Welcome to my journey with Neurofibromatosis type 2, known as NF2, a genetic mutation which causes numerous tumors to grow within my brain and spine. Since 2004, I have undergone radiosurgery and 3 brain surgeries for 7 brain tumors. Life with NF2 is definitely a test of faith and a challenge to keep positive. Join me on my harrowing adventure to keep active and live life to the fullest!
Saturday, October 17, 2009
Driven
Although it has been an emotional last couple weeks, I have kept up with my training never faltering. My regimen included a weekly session with a personal trainer working on balance, focus and core, 3 days of strength training a week, weekly water aerobics, at least 10 miles of running a week (3 days of running), and doing exercises on my own time that my trainer taught me. Obviously, I take preparation for surgery very seriously. My goal is to go in as strong as possible to give myself a fighting chance and hopefully bounce back quickly in recovery. I also need the strength to tolerate getting through the surgery, waking up from it, and getting back on my feet after a week of lying in the hospital followed by a month away from the gym. In a state like that with NF2, muscle weakens fast and balance deteriorates rapidly. My pursuit is to hold on to my present quality of life for as long as possible. If I can actually improve/enhance it physically, well that is just tremendously phenomenal!
There was no holding back my last 2 evenings at the gym Thusday and Friday. I met with my trainer a final time on Thursday, walked the dogs for an hour, and then came back to the gym for my strength training on my legs. I did not go light on the weights at all and if anything I added another 5 lbs more than what I normally do to many of the exercises.
There was something about the feeling of finality that drove me to make it count - my last big effort before surgery. It felt sort of odd like I was going away on a long vacation or leaving a job to move on. I really did not want to leave and if it were not for the constraints of time, I probably would have stayed until I completely exhausted myself.
As I mentioned in a previous post, a friend very dear to me passed away last week from leukemia. I was pretty crushed but I finally came to realize that the best way to honor him is for me to continue being Rebecca and to carry/pass on his goodness. For me to accomplish that with NF2, is to keep myself as healthy and as strong as possible in order to have the stamina to do as much as possible. A very important first step toward that mission is to be in an optimum condition mentally as well as physically.
When I got out for my first run of the week Tuesday evening, I thought of Skip and remembered when we met as teammates training to walk the full Seattle marathon in 2006 for the Leukemia and Lymphoma Society. He had just been diagnosed with leukemia and I was astounded that he planned to continue with the training while he went through chemo. He was in his 60s, and I could not even imagine myself doing something like that when I went through chemo at age 21! I admired his tenacity and spirit.
I reminisced of the good times we had training visualizing all the pictures I had gone through on my computer the night before. The day of the marathon he exuded such strength. I reflected on how challenging the training and feat must have been for him. Still, he pressed on and accomplished his mission. I also thought about how difficult the summer had been for him in and out of the hospital continuously and the increasing uncertainty of life. Although he was pretty weakened one of the last times I saw him a few weeks earlier, he never stopped being Skip and the true person he was.
Thinking of all these things, I was inspired to keep running. I recalled how after my first surgery, I wanted to work up to running a 10k and I wanted to do it by the end of the summer 2008. I was not sure if I could. Maybe a month or 2 after surgery, 10-15 minutes wore me out. By June, I had worked up to running a 5K and ran 2 5K events that month one week apart. The possibility of a 10K however, eluded me. I had made it to 5 miles. When I told Skip, he believed I had the ability to run a 10k which was only 1.2 miles further than 5. You know what? A week or 2 after he told me that, I went out and did it!
So I kept running determined to run a 10K in his memory. It had been since May that I ran that kind of distance. But when thinking about my friend and all he went through, the 10K all of a sudden seemed pretty easy in comparison. Funny how my friend was motivating me even from the afterlife to keep pushing before my surgery.
The pictures shown -
This is a great exercise my trainer and I did that involved multitasking, visual focus and coordination. I had just completed a fast 10 minute run to warm up and this was a good exercise to start out with as my double vision occurs after that length of time and intensity of running.
How it works is the 4 medicine balls of varying weights are arranged on one side of the mat. I pick up each ball and pass it to him like you would pass a basketball on the court. The medicine balls weigh anywhere from 2 to 10 lbs making some harder to throw and some unexpectedly easy. Therefore, you need to also pay attention to the intensity in which you throw the ball.
So I pass each of these balls to him and shuffle to the side for the next. When finished, we quickly exchange sides of the mat and repeat the exercise. It wears you out pretty fast! When I get tired I still need to keep form by bending my knees into a squat instead of bending at the waist to pick up the ball. The shuffling to the side is challlenging with my balance and as we progess, I start to slow down. I like this exercise because it is working on so many different things at the same time. Not only is it physically conditioning me, but also building new brain pathways and practicing vision therapy.
Well I have done all I can do physically - ran the past 3 days in a row. Now is the mental preparation that I am presently doing at the beach on the Oregon coast. It is working and I am SO GLAD we took the opportunity to do this last preparation. THANK YOU Christie and Dave Hammond for inviting us to stay at your beach house before the surgery! We LOVE it here! Harley and I are getting in some much needed relaxation. It really helps put things into perspective and to rejuvinate the soul with positivity.
I have done all that I can do. My fate is in the hands of the surgeons and God now.
2 more days to get my frame of mind together.
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1 comment:
You rock Rebecca! You are in my thoughts. You continue to amaze and inspire me.
Peggy Schumann
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