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My Incredible Journey with Multiple Myeloma

By James Mitchell

Philly Skyline
Philadelphia Skyline

Nearly 120 round trips, and as many trips to the gas pump. 240 or so passes through the toll booth. About 18,000 miles. Just about 30,000 minutes.

Over the past two and a half years, I’ve made the trip from Lancaster County, PA to Philadelphia every week. The distance, though, means less to me than the reason for the journey.

In December 2019, I enrolled in a clinical trial at the University of Pennsylvania, where I had already been a patient. I first made the trip some six months before. I had just been diagnosed with multiple myeloma, and a local oncologist had suggested that I also see a specialist. Fortunately, it had been relatively easy to secure an appointment at the Abramson Cancer Center.

Over the summer and autumn of 2019, I received the standard treatment for myeloma in Lancaster at the Ann B. Barshinger Cancer Institute, an affiliate of the Penn Medicine system. My appointments occurred frequently; a couple times a week. But the trip was a quick one—twenty minutes give or take. And it was one that I always made with a family member: my sister, mom and dad, grandmother, great uncle.

Not long after I settled into this routine, my care team discovered some troubling abnormalities. Instead of a reduction in symptoms, they flared in new and unexpected ways. A series of imaging revealed the presence of new lesions. The team prescribed a new course, including radiation—for which I went to the cancer center daily over the course of a few weeks.

James and Gritty
James & Gritty

When the radiation ended, I began the clinical trial—an option made available to me because the initial treatment regimen had failed. For too many, the process of finding and enrolling in a clinical trial is a burdensome one. Yet, serendipitously, the myeloma specialist who headed up my care team was the principal investigator on this trial.

So, in December 2019, I became one of the first myeloma patients in the world to receive an experimental drug that has, in my case, proved to be safe and effective. As a patient during the first phase, a period which determines whether a new drug is safe, I faced uncertainty. At the time, no one knew for sure what reactions the drug would cause—let alone whether it would work.

Nevertheless, I arrived for each appointment, accompanied by one of my family members—my greatest sources of strength and support. Each car ride has given us an opportunity to be together and to connect, in spite of adversity.

Over time, I have come to know well the stretch of turnpike between Lancaster and Philadelphia. I know the bends and curves, the mile markers and exit numbers. I know when to change the radio station from Lancaster’s classic rock to Philly’s greatest hits. Music is a must. I know when to anticipate traffic’s ebbs and flows on the expressway—even though I’m not the one actually driving.

Every week, I’m sure to:

  1. Pack snacks and a light lunch.
  2. Bring plenty of water. (Which also necessitates knowing where the public restrooms are!)
  3. Plan for a side trip—retail therapy never hurts!
LOVE sculpture
LOVE Philadelphia, an iconic sculpture by Robert Indiana

More important than the routine, however, are the many blessings that occur along the way. Over these past two and a half years, I have benefited from the tireless efforts of countless others: my care team, the support staff at the Perelman Center for Advanced Medicine, and my family. They all make my life possible.

And as I’m attended to by this incredible network, I also benefit from the support of organizations like Lazarex Cancer Foundation, which understands one of the unseen barriers to cancer care and clinical trials. Transportation is a logistical burden, as patients face countless other disruptions and distractions.

Not long after I began receiving the trial drug, my dad and I left for my weekly appointment in Philadelphia. It was January, and we had left well before sunrise. Just as we approached the city, the sun began to spread its rays over the skyline—now illuminated by vibrant oranges and purples. A reminder that a new day dawns.