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Native cancer support group gives residents a chance to tell their stories

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Posted: Sunday, January 27, 2013 12:00 am | Updated: 8:17 pm, Sun Jan 27, 2013.

FAIRBANKS — Communicating about cancer, sharing stories and supporting each other is what Hopeful Connections, an Alaska Native cancer support group, is all about.

Many in the support group are cancer survivors, and others are or were caregivers for a loved one with cancer.

Since cancer is the No. 1 cause of death among Alaska Natives it is no surprise that the majority of those attending the twice monthly support group meetings can readily recite a litany of names of relatives and friends who are undergoing cancer treatment, are cancer survivors or who have died of the disease.

Statistics compiled from a 40-year Alaska Native Tumor Registry, 1969-2008, and published by the Alaska Native Tribal Health Consortium in 2012, aren’t comforting.

The registry confirms that cancer remains the leading cause of death among Alaska Native people, and the incidence rates are 10 percent higher than U.S. white rates (491 vs. 466 per 100,000).

Cancer rates for Alaska Native women are 20 percent higher than U.S. whites, but rates for Alaska Native men is similar to U.S. whites.

Overall the leading cause of cancer death is lung cancer, and the mortality rate is 40 percent higher in Alaska Native people than U.S. whites.

That’s where Hopeful Connections comes in, says Freda Williams, community services director at the Fairbanks Native Association.

“Hopeful Connections is a positive, positive event for people to share their experiences.”

Participants not only share personal stories but learn more about the disease, how to best themselves and those battling cancer, and how to alleviate the stress and pain that invariably accompany the illness.

•••

In 2010, Ellen Lopez, an assistant professor in the  psychology department and Center for Alaska Native Health Research at the University of Alaska Fairbanks, approached Williams about starting a Native cancer survivor support group.

Lopez had worked with cancer survivors at two universities Outside and wanted to continue her career in Alaska, so she went searching for a mentor and partner.

The timing was right when she approached Williams.

“My family has a history of cancer on my dad’s side, and I knew a lot of friends and relatives who had cancer,” Williams said.

“So when Ellen came knocking on my door, I said, ‘Heck, yeah.’”

The first meeting, in May 2010, to explore the interest and need for a Native cancer support group was eye-opening.

“Twenty people showed up,” Williams recalled. “I knew everybody in the room, but knew only of two dealing with cancer.”

She was shocked to learn that all 20 attendees either survived or were dealing with cancer.

“Native people just don’t talk about this,” she said. “Hopeful Connections has given them an opportunity to share their experience with another Native person.”

In the almost three years since, Williams has only missed one meeting.

A little more than a week ago, she was astonished to learn that one of her younger sisters, who lives in Galena, was diagnosed with breast cancer.

“I give my heartfelt thanks to the group for teaching me what they went through. Now I can help my sister,” Williams said.

“They gave me the basic recipe of what to share with her.”

•••

Since its inception, the twice-monthly Hopeful Connections gatherings at the Hannah Solomon Building, named after the late Athabascan matriarch, on Wendell Street, have been increasing in size.

The atmosphere is homey and welcoming, a comfortable place to share and learn about the disease that has taken so many Natives lives throughout the state.

A large table covered with a healthy selection of food to eat such as moose soup or salmon, whole grain crackers, snacks and a selection of fruit and berries is an added comfort.

Introductions around the room is the first order of each meeting, and sometimes, just the mention of the name of a late loved one gives rise to emotions.

If tears slip down cheeks, hands quickly reach out to pat backs, clasp a hand or shoulder, or pass a Kleenex.

Comments at meetings carry a range of themes, such as:

• “It takes a whole family to deal with cancer.”

• “There was a social worker and a chaplain at the hospital. I didn’t know there were so many people to help you.”

• “There’s no end to the grieving. I try not to dwell on it.”

• “A group like this makes you feel so much more accepted.”

The caring and support at the meetings is palatable and goes beyond the meeting place.

Beverly Beardsley, a breast cancer survivor, has been attending Hopeful Connections for a year, and she makes an effort to share what she has learned through her own cancer experience with others who aren’t ready to come to a meeting yet.

“A lot of people from my hometown (Fort Yukon) have been treated for cancer, and yet, they never talk about it. I didn’t want to be a part of that,” she said.

“You don’t have to hide it. This group has helped me realize that. It’s good to see how people are changing. It’s made me more open.”

Beardsley ran into a support group member undergoing treatment while grocery shopping last week. They talked about his treatment for lung cancer and how he was handling it.

“Just a year ago, that wouldn’t have happened,” she said.

Vanessa Horace stood by her mother last year as she was undergoing cancer treatment following a double mastectomy.

“It is a scary thing to go through with somebody you love,” she said. “It is really heart wrenching.”

Vanessa wrote about the experience in a two-page essay entitled, “My thoughts while going head to head with cancer with my mom,” which was used later as a support group meeting topic.

She expresses the raw emotion she felt at the time, in part with:

“I have never had to be this strong before, for my mom, my son, myself ... yet I did not feel strong at all. I felt selfish, scared, helpless, and angry. Angry at the cancer, angry with the Doctors, angry with family and friends who weren’t there, and sometimes sad to say, angry with God. I am also a little ashamed at how scared and helpless I let myself become, to lose faith in God. In the end He was the only one there for me, and I love Him for it.

“Though I did not think to care for myself when my mom was going through chemo, I now know that the important thing is eat balanced meals, get a good night’s rest, and find someone to talk to. Your health is EXTRA important when caring for someone. They are depending on you.”

Vanessa started attending Hopeful Connections in spring 2012.

“It’s a great place to be, to see other people and hear of their experiences and encourage others. It’s a great thing to talk things out or just enjoy some company,” she said.

“When people are diagnosed with cancer, a lot want to throw the towel in. If you have support and people who love you, you can fight it and make it. It is not a complete death sentence.”

•••

The focus of Hopeful Connections is on the positive, the present and the future.

“We have four goals,” Lopez explained.

“The first is to share and care and provide the opportunity to do so in a safe environment,” she said.

The others follow accordingly: to share factual cancer and health information; to enhance trust and understanding of cancer-related research with Alaska Natives; and to raise awareness about the needs and strengths of Alaska Native cancer survivors.

Meeting topics have included nutrition, Native foods and dancing to relieve stress, presented by community and university guest speakers, and extra gatherings were held for Thanksgiving and Christmas celebrations.

For the second year in a row, Hopeful Connections will have its own team for the annual Relay for Life event. This year, the event, a fundraiser for the American Cancer Society will be held on the UAF campus, June 7-8.

Word of the cancer support group, a partnership between the UAF Center for Alaska Native Health Research, the Fairbanks Native Association and Alaska Native Tribal Health Consortium, is spreading into rural Interior communities. Eventually, Williams and Lopez would like to be able to connect with them electronically for the Hopeful Connections meetings.

A Facebook page also is in the future.

Contact staff writer Mary Beth Smetzer at 459-7546.

Hopeful connections

Upcoming meetings:

Feb. 4 and Feb. 18

5:30-7:30 p.m.

Hannah Solomon Building

317 Wendell St., Fairbanks

 

 

Native cancer statistics

• Cancer remains the leading cause of death among Alaska Native people. The all cancer mortality rate has exceeded the U.S. white cancer mortality rate for more than 30 years. There have not been any significant declines.

• The leading cause of cancer death is lung cancer, and the mortality rate is 40 percent higher in Alaska Native people than U.S. whites.

• Cancer incidence rates in Alaska Native people are 10 percent higher than U.S. white rates (491 vs. 466 per 100,000). Rates are 20 percent higher in Alaska Native women, though similar to U.S. whites among Alaska Native men.

• Frequently diagnosed cancers are cancers of the lung, colon/rectum, breast and prostate, comprising more than 55 percent of newly diagnosed cancers.

• Cancer incidence rates continue to increase among Alaska Native women, but might be decreasing among Alaska Native men.

• Compared to U.S. whites, cancer incidence rates in Alaska Native people are higher for: nasopharynx, esophagus, stomach, colorectal, pancreas, biliary tract, lung and kidney.

• In contrast, incidence rates in Alaska Native people are lower than U.S. whites for corpus/uterus, melanoma, urinary bladder, Hodgkin and non-Hodgkin lymphoma, thyroid and lymphocytic leukemia.

From Alaska Native Epidemiology Center. Cancer in Alaska Native People 1969-2008, 40-Year Tumor Registry Report; April 2012 (anthctoday.org/epicenter)

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