Losing Hair, Gaining Perspective: Leukemia Patient Reflects on Hair-Loss Journey

When I was diagnosed with Acute promyelocytic leukemia (APL leukemia) March 30, 2022, one of the first questions I had was “Will I lose my hair?”. I knew that it was an unimportant question to ask at the time given the major bombshell that was just dropped on my life, but I was so overwhelmed I didn’t know what to think.

It wasn’t immediate. At first it was only a few dozen strands coming out while I was sleeping, which caused me to itch like crazy. I started to put my hair in a ponytail, which helped, but then it started to get matted. On April 19, just 27 days after starting chemo treatments, when I was brushing my hair, my brush came back with a larger clump of hair than normal. After that I started researching caps and wigs because I knew what was coming next – I would be losing my hair.

For most people, hair is part of personal identity whether male or female. We style it to express ourselves just like we style our outfits.

The day I decided I wanted my hair shaved off, I was not thinking about empowerment or anything noble – I just wanted the itching to stop. I remembered my nurse telling me one day that she had helped patients shave their hair before and asked her if she would do that for me.

On April 27, my parents, nurse, and I got ready to shave my head. My mom braided what was left of my hair (which was substantial) and cut it off, then my nurse came in with a razor and started to shave the rest off, as I held my mom’s hand. After it was all over both my mom and nurse said they would not have been able to do this if the other was not there, which I found ironic since I felt that way towards the nurse. It didn’t feel real. The shaving of my head felt clinical, emotionless, numb. That’s how I felt for a long time towards my head. I avoided looking at myself in the mirror for a long time not wanting to picture myself as I truly was.

Later on, I asked my nurse when she started offering to shave patients’ hair. She said, “A [cancer] patient I was assigned to one day had been through a lot. I could tell the person just felt out of character, not themselves. I simply asked if they would like to get cleaned up. Sometimes as nurses we forget the very simple tasks of being or feeling like a human being. Being able to complete basic tasks such as showering, brushing teeth, etc. So I helped clean that person. They had a wound on their head and their hair was shaved in one spot. After the person was cleaned, they asked for a razor. I asked why, and they said they wanted it all gone. That my dear, is how it all began. Each person with their own beautiful story. It may not seem like a lot to many, but to me. Seeing someone take back their power is the most beautiful process anyone can witness.”

She says that she will never forget her first female cancer patient. "She had long, beautiful dark hair. She knew eventually once she started losing it, it would be all gone. So, she asked for clippers. She and her family did it herself. One of the bravest women I have ever met in my entire life. Her entire aura changed after that. It’s like I could see the fight in her, see her strength and beauty.”

I felt vulnerable around my family, friends, strangers, and even nurses and doctors if I didn’t have a cap or wig on. I still wear a wig or cap when I’m out in public; partly so I don’t get sad, pitiful looks from people, and partly so I look “normal” to others.

I asked the nurse if any of her former patients she helped reached out to her once they reached remission? “Some, yes. Others, well, got their own peace.”

I have come to terms with my lack of hair and was excited when I started to feel it already growing back. Through this experience I have learned that hair is not so important in the long term, but instead just a fraction of what makes up who I am as a person, just how APL is just a fraction of who I am.

I am more than my hair. More than my cancer.