Colorectal Cancer Stories
My name is Bob Burlison and I am 65 years old and a Choctaw. I am of the Ahe Apat Okla, Northern District of the Choctaw people. I have been a Physician Assistant for the past 42 years. Practicing Emergency Medicine with the Indian Health Service, private sector and currently with the Choctaw Nation Health Service Administration.
Read Bob’s full story here.
Michaela Marchi (Isleta Pueblo) is the first in three generations on both sides of her family to survive a cancer diagnosis. She learned she had a hereditary cancer condition called Lynch Syndrome at the age of 40, and then she was diagnosed with stage IV colon cancer a few months later. She ended up participating in a clinical trial for immunotherapy and has been free of cancer since April of 2019.
Read Michaela’s full story here.
When the emcee called for cancer survivors to come out to the floor at the 2013 Powwow for Hope, Robert DesJarlait (Red Lake Band of Chippewa) walked out to the shock of all those around him. “It was an emotional experience” Robert said, reflecting on his decision to go public for the first time about his cancer story.
Although he hadn’t officially been diagnosed at the time of the powwow, he knew deep down that it was true. Today, Robert feels it is his responsibility to share his cancer story.
When Robert started to notice symptoms of colon cancer in 2013, he became afraid because he knew cancer ran in his family. His father died of stomach cancer in 1972. After getting sick and going to the hospital, he found out his red blood cell count was low, so his specialist ordered a colon test and a biopsy. Robert had surgery to remove his ascending colon and lymph nodes, which confirmed that he had cancer, but brought the good news that it had not broken through the colon wall.
Robert’s follow-up care included a yearly CAT scan and colon test, and it was three years later that they found a precancerous polyp. A few months after the polyp was removed, a tumor was found in the left lobe of his liver and his neck. The tumor in his neck was not dangerous, but the one in his liver had to be removed. He went through chemotherapy and then surgery in 2016 which left him on the table for nine hours. In January of 2017, Robert started chemo again to remove any traces of cancer that might be left. He has lost all his hair with “no stubble left” and the main thing he struggles with is the fatigue. “Since I’m an active person, it’s hard to deal with.”
Robert uses traditional medicine during his treatment to achieve balance between his physical, mental and spiritual healing. His approach to healing comes from traditions that he has learned throughout his life and include bringing his eagle fan to treatment, offering tobacco and smudging. He believes in the power of traditional medicines to carry him through his cancer journey: “When we get cancer, we have doctors that can remove it, but we have ways of bringing a balance in how we deal with it personally. I don’t believe we have medicine that cures cancer, but we can take care of it in a traditional way. It’s been an important part of healing, combining the two together. If you approach it spiritually, the emotional and physical aspects are brought into balance.”
Robert has been vocal about his cancer journey since 2013. While he understands that some people may be uncomfortable talking about cancer in American Indian communities, he has made the decision to face it head-on. When Robert used to look at his cancer scar in the mirror, he would ask himself “Why me?” With reflection, he discovered that the Creator’s role for him was to be a cancer educator and he embraces it. “Creator put me in this role in the community to speak out about it. Creator wants me to talk about it.”
Robert talks about his cancer story to encourage people to get screened. “If I had gotten my screening when I was supposed to, I probably would never have gotten cancer.” Screening is recommended to start at 45 years of age for American Indians due to their high risk of the disease. “It’s interesting that there are more and more people with cancer. It floors me with what is going on here. If everyone got tested and screened regularly, we wouldn’t see these people cancer.” He warns: “It’s important to get your screening – otherwise you could end up like me.”
Thank you, Robert DesJarlait for sharing your story.
It was a routine colonoscopy that found Donna Hanks’s (White Earth) colon cancer in 2015. She had always followed normal screening guidelines and was shocked to find out her diagnosis. Donna sat down with AICAF to open up about her story for the first time so that others can understand the importance of regular colon cancer screening.
Donna shares that she has always been very proactive about cancer screening, a practice that leads to early detection for her. She had her first colonoscopy 10 years ago, which had some polyps that were all removed. Her second one, five years ago, was also clear.
The third one, unfortunately, was cancerous. Donna went in for a routine colonoscopy in January 2015, where doctors found and removed several small polyps. One large polyp, however, couldn’t be removed during the procedure and was deemed cancerous by the CT scan that occurred later the same day.
When Donna heard the word cancer, she was devastated. The cancer diagnosis shocked her and made it difficult to ask questions or interact with her doctor, a common emotional response. “I was speechless,” she shares, “The surgeon sat there and told me what was going to happen. I didn’t have any questions. I couldn’t even think about that.”
When Donna shared her diagnosis with her family, they reacted similarly. She remembers her grandsons Charlie and Jeffrey asking if she was going to be okay. “I hope so,” she told them. Her family showed their support by accompanying her to the surgery.
Donna recollected, “it all happened so darn fast.” She was scheduled to have surgery by the end of the week, where they removed part of her colon and all of the cancer. She remained in the hospital for five days to recover. Now, she goes in for appointments to check for signs of cancer every six months. Her colonoscopy at the one-year mark did not find any polyps, so she only needs them every three years now. It’s been two years since she was diagnosed and she has three more until she’ll be deemed cancer-free. Donna acknowledges the emotional stress that accompanies a cancer diagnosis: “I think I will be on edge until I hit the five-year clearance.”
Donna remains diligent about cancer screening – not just for her, but for her family as well. She makes sure that her sisters get screened regularly. She also makes sure that her children know that they will need to get screened for colon cancer at age 40 since she had a colon cancer diagnosis. Donna cautions others to get screened as well so that they can prevent colon cancer in their lives: “Get your colonoscopy. It doesn’t hurt. It’s a little uncomfortable, but doesn’t hurt.”
Thank you, Donna Hanks for sharing your story.
For the self-described “shaker-and-mover” Margie LaMorie (Lac Courte Oreilles Ojibwe), it didn’t really hit her that she had cancer when she was informed of the diagnosis in 2009. “I was like ‘get it out of me, I don’t have time for this.’ It’s an inconvenience.” Today, Margie is still moving and shaking as a 78-year-old colon cancer survivor that has traveled to Standing Rock six times.
She shares her story to encourage others not to be scared of the unknown and reassure other “shakers and movers” that it is okay to step back and have others take care of you.
Margie’s husband Rudy was in the hospital for esophageal cancer when she got her diagnosis of colon cancer in 2009, one year after she had her stroke. She had no signs of cancer, just a side ache, and abdominal pain. “It started hurting more and more – it felt like there was apple or grapefruit being crammed into my side.” She knew something was wrong but didn’t tell her husband because he was sick. He figured it out anyway and was initially mad that she wouldn’t tell him. Going into the doctor, they found cancer and immediately scheduled her surgery. “They removed part of [the colon], they scraped around the surface, the area. It was a four-day thing. The temperature didn’t get down because there was an infection.” Rudy helped her through her surgery and supported her as she needed care at home. “Rudy got better to look after me.” Rudy passed away a year later in 2010. “I’m glad I pulled through, glad Rudy lived through to help.”
Margie had a large support system around her as her family went through this hard time. “With the stroke, cancer, his death, everyone came out. 15-17 more people came into my life,” she remarked, including her three foster sons. Her three young sons were officially adopted during this time as Rudy wanted to make sure she wouldn’t be alone. She admitted though that it was hard to let others take care of her as she had been the one taking care of everybody her whole life. She says about that time, “It was kind of embarrassing. Now I need all this help. I don’t want all these people here. Thank goodness for the mental health person who said ‘You gave so much, now sit back and let people take care of you.’ It’s all right and I’m okay with it now.”
Cancer screening is important for Margie as “you wanna know what’s going on inside of you where you can’t see.” She understands why people avoid it though. “It’s the fear of the unknown.” Her advice? “Face it. You gotta face it. [Cancer] is something that has to be talked about and discussed. It touches everyone. I see so many people with cancer, and never thought I was going to get it. I got angry and said ‘Get it out, get it out!’ People should find out what is in there. It’s bad to be not knowing.”
Thank you Margie LaMorie for sharing your story.
Colorectal cancer survivor Johnny Nelson of the Navajo Nation encourages people to be proactive about colon cancer screening and cognizant of their health, emphasizing that “preventive measures are the way to go.” When he lost a younger sister and brother to both colon and stomach cancers, Johnny made it a priority to get routine colonoscopies every few years.
His first colonoscopy was done at age 38. Despite national screening guidelines that advised people to begin colon cancer testing at age 50 (new guidelines recommend age 45), Johnny knew the disease could be hereditary and talked to his doctor about getting screened anyway. Individuals with a first-degree relative such as a mother, father, sister, or brother who have been diagnosed with colorectal cancer should begin screening at 40 years of age or 10 years younger than the earliest diagnosis of their relative. During the procedure, doctors found a polyp attached to his right side, which resulted in removing six inches of Johnny’s colon at a later appointment, due to the size and shape of the polyp. After this Johnny became more mindful of his health, dedicating more time to fitness, nutritious eating and living a healthier lifestyle, all behaviors that can help reduce one’s cancer risk.
By December 2011, the time was approaching for Johnny to have another screening, just as he did every two to three years. Going into it, he felt he was at the “healthiest, fittest time of his life.” He was shocked when he heard doctors had discovered a large mass on his right side, which turned out to be stage 3 colon cancer. Initially, he didn’t believe it because there were no physical indicators, but colon cancer often develops without any signs or symptoms. His friends and family were equally as shocked but continued to be supportive through the healing process, especially since Johnny had already lost two siblings to colorectal cancer.
After removal of the tumor and six months of chemotherapy, today Johnny lives cancer-free. Because he also has Lynch Syndrome – a hereditary condition that puts him at higher risk for recurrence – he stays on top of scheduling appointments with an oncologist, now visiting the doctor annually for a routine colonoscopy and to check his blood work. Johnny continues to be an avid supporter of screening and living a healthy lifestyle, as taking these precautions can help lower the risk of colon cancer in Native people. It’s important for American Indians and Alaska Natives to talk with their doctors about colon cancer screening; guidelines recommend both men and women ages 45-75 should be screened.
“It’s so simple and definitely inexpensive compared to the alternative,” Johnny stressed, “it’ll save you a lot of heartaches.”
Thank you Johnny Nelson for sharing your story!
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