This is me.
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I am a 30 year old mother to 4 beautiful children (3 boys and 1 girl). I have been happily married to my husband for almost 5 years now. I come from a loving family of 7 siblings.
I look pretty normal, healthy, and happy wouldn't you think?
Now take another look at me...
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with some uninvited guests.
This cool dude hipster circled in red and his crew (cysts) took residence inside my spinal cord a couple of years ago and started to grow. How many years ago you ask? I'm not too sure to be exact, but in hindsight about 7 years ago I started having pain/discomfort in my left shoulder blade, which is one of the symptoms that this little bugger creates. The pain, along with some other (new and old) minor symptoms have been with me on and off ever since.
"It's not a Toomah" - well actually yes it is, known to the medical world as a Intramedullary Ependymoma, a Intrama-Ependa-what-a? Yup say that one 5 times fast! To me he is a big nuisance who now that I know about is interfering with my life - sorry hipster, if you aren't going to shrink yourself, and your pals aren't going to naturally drain themselves then you guys have got to go. I know if it were up to you you'd probably grow bigger in my nice cozy warm spinal cord eventually leaving me to be paralyzed. Or perhaps you'd make your way further up into my brain and call that your new residence. But, since we caught you when we did, you no longer have the opportunity to grow because you are going to be evicted. Unfortunately he won't go easily, HOURS of invasive surgery is the only way to get him out!
So to all of my friends and family ( friends of friends, friends of family, and complete strangers who are really just friends I haven't met yet) join me for the next few weeks/months as I prep myself mentally and physically for a journey that I never thought I would ever have to embark on.
Hi Eileen,
ReplyDeleteI was a 35 year old mum and my youngest was just two weeks shy of her first birthday when my adult ependymoma was "tentatively" diagnosed. Proper diagnosis didn't happen until after the surgery and pathology report. C2-T4 so it was a long thin one.
This was in 1996. I am now a still happy to be here mum of a now 18 year old beautiful young college woman. Surgery, I won't lie, it was the worse of any surgical procedures I had since. I had two children without any anesthesia, so please don't think I am a whimp with pain.
I have residual deficits with some sensory things, but those are much minor in comparison to any other issues. You have a lot to "get back" to, so take that in, and keep it as a driving force to get you and keep you motivated.
Remember that technology has moved on so much more since than when I had my surgery in 1996 that I imagine things will be so much better for you all around. Having a great Neurosurgeon and someone that you trust is a good start.
I did not have chemo or radiation. My tumor was an ependymoma.
So really, I wasn't a "cancer survivor" because it isn't cancer, so you are indeed in a special club of people.
Good luck on your surgery day - know that you have your loving family to be there with you on this journey and that you can make it to the finish line. Know that even if I am a "stranger" you will be in my thoughts. There are only a few of us that know what you are going thru! Take care!
Bev