I had every classic brain tumor symptom in the book—severe headaches, dizziness, morning nausea—which plagued me for 16 years, starting when I was 8. In college, if I allowed myself to sleep more than 4 hours a night, the morning headaches, which were centered on the top of my head, were so severe, I chose to sleep less to try to avoid the pain. This left me so exhausted during the day that it was difficult to concentrate on my schoolwork.

Persistent Symptoms

My parents continually tried to find the source of the problem, and over the ensuing years, I was diagnosed with various ailments, including migraine headaches, food allergies, histamine sensitivities, and even a sleep disorder. No matter how I adjusted my diet and lifestyle, the headaches persisted, although their patterns changed over the years, sometimes giving me a 6-month reprieve and then coming back with such a vengeance, they would last 3 weeks.

I was so young when the symptoms started that no one ever suspected I could have a brain tumor. Finally, when I was 24, I had a CT scan of my brain, which showed a malignancy in the fourth ventricle. The pathology report said the diagnosis was choroid plexus carcinoma. The cancer was so aggressive, my oncologist said I probably had only 6 months to live.

Although the news was, of course, frightening, since I had had this cancer for most of my life, I didn’t believe it was now about to kill me. I was prescribed an aggressive course of treatment, which included surgery, then radiation therapy followed by combinations of chemotherapy, including vincristine, carboplatin, cisplatin, and cytarabine, the last delivered via a shunt inserted directly to my brain. Because the tumor was lodged on my brain stem, the surgeon could not remove it all without jeopardizing my functioning, so I still have a remnant of the tumor left. Thankfully, the mass has remained stable for the past 28 years.

I know how lucky I am to have staved off recurrent disease for nearly 3 decades. And although I have some hearing loss and peripheral neuropathy in my hands from the chemotherapy, there are currently no other late effects from my treatment.

Process of Self-Reflection

Despite the lingering physical and emotional effects of having cancer at such a young age, I have to say, cancer has given me much more than it has taken away. Driven to succeed in everything I did, early in my career I worked on Wall Street and then was the number-two employee for a company that developed worksite child care. However,  I was on a path that at the core was not who I am. So at 24, I was forced to go through a process of self-reflection not many people that age go through, and it gave me the opportunity to follow my passion of working with children and families coping with serious illness. The experience has changed my life.

I went to graduate school for a degree in psychology and for over 15 years facilitated support groups for children with cancer and their families for such organizations as the American Cancer Society, the National Brain Tumor Foundation, and Packard Children’s Hospital in California.

The Meaning of Cancer

Working with other cancer survivors and listening to their stories about how their disease affects their lives has made me aware of how important it is for oncologists to ask their patients not just about the symptoms they are experiencing, but about what having the disease has meant to them. The information gleaned from these conversations will not only help oncologists gain an understanding of how best to support their patients emotionally, it may also impact the treatment plan they prescribe.

Having cancer has made me a more authentic person and deepened my relationships with family members and friends. And although it initially stripped away my identity, it allowed me to concentrate on my core values, and that is how I rebuilt my life.

I’m so grateful to have learned these lessons at such a young age. I know that this is the life I was meant to live. ■