Rising Above AL Amyloidosis: Shalise's Story of Hope
My name is Shalise Gorrell, and nothing could have prepared me for this diagnosis or the journey that was to come. I was only twenty-six years old when I received my diagnosis, but I had endured well over two years of gradual symptoms leading up to that moment. My symptoms started off small, with some swelling in the legs, and shortness of breath; things that were easy to overlook in the beginning. Yet, my symptoms persisted and became more impactful, such as consistent weight gain despite strict dieting, an inability to walk due to breathlessness, hardening and swelling in the abdomen, and consistently puffy eyes. Collectively, these symptoms didn't stand out as anything to worry over, but whenever I did begin to worry, the people closest to me insisted that I was overthinking. My primary physician at the time assumed that it was just my new job, that with time these symptoms would pass, and assured me that I was healthy. At the time, as a full-time graduate student, outside of school and full-time work I didn't have much free time to consider otherwise, and therefore things continued to fester.
For months I was dealing with worsening edema, severe constipation, abdominal pain, terrible fatigue, and reoccurring infections. I began to notice an abundance of foam in my urine, blood clots in my mouth every morning, and debilitating fatigue that even sixteen hours of sleep could not cure. By the time I realized I wasn't a hypochondriac but severely ill and actively dying, I had become a shell of my former self. Despite feeling discouraged, I decided to make another appointment with my primary physician, and my lab results came back showing abnormal renal function. Finally, a nugget of hope for a diagnosis and solution!
In a devastating turn of events, a renal biopsy confirmed this was bigger than just renal disease. I was urgently referred to the Cancer Institute of New Jersey. My symptoms continued to worsen, and by the time my bone marrow biopsy was scheduled, the local anesthetics used couldn't numb my pain. I had to endure several biopsies and surgeries without pain relief. In October 2019, just a month after the last biopsy, I was formally diagnosed with AL Amyloidosis. This disease was attacking my kidneys and would be fatal if I didn't take swift action. I had little to no time to process what was happening. I was young, in pain and despair, and declining rapidly. I was scheduled to be admitted into the hospital that November for a Stem Cell Transplant, but due to a dangerous increase in water weight and light chains, I was admitted in October due to the threat of multiple organ failure.
I received a high-dose infusion of Melphalan on November 6th, and by my 27th birthday on the 11th I had lost most of my hair, my skin became ashen, I had bloodshot eyes, and my kidneys failed. With the renal decline, the water weight increased by pounds each day, and my breathing began to decline. As my breathing declined, I began to lose consciousness, gradually waking up less and less. And... I eventually coded. I’ll never forget that feeling of transitioning, it was an unexplainable peace, where everything seemed so simple; I remember telling my family not to grieve for me, that “God has been good to me, even in my suffering, I have been blessed.” It was my family and my oncologist Dr. Dennis Cooper who demanded the emergency dialysis and life support that saved my life. I returned home after Thanksgiving, with much to be thankful for; I was alive, and in remission.
I remained on dialysis until mid-2020 and continued taking chemotherapy & immunotherapy well into 2023. Even as I rang the victory bell for my final chemo treatment, many health professionals warned me that I wouldn't be able to walk long distances, that I would have limited energy, and that I would be limited in what I could do. Although my life is still much different than before, I have been blessed to recover and to continue to recover more than what was expected. I was able to complete maintenance immunotherapy and chemotherapy, months of dialysis, and recovered from almost dying; I can run long distances, and I'm able to excel at everything I continue to commit myself to. I have been renewed with a newfound joy for life and a completely new perspective. We are fragile creatures, indeed, but in that fragility lies our strength.
I have found strength in sharing my story to all who care to listen, in hopes of encouraging others to trust their intuition above all else; and to encourage survivors who are battling this difficult disease, to hold on to hope. To those who are suffering, remember that pain is a universal language, but so is hope. Let us speak hope to each other, for it is in our shared vulnerabilities that we find our most profound connections. God has been good to me, even in my suffering, and I share my story to affirm that joy, true joy, is possible for us all.