How an AML Survivor’s Resilience Saved Her Life

How an AML Survivor’s Resilience Saved Her Life

How an AML Survivor’s Resilience Saved Her Life from Patient Empowerment Network on Vimeo.

Acute myeloid leukemia (AML) patient Sasha’s symptoms were dismissed multiple times before her diagnosis. Watch as she shares the story of her cancer journey from diagnosis through treatment as a BIPOC patient – and her advice to other patients to receive equitable and optimal care.

See More from Best AML Care No Matter Where You Live

Related Resources:

Empowered AML Patient: Ask the AML Expert

Empowered AML Patient: Ask the AML Expert 

Does Acute Myeloid Leukemia Prognosis Vary by Age?

Does Acute Myeloid Leukemia Prognosis Vary by Age? 

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial 


Transcript:

My name is Sasha. I live in Brawley, California. In 2017, I was diagnosed with acute myeloid leukemia (AML). When I first noticed signs and symptoms, I wasn’t sure what was wrong, but I knew I didn’t feel like myself. I was really tired, fatigued, and getting random little bruises everywhere.

I went to my local hospital three separate times, and each time they didn’t take my concerns seriously. I’d sit in a room for hours until someone finally walked by, and I’d ask to see an expert. Staff members assumed I had already been discharged without even know what my “diagnosis” was.

When I was finally seen, they ran a few tests and sent me home saying it was just anemia or a blood disorder and if I took whatever medication they prescribed, I’d be okay. I felt very ignored. As a plus size woman of color, I’ve been told all my life from medical professionals, no matter what my issue was, if I just lost weight, I’d be fine. There were even moments when the staff assumed I didn’t know English and rudely commented behind office doors. Ironically, they thought I couldn’t understand when English is actually my first language. I knew there had to be a better explanation, but I let the medical staff push my concerns aside.

Finally, after a battery of tests, I remember the doctor walking in the room. He was acting very sad and very concerned. He put his hand on my shoulder and said, “I’m really sorry to tell you, but you have leukemia.” The day of my diagnosis, I started chemotherapy and began experiencing several side effects. One of the hardest things after being diagnosed was losing my hair. Not seeing my family was equally difficult, because my parents didn’t have the gas money or transportation.

After the full week of chemo, we had to wait for results to see if the leukemia cells were gone. It was mostly a waiting game. Finally, they told me the chemotherapy worked and that the leukemia cells were gone. But in order for them to stay gone, I would need to move forward with the bone marrow transplant.

Fortunately, the results came a few months later indicating the transplant was working. I am happy to report I’m cancer-free, but the road has not been easy. If there’s one thing I learned from my situation, it’s always trust your gut. If anyone knows your body, it’s you. My advice to other AML patients:

  • Trust your gut and listen to your body. If you feel something is wrong, fight for yourself
  • Get yourself a good healthcare team who will also fight for you and your needs
  • Make friends and talk to others in the cancer community
  • Mental health is just as important as physical health. It’s okay to talk to someone professional and ask for help

Remember, you are in control of your journey and your future. These actions are key to staying on your path to empowerment.