual function either. Wheelchair ♿️ will be in my life forever. Won’t make it to Spring alive at this rate. Ok. No brainer, try the surgery. And now, I get to be partly “spineless” the rest of my life, no more T6 to T10 spinous processes. You know the nub- bumps you feel when you pet a cat, dog, rub your kids back? Yeah, that whole section of my spine is gone. But, I lived through the surgery. Thank God. I still get to be a mom. The pain…I’m pretty descriptive w/words…but there aren’t enough words in any language to explain what being burned alive from the deepest dead center of your very being, while someone dumped creepy crawlies under your muscles at the same time as being stung by hives of bees & electrocuted shocks that made you think Zeus had moved into your body to play lightning tag w/his enemies who were really talented at stabbing you w/molten poke irons. So I tell satan to suck it, I’m not quitting, I’ll pull myself from this hell. And then,
Oh!! I could feel when I needed to pee even w/a Foley catheter. Super unexpected to the massive team of Drs I now have. Who said I would never get my right leg back, the nerves were crushed beyond repair by tumor. And my left leg might get something back many years down the line w/lots of Rehab. But everything T6 down is destroyed. I hated the meds, they barely touched the pain for 30-45 mins. And made me loopy & WIDE awake. Steroids in an open drip line. Like pouring coffee the marines made directly into your veins. I slept maybe 2-3 hours a day. I started seeing my dead family members. But the pain was insane w/meds. So I had to play the game to get cleared to get out of NeuroICU & into a surgical rehab floor.
Worse news, Not all the tumor was able to be removed. So radiation will happen. It grew fast because it broke the blood/brain barrier, it’s a tumor that needs testing to see if it will come back. So I told satan to suck it. I told GOD no poop bag. And that week, I started to be able to move a few toes & twitch one muscle of my knee on the left. And then my right toes 2 weeks later.
So tumor was aggressive, smart, grade 2, but not cancerous. So no chemo, but Radiation treatments for 28 sessions on T2 to T12 entire chest & abdomen & all organs connected in there full circumference around me. And MRIs 2xs a year for decade, then 1x a year rest of my life. And Wheeze as you breath like you have asthma for a while, Especially in high humidity still. And nausea/puke a lot & lose all the muscle strength you rebuilt after living in the hospital for 2 months. (Oh yeah, and Covid chaos began, shutting down the hospital visitor access so I didn’t get to see my family for 4 weeks of the last month I was there ❤️.)
Finally get home very end of March 2020. Can’t do anything in my house. Can’t reach up, can’t lean over, because I can’t get myself back up. Covid takes a seat, finally I get into an outpatient PT program & learn to roll yourself over laying down, how to sit up, rebuild spine strength. So life is A rollercoaster I never wanted my kiddo to ride. I’ll never get to ride roller coasters again w/him either. ☹️ Spinal Cord Injuries are different for everyone. But an SCI, they are for the rest of your life.
2 1/2 years later, still making strides in PT, I can stand and let go w/one hand for about 20 secs. I have started walking w/adaptive equipment. (Not safe to do it at home yet.) I still struggle w/pain & severe muscles spasms in my lower half T6 down. And when I’m standing or taking those steps, it feels like my spine is on fire. And it makes my body go into chaos that lasts a few days. But, I can do it. It’s less time to recover than before now. Instead of 4-5 days I’m stuck living in the couch on ice packs, it’s 2-3, after PT sessions or activities w/my kiddo or just going to a Dr appt & wheeling through monstrous buildings. However, My ‘evil little speck’ left over (down to 3mm!) of Ependymoma hasn’t regrown or moved. So no more Radiation so far! And as of Feb. 2022 I passed the adaptive driving w/hand controls training! Woot woot! Some freedom back & when I get cleared by the Dr team to try to go back to work part-time, I’ll be able to! My wheelchair is still my other half. My kiddo is my biggest helper & my joy. My reason to keep praising GOD & Christ, getting up & moving & telling satan to suck it. But the medical bills, medical & rehab equipment, wheelchair repairs/care, new body lifestyle needs special personal care items, 2MRIs a year & adaptive equipment & vehicle I can drive, is all very costly. And I’m still not able to get back to work yet. And losing my income ate up all our savings, tithe, future school for kiddo. And I still have more tests, my NeuroOncologist, Radioncologist, Phys Rehab Dr & PT to go to throughout each year off & on. Finally got the Neurosurgeon paid off this year! Still paying the Neurologist, Anesthesiologist, Urologist for SCI patients, & a few other specialists I don’t need now. Insurance limits how much PT m/OT I can have access to. And they won’t let me go to a specialist Neuro rehab & pain management clinic down in Dallas area I’ve found tons of research on that makes a big difference for people w/similar nerve damage, loss of muscle control & strength, & nerve pain I deal w/every moment of every day. So if you got some help to offer, My family would appreciate it more than we could say.
Organizer
Kristen Hocker
Organizer
Kansas City, MO