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Sep. 18, 2020

TOPIC: Featured News, Patients & Members, Advocacy, Voices of Rare Cancer 2020

Voices of Rare Cancer: Emily’s Story

Posted by Laura Mullen

An Unlikely Warrior

A warrior has been defined as a brave or experienced soldier or fighter. Hardly seems like me. I was small growing up, and always the last one picked for sports. I was also usually one of the kids that got picked on first, as I most likely to cry. I was labeled “sensitive” as a child. I have always been very in touch with my emotions and felt all things in a big way. I know now that this stems from a deep sense of empathy. I still can’t watch horror movies,  or even nature videos without being troubled for days by the suffering I see other creatures endure. When I first became aquatinted with the term as it is used in the VHL (von Hippel-Lindau) community I was not comfortable using it.

VHL is a rare genetic cancer syndrome that affects approximately 1 in every 36,000 people across the globe. It is characterized by benign and cancerous growths in up to 10 areas of the body. In my case the brain, eyes, kidneys and pancreas. We affectionately refer to ourselves as warriors, battling a disease that has no cure, diligently monitoring and hopefully removing growths before they wreak too much havoc on our bodies.

I consider myself lucky. I was diagnosed with VHL through genetic testing at the age of 17, and was spared the horror of having to discover that I had VHL only after it had caused some catastrophic complication such as blindness, metastatic cancer, or spinal cord damage. Those are the real warriors, I tell myself. I was spared the guilt of passing VHL to my only son. Those parents display true courage. I did not have my first surgery until I was 34. There are so many with VHL with a surgical history that begins well before they even reach adulthood. I had a highly skilled surgeon who removed the tumor from my cerebellum within a few hours. I was back to work 5 ½ weeks later with minimal complications. This is hardly deserving of the term warrior in my mind. I don’t consider myself brave. I was terrified.

Then I remember I was also the person who provided care to my terminal father at the age of 21 due to his VHL-related cancer. I remember burying him at the age of 22, the same year I found my first brain tumor. Then attending the funeral of my father’s identical twin less than a year later and gazing at those ever familiar hands. Hands that I could swear were my dad’s. I remember the sight of my sister in the ICU after her first surgery. She was swollen, weak, and attached to so many machines. I remember putting on a brave face despite the fact that all my instincts were telling me to close my eyes and run. I remember smiling and telling her she was strong, even though I wasn’t even sure if she could hear me. I remember spending my 35th birthday in the hospital recovering from kidney surgery. Then getting the pathology back a few days later saying what we all already knew, that the tumor was cancerous. I remember watching my mother hold my son to a table as a nurse drew his blood for genetic testing. I remember the helplessness I felt in that moment as I watched him cry. How do you begin to explain any of this to an 18-month-old?

I also look at all my accomplishments. I graduated from college, then graduate school and became a social worker. I am a wife and mother and continue to work full time. I serve on the Board of Directors for the VHL Alliance, which has allowed me to meet so many inspiring people and learn about their stories. I am a support to my sister as she also navigates her own life with VHL. I realize that this was all done in the backdrop of countless MRIs, doctor’s visits, blood draws, eye exams and other complications that VHL has thrown my way.

Bravery has many shapes and forms. Despite all the uncertainty and loss that comes with VHL, I continue to live my life and feel as deeply as ever. I love fiercely. I fear intensely. At times my grief is profound. If that is not brave in the face of VHL, I don’t know what is. After years of self-doubt I have come to the realization that I am in fact a VHL warrior and a tough one at that.