Rare. Unusual. Anomaly. All of these words are synonymous with being a long-term glioblastoma survivor. All statistical data suggests that I shouldn’t be here. Only 10% of people with glioblastoma survive five years. However, here I am, 10 years after being diagnosed with the most aggressive form of brain cancer, and I’m not only surviving – I’m thriving.
Looking back is surreal. Some things seem like a dream to me, as if I was floating above watching my life unfold beneath me. Other memories are so vivid that I am instantly brought back to the time and place, and I can recollect the smallest details.
My glioblastoma diagnosis and recurrence
After my glioblastoma diagnosis, I was extremely hopeful, yet realistic. I had every medical advantage for a person diagnosed with brain cancer: one of the best neurosurgeons in the country, Dr. Sujit Prabhu, who removed 99% of the tumor in MD Anderson’s state-of-the-art BrainSuite®; excellent neurological exams; and peak health condition for my age. But I still knew that it was possible, or more than highly likely, that I would have a recurrence.
My tumor returned less than a year after my initial diagnosis, and my life changed the moment I stepped out of MD Anderson after my second surgery. Even if it meant multiple recurrences and craniotomies, I would fight as long as possible for my husband, my daughter, my family and my friends.
Taking advantage of the gift of time
After a few years passed with no more recurrences, I felt foolish for not taking full advantage of being a young, healthy cancer survivor. I decided then that I would push myself to achieve goals that I thought were out of reach, and make as many new memories as I possibly could with the extra time I’d been given.
I earned my bachelor’s degree in English. I also ran two half-marathons and completed my first full marathon in January 2018. And, most importantly, I made wonderful memories with my family and friends. I’ve visited more places in the last 10 years than I had ever imagined. I saw ancient Mayan Ruins, played in the clear blue waters of the Caribbean, explored incredible caverns and visited Disney World twice.
Long-term glioblastoma side effects
However, long-term glioblastoma survival doesn’t come without inconveniences. I suffer daily with anxiety, thinking about the “what ifs.” I’ve come to terms with being on a mild anti-anxiety medication. It’s better than trying to fight through crippling panic attacks. Also, it’s become extremely awkward for me to begin new relationships with friends or work colleagues. I never know when I’ll need to explain why I have to travel to MD Anderson — or that I have bald spots beneath my long hair from radiation. I sometimes feel uncomfortable sharing my experience. I don’t look sick. So, why would anyone think that I’m a cancer survivor?
Learning to deal with survivor’s guilt
I also suffer from an indescribable survivor’s guilt. I think of people I’ve connected with along the way who are no longer here. Every time I hear someone has been diagnosed with any type of cancer, I cringe, thinking someone else might say, “Well, you know Constance is a cancer survivor,” as if I’ve experienced every aspect of every cancer. (I haven’t!) But these are minor problems for living much longer than expected, and I’m grateful to my care team that I’m even here to experience these inconveniences.
Embracing life after glioblastoma
The past 10 years have felt like a lifetime. It also feels like they’ve gone by in the blink of an eye. My memories are like a roller coaster ride of highs and lows, but mostly highs thanks to my care team and support system of family and friends. Like everyone, I have bad days. But I try my very best to be optimistic and happy on a daily basis, no matter what the world throws my way. See, that’s where cancer loses. We may not have much control over the hand we’re dealt. But glioblastoma doesn’t have control over my life. I’ve faced every day since my diagnosis head on, and I’ve learned to embrace every waking moment with all of my being.
To quote one of my favorite movies, “The Shawshank Redemption,” you either have to get busy living, or get busy dying. Every day that we wake up, regardless of our current health, we are both living and dying at the exact same time. We can make the ultimate decision to embrace every moment and live our lives to the fullest, or we can choose to let life get the best of us. I choose to get busy living, and my advice to every survivor is to do the same.