Darlene Pruess
Intense pain on the right side of my lower rib cage, in 2020, sent me first to my chiropractor for relief and then to my primary care provider for tests. Because of the location of the pain, the chiropractor thought I might be having a gallbladder attack, but the results from a urine test showed a potentially much more serious problem. My serum creatinine levels were so high that my physician sent me to the emergency room for additional evaluation.
Within days of being admitted to the hospital, I got a diagnosis I never expected. After the elimination of several potentially curable hematologic malignancies that might be causing my symptoms, results from blood tests revealed abnormal amounts of protein, and urine tests confirmed extremely high creatinine levels. Even more shocking, imaging scans found I had several bone fractures—all the hallmarks, the oncologist said, of the incurable blood cancer called multiple myeloma.
At 64, I was exceptionally physically fit. I worked out three times a week with a trainer and biked 80 to 100 miles weekly. Except for some minor fatigue and mild foggy brain, which I dismissed as part of normal aging, and the recent twinge of back pain, I felt fine. Certainly, I didn’t feel like I could possibly have cancer.
With no family history of disease to prepare me for this situation, I was in shock and felt sure I had just been given a death sentence after additional tests confirmed multiple myeloma. Compounding my distress was the fact that the diagnosis came at the height of the COVID pandemic, and I had to process the news alone.
Although I was immediately assured by my oncologist that although multiple myeloma is incurable, it is a highly treatable disease that can be effectively managed for many years, I was scared—an emotion I was to experience frequently over the next 4 years as treatment after treatment failed to halt disease progression.
Placing Hope in CAR T-Cell Therapy
To prepare me for an autologous stem cell transplant, I received a potent high-dose conditioning chemotherapy regimen of cyclophosphamide, bortezomib, and dexamethasone. But the transplant gave me only a brief 5-month respite from the cancer. Next, I received the triplet combination of pomalidomide, cyclophosphamide, and dexamethasone, which also only provided a fleeting remission, as did pomalidomide alone as maintenance therapy.
Despite the incredible tenacity of this cancer, I still believe there is a treatment solution that will ultimately give me the durable remission I crave and a return to a semblance of my normal life. Several months ago, my oncologist suggested that chimeric antigen receptor (CAR) T-cell therapy might be an effective treatment option for me.
For the past several months, I’ve undergone a combination of ifosfamide, carboplatin, and etoposide in preparation for CAR T-cell therapy. I’m hoping this is the treatment that finally tames the cancer and drives it into a long-lasting remission.
Building a Bridge to the Next Innovative Treatment
Having an incurable cancer has definitely rerouted my thought processes about the future. Being in and out of remission so frequently is physically and mentally exhausting, and I have to constantly build back my level of resilience to stay positive. But, I admit, it’s getting more and more difficult to keep ahead of this rampaging cancer.
My oncologist is anticipating that CAR T-cell therapy will give me at least 3 years of remission from the disease. That would give me a chance to recover from the myriad side effects of the various treatments over the past 4 years and be a bridge to the next innovative treatment.
I’m also hoping that having a sustained remission will enable me to build back financial security, which has taken a severe hit. I’ve been unable to work since my diagnosis, and although Medicare fortunately covers most of my medical expenses, I still need to rely on patient assistance programs from pharmaceutical companies and charitable foundations to help defray the cost of my care.
Asking for Help
In addition to financial stress, having a cancer that is incurable also puts a strain on relationships with loved ones. I’m single and have always valued my independence, but having cancer has humbled me. Arguably, among the most difficult experiences for me throughout this long ordeal is learning how to ask for help, but cancer is not something I can do alone.
During my recovery from the CAR T-cell therapy, I will need weeks of 24/7 home care. I’m grateful to my sister, Kathy, who has been by my side throughout this illness, and to my local LGBTQ+ community, who have been cooking meals for me, driving me to medical appointments, and staying with me when I need assistance. It really does take a village to navigate cancer and its treatment.
Balancing Life and Death
Before I was diagnosed with multiple myeloma, I thought I would use my skills as a visual artist to supplement my Social Security income after I retired. Now, because of severe cramping in my hands from the cancer drugs, I’m not sure that will be possible.
To stay grounded and keep from thinking too far into the future, I try to live in the moment, but it’s difficult. Coping with cancer has been a process. I’ve had to learn how to balance the uncertainty of living with an incurable disease and the possibility of long-term remission, and even cure—life and death. As long as there are more effective therapies on the horizon for me, I remain positive about my future. n
Ms. Pruess, 68, lives in Tampa, Florida.
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.
