Sonia’s Story: Facing AML with Courage and Hope

Sonia Barekzai has always called Arizona home, being born and raised under the state’s vast desert skies alongside her brothers, even though her parents’ roots are in Afghanistan. Being the eldest child of the family, she embraced many responsibilities from being a second mother to her younger siblings whom she considers her lifeline to maintaining a lifestyle of healthy and fun habits including going to the gym and lifting weights, attending local Zumba classes and dancing, watching anime, bonding with her mother at concerts and creating memories with her father during their hunting adventures. At other times, she dedicates herself to chasing her childhood dream of being a doctor and spends time studying.

Life took an unexpected turn on April 18, 2023, when she was diagnosed with acute myeloid leukemia (AML). AML is a type of cancer that begins in the bone marrow and swiftly moves into the blood. Life’s greatest challenges often arise without warning. In Sonia’s case, it started with a routine dental appointment for a simple and routine check-up and cleaning. She had an x-ray of her mouth, which is common during such an appointment, and noticed that her mouth was rather sore afterward. Believing that the dental assistant may have been just a bit rough during the x-ray, Sonia dismissed the discomfort. Little did she know that her life was on the cusp of a seismic shift.

The pain intensified over the coming days, and what started as soreness developed into her not being able to open her mouth past a certain point. She was unable to swallow her spit and struggled to drink water and eat both solid and liquid foods. A few days later, when she was able to open her mouth again, she immediately noticed a white sore on her gums right where her wisdom teeth used to be. She quickly canceled her upcoming dental appointment because of the soreness and discomfort, believing that her pain would not allow her to sit through the entire appointment.

Sonia scheduled another appointment with her dentist to voice her discomfort and concerns and was dismissed by the dental assistant without an analysis of her mouth. She continued advocating for herself, along with the help of her mother, until the dentist was retrieved, who initially also dismissed her but then took a look and discovered the sore inside her mouth.

“It took a little bit of time to find the sore since it was positioned at the back of my mouth on the inside facing my tongue,” Sonia shared. “My tongue kept hitting it as well as hiding it from view. The dentist said it was most likely an infection due to trauma to the site and sent me home with clindamycin for a week. However, it quickly made me worse. My right tonsil became very swollen, which made swallowing, eating and drinking nearly impossible.”

At that point, the pain continued to spread to her throat, jaw and ear. She hastily went back to her dentist looking for answers and solutions. Thinking it was now a fungal infection, the dentist prescribed Sonia another antibiotic, nystatin, and recommended that if it did not begin to improve in a couple of days, she should see an oral surgeon.

The pain did not go away.

“I thought I would see my primary care physician (PCP) for a referral to an ENT (ears, nose and throat specialist) first before going to an oral surgeon because of where I was experiencing pain,” she recounted. “MY PCP advised me to see an oral surgeon first. After the appointment with the oral surgeon, I left with no answers again and another prescription for antibiotics.”

The antibiotics did not provide her with the relief she was hoping for. In fact, more symptoms came like a freight train a few days later. Sonia began to experience immense head pressure every time she bent over or stood up. These symptoms are what sent her to the emergency room (ER) when she passed out in the shower.

During her ER visit, she discovered her hemoglobin had plummeted to dangerous levels after having bloodwork done, and a blood transfusion was needed. Additionally, she was told her test results revealed she had leukemia.

“Finally, answers,” Sonia explained. “With a hemoglobin level that low, the ER staff were in awe that I was essentially running on fumes and still functioning normally. Leading up to the diagnosis, I was very mentally tired, exhausted and drained from having gone from doctor to doctor trying to figure out what was going on and being met with no answers and no diagnosis. I felt relieved that I was not crazy about my experiences and proud of myself that I kept advocating for myself despite the dismissals I was met with.”

For the first time in her journey, there was clarity, and a path forward began to emerge from the shadows. In this battle, her guiding light has been Board-certified medical oncologist David Kahn, MD, MPH, from Desert Hematology Oncology, located in Surprise, Arizona. The community oncology practice offers a wide range of cancer services including laboratory services for routine and specialized testing, centralized pathology services, home delivery of oral cancer medications, and on-call oncology pharmacists ready to answer questions among other services.

“Sonia has been a wonderful patient to work with,” said Dr. Kahn. “She always has a very positive attitude, which she has maintained throughout her entire cancer journey.”

Her plan forward, which was created by Dr. Kahn, led her through an intricate maze of treatments. Blood transfusions, chemotherapy and bone marrow biopsies became her new reality. Despite the frequency of aggressive treatments, each step was a step toward becoming healthy again and the future she envisioned — becoming a doctor.

For an independent soul like Sonia, dependency was a bitter pill to swallow during treatments. In the initial stages, she relied on her mother for even the simplest of tasks like eating and using the restroom. This reversal of roles was a poignant reminder of life’s unpredictability.

“Like the strong, warrior-like Afghan women that came before me, I have always been very strong-willed and independent,” she shared. “So, it is a very strange shift in dynamics, having to depend on others to take care of me.”

In the face of cancer, she discovered an unconventional perspective: she considered herself blessed. This challenging journey offered an opportunity for growth, learning and empathy. The cancer journey, paradoxically, became her greatest teacher and gave her insights into the type of doctor she hopes to be.

“I haven’t approached this as an ‘Oh, no, I have cancer’ attitude,” Sonia said. “I have been approaching it with an ‘I was blessed with cancer’ attitude. It is a blessing to be able to be put through something of this magnitude and come out on the other side of it with tools, knowledge and wisdom to better help and care for others.”

As she navigates the healthcare system, this time as a patient, she has witnessed the best and worst of healthcare. Her experiences carved out her resolve to advocate for the underserved and vulnerable. As such, she has vowed to treat every patient with the compassion she encountered during her own battles.

“I have met a lot of doctors along the way,” she said. “Dr. Kahn and his team have been phenomenal, and I look up to him as someone I want to be like, not only as a person but as a doctor as well. My experience of being gaslit and dismissed, having my symptoms ignored and overlooked, being interrupted and talked over as I’m trying to speak and explain things by numerous doctors has only strengthened my already burning desire to advocate for those who cannot advocate for themselves. It is frustrating when professionals who are trusted to make you feel better do not take you seriously and make you feel crazy and/or dramatic. No one deserves to feel that way, and I look forward to treating my own patients someday with nothing short of genuine compassion.”

Sonia’s journey is not yet over, but with her dream of becoming a doctor still aflame, she marches forward, inspired by her trials and armed with an empathy born of personal experiences.