"So, how'd you become a patient advocate?"

My earliest memory of kindergarten is one of my teacher standing over me, yelling something at me in a language I couldn’t understand. I didn’t speak English as we spoke Polish at home. My name was always on the board. My report card said, “Grace cries too much at school”. I was confused, frustrated, and scared. Eventually I got the hang of this whole speaking English thing and became the English translator in the family.  Every time there was an ailment in our family or inner circle of friends, I was there to help translate and navigate. I’ve been trying to make sense of journal articles, press releases, medical terms and disease conditions since I was a teenager.  I always loved the challenge of explaining a complex situation into something simpler. I always loved helping someone through his or her struggle, especially at a time of medical necessity. It was natural that my junior year of high school, I helped my cousin who was in his early 20’s navigate a diagnosis of testicular cancer. My curiosity for cancer exploded. I was plagued with so many questions. Why wasn’t there a cure? In college I fell in love with biology and chemistry. In 2003, I became one of the first 2 women to graduate Drew University with a Biochemistry major.

My fascination and intrigue with the disease morphed into shock and despair when my mother, only 48 years old at the time, was diagnosed with an aggressive form of breast cancer after her first mammogram.  It was I who encouraged her to get that mammogram. Now her life was at stake. I dedicated endless hours to researching, reading, and deciphering. I went to every appointment, chemotherapy session, procedure, and scan.  I kept detailed medical records, notes, and jotted down questions. I filled out endless amounts of paperwork. All the while, as the weeks went on, my mom got sicker and weaker with each passing round of therapy. How could anyone endure this on their own?

Nothing can prepare you for a loved one’s cancer diagnosis. As you start going through the process, you realize how complicated every step is, how gut wrenchingly scary every bit of information is, how absolutely overwhelming everything has become. How everyone tells you to “think positive” when all you are trying to do is to reel in your imagination from running wild with the worst possible scenarios every time you close your eyes. My mom endured a very arduous battle, with multiple surgeries and endless rounds of chemotherapy and survived. This cancer stuff really had some nerve and I needed to know more about it. But to do that, I needed to know more about the body’s metabolism.

I’ve always been intrigued about mechanisms and how things work. I’ve always been a tinkerer of sorts with a little bit of sparkle.  Think Tinkerbelle, without the wings and fairy dust. But I didn’t apply my tinkering skills to typical hands-on work (though I love a good home improvement project). I was fascinated by how the body worked, by all of the ways the body’s individual systems collaborated and worked so beautifully together in concerted harmony. Even more intriguing was what happened when things went wrong.  And so I pursued a PhD in Biochemistry at Albert Einstein College of Medicine (Bronx, NY) under the supervision of one of the most brilliant, dedicated, and intuitive mentors I could have asked for: Dr. Vern Schramm, who at the time, was the Chair of the Department of Biochemistry. My thesis focused on characterizing drugs for potential chemopreventive use in various models of cancer, primarily prostate and breast cancer. Much to the dismay of my mentors and colleagues, I didn’t pursue a career in academia.  The Tinkerbelle in me knew I needed to fix something though I wasn’t sure exactly what just yet.

I left the ivory towers for a career in medical strategy. As Director of Medical and Scientific Affairs, I had the opportunity to work with many top pharma and biotech companies, developing various aspects of their strategic platforms to move their drugs through clinical trials or to give them a competitive edge against other drugs in their class. Physician profiling, clinical trial analysis, competitive intelligence, hospital assessment, key opinion leader sentiment analysis, and various cutting-edge data analytics became instruments in my tinkering toolkit. I loved what I did and then life happened.

One day, a routine test led to my own cancer diagnosis of advanced lymphoma.  Sitting across from my pulmonologist as he directly called the head of thoracic surgery at Memorial Sloan Kettering, all I could think about is, “Am I going to die?”.  My husband and I had just bought a home; we were newly married and looking to start a family. Not cancer. Getting your own cancer diagnosis is completely surreal, earth shattering, and comes with a fear one cannot describe. My palms are sweating right now recollecting the moment. After a few rollercoaster months of tests, biopsies, procedures, and surgery, I was amazingly ruled a misdiagnosis and sent home to recover, shaken and in pain, though cancer-free.

Leaving a facility like Memorial Sloan-Kettering without cancer was a blessing that I am extremely grateful for, fully aware that this is not the reality for the vast majority. It was then as if all of my life’s experiences had suddenly primed me for this moment. I finally knew what I needed to fix.  

There is a big piece missing in this journey through cancer. A gap between patients and doctors.  A gap between information and understanding. A tremendous gap between a diagnosis and the required empathy and support. An immense gap between everything a patient needs to make an informed and empowered decision about their care and the actual patient. I was determined to become a bridge builder and bring clarity now.  My mission became to foster patient advocacy in the oncology space, to empower patients struggling with the disease, to assist patients and their loved ones looking for information, to empathize and listen while vouching for the health and safety of those struggling with cancer; to bring them enlightening results.