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Maimah Karmo

When we embark on this journey called life, one never knows the twists and turns that fate…or destiny will bring. I had life all planned out then and for the most part, it happened just as I’d designed it, until I heard the words, “you have breast cancer”. That was not part of my plan. Those four words threw me into a tailspin.

I remember my mother teaching me to do my breast self exams at thirteen years old. It was raining that day. She told me to do them every month and she told me that if I did, when a change occurred, I would know. Her words echoed in my head as I stood in the shower 18 years later and felt the lump in my chest, “you’ll know”. In an instant, I knew that the lump was no good.

As soon as I discovered a lump in my breast, I went to see my doctor. I had no history of breast cancer. My OBGYN referred me to a breast surgeon who examined me, performed an unsuccessful aspiration, then told me that I was too young to get breast cancer so I should just ignore the lump. “Come back in six months”, she said, “if it bothers you that much. I really would not worry about it”. Six months later when the lump had doubled in size, I made another visit to see the doctor.

This time, I insisted on a biopsy, against the doctor’s wishes. She was patronizing while doing the exam, even suggesting that I was wasting her time and mine. About 24 hours later, she called – the biopsy revealed breast cancer. The day was February 28, 2006.The time was 4:45 p.m. I immediately got a new doctor. I had breast cancer. This was never supposed to happen.

I later found out that I had triple negative breast cancer – the most aggressive kind of breast cancer, and the kind with no specific targeted treatment. The cancer was at Stage II. What if I had listened to her? If I had waited six months, I may have been facing a death sentence.

With a new medical team in place, procedures and treatments began. I’s cancer was an aggressive Stage 2. My Elston score, which measures the cancer’s aggression, was high. I went through the initial fear and shock followed by overwhelm. My biggest concern was for my 3- year- old daughter. I was terrified that I might not be able to be the best mother during this time, and what if I died? One night, during my second round of chemotherapy, I made a promised to God that if he restored my spirit, I would give my life to Him in service. The next day, Tigerlily Foundation was born. It gave me new life. As I tried to figure out how I should focus the foundation’s mission, I knew that it had to be something that would impact younger women. I was learning that my story was not unique. It was the same story told by many other younger women, were also told, “you’re too young to get breast cancer.”

Although women over 40 have higher incidences of breast cancer, younger women tend to have more aggressive breast cancers and higher mortality rates, therefore, are at a higher risk. They are a largely under-recognized demographic – lacking in targeted education and services. Often, younger women and their practitioners are unaware that younger women can and do get breast cancer, which is why Tigerlily focuses on education, prevention and support for this demographic. We work to educate patients…and providers.

The more I learned, the more I realized that my breast cancer diagnosis was part of my destiny. Although it had ripped my life to shreds, having a purpose had given me new life. Going through the pains of surgery, chemotherapy and radiation opened my eyes to the fact that there were thousands of young women I could impact. It wasn’t solely about MY cancer or MY experience or MY life; it was about a larger purpose, and so I would create something that would help to fill the gaps. I founded my Tigerlily Foundation, with a mission of “educating, advocating for, empowering and supporting young women – before, during and after breast cancer.” Our programmatic goals are: 1) to educate young women about breast health and encourage healthy lifestyle ; 2) to end isolation among young adult breast cancer survivors; 3) to improve quality of life for young survivors; 4) to provide practical services and support during treatment; 5) to create self-advocates; and 7) to decrease health disparities.

As I focused on helping others, I healed too, without even realizing it. I surveyed other young breast cancer survivors I met. Many of them faced the same challenges that I had. They were told that they were too young, they felt alone, they were not counseled thoroughly about fertility options, they didn’t know how to cope with re-defining the self, their role as a wife, mother, as a new person. They lived with the fear of recurrence, fear of being rejected because of their missing breast(s) or scars; and for those who were Stage 4, they would spend the rest of their lives fighting a battle that they would most likely lose to breast cancer.

Tigerlily had to offer practical services, like education focusing on younger women, peer support, buddy bags, meals, financial assistance, support to young women living with Stage 4 breast cancer. We also had to uplift the spirit and empower these young women to live their best life today, thus, our slogan, “Beauty, Strength and Transformation, “ was designed to positively impact and empower young women, encouraging them to view breast cancer from a place of strength, not fear, and to be educated partners in their breast health.

The past six years have brought much laughter, tears, joy and given me strength I didn’t think I had. It has been my honor to be able to serve other young women in need. I often think of the day I was diagnosed and my life since then. I never would have imagined a life better than I have now, where every day, I can do something to help others. I’d love for you to join me and Tigerlily in our mission to impact the lives of young women everywhere. Visit www.tigerlilyfoundation.org for more information or email info@tigerlilyfoundation.org.

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