13 Oct The Cancer Calendar
I am an influential person. This is not something I had ever said out loud to myself. Over the last year, I have devoted time outside of my full-time work as a Textile Designer to working as a Young Advocate (YA) for Living Beyond Breast Cancer (LBBC). Going into the YA program, I was not aware that so much of what I was doing in my everyday life after diagnosis was advocacy work. When you are first diagnosed, it is terrifying and difficult not to jump into the first thing a doctor is telling you that you need to do next. Your first thoughts are “Get this cancer OUT of me!” I was diagnosed as stage 1 from my biopsy on March 11th, 2020. Two weeks before the hospital shut down and became a Covid OR. I got an automated text message telling me my lumpectomy was canceled. The nurse navigator I had been assigned to stopped returning my emails and phone calls. I finally got the Surgical Oncologist on the phone. She was confident I was stage 1, and that I could wait to have surgery until July. I spent the next few days thinking “Ok, so I will wait…”
The more I sat with the lump knowing it was cancer, the more I felt like I was crawling out of my skin. I hit the ground running and reached out to my closest friends & family. Sounding an alarm for help finding an oncologist in Texas who was still practicing during Covid. My cancer was not going to stop growing just because it was a pandemic. Although I was immediately put on hormone blockers (my tumor was ER/PR positive), I still did not feel as though I had four months to wait. A friend from high school’s cousin had gone through cancer treatment in Detroit. Her surgeon went to grad school with the surgeon in Dallas who ultimately ended up performing my procedure! If I had not spoken up, and advocated for myself, my cancer would have progressed. I ended up being stage 2A after surgery with one node involved. I learned that doctors should not stage you from a biopsy. They can give you a rough idea, but no one should be made to feel as I did – being so sure I was stage 1 and that I would not have to have chemotherapy. Only to be completely devastated all over again after surgery.
It was from this experience that I realized I can’t sit quietly and watch others go through what I went through (or worse) and not help them to find their own voice. There are times in a hospital room when you feel so small, you feel unseen. It is hard to speak up. It was usually a few hours after an appointment when I would think to myself “what I just heard does not seem right for me.” I needed a place to put all of these feelings and questions I had down, so I did not forget them. On May 18th, 2020, I started making calendar layouts on poster boards. I left room to write daily notes for when I needed to say something more to the doctors or ask more questions. I also started drawing little icons into the calendar squares for reminders to do things like drink more water, set up a payment plan with the hospital, water the plants, etc. From these, I created a book called The Cancer Calendar.
This book was truly something I wish I had during treatment. A go-to for keeping track of appointments, notes for the doctors (especially regarding strange side effects I was experiencing), journal entries, healthy recipes, a light yoga sequence, and recommended products to make the treatments a little more bearable. And to enclose all of this into a book that was pleasing to look at. Something you want to carry with you to your appointments. My hope is for those who need this book to experience a feeling of relief once they start using it. As well as to help them feel empowered to ask the important questions at each appointment. My year of advocacy with LBBC may be ending, but the fight to help those facing cancer continues. I will continue to use my voice and skills as an artist to contribute to the cancer community in meaningful and impactful ways.
Written by Kerri Besse
About Triage Cancer
Triage Cancer is a national, nonprofit providing free education to people diagnosed with cancer, caregivers, and health care professionals on cancer-related legal and practical issues. Through events, materials, and resources, Triage Cancer is dedicated to helping people move beyond diagnosis.
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