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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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For Emily Wheeler (Absentee Shawnee Tribe), being diagnosed with breast cancer, or any cancer for that matter, never seemed like a possibility. Naturally, Emily didn’t worry too much when she spotted a lump on her breast; she decided to have it checked, but was convinced it was likely just a “random hormone thing.” After learning the results of her follow-up tests, what was once unimaginable quickly became very real. She met with her nurse, who was gentle, but frank, as she looked at Emily and said, “this is cancer.”

“Nothing can prepare you for those words,” Emily said.

In October 2018, breast cancer was the last thing on Emily’s mind. She was only 29, and in between raising three children, attending college classes, and working a full-time job, there was absolutely no time left to deal with a cancer diagnosis. That month Emily had scheduled a well-woman exam, and during the appointment asked the doctor to check the lump she found on her breast. When he recommended she have a follow up, Emily was able to walk right down the hallway to the breast care center and get an appointment immediately. After a mammogram, ultrasound, and biopsy, Emily waited the weekend to find out her results.

“It was excruciating,” she remembered.

Emily was dumbfounded when she discovered she had Stage 2B breast cancer, which meant the cancer was still growing. “Where does this fit into my schedule? There’s no place for this,” she thought. That November Emily started chemotherapy, and though she had more on her plate than most, she was determined to beat it. With lots of encouragement from family, friends, and her care team, Emily knew she could get through this journey. She made it her motto to never feel sorry for herself, and gave herself pep talks often as a reminder that “you’re not going to let this win. Not today.”

Although national breast cancer screening guidelines recommend most people begin having mammograms at age 40, Emily knew something wasn’t right and decided to get checked anyway. Aside from the lump on her breast, Emily remembered feeling fatigued and also had difficulty concentrating. Many don’t experience severe signs or symptoms of breast cancer in its early stages, but Emily still encourages all Native people to be in tune with their bodies, and “tackle it right away if you feel something is wrong.”

“Don’t put it off. You’re worth that extra trip to the doctor,” she added.

Emily continued chemotherapy through the holidays while finishing the school semester and working as much as she could. Her first treatment session wasn’t too bad. The second, however, was one of the most difficult parts of Emily’s journey because she started losing her hair. It made her emotional, not because she cared about her new appearance, but because “the cancer had taken something from me.” Side effects from the treatment continued to take a toll on her for the next few months. Above all else Emily felt defeated; she hated feeling out of control, and it was as if “the cancer had power over me.”

Despite the lows points Emily stayed positive, and found comfort in being able to laugh. She credits her sense of humor for getting her through the journey, and knows that “it definitely comes from my Native side.” Coincidentally, at the time of her diagnosis Emily worked on the oncology floor of a hospital, which inspired her to take care of herself. Still, the path to healing was strenuous, and at times Emily would feel shaken up and overwhelmed. She appreciated the support of her cancer care team, who always stayed positive, gave her hope, and took the lead when she didn’t know how. At home, her family was beyond helpful. Her children really stepped up, and her husband took on every task she was incapable of doing.

“He held my hand. He laughed when I laughed. He cried when I cried,” she continued, “This experience made my family so incredibly strong.”

Emily had her last treatment in February 2019, after celebrating her 30th birthday. An MRI had shown the tumor had a complete response to chemotherapy – the doctors didn’t find any traces of it on the scan. Still, Emily didn’t want to live in fear that the cancer would come back, and in April chose to move forward with a bilateral mastectomy. She didn’t regret having her breasts removed; the way she felt about them had changed, it was almost like they “had turned on her.” Emily is currently going through reconstructive surgeries, which she admits is a long, uncomfortable process. “But it’ll be worth it when it’s all done.”

Today Emily is cancer free, and will continue to have regular check-ups for the next few years. She makes her health a priority by eating more nutritious foods, stressing less often, and most importantly, cutting out the things in life that don’t bring her happiness. She has become a huge advocate for screening, and urges her loved ones to schedule their mammograms because she “never wants to see them at work being admitted to the oncology floor.”

Now when Emily is at work and encounters patients who are going through what she did, she can empathize, and reassure them: “you’re strong, and you can beat this.” Emily always knew her journey had a purpose, and realizes now that it was to teach people about this experience. She wants to remove the stigma surrounding conversations about cancer, and encourages Native people to start talking, “because it’s real, and it can happen,” she said.

“It’s okay to be afraid, but if you feel something, alwaysbe proactive. Make yourself a priority.”

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