Undergoing proton therapy for olfactory neuroblastoma during the COVID-19 pandemic

After a series of nosebleeds in 2005, I was diagnosed with a rare form of cancer called olfactory neuroblastoma. I had surgery to remove the skull base tumor in my sinus cavity, followed by radiation therapy. I was then cancer-free for almost 15 years.

But in September 2019, I discovered a lump on the side of my neck. The cancer had returned and spread to my lymph nodes.

An MRI confirmed that the tumor had returned in my sinus cavity. In November 2019, I underwent two rounds of chemotherapy, followed by two surgeries in January and February 2020. The first surgery was to remove the cancer in my lymph nodes. The second surgery was to go back in my sinus cavities and remove the skull base tumor that had returned. Since I had received radiation therapy previously, my doctors recommended that I receive proton therapy this time. At my doctor’s recommendation, I came to the MD Anderson Proton Therapy Center.

My olfactory neuroblastoma treatment at the Proton Therapy Center

My proton therapy treatment was scheduled in March 2020, right after the COVID-19 pandemic started. Since we live in South Carolina, my family and I made the 15-hour drive to MD Anderson in Houston. The schools were closed during this time and my wife could work from home, so we brought our 6- and 9-year-old children with us.

Radiation oncologist Dr. Brandon Gunn helped me through proton therapy with ease. I received treatment five days a week. I had a small amount of hair loss on the back of my head and a rash on the side of my neck and face where the radiation was most concentrated. My care team recommended that I stay out of the sun to let my skin heal.

The Proton Therapy Center nutritionist, Haley Deas, gave me guidance on what to eat if I had trouble swallowing because of the radiation. However, I did not have those side effects.

The staff at the Proton Therapy Center were extremely professional and thorough. They went out of their way to make sure my treatment went smoothly.

Life after olfactory neuroblastoma treatment

We returned home to South Carolina in early May. Fortunately, my job as a compliance officer at a bank has allowed me to work from home since my olfactory neuroblastoma diagnosis in October 2019.

So far, all my scans have come back negative for new tumors.  My follow-up appointment with Dr. Gunn in August will be a virtual visit, so we will not have to make the trip back to Houston as the COVID-19 pandemic continues.

 I now appreciate each day a little more and try not to let unimportant things bother me or worry much. Life is short enough as it is. When I was undergoing chemotherapy, surgeries and proton therapy, there were times when I got discouraged, but I reminded myself to keep moving forward. After all, that is the only direction to go.

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