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Cancer, Marriage, Baby, and My Dog With Epilepsy
A Rare Cancer Makes Me Invincible No More
During a routine check-up, my gynecologist found a lump below the waist, and I was diagnosed with a rare soft tissue sarcoma that had only been discovered in approximately 20 other patients around the world. While the news was shocking for my family, I just felt numb. As a teenager I thought I was invincible, and didn't believe I could die.
Between August and November 2005 my tumor went from the size of a pea to the size of a golf ball. Following a six-hour surgery to remove the tumor, I began the first of eight rounds of chemotherapy. I lost my hair around Christmas, and during round four of chemotherapy I began to lose the use of my legs and was confined to a wheelchair. When the drive to the treatment center got too rough, my parents — who were juggling the care of a grandfather who also had cancer and caring for my younger sister — temporarily moved us into an apartment nearby.
Chemo, Radiation, and Setbacks
In December my oncologists broke the news to my mom and fiancé: They weren’t sure if the chemotherapy was working, there was a possibility I might never walk again, and I likely wouldn’t be able to have children of my own. With that weighing on my mind, in January, I began radiation. Unfortunately, I had a bad reaction with the radiation that caused my white blood count to drop to zero. I don’t remember much of the harrowing experience, although I am told I was in and out of consciousness for a week while I battled a bad blood infection and a 104 degree fever.
Good news finally came in March 2006. The radiation had worked, and I was officially declared to be in remission. Suddenly, my fiancé and I began to examine the prospect of a wedding with a new outlook — one of hope for the future. Privately, I was determined that I would walk myself down the aisle on my wedding day and began to work towards that goal.
Within a few months, and after intense rehabilitation, I was still clumsy but managed to walk short distances without the help of a walker or chair. On July 9, 2006, almost a year to the date of our engagement, and almost a year after my initial diagnosis, I walked down the aisle with the help of my father to marry Alex.
An Ambulance Becomes 'Mommy's Car'
Married life was wonderful, especially when, on Christmas Eve 2007, we learned that we would become parents. After once being told I might never be a mom, we were completely elated. The day of my son Luke’s birth was one of the best days of my life. (That's Luke and Alex with me in the picture.)
Soon thereafter, however, I experienced what I believed to be an intense panic attack. I chalked it up to lack of sleep or the stresses of being a new parent. The “attacks” continued for weeks until my oncologist, fearing a brain tumor, recommended an electroencephalogram (EEG) to monitor my brainwaves. I had a seizure during the EEG and a diagnosis was made: epilepsy. The realization that I was sick again was devastating.
Suddenly, I found myself going from attentive, active stay-at-home-mom who had just conquered cancer to being unable to care for, or even be alone with, my infant son. While most people with epilepsy will get control of their seizures with medication, I was among the approximately one-third of patients with drug-resistant epilepsy. My seizures were occurring twice daily and medications did not help. In fact, the seizures, which often required emergency response, were so frequent that as my son began to talk, he identified passing ambulances as “mommy’s car.” My family was forced to hire a round-the-clock caregiver for both myself and my son.
Goliath and I Face Epilepsy Together
One afternoon while watching a health news program, I saw a segment about a woman who had a similar story to mine, and eventually was able to manage her seizures with a pacemaker-like device. I learned that I was a candidate for the treatment, called vagus nerve stimulation (VNS) therapy, in which a small generator is implanted under the skin in the left chest and delivers mild electrical impulses to the brain via the vagus nerve in the neck.
I was 21 when I got the VNS therapy implant in 2010, and the results were life-changing. Today, I am the mom of an active 5-year-old boy, and have become an exercise enthusiast, running 5Ks and avidly participating in Tae Kwon Do. I also have a service dog named Goliath (pictured at left with me) , who is my “right hand man.” Our bond is incredible and we support each other relentlessly, despite the fact that Goliath also lives with epilepsy.
Though I still have the occasional seizure, I am grateful. After overcoming both cancer and the challenges of a life with epilepsy, I feel extremely lucky to be alive and am writing an inspirational book about my experiences. I frequently share my story with local churches, and hope to someday go to school to become a motivational speaker.
Naomi Lewkowskiis a cancer survivor who lives in San Antonio, Texas, with her husband and son.
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