Skull base tumor survivor: Writing music helped me cope with my pain

I have suffered from migraines for 30 years. And to cope with the pain, I enjoy journaling. It helps me to distract myself and find clarity. My words have turned into songs that could help others experiencing similar pain.

I even joined a songwriters’ group where I collaborate with others who share the same interests. Over the years, writing and singing have given me strength to let go and be free of the pain in my head.

But in December 2019, something changed. I started to notice my headaches felt different. It hurt to exercise, stand up or even get out of bed. I also began having balance issues.

I’m a veteran, so I went to my local VA hospital in New Orleans, Louisiana. An MRI showed a skull base tumor -- a benign neoplasm of cerebral meninges.

My doctor recommended we wait and see how the tumor progressed because surgery would cause more harm than good. By March 2020, I started experiencing tingling and pain on one side of my face. I knew it was time for a second opinion.

Finding connection and compassion at MD Anderson

I researched cancer centers near me and found MD Anderson. I learned that Dr. Franco DeMonte specialized in treating skull base meningiomas like mine. He was from northern Italy, where I’d spent three years in the military. I had even written a song in English and Italian about my life called “Lash’Andare.” This song explains how even through the pain, I needed to learn to let go.

Once I arrived at MD Anderson and met with my care team, I felt I was right where I was supposed to be. Dr. DeMonte and rheumatologist Dr. Maryam Buni found answers to problems I knew were going on but hadn’t been diagnosed. Dr. Buni diagnosed me with osteopenia, which was the reason I had pain in my joints, making it hard for me to move around. She also found a cyst behind my knee.

For the first time, I felt hope. This was the best team of medical professionals who specialized in treating my type of skull base tumor.

Undergoing radiation therapy for my skull base tumor

In June 2020, I began a type of radiation therapy called volumetric modulated arc therapy (VMAT) treatment at the MD Anderson Proton Therapy Center. The goal was to prevent the brain tumor from progressing.

The staff at the front desk of the Proton Therapy Center always made me feel at home when I arrived.

My radiation oncologist was Dr. Susan McGovern, and Dr. Arnold Paulino stepped right up when needed. They both made me feel comfortable and treated me with compassion throughout radiation therapy.

I was nervous for my first radiation treatment. But my radiation therapist Esmeralda Gonzalez helped me relax. And that made my next 29 treatments go smoothly. Getting used to the routine of radiation helped ease my fears of the unknown.

But it wasn’t just my care team that gave me hope. Because my treatments lasted almost seven weeks, with appointments in several locations each day, the shuttle drivers became impactful in my MD Anderson experience. They were so kind and funny. Their stories kept me in good spirits throughout the day.

Looking back with gratitude and forward with hope

I was lucky to find a rental house in Houston with a wonderful landlord who let me bring my three dogs and two cats. Being able to have my animals with me while being away from home brought me a lot of comfort. Some friends I’d met in Italy also came to stay with me and keep me company. I met so many great people in Houston while I was there.

At my last treatment, I had hoped to sing at the Proton Therapy Center to encourage other patients, but I couldn’t due to COVID-19 precautions. My hope is to keep sharing my brain tumor experience -- and my songs -- with others. I want to be a positive light in their healing, just as so many have done for me.

Request an appointment at MD Anderson online or by calling 1-877-632-6789.