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Robert DesJarlait

Patients & Survivors Stage IV Colon Cancer

Story: "In 2013, I was diagnosed with cancer in my ascending colon. My ascending colon was removed and my cancer was classified as Stage I. In 2016, I had a recurrence with Mets to my liver and had the left lobe of my liver removed. As a result, I am Stage IV with spread to a distant part of the body. During this period, I went through 16 rounds of chemotherapy. I have been NED since November 2016.

"A friend of mine once said: 'Your journey has helped me. Learning to tell my story is healing.' This dear friend isn’t a cancer survivor; she is a survivor of a debilitating stroke. She has overcome barriers and tells her story on Facebook.

"I’ve been telling my story for over eight years. I’ve told my story on Facebook and on my cancer blog. My story, in turn, has inspired others to tell their stories. I’ve always felt it is important that Native Americans tell their stories if they chose to do so, not only as a means of healing but also informing others of the obstacles they may face in their path ahead.   

"For me, survivorship means much more than surviving surgeries and chemotherapy. Those are the physical aspects of being a survivor. Being a survivor is about attaining a quality of life, one that replaces the quality of life before they contracted cancer or other catastrophic diseases.

"I rely on traditional Ojibwe beliefs as part of my journey as a survivor. Each day, my life is renewed when I awake. I put out my asemaa (tobacco) offering and set out to accomplish goals that I’ve placed before me. I don’t really think about long-term goals; rather, I focus on what I can accomplish in the short term. My future is what lies in the day ahead.

"Developing a positive attitude has hinged on Ojibwe cultural teachings and experiences related to cancer. One experience that deeply affected me was a young woman who had cancer. She saw her cancer as a spirit within her and she would offer asemaa (tobacco) to appease the spirit. It was a part of her daily praying. There is a teaching by Ojibwe healer Gidagaabineshiban who taught that cancer should be approached with respect and not hatred if it is to be healed mentally, emotionally, and spiritually.

"Support has also been important in my healing. My wife and caregiver, Nan, has given me unconditional support (and love) as well as my family and community. The American Indian Cancer Foundation (AICAF) has been instrumental in my support. In 2018, AICAF launched the Powwow Colon Cancer initiative in which I traveled to powwows and told my cancer story, and stressed the importance of screening.

"This year, I’ve been named the 2021 Minnesota Colorectal Cancer Champion by the Colon Cancer Coalition in recognition of my work. But the award isn’t about me. Rather, it’s about the other cancer survivors that I know and, in particular, those I’ve known who have been lost to this devastating disease.

"I’ve come to an understanding that cancer is a spirit within me. My cancer is me. And like that young woman, I offer asemaa to appease that spirit within me. In doing so, I am not honoring death, but rather life.

"As such, the shadow of fear is lessened on my journey as a survivor. Hope is what guides me, not fear. I need not worry if I leave an unfinished garden. It's what I've planted that gives hope and courage to others."

Advice: "One of the things that I had to do was change my wardrobe. My oncologist suggested that I wear loose-fitting clothing. For pants, I switched to joggers. Joggers are loose-fitting pants with a draw-string on the waist. For shoes, I switched from leather or man-made leather tennis shoes to tennis shoes made from soft fabrics. For upper wear, I bought hoodies. I also wear base layers. I have cold-sensitivity issues related to past chemo side effects. As a result, I wear layered clothes in the fall, winter, and spring. 

"The American Indian Cancer Foundation offers in-depth information on cancer in the Native community: American Indian Cancer Foundation for Cancer Screening Test & Awareness. This is the best social media support group for those dealing with colon cancer. Although the group is private, it’s easy to join. Members are survivors who offer tips and advice to those beginning their journey: Ihadcancer is a social media site for survivors that offers survivors the opportunity to write and publish their stories on the website.

"When a person is first diagnosed, it’s important to learn as much as you can about your cancer. All too often, we don’t have the information we need to ask our oncologist specific questions related to our cancer or more specific information on the type of chemotherapy that we will be subjected to. There are a number of organizations, hospitals/clinics that provide trusted information, including American Cancer Society, National Cancer Institute, Mayo Clinic, Memorial Sloan Kettering Cancer Center – these are just a few online sites that offer reliable information."

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