The mission of Twisted Pink is to extend life and improve quality of life for late stage breast cancer patients and their families by funding metastatic (stage IV) breast cancer research.
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 chemotherpy, radiation and several surgeries. I had a total of 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 get breast cancer have disease progression. An estimated 20-30% of breast cacner patients will have their brest cancer metastasize (spread) 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 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. We have donated a total of $440,000 and you can review this funded research 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 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 get a Lupron injection once a month to prevent my ovaries from producing the hormone. This causes side effects that I have decided to live with for now. The new standard of care is to be on this medication for ten years past diagnosis. I am hopeful that my cancer will not return.
Update: I opted to have my ovaries removed in November 2017 and no longer need to get the Lupron injection.