Spinal Cord

I started writing this post almost a year ago, then stopped. I am going to try and finish it up.....

It's been a long time since I've written so let's back up some months:

October 2014- hands feel very stiff and numb, they feel like they are submerged in ice water. 

November 2014- neurologist orders MRI. He sees cyst, calls it syringomyelia, gives medicine, and thinks no more.

December 2014- hands are getting worse. Neurologist friend in the states recommends second opinion 

February 2015- Went for a 2nd opinion (with my friend Sandra, who had no idea at the time who I was). The sweet Doctor looked so young, but concerned, and orders MRIs again, but with contrast this time.

March 2015- MRI results show tumor inside the cervical spinal cord (you heard that correctly, inside). I see the best neurosurgeon in Medellin.  He highly suggest going to have surgery in the US where I have family. I'm amazingly calm after being told I had a malignant tumor in my spinal cord (call it denial if you wish).

April 2015- I consult with a neurosurgeon in the states via email that says leave immediately and come back to have this surgery, he says time is important.  (I am still calm).  He's completed 20 surgeries like this and all were successful (Dr in Colombia had done 5, and I'm unsure of his success rate, but he's done the most of these type surgeries than anyone else here).  I booked a flight on the 17th and left on the 19th, consulted my US doctor on the 20th, I had surgery on the 22nd.

Facts:

1. I have the best employers ever

2. Friends who are your family

3. Family who is family

4. Doctors who turn to be like family

5. Didn't have a clue what was about to happen to me.

First few hours after surgery, I realized I couldn't feel most my body, and I felt like I was wrapped in duct tape.  This is when I had my first freak out moment.  Thank goodness for my friend Mirna who rushed to the hospital.

Most painful thing I've ever had to do was to get out of bed the morning after surgery. 

I had to learn to walk again, get dressed, roll over, and needed help with countless other unspeakable things etc etc.

Spent 1 week in the best hospital with the best doctors.  My friends had to do unspeakable things for me (we don't talk about the specifics). I then spent 10 days in inpatient therapy and 4 months outpatient therapy, again the best OTs and PTs.

September 2015, Once I arrived to Colombia, I again started PT for another 9 months before I quit.

I still have trouble with things involving use of hands, very stiff and is hard to move, I still feel like I'm wrapped in duct tape.  Funny stories I could tell you here, but just ask.

Doctor thinks getting feeling back could take 3 years. Update: after my appointment in summer 2016, he thinks up to 5 years before I feel more normal.  Hand therapist thinks 18 months for hands. Update: I am now at 16 months post op, one can hope!

I'll need radiation. Apx 5 weeks, Mon-Fri. Trying to figure that out. Update: this could not happen. The team of neurologist in Medellin met up and decided that radiation with actually be more dangerous than not doing it. There is too much damage to the cord it could cause the cord to collapse or cause more long term nerve damage.

*Current Day*- written in September 2015

 

I'm afraid of using the "c" word, it's scary to admit it was part of you and will always be a part of you. It doesn't deserve to be capitalized, it deserves to be removed from the earth.  But my best friend basically said to me this week- tell people, use the word cancer, it's what happened to you, own it- you survived!

*Current current day*- August 2016

I use the "c" word, but I handle it all with humor. It's my coping mechanism, it's how I deal. I may make you uncomfortable with my cancer jokes, but it's what happened to me, I'm owning it..... BUT I still don't like telling new people about it.

I started back as a full time classroom teacher 3 weeks ago. I am so exhausted. But I am doing it. I want to thank Kelly Pierce for her positive words of love and encouragement everytime I get scared about going back full time. Also, thanks to my daily cheerleaders, you know who you are!

So here is my public service announcement. If you want to learn more about Ependymoma's the CERN Foundation has great info. There's even an ependymoma awareness day every April/May (I had my surgery in April- coincidence? I think not).

I am a brain cancer survivor!