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Oral Cancer Prevention

#PapChat- A discussion

Join us for our #PapChat Instagram series as we talk with women about their Pap test experiences!

Daanis-Chosa

Daanis Chosa (Bois Forte Band of Chippewa), says she was nervous before her first Pap test at 18 because she didn’t know how it was going to go. In reality, “for the actual experience, they make you feel comfortable, give you time to get undressed and relax. Then it’s smooth sailing. The first time I thought it was going to hurt, but it didn’t. I remember feeling a pinch, but that was really it. There wasn’t any pain, instead, it felt like pressure.” #PapChat

Melanie-Plucinski

Regarding the stigma surrounding cervical cancer, Melanie Plucinski (Bad River Band of Lake Superior Chippewa, Ojibwe) feels that not talking about HPV is dangerous. “It is critical for us to remove that stigma. It can literally save lives. The majority of HPV diagnoses don’t lead to cancer if women are screened regularly. This is important to know so that women can maintain their health. I would be willing to talk to anyone about getting a Pap. Pap testing is not something to be afraid of.” #PapChat

Joy-Rivera

As AICAF’s Community Health Education Specialist, Joy Rivera (Haudenosaunee) knows the importance of talking about screening. “The more people who tell their stories, the easier it gets. Like with breast cancer screening, the more stories I hear in the community, the more it reminds me to stay on schedule. I appreciate people in a community who are willing to share their experiences, especially elders.” #PapChat

Amber-Cardinal

When it comes to giving advice to young women getting their first Pap tests, Amber Cardinal (Arikara, Hidatsa, and Ojibwa) thinks of what she would tell her younger sisters: “Make sure that you get them. As often as they are allowed. Be honest with your doctor. Go in with an open mind. Just do it, even if it’s awkward, uncomfortable or ‘the worst thing ever,’ you just gotta do it.” #PapChat

Laura-Roberts-BA

Leading AICAF’s cervical cancer programming, Health Programs Specialist Laura Roberts BA (Red Lake Ojibwe and Santee Dakota) has advice for women getting Pap tests: “Listen to your discomforts. If it doesn’t feel right between you and your doctor or clinic, you should look for something else. Pap tests are very private, so you should go to a clinic where you feel welcome.” #PapChat

Robert DesJarlait

July 29, 2019

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.

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A high school sophomore and student-athlete, Andrea was competitive by nature and refused to let this disease beat her.

“This is going to be tough and I’m not going to feel like doing it, but I must,” she remembered.

In 1997 Andrea had just wrapped up the high school volleyball season. It was the day after her last game when she began to feel a sharp pain in her abdomen. She brushed it off at first, thinking it was another typical sports injury like a pulled muscle. But when the pain became so intense that she was unable to stand, her parents rushed her to the family physician. A team of doctors ran some tests and discovered a large mass in Andrea’s abdomen. Because it had been attached to her reproductive organs, she was taken to an OBGYN for emergency surgery.

Andrea was diagnosed with RMS shortly after the procedure. This rare disease targets soft tissue and can arise anywhere in the body, but is most likely to start in the head and neck area, urinary system or the reproductive system – which was the case for Andrea. RMS is more common among children but can occur at any age. Andrea said the first major symptom she experienced was the abdominal pain. However, thinking back to the time of her diagnosis, she said she often felt tired and weak and had also become pale.

Her family was her biggest support system and “the ones that got me through.” Because they lived in rural South Dakota, Andrea and her family had to travel to a larger city hour away for the treatments she needed. The commute became expensive very quickly, as they had to drive to Minnesota for every other round of chemotherapy. Andrea went through treatments for a year, and what she appreciated most during this time was that her cancer care team didn’t sugar-coat anything. They trusted her to handle her health information and didn’t treat her like a helpless, sick kid. “They still had expectations of me and didn’t allow me to ever give up,” she explained.

Her parents didn’t let the illness coax their attitudes of Andrea’s capabilities either. They never tried to inhibit their daughter from enjoying the activities she loved. It was so important for Andrea to continue living as a normal teenager, and she “never once felt limited by them.” And while some friends remained by her side and treated her the same, others didn’t know how to handle the situation. Andrea says even though her life was very different after the diagnosis, her friends helped her stay true to herself. “I was still the same girl,” she continued, “I just happened to be living with cancer.”

Though facing cancer so young was devastating, Andrea now realizes the significance of her experience. She said the “amazing” part about her journey was learning more about herself and her loved ones; she and her family grew stronger and closer than ever. Still, it was difficult for Andrea to watch how the sickness impacted her relatives, especially her parents. Now that she has children of her own, she said she “can’t imagine the horror they must’ve felt.”

In 2019 Andrea is celebrating 22 years of being cancer-free. The registered nurse takes action against cancer in American Indian and Alaska Native communities by participating in walks and telethons, helping to raise money for organizations that fight chronic illnesses. She also enjoys volunteering as a patient navigator to assist others on their journeys because she understands their experiences first-hand. Knowing the struggle of living in a rural area, Andrea encourages all Native people to seek the healthcare they need when they feel like something is wrong, “especially if you are considered at risk.”

“Make your health a priority and stick to it,” she says.

Community-Education-and-outreach

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