Katie Clarke was diagnosed with breast cancer in 2011. She underwent a bilateral mastectomy with reconstruction at NorthShore Glenbrook Hospital, followed by four months of chemotherapy and a year-long course of Herceptin treatments at Evanston Hospital. 

Before her own diagnosis, and in memory of her best friend who lost her own life to the disease in 2006, Katie and her family would make a point of cheering on the participants of the three-day breast cancer walk in Chicago armed with motivational signs and licorice. This, and her own breast cancer journey, would later inspire Katie and her sister to found The Licorice Project.

In part one of this two-part series, Katie shares her NorthShore patient story, from her road to diagnosis, to what’s next for her and the passion project born from her experience with breast cancer:

How did your journey to diagnosis begin?
In 2011, at the age of 45, I found a lump in my breast, despite the fact that I had diagnostic mammograms every six months for the previous 1 1/2 years and no family history of the disease. An examination, diagnostic mammogram, ultrasound and biopsy confirmed the diagnosis. 

How did you feel in the weeks after diagnosis and during treatment? What was hardest? What was surprising?
I felt scared and overwhelmed in the weeks following my diagnosis. There were so many appointments, tests and decisions to make in a short amount of time. During treatment, I felt sick for a couple of days after chemotherapy but then felt fine for the next two weeks, and even went back to substitute teaching until the next round of chemo. I just did what I was told by the doctors; I kind of felt like I was on autopilot. 

I didn't really process my emotions until I was finished with treatment. Then I thought, "What just happened to me?" Once I regained my energy, I had trouble "re-entering" my active and hectic family life. My priorities had changed: I wanted to just relax and enjoy a slower-paced life with my family.

I would say the hardest times were recovering from surgery and the management of lymphedema. But what surprised me were the silver linings that I encountered, especially all the wonderful people I met along the way. 

What brought you to NorthShore for your treatment?
My father, Dr. William Kerr, [was] a physician at NorthShore. Evanston Hospital has been a part of my family's life forever. I have received all my medical care there. 

A Surgical Oncologist, was recommended by my OB/GYN’s office. The doctor and I live in the same community. We know each other personally through our children's sports teams. I never imagined I would become one of his patients. I’m honored to call him both my doctor and friend.  

I felt well cared for by everyone at NorthShore, especially everyone on my care team: Dr. Douglas Merkel (oncologist), Dr. Joseph Feldman (lymphedema), Dr. Kim Grahl (internal medicine), Dr. William Banzhaf (obstetrics and gynecology), Bonnie Ryszka (oncology nurse), Meg Madvig (Kellogg social worker), Maria Sobel (physical therapy for lympedema massages) and Patricia Piant (acupuncture). The staff at NorthShore is loving, knowledgeable and compassionate. I feel so lucky to have been taken care of by the incredible staff at NorthShore!

What do you know now that you wish you’d known before/during treatment?
I wish I had been more knowledgeable about the long-term effects of lymphedema. (Editor’s Note: Lymphedema is a swelling that occurs in arms and legs, but generally only in one limb. It’s caused by a blockage in the lymphatic system, which prevents lymph fluid from draining. Lymphedema can be caused by another condition or a disease that damages lymph nodes or vessels, like surgery, radiation, cancer and infection.)

What helped you most during treatment?
Family members and friends accompanied me to all of my treatments (17 in total). I chose to use these days as an opportunity to spend unique quality time with friends and family. 

Where did the idea for The Licorice Project come from?
Shortly after my treatment began, I started mentoring others and sharing resources and tips that had been helpful to me. It’s so important to connect with others who have “been there, done that” and can help manage expectations. At the same time my sister, Kendra, was getting involved in the Chicago startup scene. Together, we wondered what we could do to help make the journey less overwhelming for future breast cancer patients and the people who care about them. We searched for a way to use technology to connect and empower people but to also facilitate offline relationships. The Licorice Project was our answer.

Our goal is to change the breast cancer experience by connecting people locally, sharing resources, and making it easier to give and receive help. We focus on the practical, social and emotional aspects of having breast cancer, and strive to complement what the medical community and other cancer organizations are doing. 

Why Licorice? 
While participating in our first breast cancer walk, we were touched by those who came out to cheer us on and give us treats—like licorice. That inspired us to begin our own family tradition of handing out licorice to walkers in Chicago as they passed through our neighborhood. This simple gesture made people feel happy and upbeat and brought a smile to their faces. Our hope is that The Licorice Project will improve the lives of everyone affected by breast cancer and spread a little unexpected joy along the way.

What’s next? For you? For The Licorice Project?
I feel great! I will continue to have my blood work done and see my doctors every three months. I’m passionate about mentoring newly diagnosed patients and honored to serve on the Oncology Patient Advisory Board at NorthShore Kellogg Cancer Center.

As for The Licorice Project, we are focused on building our local community and the team. Eventually we hope to expand it to numerous locations across the U.S. so we can provide hope and inspiration to as many people as possible.

What advice would you give to newly diagnosed women?
The best advice someone gave me was to take this journey in stages, one step at a time, otherwise it will be too overwhelming. Try to accept help from others—it’s good for you, your family and the people who want to support you.