Intramedullary Ependymoma – My Journey

Intramedullary Ependymoma – My Journey

Name: Sarah
Type of Cancer: Intramedullary Ependymoma
Diagnosed: Age 44, 2012
By: Sarah
— Categories: Adult   Spine  

Sarah’s blog, Intramedullary Ependymoma – My Journey, documents her journey with intramedullary ependymoma: a real look into surgery, rehabilitation, and treatment with a little bit of humor. Here are two excerpts from her blog.

Introducing Herm the Worm

April 17, 2012

This is me. Well, me and a visitor. A creepy dude that doesn’t belong, taking up some prime real estate inside my spinal cord. Squishing all the nerves that are entitled to a peaceful and roomy existence. That big blob (circled in red), isn’t supposed to be there.

He’s known to the medical community as an intramedullary ependymoma in my thoracic spine (more precisely … inside the spinal cord in the thoracic region). To me he’s Herm the Worm – a guy that took up residence 7-10 years ago and got all comfy cozy and started to grow.

I suppose the good news is that I’m not a hypochondriac … the 7 years of mysterious symptoms, mostly attributed to my compulsive running habit. Years of foot tingles, shin tingles, burning sensations in my thigh. Two years of searing back pain at 3 a.m., which mysteriously disappears as I walk around … all explained by Herm. I was a bit of a medical mystery during those years, and I remain so today. Given the size of the tumour at its widest, my neurosurgeon isn’t sure why I’m still able to walk.

Well, Herm’s gotta go. Left to his own devices, he’d paralyze me within the next couple of years. Unfortunately he won’t go quietly … he’s more like the tenant from hell that you wish had never moved in. Big, bad, ugly surgery is the only way to evict him from his cozy home.

So, to all my friends and family (and complete strangers) who wanted to share in the journey, I’ve caved to the pressure and joined the blogging world.

Let the fun times begin.

Today I Take Nothing for Granted

April 30, 2012

I suppose I’m lucky.

I have the strange fortune of having a serious issue without any significant risk of dying. Serious enough with risks enough that I am spending my final pre-surgery days appreciating the small things. Serious enough that I’ve had the fortune to see how many lives I’ve touched. For many people, this doesn’t happen until after they die, and then it’s too late for them.

Yesterday I did a long spin class. I worked hard, my heart pumping, my legs burned with exertion, I sweated and I looked impressive (if I do say so myself ). It will be at least 6 months before I can even get on a spin bike again.

I drove the car. A small thing, independence. The freedom to come and go, even if it is the tediousness of doing errands, or the excitement of finding trashy novels for 50 cents at a second hand store. It will be a while before I drive again.

I sit comfortably on the couch. Feet up on the coffee table, sipping coffee, laptop on my lap, TV on in the background. Sitting is going to take a couple of weeks, and even then it will be in small doses.

I ran up and down the stairs, doing laundry, tidying up, lifting, bending and reaching. I will spend the next couple of months relying on other people to do that for me.

It’s a weird thing, this appreciation. I can’t actually know until Thursday, how much I should appreciate today, yet I think about appreciating the things I can do today. Is it possible to really know? I don’t think so.

But in the meantime, I’m thankful. Thankful for those people who are thinking of me, praying for me, helping me, supporting me, preparing to do those things I won’t be able to do, only because they care.

I will have successful surgery, I will get better, and someday it will be my turn to be the person thinking of you, helping you and supporting you. And I will do it without hesitation. Because you have touched my life.

Read more stories from Sarah’s blog, Intramedullary Ependymoma – My Journey.

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