Fighting our battles with head held high
What I learned from my sister's cancer diagnosis
“Life is 10% what happens to us and 90% how we react to it.” — Charles R. Swindoll
My adult children invited me to Walt Disney World for Labor Day weekend in 2023. They know I always try to make things happen when they have a request. Since they’re also best friends, I was thrilled to be included.
Their motivation stemmed from college game day, when my kids’ teams — the Florida State Seminoles and the Louisiana State University Tigers — met for the season opener. I’m a sports and Disney fanatic, so they knew I’d say yes. Regardless of any challenges I face, my kids are my priority.
I can’t resist Disney World, as it’s the happiest place on earth. Since my kids are adults, we don’t go as often as we did when they were young. But no matter how old I am, I’ll always be a Disney kid at heart. I shed a tear every time I drive through the front gates.
However, having hypoparathyroidism, a rare disease, means that long, hot park days can be challenging for me. Enormous crowds, long lines, and magical lights, sounds, and sights can be overwhelming and stressful. Unfortunately, stress leads to hypocalcimia, so in the middle of it all, I have to worry about a calcium crash.
I’m grateful for Disney World’s Disability Access Service, which makes trips with my children to the theme park manageable, despite the long lines and intense summer weather. This minimizes the chance of exacerbating my hypopara symptoms. Even though hypopara is an invisible illness, Disney still understands the challenges I face and allows me to make lasting memories with my kids.
When that weekend arrived, I dropped off my dog, Princess Leia, at my sister Pamela’s house. She wasn’t feeling great, which was surprising since I’m usually the sick sister. She had a large, prominent lump on her lower right side. Scans were scheduled for later that day.
Returning from a weekend filled with excitement, thrills, and emotion, I picked up my dog. There, I learned that radiology tests had revealed my sister had a large tumor that needed to be removed. She actually had two unrelated cancers, which her incredible doctor later discovered. That week, she underwent emergency surgery at the Cleveland Clinic in Florida, performed by the same surgeon who treated tennis legend Chris Evert, who had one of the same cancers as my sister.
If anyone knows the importance of an excellent surgeon, it’s me. I often second-guess my decision to have a thyroidectomy, for example.
Columnist Bari Vapnek’s sister, Pamela Eskalyo, rings the “bell” at the Cleveland Clinic in Weston, Florida, after successfully completing cancer treatment. (Courtesy of Pamela Eskalyo)
My rock star sister’s positive attitude was the most valuable tool for her recovery. Genetic testing revealed that she was positive for a BRCA2 gene mutation. This introduced me to the importance of genetic testing, which my mother, nieces, and I had to undergo, as BRCA2 mutations are hereditary. I assumed I would test positive because that’s my luck. Fortunately, I was negative, but sadly, my mom and a niece are positive.
Hypoparathyroidism can also be inherited. While about 80% of patients with the disease are diagnosed post-surgery, others carry a gene mutation. Calcilytix Therapeutics, a BridgeBio company, offers free genetic testing for 26 hypopara genes. I never realized the importance of that until I learned about my own family’s gene mutation.
This made me reflect on what happens if I get sicker, as I’m divorced and live alone. I sought an estate planner, made a will, assigned a healthcare proxy to make decisions if I become incapacitated, and ensured my kids would be OK. Many comorbidities are associated with hypopara, so I felt preparing for an emergency was crucial. I’ve witnessed firsthand how fragile life can be.
Those few months were quite stressful for me, and my hypopara kicked in. Since then, I’ve had difficulty stabilizing my calcium levels. However, I had to be strong for my sister. She’s a legend, and she eventually beat cancer. It inspires me how she fought her battle with her head held high, with grace and a positive attitude.
That made this “Brave Butterfly” think about what legacy I want to leave behind. With my chin up, I’ll continue to spread my wings of hope, knowing that change is on the horizon for hypoparathyroidism. Hopefully, another trip to Disney World with my kids will also be on the horizon. I could use some magic in my life!
Note: Hypoparathyroidism News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.
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