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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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“I can do this,” Mary Ann Cook (Red Lake Ojibwe) reminded herself each day after finding out she had cervical cancer. A young mother and newly registered nurse, Mary Ann was just 26 when abnormal bleeding turned a fun family getaway into an anxiety-inducing stay in the emergency room. And while she admits the diagnosis shook her to her core, Mary Ann knew keeping a positive mindset would give her the strength to beat it.

“I’m not going to die from this,” she declared.

In 1990, Mary Ann was vacationing with her family in the Black Hills when she noticed some spotting. At the time she thought it was from her recent colposcopy, a follow up procedure to an abnormal Pap test. On their way home from the Black Hills, Mary Ann and her family decided to camp at a powwow, and in the middle of the night the bleeding got heavier. This time it “was not normal,” so she decided to visit a nearby emergency room. There the doctors concluded she was simply experiencing a heavy cycle and prescribed her birth control pills. The spotting subsided, but Mary Ann continued to feel drained and dizzy. Back on the road, they stopped at a gas station when Mary Ann realized the bleeding was now worse than ever. Again they rushed to the closest hospital, where doctors discovered Mary Ann’s hemoglobin was shockingly low; her IUD had also fallen out from excessive bleeding. After a D&C and emergency surgery, physicians told Mary Ann they had removed a golf ball-sized tumor from her cervix. A biopsy confirmed it was invasive cervical squamous cell cancer shortly after.

As a nurse, Mary Ann understood this disease often came without noticeable signs or symptoms in the early stages, but never imagined it could progress as quickly as hers did. If she had known her abnormal Pap could be indicative of something so serious, Mary Ann said she would have been more aggressive and proactive about her health. “Maybe I wouldn’t have taken it so lightly,” she said. And while an abnormal Pap test is not a cancer diagnosis, it’s important that Native women follow up with their doctors to discuss the results – especially since they are nearly twice as likely to develop cervical cancer compared to white women.

An extensive full body scan showed that the cancer hadn’t spread to Mary Ann’s major organs. News like this lifted her spirits, reminding her to take every day as it came, and to celebrate those “little milestones” on the way to recovery.

“Things are going to be okay”, she continued, “I am going to be okay.”

A few weeks after the diagnosis, doctors made arrangements for Mary Ann to have a radical hysterectomy, an extensive surgery that required removal of her uterus, cervix and lymph nodes. They tested her lymph nodes as well, but found no traces of cancer. If just one had tested positive, doctors said chemotherapy would’ve been a must. Because of the procedure’s complexity, it couldn’t be performed in Mary Ann’s hometown medical center – the closest to offer it was four hours away at the University of Minnesota (UMN). Fortunately, she had family living in the Twin Cities and was able to stay with them whenever she needed.

Mary Ann remained in the hospital for about a week following surgery, using a catheter to reduce urinary problems. “It was really painful,” she explained. Her care team provided a series of pain medications to relieve the discomfort, but it took some trial and error before doctors found a remedy that didn’t produce negative side effects. The first medicine she tried dropped her oxygen levels so low one of her lungs collapsed, the next caused her to wake in the middle of the night “with vivid nightmares.” Eventually the team figured out a combination of Tylenol and codeine worked best.

“I was looking a mess,” Mary Ann described herself upon returning home from the hospital. She left with the catheter and used it for an entire month before it was removed. At first, Mary Ann was required to have a follow up exam every six months at UMN’s medical center; after a while she went annually. Now cancer free, she visits the doctors in her community for regular screenings and is given a Pap test every two years – national guidelines recommend women aged 21-65 get screened every three years. Mary Ann credits early detection for saving her life. If she hadn’t been persistent about getting regular Pap tests, “who knows how far the cancer would have spread.”

The diagnosis came as a shock to family and friends, but they were never hesitant about stepping in to support Mary Ann on her journey. Her parents were by her side immediately when she had emergency surgery. And when she was home from the hospital they’d visit just to cook for her family and clean the house. Mary Ann is also grateful for her husband, not only for the care he provided during surgery and the months that followed, but for supporting her healing journey for more than 30 years.

“We made it,” she said.

Today Mary Ann helps raise awareness about cervical cancer through community events and cancer walks. As the Director of Nursing at Red Lake Hospital, she enjoys connecting with patients and using her experience to stress the importance of screening. “It really bothers” her that she’s known many women who have died from cervical cancer simply because they waited years to have an exam. On a mission to change the narrative of this preventable disease, Mary Ann encourages Native women to be vigilant about their health “at any cost.”

“Follow through if anything is abnormal,” she said. “And don’t take it lightly because anything can happen.”

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