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Inspirational Stories

Amina

Hodgkin lymphoma (HL)

I’m 22 years old, and I have stage 3B Hodgkin lymphoma (HL).

I was 21 years old, living in New York, and in my final semester of conservatory dance training at The Ailey School when I felt a lump in my groin. My first instinct was to get checked out by my gynecologist, my only doctor at the time. Like many college students my age, I was away from home and didn’t have a primary care physician. I relied on Minute Clinic and urgent care for any medical services. So, my gynecologist ordered an ultrasound and ends up diagnosing me with two ovarian cysts. I’m told to wait and see because cysts tend to resolve themselves after a few weeks. However, four weeks go by, and my lump has grown and multiplied. Simultaneously, I am experiencing pain, fatigue, and severe night sweats. I thought I was going through menopause at 21!

Being a dancer, I’m in tune with my body and knew something was very wrong. I went back to my gynecologist who then referred me for an MRI at the local hospital. Two days before my scheduled MRI, I get a call from the hospital saying my appointment was canceled because I wasn’t 21 and 11 months old and therefore was too young to be treated at that location. This blew my mind! I learned later that this is a common issue young adults with cancer face; we constantly slip through the cracks of the medical system. Nevertheless, I scheduled an appointment at the children’s hospital. But again, I get a call from the hospital, and I’m told a day before that I cannot be seen because my insurance hasn’t approved the MRI. After a month of back and forth between my referring physician, the hospital, and my insurance company, I was at my wit's end. I took matters into my own hands and scheduled my own appointment at the local imaging center. It was on that MRI report that I learned that I did not have ovarian cysts but a chain of inflamed lymph nodes. It was the first time I saw the word “lymphoma.” It may sound silly, but I didn’t know what it was or what it meant.

From the moment I discovered a lump to an official diagnosis took six months full of emergency room visits, scans, every biopsy imaginable, and plenty of emotional turmoil. It was a few weeks after my 22nd birthday that I chose to go back home to Washington, D.C., where I could be supported by family and receive treatment at Johns Hopkins: Sibley Memorial Hospital.

Cancer came at a time when I was ready to embark on my professional dance career and begin a new chapter of my life. Leaving my life in New York was hard, but I know I’m going to get back to doing what I love. In the meantime, I’m staying positive even though this journey is not easy. I’m battling cancer like a boss.

Amina