As I started brainstorming this year’s NF Walk Team name, I got thinking of different things, mostly the “what if’s” of life. Since ending the Sirolimus chemotherapy in November, I currently now have no treatment options. Although my tumors on the MRI show no change, I still live daily with the increasing side effects and depend on the steroids for keeping the tumor pressure down as best as possible. MRI scans only reveal tumor size; it doesn’t show density or if the tumor is hardening…these affect tumor pressure, resulting in side effects. I have no control of the amount of numbness that continues to spread over my body, increasing weakness of muscles, or my intestines, balance or even the cataracts.
Back in November, it was my choice to end all treatments. I gave the chemotherapy a solid trial, but it turned out in an unbeneficial result. I wanted to live life without the extraness. And I have. I went to my February appointments and said that I had no regrets! And I meant it. I left my February appointment in good spirits; my doctor wanted me to have an “extraness free summer.” 🙂 Hardly two weeks later, I started to notice some change, especially in my right hand. Almost four months later, I am not the same Mel.
A day such as Monday, broke me down. My physical state frustrated me to no end! By mid-evening, my mind’s thoughts were like spaghetti. I stood by my bed clutching my walker and in tears I looked out the window It spoke what words couldn’t say: outside I saw sunshine, wind in the trees, blue sky–freedom, yet I was trapped in a darkened room. I allowed myself to give in to my fears, uncertainties, questions. Over the past year, I have surrendered many things I thought I could not, and I have survived. Like my decision to stop treatments, to stop driving was my choice as well. There is one decision that I will never make or control: the function of my arms and legs. And the thought of surrendering scares me.
When I was in college, I walked everywhere, not only on campus but the neighborhood as well. My favorite spot was a little park about tree blocks from campus. I often went their to swing. One evening, I watched the movie, Gifted Hands, based off the life story of Dr. Ben Carson. I am not sure the correlation between the movie and my thoughts, but as I walked, I remember having a conversation with God in which I told him if I ended up someday in a wheel chair, then I would be at peace about it. Now that I use a walker consistently and wheelchairs are a more realistic possibility in the future, I am fearful. And God reminded me of that conversation. He is asking, ‘Do you trust me?”
I am uncertain that I can say the same statement to God as pure as when I first did, although that is my desire. Like the past, I cannot dwell on the future. And in the present, I cannot set my agenda thinking always that I may be running out of time. But this is most often what I do and I get frustrated, because I am now slow and every thing takes a considerable effort. And it is then that I feel trapped. To once again be at peace, I must let go of the fear I grip. It is not something that will come easy…only by taking one small step at a time.
…I have chosen to use weak ones like you to accomplish My purposes. Your weakness is designed to open you up to My Power. Therefore, do not fear your limitations or measure the day’s demands against your strength. What I require of you is to stay connected to Me, living in trusted dependence on My limitless resources. When you face unexpected demands, there is no need to panic. Remember that I am with you…
excerpt from May 14 entry, Jesus Calling. Sarah Young.