Oya Gilbert
The first sign that something was terribly wrong was in 2015, when I began to feel so fatigued that it was difficult to get out of bed even after 8 to 10 hours of sleep. I’ve been full of energy my whole life and couldn’t understand why I was so tired all the time. Then I began to experience shortness of breath so severe it would wake me from a sound sleep.
I was only 44 years old and had been healthy all my life. Feeling sleep deprived was concerning. But having difficulty breathing was so alarming it sent me first to the emergency room fearing that I was having a heart attack and then to my primary care physician, who could find nothing physically wrong with me.
I didn’t realize it then, but this was just the beginning of a medical odyssey that would take years to finally resolve.
Accepting I Was Going to Die
By now, in addition to fatigue and shortness of breath, my bones started to ache. After bouncing from a series of physicians, including specialists, who could find nothing to explain my escalating symptoms—I was even accused by one of being a hypochondriac—I accepted that I was going to die. Worried that the coverage amount in my life insurance policy was insufficient to provide for my children after my death, I called my agent to increase the amount of my policy, which required a physical examination by one of the company’s physicians. Soon after, I finally had the answer to the symptoms I had been experiencing.
The results from an analysis of my blood and urine showed high levels of protein. Coupled with the fatigue, shortness of breath, and bone pain I’d been experiencing, I had all the hallmarks of multiple myeloma, an incurable but highly treatable cancer, said the physician. A bone marrow biopsy confirmed the diagnosis.
Wanting to Be Heard
After 2 years of struggling with debilitating symptoms, my first reaction to receiving the news that I had a life-threatening cancer was relief to know I hadn’t been imagining these problems, quickly followed by intense anger. How could so many physicians have failed to determine what was wrong with me and instead accuse me of being overly anxious about my health?
As a Black man, I wondered if unconscious bias played a role in my delayed diagnosis. I live in a rural region that is predominantly White and known for prescription addiction, so perhaps these doctors thought I was just after drugs. They dismissed my complaints when they should have listened to me.
Keeping the Cancer Stable
After receiving induction therapy that included bortezomib, lenalidomide, and dexamethasone, I underwent an autologous stem cell transplant. The treatment brought me close to a complete remission, and lenalidomide maintenance therapy is keeping the cancer from progressing. I’ve made the decision that as long as the cancer remains stable, I want to delay undergoing any additional aggressive treatment that could exacerbate the already troubling side effects from my therapy, including neuropathy, shortness of breath, and occasional back pain. Despite these problems, my quality of life is good, and I’m grateful to be alive.
Living in the Present but Planning for the Future
Having cancer has completely changed my life in ways big and small. Although previously reticent to confront my health-care providers when I was searching for a diagnosis, I now don’t hesitate to replace a clinician if I’m not satisfied with the care I’m receiving. I’ve learned to become not only a self-advocate but an advocate for other patients in similar circumstances. I’ve launched the nonprofit Health, Hope, & Hip-Hop Foundation to reduce health disparities in underserved communities through patient education, and the work is gratifying.
“I’ve learned to become not only a self-advocate but an advocate for other patients in similar circumstances.”— OYA GILBERT
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To cope with having an incurable cancer, I choose to live my life as if I don’t have the disease. I’m not deceiving myself; I’m acutely aware of my condition and that I may not live to see old age. To compensate, I make a conscious effort to slow down and savor the present, taking the time to appreciate the roses rather than always looking ahead, but I still plan for the future.
Even though I have multiple myeloma, it doesn’t mean that will be what kills me. None of us knows how long we have to live—whether we have cancer, another disease, or no disease at all. What truly matters most to me now is living my life to the fullest for as long as I can.
Mr. Gilbert, 54, lives in Waynesboro, Pennsylvania, and is the founder of the Health, Hope, & Hip-Hop Foundation.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.
