Sarah DeBord

Patient Leader

I was diagnosed with stage IV colon cancer when I was 34-years-old. At the time I was a stay-at-home mom with a 12-month-old and 4-year-old, completely unaware that the symptoms I had been experiencing for almost a decade were a clear indicator of colorectal cancer. I also had no idea that my maternal aunt being diagnosed at 51, and my mother having a long history of precancerous polyps put our family at greater risk of developing this disease. I was at the pinnacle of health and life, living the preventative lifestyle that we’re told to live, yet clueless that a young person could be diagnosed with this disease. I routinely Googled my symptoms, and always ignored “colon cancer” and “rectal cancer” because I was certain that was just “an old person’s disease.” Clearly they are not, as this disease is on a trajectory upward as more and more people under the recommended screening age are diagnosed. I am over 7 years into this, and I am still living with active disease - the same metastasized disease that was present on my very first scan. I know I’m the exception given that I continue to response to standard treatments available, and live with “good, stable disease” as an oncologist once told me. I have over 160+ rounds of chemo and targeted therapy under my belt, and wake up every day knowing there is cancer inside of my body. I also know new drugs are being developed at rapid speeds, and colorectal cancer trials are opening that may one day be the key to my remission. Given my history with this disease, I am grateful for the opportunities I have to speak up and help other patients trying to navigate the rough waters of cancer and treatment. I’m am an administrator in an online patient-led organization called COLONTOWN - a community of 4000+ patients and survivors with colorectal cancer. I specifically work with parents in the community, providing support as we all work to integrate treatment, surgery, and often end-of-life decisions into parenting with cancer. My children have grown up knowing nothing but mommy having this disease, and have been to more infusions with me that most cancer patients will ever go through themselves. It puts me in a unique position to help others trying to parent through cancer in hopes that their children will be alright - whether they live to see them into adulthood or not. I advocate locally when needed with American Cancer Society - Cancer Action Network Minnesota, and nationally with Fight Colorectal Cancer on issues impacting cancer survivors like colorectal cancer screening, research funding and palliative care - lending my voice and story either in person, through social media, or in writing to my representatives. As someone with long-term personal experience in many of the issues facing cancer survivors, I know I represent the voices of many no longer here to advocate for themselves. I also sit on the steering committee for the Minnesota Cancer Alliance, working on objectives to remove the burden of cancer - the leading cause of death in Minnesota. When not working on my to-do list at my day job, I write for CURE Magazine; telling stories pulled from my own experience as a patient and the experiences of others I’ve helped as an advocate. Three years after my diagnosis and subsequent surgery, I was diagnosed with lymphedema. I was shocked to discover that even my own oncologist at the time knew little about the condition, and delayed my own diagnosis for weeks by a physical therapist because he was perplexed at my quickly swelling leg. My own experience with this misunderstood condition has led me to advocate via social media, and help connect others living with a rare and often undiagnosed disease. This advocacy has led me to not only speak up for and educate fellow patients of their risks, but visibly step out with my story and my leg to let others know this could happen to them. Because of lymphedema, rehabilitative care is part of my lifelong cancer plan. Because of my chronic cancer, palliative care is part of my lifelong cancer plan. And because of the longevity I plan on living with this disease, survivorship is part of my lifelong cancer plan. I don’t have the luxury of a short span of treatment and the ability to move on with the rest of my life. Cancer will forever dictate my path, even when I finally have that clear scan. Not a day will go by that I don’t live with repercussions of this disease, and know it is my obligation to fight for others, represent them, and walk to the ends of the earth in hopes of preventing just one more person from hearing those fateful words, “You have cancer.”

Location

Minneapolis, MN

Nominations

Patient Leader Hero

Sarah has been living 7+ years with inoperable metastatic colon cancer, and advocates for young adult colorectal cancer patients, parenting with a serious disease, and lymphedema. She uses her experience of living with chronic cancer to inspire other young adults with CRC, documents her countless rounds of "chemo for life," and shows others that you can successfully parent through it all.  — RiseUpToHIV

Sarah DeBord

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