On May 30, 2017, 9 days before I turned 19 and soon after I had completed my sophomore year at college, I was diagnosed with aggressive acute lymphoblastic leukemia. But getting to the diagnosis was a tortuous process.
I had been feeling fatigued and losing weight for several weeks prior to the diagnosis, which I had attributed to my hectic end-of-the-school-year activities and part-time job at a retail store. When the symptoms grew more intense and now included back pain and dizziness, I knew I couldn’t ignore them any longer. I also knew that getting health care would be complicated because of my status as a DACA (Deferred Action for Childhood Arrivals) recipient.
My parents are undocumented immigrants from Mexico. They brought me to California from Mexico when I was 4 years old. Because of our undocumented status, receiving health care when I was growing up was inconsistent, and I didn’t have a primary care physician. So, I instead went to my college health center and met with a doctor there. After explaining my symptoms, the physician drew some vials of blood for testing. It was the first time I had had my blood drawn.
Liliana Paez-Gallardo
The doctor returned soon after with the test results and said, “I think you have some type of internal infection, but I don’t have equipment here to conduct further tests. You have to go to the hospital emergency room for additional evaluation.”
My mother worked during the day, so I went to the emergency room by myself, and it was terrifying. I waited 12 hours in the admitting room before a bed was available. The physician there ran more blood tests, gave me an abdominal ultrasound scan, and told me there was nothing wrong with me. “You just have severe iron deficiency,” he said. I showed him the blood test results from the health center, which differed radically from his test results, but he insisted my blood work was normal. He gave me a prescription for iron supplements and told me to go home.
I didn’t know whether to feel relieved or more anxious. I got my answer later that day.
Looking Death in the Eye
I received a call from the hospital saying that upon further evaluation of my blood test results, I had to return to the hospital for additional tests. “A bed was waiting for me,” I was told. I knew then that whatever I had was serious.
After being admitted to the hospital, the doctor I had previously seen, told me he ran my blood workup again, and I likely had a type of leukemia. “You are now a patient in this hospital,” he said. My mother was with me, but because she doesn’t understand English, I had to translate everything the doctor was telling me, and the worried look on her face only increased my own anxiety.
I had always had a fear of dying. Now I was getting a close-up look at what dying looked like.
I was transferred to Children’s Hospital of Orange County, California, where I received a bone marrow biopsy, which confirmed the diagnosis of acute lymphoblastic leukemia.
At first, I thought maybe the tests were wrong and I didn’t really have leukemia. And, even if I did, I rationalized, treatment would be over quickly, and I could resume my college education in the fall. I was wrong about the treatment being over quickly. In total, it took 2½ years to complete treatment. But I was right about being able to return to college in the fall. In fact, I was able to complete all my courses despite serious side effects from the cocktail of chemotherapy drugs I was prescribed, including near kidney failure.
While I was in the intensive care unit undergoing kidney dialysis, I felt I could die. I came to accept death in that moment and thought if I die, it is what God wants for me, and I’m okay with that. I no longer feared death.
Overcoming the Side Effects of Cancer
I threw myself into my college studies, but, I admit, it was very difficult. I had brain fog so serious I would completely forget whole paragraphs of what I had just read and would have to go back and reread the information several times before I was able to retain it. I was so determined to earn my degree on my own merit that I didn’t tell any of my professors I was ill. I didn’t want anyone to feel sorry for me or to give me special consideration because of cancer.
I earned a 4.0 grade every semester and graduated with a degree in sociology and a minor in human services. I’m now working on a master’s degree in medical social work.
Giving Patients the Gift of Honesty
Although I am cancer-free, I’m still coping with the remnants of the disease and its treatment. I have avascular necrosis of my right shoulder, some gastrointestinal issues, and survivor’s guilt. My closest friend, Bre´Anna, died of leukemia in 2021, and I’m left wondering, “Why her and not me?” I’m working hard and living the best life I can because I don’t want to let her down.
I’m dedicating my life to helping others coping with cancer, especially adolescents and young adults. This year, I completed an internship in palliative care, and having conversations with patients about their goals of end-of-life care has been enlightening. No one ever talked to me about my end-of-life preferences or what my treatment limits might be, and I’ve come to understand how important those conversations are in preserving a patient’s sense of control and quality of life for as long as possible.
I knew when my oncologist was avoiding having uncomfortable conversations with me, and the void left me feeling scared and alone. I don’t want other patients to have that experience. I want oncologists to know that it’s okay to be open and honest with us. Knowledge really is power. Don’t take it away from us.
Ms. Paez-Gallardo lives in Irvine, California.
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.
