In hindsight, the symptoms I began experiencing in the fall of 2013—sudden excruciating back bone pain and severe fatigue—should have tipped me off that I had a serious disease, but 7 years ago, they were easy to explain away. The bone pain was similar to what I had experienced several years earlier after being diagnosed with a lumbar disc herniation, and I thought this could be a recurrence of the problem. The fatigue could have easily been from having a busy dual career as a pediatric nurse practitioner and Assistant Professor at the College of Nursing at the Medical University of South Carolina in Charleston, as well as being the mother of teenage children and active in my church and community. A physical examination by my primary care physician found that I was anemic, which he said was common in African American women and also explained my fatigue. He stopped there and didn’t pursue further testing.
Tiffany H. Williams
It wasn’t until the back pain became unbearable and I saw the surgeon who had performed an earlier lumbar discectomy that it became clear the bone pain in my back was not caused by a herniated disc but most likely something much more serious. A magnetic resonance imaging scan of my lower body showed osteolytic lesions in my spine, and a subsequent bone marrow aspiration and biopsy confirmed the diagnosis of multiple myeloma.
The first-line treatment regimen my oncologist recommended—cyclophosphamide, bortezomib, and dexamethasone—did not achieve the response he was expecting, so I was switched to the combination regimen of carfilzomib, lenalidomide, and dexamethasone as consolidation therapy prior to an autologous stem cell transplant. I achieved a very good partial response from the transplant and remain on maintenance therapy with lenalidomide.
Although it has been psychologically reassuring to be on a continuous therapy, the cumulative physical side effects from the drug are taking their toll. I have ongoing gastrointestinal problems, including nausea, varying bouts of diarrhea and constipation, neuropathy in my feet, and fatigue. Still, my overall quality of life is good.
Cancer Consumes Every Corner of My Life
I know many survivors say cancer has not defined who they are, but I struggle with that sentiment. Cancer consumes every corner of my life, and nothing is the same since my diagnosis. I’ve had to give up a nursing and academic career that I love—a career I trained long and hard to achieve and to help patients living in marginalized communities receive better access to health care.
After my cancer diagnosis, I was adrift and struggled to realize my life purpose. Fortunately, I found another fulfilling life goal as an advocate for patients with multiple myeloma, especially African American survivors, who are disproportionally affected by this cancer, and for research to hopefully find a cure. I’m grateful that myeloma is becoming more of a chronic disease to be managed with treatment and less lethal than it was in the past, but it still kills nearly 13,000 people in the United States each year.1
Living with cancer every day has also given me a new perspective on time, and I’m conscious of not wasting any of it. I’m more intentional and purposeful with all my personal relationships and the people I love, and that keeps me centered.
Living With Cancer During the COVID-19 Pandemic
I’m not usually a fearful person, but the coronavirus disease 2019 (COVID-19) pandemic spreading across the globe has me very concerned. As someone with a compromised immune system and on active cancer treatment, I know I am at high risk for contracting the coronavirus and of having a worse outcome than healthier people with no comorbidities. I’ve been in self-quarantined isolation since March 6 and am not sure when it might be safe to be out again or even to be in close contact with loved ones. My children, now adults, are living on their own, and we use FaceTime to stay in touch, but, of course, it’s not the same as being together in person, and I miss that personal connection.
“Having a chronic cancer has taught me how to live with uncertainty, and it has prepared me for the apprehension about the future many of us are experiencing now.”— Tiffany H. Williams
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I know this pandemic, like cancer, is the great equalizer and doesn’t discriminate by race, ethnicity, political affiliation, or social status. We are all potential victims of this devastating virus.
Having a chronic cancer has taught me how to live with uncertainty, and it has prepared me for the apprehension about the future many of us are experiencing now. I’m grateful for that lesson because it has allowed me to be fully present in the moment. Whether you are a survivor of cancer, the coronavirus, or some other calamity, it is the only way to live.
Ms. Williams lives in Charleston, South Carolina.
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.
REFERENCE
1. American Cancer Society: Key statistics about multiple myeloma. Available at https://www.cancer.org/cancer/multiple-myeloma/about/key-statistics.html. Accessed April 10, 2020.
