Introducing our Experts blog posts. Here you will find the thoughts, views, opinions and guidance from those we consider to be experts in their field.
Kicking off the series we are delighted to welcome Maimah Karmo – founder and CEO of Tigerlily Foundation, an incredible breast cancer foundation based in the US providing education, awareness, advocacy and hands-on support to young women (15-45) – before, during and after breast cancer.
Maimah Karmo is a ten year survivor of breast cancer. On February 28, 2006, at 4:45 p.m., Maimah was diagnosed with Stage 2 breast cancer. She had no family history of breast cancer; and was 32-years old. While undergoing chemotherapy, she made a promise to God that if she survived, she would create an organization to educate, empower, advocate for and support young women affected by breast cancer. After her second treatment, Tigerlily Foundation was born. Beginning in chemotherapy, Maimah grew Tigerlily Foundation from a concept to a national organization, with hundreds of volunteers nationwide, providing breast health, wellness and transformational programs to young women in more than 43 states.
Here Maimah writes about her experience of losing her hair during chemotherapy and what it taught her.
I remember being diagnosed with breast cancer, and the shock of hearing those words. As I navigated the “newly diagnosed” journey – trying to wrap my head around decisions about my treatment plan, outcome, and next steps. It was overwhelming.
I also remember hearing that I could lose my breasts, all my hair, eyelashes, eyebrows…and while this may seem weird or vain to anyone who hasn’t been in the same situation, it seemed that breast cancer was stripping away every part of me – including my identity. While some people may not understand why a person would be concerned about their hair when their life is at stake, the fact is that having a cancer diagnosis takes many things from you. It forces you to make decisions that you never thought you’d have to. It strips you of your internal idea of yourself, and then it forces you to announce your new identify to yourself and the world.
I remember sitting in the chemo prep class, before starting treatment and the person leading the class watching me twirl my hair and looking at me with sadness. I told her not to be sad, that I wouldn’t lose my hair, but then it started to come out, and in clumps.
As my hair began to fall out, I realized that I could let cancer try to take another thing from me, or I could take control and shave my hair, and so I did. As my brother shaved my head, some of the hair just came out as I pulled. Afterwards, I sat on my bed and cried. I put my hair in a bag and kept it for years.
As I navigated my treatment, what my hair loss taught me was learning to care for myself more. As my body “fell apart”, I fell back together again and began to care for myself in a much better way. It’s so interesting what we wish we knew before the “thing” happened and how we grow after something challenging impacts our lives. Here are a few things I learned:
Acceptance: when I was bald, I could really see myself for the first time. I could see all of my face, the contours of my cheekbones, eyes and lips. I saw myself in a way I never had before and I loved her. After treatment, as my hair grew back, it came in really curly. Used to having longer, straighter hair, I didn’t know what to do with it at first, but I loved and embraced the new me. I found natural hair care products and truly basked in seeing myself in a new way.
At the end of the day, I learned that I am not my hair, but girl, I love it!
Personal Power: before, I would see my hair as something to do… everyday, it would take up time to figure what to do with it and to see whether my hair would have a mind of its own. With my new look, I learned to just rock it. I felt like a boss. I claimed power I’d given away, trying to tame myself into a certain look and owned my new, beautiful look.
Self-care: Being bald and seeing yourself bare does something to you. It’s almost like you’re a baby again. As I opened up into my new self, and cared for my new hair, it caused me to pause and appreciate all the parts of me that needed attention and care. I began to make more rituals and more time to nurture all parts of myself.
Self-love: Losing my hair, parts of my body and experiencing all the side effects of treatment taught me the importance of self love. I remember looking at myself naked in the mirror before treatment and whereas I would have been criticizing this or that part of myself, I know thought, “I wish I’d taken the time to appreciate how truly beautiful I am inside and out; and all the trillions of things that go on inside of my body to keep me healthy, glowing and alive.
At the end of the day, I learned that I am not my hair, but girl, I love it! And not having it taught me to see and love myself in a more powerful way. At the end of the day, I’m glad that I am still here. My hair has grown back. I am thankful for the lessons my journey has taught me, because I am changed forever and I embrace all the new parts of me.
It’s wonderful to have a product like Paxman Scalp Cooling that provides patients with options for hair preservation. As an organization that provides education and resources to young women, while we focus a lot of our resources on education, empowerment, advocacy and support for young women, Tigerlily Foundation is very aware that the psycho-social issues are important and self-image is an important part of survivorship at any stage of a patient’s journey.