April 16, 2010, is a day forever etched into my brain.
I went to see a neurologist, regarding numbness in my foot and lack of strength in my leg. He ordered an MRI.
I was barely back to work when his nurse called and asked if I could return to the neurology office. I naturally assumed nothing was wrong. However, when he entered the room, I knew by the look on his face that the news was not good.
I can only describe what happened next as "an out of body experience" - it was like watching a movie in which I was the lead character.
The neurologist said that I had a tumor on my spinal cord that needed to be removed as soon as possible. I tried to gather myself, but only managed to yelp, "A WHAT in my WHERE?"
There was a possibility my tumor could be cancerous, and it was located in a dangerous, complex area. For these reasons, Cliff, my wonderful husband and soon-to-be caregiver, and I decided to go to the best place in the world for treating cancer. So on April 24, my birthday, we headed to MD Anderson for our first visit.
The right choice
From the moment we entered MD Anderson, we felt that we had made the best possible choice.
Every person we encountered was helpful; especially those who could see that we were "newbies". We entered the hospital like deer looking into the headlights. The staff and volunteers helped us navigate the details of our many visits.
Neurosurgeon Laurence Rhines, M.D., professor in the Department of Neurosurgery, and Gisela Sanchez-Williams, advanced practice nurse in the department, were my primary treatment team.
To say they are extraordinary is an understatement. Dr. Rhines is a dedicated, preeminent spine surgeon with a wonderful demeanor and sense of humor. Ms. Sanchez-Williams' focus on patient care is legendary. My tumor turned out to be a non-cancerous ependymoma and the only way to treat it was through surgery.
Preparing for surgery
Cliff and I began our own research on ependymomas and the microscopic surgery I would undergo. We learned a whole new vocabulary, words such as proprioception, laminectomy and dura - terminology that doesn't normally come up at dinner parties.
Dr. Rhines explained the surgery would take around nine hours. Ms. Sanchez-Williams provided us with physical activities to do before surgery that prepared us for after surgery. For example, getting a sense of what it might be like to walk without feeling or sensation.
Both Dr. Rhines and Ms. Sanchez-Williams answered all of our questions while openly and thoroughly discussing all the possibilities we might encounter along this journey - paralysis, blindness, numbness, nerve pain, incontinence, sexual dysfunction and rehab therapy, to name a few. In the bestcase scenario, there would be "outcomes to overcome," Dr. Rhines said. This may sound peculiar, but we felt some relief and strength in knowing the true complications that could arise.
Time for surgery
The big day arrived on May 29.
My surgery went just as Dr. Rhines expected. As he had explained before the surgery: I had to learn to walk again with the loss of feeling in my legs and torso. He also told me that the harder I worked, the quicker the new neuro-pathways could be rebuilt. Damaged nerves have a way of healing on their own, but with glacial speed, meaning very slowly, so waiting for that to happen was not an option. I was not taking my wheelchair home.
The therapists stepped into high gear, filling most of my days with physical and occupational therapy. My goal was to go on a planned cruise through the Greek islands in August with just a cane, a mere two-and-a-half months after surgery.
I am still working to improve my walking, speed balance, jumping and skipping, but thanks to Dr. Rhines, Ms. Sanchez-Williams, the entire medical staff at MD Anderson and Cliff, I've recovered better than I could have ever expected. God bless them all.
I will be sharing more about my journey and living with sensory deficiencies at the 3rd Annual Spine Tumor Patient Education Conference, which will be held on August 29, 2012, at MD Anderson. The conference is a free event that addresses the needs of spine tumor patients.