The Race

 

It was a lazy morning. My dad had made banana pancakes, I sat in the den devouring them, entranced by Saturday cartoons. As I watched Road Runner speed through the desert, my heart suddenly started to flutter – frantic hummingbird were trapped in my chest. Though only 9 years old, I knew something was strange.

“My heart is beating weird, dad,” I murmured.

My father put his book down and kneeled at my side, placing his wide hand over my thumping chest. His face paled. He scooped me up, yelling for my mom. We hurried into our Ford station wagon and ran a few stop signs on the way to the hospital.

My parents hovered at the edge of the bed as the emergency room staff fussed over me, lifting my California Raisins T-shirt to attach gummy stickers and a tangle of colored wires that looked like a bomb on McGyver.

“This won’t hurt honey,” a nurse assured me. “We’re just checking how your heart is beating,” she continued, gesturing to a monitor nearby that soon came alive with squiggles, beeps and flashing numbers.

“She’s in SVT,” the doctor told my parents. “It’s an arrhythmia. We can try some simple tricks to stop it.”

I jumped as the nurse put ice packs on my face and giggled when she told me to bear down like I was trying to poop. My face reddened as I pushed. The monitor stopped beeping. The hummingbird flew away.

So began my life with what my new cardiologist called “atrioventricular nodal reentrant supraventricular tachycardia.” She explained there was helpful medication, but it didn’t work perfectly; I’d likely live with this problem forever.

Every month or so without warning my heart would decide to quiver and throb, requiring me to leave school and go to the emergency room again. My parents bore the brunt of the stress and insurance copays; I just hated missing class and feeling different than the other kids. Even more, I hated how I wasn’t allowed chocolate or Coca-Cola – the caffeine could trigger my arrhythmia.

Around the time my heart began misbehaving, physicians and scientists were researching a new technique called ablation. By threading a special catheter from a vein in the leg up into the heart, they could zap the faulty portions of the heart’s electrical conduction system, eliminating the culprits of many arrhythmias. After years of fine-tuning and safety studies, ablation became widely available, able to fix patients like me.

So when I awoke one morning with a particularly severe episode of SVT requiring an emergency medication to temporarily stop my heart and reboot it, my cardiologist suggested I try this new procedure.

“It wasn’t around when you were diagnosed, but thankfully science has advanced and now there’s a way to completely cure you,” she said, beaming.

One frigid winter morning soon after, I left the hospital with a renovated heart. The curious spirits and tireless toil of scientists had freed me from perpetual worry, frequent ER visits, medications with frustrating side effects and a lifetime ban on caffeine. I celebrated with an espresso and a bar of chocolate.

Scientific discoveries do much more than fill a textbook or boost a resume. Often thought of as dry and abstract, they are actually intensely personal. Like seeds scattered by the wind, the results of research travel far beyond the laboratory, changing the course of innumerable lives.

As a pediatrician, I see this every day. Thanks to science, infants born 3 months prematurely grow into happy kindergarteners. People with cystic fibrosis live to celebrate their 40th birthday. Children born with holes in their hearts run and jump like any other preschooler. Teens yellow and bed-bound from failing livers transform into normal college students after a transplant. Toddlers pale and tired from leukemia now survive to have a normal lifespan. Without well-funded rigorous research, all of these lives would be certainly more painful and quite short.

Having become a cancer patient myself, I live with the hope science will discover therapy to extend my life. My cancer, liposarcoma, is still treated primarily with the same method doctors used a hundred years ago – surgery.

The fruits of medical research that have helped so many other cancers – chemotherapy and radiation – often do nothing to this recalcitrant cancer. Unfortunately, even after it’s cut out, sarcoma likes to return. My recurrent tumors have required three surgeries, each made more difficult by building scar tissue and the need to remove adjacent organs to ensure all the cancer is gone. Surgery has its limits.

Thankfully, research in sarcoma has shown encouraging progress in the last few years. Fueled by the advocacy of sarcoma patients and the financial support from both the government and private sector, scientists have new understanding of the causes of this frustrating cancer. Several emerging therapies may modernize its treatment, reducing the need for the knife.

Perhaps the wave of medical progress I rode to cure my arrhythmia will sweep me up again, finally curing my cancer. I owe my health – and that of my patients – to the under-recognized heroes of science. I support them with both my wallet and my no-longer-racing heart.  

 

 

Ways to Act

Support sarcoma research

Support rare disease research

Read about proposed  government cuts to research funding

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3 Comments

  1. Julia, You certainly are a good writer. Thank you for keeping Leah and I in the “loop” of your life and family. Your postings here have been so informative, yet, I’m hoping the cancer has not come on with new challenges to your health. We pray and wish you well whatever your circumstances. The thing about prayer it does not use up artificial energy, doesn’t burn up any fossil fuel, doesn’t pollute. Neither does song, neither does love, neither does the dance. Daily, we wish you the love and laughter of your daughter. in abundance. We wish you all of these many things that can lift your spirits. – Jack

    1. Dr. Julia — you have certainly been through your unfair share of medical ailments. May your days be blessed and your patients appreciate your efforts as you too undergo your own medical burdens.
      John

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