Christina Bain is a part-time web developer for a knitting and crochet website and a full-time cancer survivor. Her disease is chronic, and she will be in treatment for the rest of her life. She is sharing her story in recognition of March as Colorectal Cancer Awareness Month.
It was August 2015 when I heard the dreaded words, “You have cancer.” As a 31-year-old, I was shocked to hear that I had colorectal cancer, but after looking up the survival statistics on the drive home, I felt confident that I would be one of the majority who is still alive within five years of a stage 3 diagnosis. I was OK with giving cancer six months of my life and putting it behind me. Looking back three years later, I’m glad that I was able to have such initial optimism. It would be one year after my initial diagnosis that I would find out my cancer had spread to my lungs, and two years after that when I would learn that my cancer is not curable with the medicine available today.
Having that information doled out slowly helped me to process it, and to keep some of that initial confidence inside me as a quiet flame that’s not ready to be extinguished.
Five surgeries, four chemotherapy regimens and three rounds of radiation have taken their toll on me. I am no longer an able-bodied person. Side effects cascade and cause new issues to address. As time has passed, my body feels less and less like it belongs to me — and more like a medical device for my team to interface with. As I have ceded control of my body, however, my voice has gotten stronger. I am sharing more about my diagnosis and my daily life in bigger and more challenging ways.
One big step in this process was joining the LIVESTRONG Cancer Institutes’ Young Adult Advisory Board. We meet monthly to advise on the LIVESTRONG Cancer Institutes’ clinic and the launch of the CaLM Model™ of whole-person cancer care — co-designing everything from website content to patient programming to measuring outcomes that are important to us as patients. Being part of this group has been incredibly rewarding to me and has led to amazing opportunities to share my story.
I have been part of a panel that spoke to high school students interested in health care careers, as well as a panel at South by Southwest where the CaLM model was officially announced. The most terrifying and most rewarding, however, was my work with Austin Classical Guitar to write a song about my cancer. I worked with Travis Marcum, the director of education, and together we decided on a sound I wanted for the song and what I wanted to communicate. We started this project shortly after I discovered that my condition is chronic, so I knew I wanted the song to say I was OK with walking this line of hope and acceptance. I had no idea what to expect from the process, but Travis was a great listener and was able to find what pieces connected to make a song.
They hired a local musician, Claire Puckett, to sing and play guitar and banjo on the recording, and the song was mastered by Nathan Wilkins. I was blown away when I heard the final recording — it sounds so professional! I have loved getting to share it, and I was even able to perform the song live at a fundraiser for Austin Classical Guitar. Seeing how that the song affected the audience was so rewarding, I feel like I was able to communicate exactly what I wanted to say.
Through the Young Adult Advisory Board, I have been able to meet a lot of the staff for the CaLM clinic. Each time I met a new team member I would walk away thinking, “I wish that person was a member of my team.” And at each board meeting, I would feel so encouraged about the CaLM model. There are so many avoidable traumatic parts of traditional cancer care, and LIVESTRONG Cancer Institutes is clearly looking to remove those from the patient experience. It was these factors that made me decide to move my cancer care to the CaLM clinic. It was a tough choice because I also love my current medical team, but having been with them for so long and knowing the social and emotional needs I’ve had to figure out on my own, I was ready to move to a model that puts those things first.
I know some things about my future: that it will involve more treatment and that I am likely to die far sooner than I hoped. I know to keep holding onto that small flame of initial confidence, because while treatment keeps me stable, medicine will keep advancing. I know my care at the CaLM clinic is going to be designed to allow me to enjoy my life outside of cancer, and I will get to laugh at my daughter’s stories and share intimate moments with my husband. I know I want to keep using my voice to tell people about my life and my experience. It makes me feel strong, and I hope it can help someone else — be it getting tested themselves or just learning how to better support a friend going through it. Knowledge is power, and I am happy to share mine.
If you are a young adult cancer survivor and are interested in getting involved in the Young Adult Advisory Board, email the Livestrong Cancer Institutes.