The Clock Is Ticking

John DeFlice |

“You have to cherish things in a different way when you know the clock is ticking…”—Chadwick Boseman

I recently celebrated the ten-year anniversary of my multiple myeloma diagnosis. I remember racing to the radiology unit at 8 a.m. to review the results of my MRI. I had been on call since 7 a.m. that morning and had received several calls regarding patients that would be needing emergent endoscopic procedures. My only symptom at that point was back pain at night while I was in a supine position. Other than that, I was able to see patients daily at the gastroenterology clinic and perform procedures.  The results of the MRI revealed a lytic lesion in my thoracic spine, and I was immediately scheduled for a biopsy to make a pathologic diagnosis. 

That was the last day of my practice.

The pathologist who diagnosed me was the father of my daughter’s best friend. I then had an oncology appointment with a colleague of mine who I had worked with for over eighteen years. In the past, I had referred patients to him that I had diagnosed with malignant gastrointestinal cancers. I remember him stating the life expectancy for patients with multiple myeloma at that time. Not good!

I was used to being in the position of delivering test results and biopsies to my patients, and I now found myself in the unique position of having to receive them.  In my many years of practice, I witnessed the difficulty that patients had in receiving a cancer diagnosis. I now shared their anxiety.  Just the previous week I had diagnosed a young woman with stage IV colon cancer. She had presented with jaundice and a very enlarged, firm liver.  That same week I had seen a fifty-year-old male who came in after experiencing difficulty swallowing. He was diagnosed with a large cancerous mass in his esophagus.

I started my therapy and began receiving infusions in addition to radiation treatments to my thoracic spine. It was a surreal experience—having to share chairs in the infusion center with the patient I had just diagnosed with colon cancer. I worried about her and her options for health-care coverage. She would no longer be able to work, she was single, and her only family member was her father who was ill and lived out of state.

Within a month of my diagnosis, I attended my first IMF Patient and Family Seminar in Los Angeles. It was reassuring to see “like” people and their caregivers. It was difficult distinguishing the patients from their caregivers because so many of them looked healthy. It was there that I first saw Jack Aiello. I was impressed with his knowledge of the disease that he had built during his extended experience with multiple myeloma. I got a huge dose of hope and reassurance from that two-day meeting. I made the decision to consult Dr. Robert Vescio at Cedars-Sinai Samuel Oschin Cancer for an evaluation for a stem cell transplant.

I received my stem cell transplant eight months after my diagnosis and was placed on maintenance therapy. At that time, the course of treatment was somewhat controversial. 

Some patients were advised to start maintenance therapy soon after a stem cell transplant, and some were advised to wait for signs of relapse. I appreciate Dr. Vescio’s knowledge and positivity. Each time I see him, he shares a few pearls of myeloma wisdom. I am convinced that myeloma patients should consult myeloma specialists at some point during their treatment.

I joined the Multiple Myeloma Support Group in Santa Fe, New Mexico, three years after my transplant. I have since become a co-lead in the group with Susan Benjamin, a fellow survivor. I have been fortunate to attend ASH meetings for the past four years at the invitation of the IMF and have been in awe of the progress that has been made in the treatment of multiple myeloma in the last 10 years. The clinical investigators and researchers are remarkable in developing new drugs and new protocols in treating newly diagnosed and relapsed multiple myeloma. I was also fortunate to participate as a patient advisor on the FDA committee that approved the newest drug, belantamab mafodotin, for heavily pre-treated multiple myeloma.

I have cherished the last ten years. I walked my daughter down the aisle at her wedding in Mexico, I’ve witnessed the birth of our granddaughter, I have watched my son develop his career, and my wife and I have been fortunate enough to do some traveling. I have also ridden my bike over 15,500 miles. My daily riding keeps me centered as I navigate the anxieties and uncertainties of multiple myeloma. I am an advocate for myeloma patients and hope that all patients are able to receive the best care available in treating this disease.

John DeFlice, M.D.

@johnde1MYELOMA

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