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| Graphic made with canva.com The photos within the graphics are the personal property of Nancy Kotch. |
Embrace
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| Nancy Pictured With Her Husband Jeff. Graphic made using canva.com |
My name is Nancy Koch and I am 42 years old. I am from Connecticut and now live in South Carolina with my husband and best friend Jeff for 10 years. Some of my favorite things are reading, doing puzzles, planting flowers, laying on my hammock, watching TV, coloring, going to dinner with friends, and listening to music. Together, Jeff and I enjoy riding on his motorcycle, traveling, hiking, going to concerts, and watching movies. As a matter of fact we have watched a total of 264 movies since we started dating and have the list to prove it.
I was about 10 years old when I received the diagnosis of Neurofibromatosis (NF). Neurofibromatosis is an incurable genetic disorder of the nervous system. It occurs when there is a mutation on chromosome 17. It mainly affects the development of nerve cell tissues. Tumors known as neurofibromas develop on the nerves. These tumors may be harmless, or they may compress the nerves and other tissues, leading to serious damage. Although NF is genetic, 50% of the population with it, received it through a spontaneous mutation - that would be me.
The only signs that I first showed were multiple café au lait's or birthmarks on my body. These became more prevalent as I got older which of course made me extremely self -conscious in my adolescent years. To me, I believed everyone would stare at my legs or arms and wonder what was wrong with me. I purposely chose clothes that I knew would cover them up and I tried to hide them.
My teenage years were uneventful as far as NF goes. I still struggled from time to time with my appearance even though most people told me they never noticed anything different about me. It was not until my mid-twenties that I started having more serious complications. It started on a day when I found a lump on the right side of my neck. It seems like it grew overnight. It started by my ear lobe and was as long as the center of my neck. After numerous scans, and biopsies I was referred to a surgeon in Yale who specialized in neck surgeries. He immediately set me up for a neck dissection. The pathology revealed it was in fact a neurofibroma. It was kind of a shock because up until this time I had no real complications from my NF. After surgery I was unable to speak with any sound. It was found that I had damage to my vocal cords and needed to have a second surgery to correct this with an implant to correct the sound of my voice followed by months of speech therapy. My voice has never been the same. I am unable to scream loudly and often get tired and winded if I am needed to speak for long periods of time. Fast-forward 6 months - I started develop strange sensations in my hands and feet similar to the feeling of pins and needles. I ignored it for some time until it became a daily occurrence. I saw my PCP in the office, and he referred me to have a CT scan of my brain "just to be sure. " He called me that same day to tell me something was seen on my cerebellum and I would need to see a neurosurgeon as soon as possible. The cerebellum is located behind the top part of the brain stem (where the spinal cord meets the brain). The cerebellum is responsible for managing movement and controlling one's balance. Just like last time I was advised I would need surgery. I was devastated and scared. I cried every time I thought about it. The surgery was a success and thankfully the tumor was benign. The side effects I experienced after surgery was the hardest time of my life. I couldn't walk down the hall or sit up from a chair without the world spinning. I had a hard time picking up a drink. I was constantly sick from all the motion around me. I was dehydrated and nauseas all the time. I had therapy once again to learn other ways to move my body and my head to keep from feeling like I would fall over. It took years to get to my new normal. To this day I still struggle with looking up in the sky or at the ceiling and I am unable to lie flat or bend over without experiencing dizziness. I am now free from having to go for yearly brain MRI's as there has been no new growth. I do have a tumor currently on my cervical spine but this has remained the same size for years so unless I begin to experience symptoms we feel it is best to leave it alone for now.
Having been diagnoses with this “disease” has taught me a tremendous amount about life. As I have gotten older I appreciate the little things in life so much more. I no longer sweat the small stuff (most days). I have learned that life is just not worth it. I appreciate my health and realize how much worse things can be. I recently got a tattoo written in my very best friends handwriting with the word ‘embrace’. It is a reminder to me to be happy with who I am and to accept the person I have come to be. I also use this as a teaching moment to others when they ask what I am embracing. The only way to make others aware of Neurofibromatosis is to teach and educate them.
Lastly, this past month I was diagnosed with breast cancer. It is in the very early stages and very treatable. I am looking at surgery and radiation but thankfully no chemotherapy. It is difficult to stay strong all the time, but I try hard to think back to my message about what I am meant to do in these situations. I do believe there is a greater plan that we do not know about. I am working on ‘embracing’ this next chapter in my life and hopefully someday I can pass it on to others who are also going through difficult times.
You can also connect with Nancy on instagram @nancyk_26 |
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