Now that I have a date for the surgery, I need to make a note to myself so I can refer back to it on the dark days of the recovery. I need to remind myself of the reasons for the surgery. I need to remember that I landed here after having the ability to swim taken from me by pain that seems to be attributed to this tumor. I need to remember that the strange sensations and pains in my leg, hip, back, and abdomen will only get worse (not better) with time and that I need to confront my fear, trust my doctor, and jump towards the only hope that I have of regaining what I have lost and maintaining what I currently have.
I need to remember the times when I have lost my balance, when I’ve fallen, when I sat on the floor because the chairs were too uncomfortable, when I chose to skip a movie or a concert because I didn’t want to sit that long. I need to remember that while these things may not be better after the surgery, they will certainly, slowly but certainly, get worse with time if I don’t just jump.
And so… now… I’ll jump.
So far I have been able to deal with my diagnosis in a largely abstract/academic manner. I have researched and planned and studied. I have been able to talk about it calmly with coworkers and family members. In fact, they have all been amazed by my composure in the midst of all of this. Then the phone call came… telling me that the surgery has been scheduled for December 13th. That is just 10 days away. And as I calmly spoke to Maria from admissions, I felt a rush of panic rush over me. I need to remind myself to breath. I have faced challenges before and have made it through darkness, and I’ll do it again this time because I am strong!
“I’ve battled demons that won’t let me sleep;
Called to the sea, but she abandoned me.
But I won’t ever give up, no, never give up, no, no
No, I won’t ever give up, no, never give up, no, no
And I won’t let you get me down
I’ll keep gettin’ up when I hit the ground…”
Today I would like to share another resource for everyone out there trying to understand spinal cord tumors – CERN Foundation
I first learned about the CERN Foundation because some of the other folks on the SCTA Facebook page mentioned it. The CERN Foundation focuses on one particular type of spinal tumor – ependymomas. Their site has a wealth of information about these tumors. They provide links to support and resources for people coping with ependymomas. They also help to put people in touch with research centers if they are interested in taking part in clinical trials.