My name is Caroline Johnson. I am a wife and mother to three teenagers. Our youngest and only son, Michael, was born in 2005. We left the hospital believing we had a healthy baby with a suggestion to have a repeat hearing test. That test would begin a lifelong journey in the world of "special needs". Michael would later be diagnosed with a rare genetic deletion that would cause him to have developmental delays, Autism, Epilepsy and communication disorders. I quickly became an advocate for him traveling the U.S. in search for treatment options and finding the educational tools we would need to help him meet his full potential.
In June 2013, after finding a lump in my left breast, I received the devastating news that I had breast cancer. Using my experience gained from advocating for my son, I quickly went on a quest to save my own life!
The standard of care for my type and stage of breast cancer consisted of chemotherapy, radiation and several surgeries. I received 19 rounds of chemotherapy and 28 radiation treatments that ended on Valentine's Day in 2014. I was excited to walk out into the waiting room full of family and friends to help me celebrate the end of radiation treatments.
During my treatment, I learned that too many people who are diagnosed with breast cancer have disease progression. An estimated 20-30% of breast cancer patients will experience metastatic breast cancer. This is when breast cancer spreads from the breast to other organs. Once this happens treatment is lifelong and the median survival rate is 3 years.
I was surprised to find that within the breast cancer giving community only 10% of available funding is directed to research specific to metastatic disease.
I wanted so badly for the false sense of security that I had gained from the pink ribbon and breast cancer awareness campaigns for early detection to be exposed. Twisted Pink opened in June 2014 and since that date we have been on a mission to fund the very best metastatic breast cancer research available to help provide hope to people facing a stage IV breast cancer diagnosis. We have donated over 1 million dollars to support bold breakthroughs in research since 2015. Our research project support can be reviewed here.
If you already support our mission, we thank you! If you are visiting us for the first time, we would love to have your support because we need research, not ribbons!
I was hospitalized for an infection in my tissue expander in 2015 and we celebrated my daughter, Ella's, birthday in the hospital that year. My reconstructed breast became infected from the radiation treatments and had to be removed. I went without a breast for eight months and then had a tram flap reconstruction procedure to replace the failed tissue expander. It was important to me to feel normal again while continuing to fight breast cancer.
Today, I take a daily medication called Arimidex that prevents any cancer cells left in my body from growing on the hormone Estrogen. I also received a Lupron injection once a month to prevent my ovaries from producing the hormone. Because of side effects, I opted to have my ovaries removed in November 2017.
I remain hopeful that my cancer will not return.