Jackie’s story: Her Large Cell Lymphoma journey
In April 2008, at the age of 29, I developed persistent flu and pneumonia-like symptoms. Progressive symptoms including fever, aching, lethargy, pain, my first asthma attack in 20 years, and fluid around my heart landed me in the ICU, where I remained for nearly a month! While hospitalized, I was diagnosed with Stage IV Anaplastic Large Cell Lymphoma (ALCL), situated in my lungs.
My diagnosis came about a week into my hospitalization, and my first treatment was administered under sedation. Fortunately, I had a quick response to treatment and officially went into remission/NED later that year. In October, my life was back on track, I regained some independence and my hair grew back. For four years I enjoyed life, participating in survivor camps across the country (First Descents, Project Koru, Camp Hope). I felt free and wanted to put cancer behind me. I did.
I tried. Then in 2012, a nodule grew in my groin and biopsy revealed cancer. This time I followed doctors’ recommendations and agreed to a stem cell transplant. (It was autologous, meaning we harvested my stem cells.) Again, I was NED and this lasted for about a year and a half. However, early in 2014, severe back pain brought me back to the doctor. Disease was in my bones—my second relapse.
I was devastated. By this time, I had been in treatment three times. New diagnosis meant more treatment, another transplant, this time with a donor (allogeneic). With my first transplant, there was fatigue, weight loss, extreme hot flashes, loss of appetite, but I survived it. An allogeneic transplant with a donor’s blood would be different. Lower survival rates, more severe symptoms and side effects, extended monitoring and care… I felt worried and discouraged.
My doctors were determined and encouraging; I am so grateful for them. Dr. Morris at BMTGA was honest and consistent. He and Dr. Silpa Reddy (Atlanta Cancer Care) were realistic and kept their bedside manner. It helped my recovery knowing my medical team had me covered. My second stem cell transplant in 2014 was brutal. I was sicker, frail, emotional, and feeling isolated. My immune system had to recover a second time; my immune compromised state required close care and controlled environments (masks, home, clinic, repeat).
Weeks later, a new nodule appeared at the surface of my skin on my thigh. Again?! Biopsy results came back; ALCL diagnosis for the fourth time in six years. I would receive another dose of stem cells from my brother Charlie, who donated extra stem cells at the time of his original collection prior to my transplant. This new infusion of stem cell cells is called a donor lymphocyte infusion (DLI). These additional stem cells would help my immune system to get me back into remission. I also started treatment once again.
My sixth and final cycle of treatment took place in December of 2014 and for the last twelve years, I’ve been recovering and cancer free! Post-transplant, lots of side effects have come and gone. Skin and weight changes, reproductive challenges, gastrointestinal issues and chronic dry eyes (this remains). My family is BEYOND supportive; my mom (Jerry) was my caregiver and my brothers and father (Charlie, Chris, and ‘big’ Charlie) kept the family abreast of my progress and prayed/visited/called often.
Surviving cancer has taught me to live fully and do things I love in moments that count. I've surrounded myself with chosen people and I cheerfully say yes—happily say no. Now I look for little ways to feed my soul: travel, self-care, quality time with family/friends, stay active, continue to pray and turn to my faith, show gratitude, make healthier choices.
Time is VALUABLE and precious. I would advise patients to remain positive, active, pick up a hobby that RELIEVES stress, and try not to stress over finances. Allow family and friends to help and trust in your medical team. Seek community so loneliness does not become another hurdle.
In 2007, months before cancer, I was admitted to my Ph.D. program at UGA. With the health issues and financial strain, my degree was put on hold. Between treatments, I studied and wrote and in August 2017, I turned 39, I was released from BMTGA, AND I finished my doctorate. That was nine years ago, and I have not stared back. (glances are ok!) When I was diagnosed, I was a school counselor and now I am finally back in this role.
I appreciate Atlanta Blood Services. Without platelets and blood, stem cell patients would be in trouble. BMTGA thank you for the intricate, challenging and IMPORTANT work you do! Dr. Morris and Megan, Raphe, Janet, Tara, Shanette, Wendell, Ms. Sarah (PT), lots of love. I am BLESSED to be a BMTGA Alum!
