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The Face of Survival
Courageous testimony in the
war on cancer at the Northern Plains American Indian Cancer Summit
By Abena
Songbird, Dakota Lakota Journal
December 1, 2006
RAPID CITY – The
Northern Plains Comprehensive Cancer Control Program, (NPCCCP) in
conjunction with the Aberdeen Area Tribal Chairman’s Health Board held a
Northern Plains American Indian Cancer Summit entitled, “Enhancing
Relationships to Address our Cancer Burden” on Nov. 14 – 15 at the
Ramkota Hotel.
The two-day summit’s purpose was to create awareness and address cancer
issues for American Indian populations in the Northern Plains area
including, South Dakota, Iowa, Nebraska, and North Dakota.
Tribal health leaders, health care professionals, administrators and cancer
organizations came together to discuss diverse topics such as: traditional
medicine, patient navigation, HPV vaccine, tobacco control and survivor
support groups.
“Cancer is a big thing in our Northern Plains Indian people,” said AATCHB
Executive Director, Carol Anne Heart. “It has surpassed diabetes and
cardiovascular disease. It has the largest rate of death in the IHS system.”
Colorectal, breast, cervical, and lung cancers detection rates fall well
beyond the national average in the Northern Plains region exceeding that of
all other races.
Rather than rehash these growing high incidences of cancers on the
reservations, , it was the stories of cancer survivors themselves that spoke
the loudest.
The Wednesday morning summit began with Oglala Sioux Tribal elder, Marie
Randall giving an opening prayer, and then sharing water with all in the
room. Her grandmother taught her to “bless the water” every morning in
prayer; as we come from the “waters of life,” the womb of our mothers and
that for health and well being we should pray in this way.
After sharing the water, more than 75 people filled the room to listen to a
three person panel of Indian cancer survivors: Elliot J. Rhoades, Standing
Rock Sioux Tribe, Gladys Hawk, Standing Rock Sioux Tribe and Patty Keoke, of
Cheyenne River Sioux Tribe.
Rhoades, the first to speak, said he was a survivor of colon cancer,
although initially misdiagnosed, through his own persistent efforts to
challenge various providers who tried to “funnel him through the system”
minimizing his symptoms, found a tumor. He then endured six days of surgery
in which they removed six feet of colon, as well as six weeks of grueling
aftercare including chemotherapy and radiation. “It was six weeks of
torture,” he said. He was encouraged to walk by practitioners. “I thought
they were crazy, I was trying to survive,” said Rhoades. “They said the
sooner I walked the sooner I’d get out [of the hospital.]”
Rhoades, fiercely independent, drove himself back and forth across the state
for treatments until it finally “played me out,” he said. “It was my
problem, nobody else’s.” He credited two people who volunteered their sick
leave, ensuring he could maintain his job when his cancer aftercare required
that extended time off; John Eagle Shield and Elaine Keeps Eagle,
Administrative Assistant with the SRST CHR Program in Ft. Yates. “They were the only two
people who volunteered to give me their sick leave. If it wasn’t for them, I
really don’t know how I would have made it those last weeks.”
Currently Rhoades endures periodic checkups every four months for the first
two years after his surgery, blood work and chest x-rays. “It’s pretty
simple now compared to what I went through,” he said and now knows what
other cancer patients go through. “It’s not fun, but part of the healing
process,” he said.
He said he felt the conference was very important as he sees an increase in
cancer with the elderly and some of the young people on his Standing Rock
Reservation.
“We need to talk about it and come up with a plan to fight it,” he said.
“All cancers are probably not treatable, but they are preventable –it’s no
longer a ‘death sentence.’ Survivors are now apt to last for years and
years,” he said. Ending with a warning message to another leading problem on
area reservations, Rhoades sent a message to drug dealers on his
reservation, “You’re no damn good. You are hurting yourself and killing our
people with your methamphetamine.”
Gladys Hawk, Standing Rock Sioux Tribal elder, author of a treatment model
called, “Analogy of a Tree, and a Human Body” emphasized traditional Lakota
life ways in the process of healing herself and others of cancer.
Diagnosed in 2000 with breast cancer after a Women’s Way Program
practitioner “dragged” her to a clinic for a screening, she had an immediate
mastectomy. Every six months she religiously goes back for her check up.
“I come from a strong tiospaye and know how we should respect our
bodies,” Hawk said.
In the Lakota language, Hawk said that a tree is called, “can” and the human
body is called, “ta-can”; like a tree has pith, the spongy cellular tissue
center of the tree trunk also found in its stems and branches, the body has
marrow that keeps bones of the spine strong. She compared the roots of the
tree to the extended family concept.
“Women are the backbone of the family, they keep the family together,” Hawk
said. “The human body is a sacred body and we have to have respect for
ourselves.”
Speaking to this respect Hawk said, “Our ancestors lived a very healthy life
with plants and herbs around them” and cancer was unknown to them. They were
a very prayerful and spiritual people connected to everything around them,
she said. Hawk said she lost her mother in 1978 but still lives by her
“words of wisdom,” like she’s with her “all the time.”
Hawk emphasized the power of prayer in the healing process for Northern
Plains cancer survivors. “Prayer is a very powerful thing,” she said as she
shared a story of her daughter, living in New Zealand who prayed for her
during her surgery with her Tibetan friends simultaneously as her son, who
lives in Oklahoma, prayed with his Cherokee friends and another daughter who
lives in Wyoming, married to a Cheyenne/Arapaho went to a sweat and prayed
for her. Her surgery came out well, her cancer is in remission.
“I don’t think it was just the doctors doing this…they were being guided
through these prayers, I really strongly believe that.”
Hawk said that today in Standing Rock they no longer enjoy the healthy lives
of their ancestors, “We lived along the river. They took away this way of
life for many of us.”
Her grandmother used skunk oil for sore throats and herbs that grew near the
river. She used bitterroot, from their Dakota friends, which she soaked and
used for colds. She spoke of using red clover, an indigenous plant, in a tea
or tincture for menopause, for kidney problems and malignant cancers. She
said juniper, in the evergreen pine family, was also good for cancer,
ulcers, colds and constipation and all parts of the shrub were used for
medicine. It is both a laxative, a diuretic and urinary antiseptic.
“If we can encourage young people to really study and use plant medicines,
roots and work with animals, maybe we could again live a healthy lifestyle,”
Hawk said adding, “That’s who we were at one time – descendants of those who
used to live free.”
Hawk said she also learned a lot from a book by Dr. Marie Miczak called,
“Nature’s weeds, Native Medicine” written about a variety of plants and
trees indigenous to North America, used for health,
nutrition and healing.
She said with the current drought situation lots of plants are being lost.
There is a grazing problem on the reservation, not much grass left, which
compromises the health of the animals we eat.
Hawk ended with this message to the crowd, “We are a caring people, with a
caring heart and a caring spirit.” She counseled people to listen to their
health providers and doctors, “We could live longer if we do. No matter
where you come from, these are people who care about you and me.”
Patty Keoke, from Cheyenne River closed the panel, speaking of her
inoperable lung cancer first diagnosed in 2000.
“I take full responsibility now for my illness,” she said adding that when
she first learned she “blamed everybody,” the Tobacco Company, doctors and
nurses. She smoked for 40 years, but had been smoke free for the last three
to four years, at the time of her initial diagnosis.
She said she first noticed a problem when she would go for walks along the
river with her husband and notice she was getting short of breath. She also
experienced shoulder and back pain and went to the clinic on her reservation
several times, “Not once did they take an x-ray.”
Finally she went back to the doctors and demanded an x-ray. She said with
lung cancer there are not as many symptoms, so most of the IHS practitioners
didn’t know what to look for.
Lung cancer she said is more prevalent at Cheyenne River and across the
Northern Plains region, than ever before. “We need to develop something for
lung cancer. There are lots of smokers all over our reservations,” she said
and believes that pamphlets need to be written up in Lakota and English that
describe the illusive symptoms of this type of cancer.
In 2001, Keoke went to a cancer center for treatment: seven weeks of
radiation and many weeks of chemotherapy. She said she had a lot of support
from the BIA and Indian Health Service. She also had used up all her sick
leave, so people there donated over 500 hours so she could still earn a
living while going through the healing journey.
She also went to a chronic pulmonary disease (COPD) specialist. Her mother
was diagnosed one month before her and they shared the same doctor. After
her physician assured her mother she was fine, Keoke went home thinking she
was okay. Different doctors told her different things.
In 2002, she was told her cancer was spreading and that she had to have more
chemo treatments. She lost her hair twice, but it has since grown back, a
lovely, thick auburn.
“We need to be more aggressive with our doctors and nurses,” Keoke said
adding, “Not just accept what they say.”
In 2003, she was told she had nine months to one year to live. “It’s still
here – too close to my heart, it’s inoperable.” She has been taking a new
medicine called, “Iressa,” with some success.
Keoke credited her husband, her “support system” caregiver. “I don’t think
we talked enough about caregivers – they go through about as much as we do,”
she said. “They deserve to be taken care of. We need to learn how to
appreciate our caregivers.”
In closing Keoke said, “Cancer has made me a better person. I am a much
gentler, kinder person and I pray more. I thank God a lot more.” She
reminded people that they know their own bodies and to get a second opinion
and to “keep going back” when necessary.
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2003 Magnet Award awarded to Black Hills Center
for American Indian Health
Well Nations Magazine
The Magnet Award, presented by the board of directors
of the Rapid City, SD Economic Development Partnership, is awarded to
an organization that has or is completing a significant local expansion,
relocation from outside the area, or shows a continual commitment to the
community.
It is a pleasure of the Rapid City Economic Development
Partnership Board of Directors to present the 2003 Magnet Award to Dr.
Jeffrey A. Henderson, President and CEO, accepting for the Black Hills
Center for American Indian Health.
Rapid City Economic Development is part of an effort
to develop research based economic development in association with the
South Dakota School of Mines & Technology, Black Hills State University
and a number of private businesses engaged in research. This regional
forum, known as the Western Research Alliance, has over 100 researchers,
innovators and inventors who are interested in the promotion and facilitation
of research, development, entrepreneurship, and the commercialization
of new technologies. One of those active participants is the winner of
the 2003 Magnet Award.
Dr. Jeffrey A. Henderson, M.D., M.P.H., has succeeded
in raising major funding for community based health research in Indian
Country. Starting just under five years ago, the roster of employees has
grown from 0 to 8, with plans to grow to about 20 within the next five
years. In the present year, they have expanded their work from Western
South Dakota, to also involve work in Montana and Arizona. They have annual
revenues of approximately $1.5 million and spend 85 percent in the local
area. The Native-owned non-profit Black Hills Center for American Indian
Health has raised over $7.5 million in National Institutes of health federal
grants.
The Black Hills Center for American Indian Health was
incorporated in South Dakota in November 1998, for the purpose of conducting
a range of activities that contribute to the enhanced physical, mental,
spiritual and cultural health of American Indians and American Indians
tribes and communities. The center’s vision statement is, “Toward
Healthier Nations.” The center’s activities are organized
within four distinct missions: Research, Education, Service, and Philanthropy.
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Center’s studies probe health risks
Research to track Indian
lifestyles, illnesses
By Heidi Bell Gease, Journal
Staff writer
Dr. Jeff Henderson wants American Indian people to live
longer, healthier lives.
That’s why he returned home to Eagle Butte after
Medical school to take a job with Indian Health Service. He worked there
in early 1990s serving members of his own tribe, the Cheyenne River Sioux.
But after a while, Henderson began to wonder what he
was accomplishing. “I can point to a few people, maybe a family
or two, that I’ve helped…but is the broader community healthier?”
he remembers asking himself.
He finally decided he couldn’t really improve things
by providing direct care for individual patients. “It was likely
that I was going to fish farther upstream, as it were,” he said.
That philosophy led him and two former colleagues to
start Black Hills Center for American Indian Health (BHCAIH) in November
1998. The colleagues have since moved away. But three years later, the
Rapid City-based nonprofit organization is launching two research projects–upstream
fishing expeditions, if you will–that could help make future generations
healthier.
“This center is set up to carry out four main objectives…and
the first of those is research,” said Henderson, who served as director
of mental health and social services at Sioux San Hospital from 1996-98
before becoming BHCAIH’s full-time director.
The organization got a giant boost by landing a grant
worth about $7 million from the National Cancer Institute to fund a five-year
study exploring the relationship between diet, lifestyle and behavior
and the incidence of cancer and disease among Indians and Alaska natives.
The goal to recruit 10,000 American Indians and Alaska
Natives for the study and monitor them long-term. “If we do what
we say we’re going to do, this study could be a 20-, 30-, 40- or
50-year study,” said Henderson, who also works with the Strong Heart
Study, a study heart-disease risk factors among Indians in South Dakota,
North Dakota, Oklahoma and Arizona.
The trick will be to keep track of the cancer-study patients.
Researchers will rely on toll-free numbers, financial incentives and other
strategies to collect statistics.
In addition to Henderson, the center’s staff includes:
Dr. Patricia Nez Henderson, research-study coordinator; Joyce Colombe,
project coordinator; administrative assistant Sandra Albertson; and receptionist
DeAnne Swan.
The center also has received a grant of about $400,000
over four years from Indian Health Service to examine Lakota attitudes
toward research. Center researchers will work with area tribal colleges
on that study.
\ The center’s second goal is to educate. Henderson
eventually hopes to provide training to prepare minority students for
health-related careers.
\ The third goal is to provide service, ranging from public
speakers to consultation with tribes on health-care programs. The fourth
goal, philanthropy, would occur farther in the future would involve awarding
scholarships and grants.
Henderson also hopes the center can help tribes to benefit
more from research. He said medical research traditionally has done more
to advance the researcher’s career than to benefit the tribes being
studied.
“The tribes need to exercise control over that
part of their own sovereignty,” he said, by playing a bigger role
in identifying their most pressing health problems, and attracting research
that could help address those problems. “This is planning for the
future.”
Another goal is to help tribes start conducting some
of their own health research by bringing grant money back to the communities.
So far, Henderson said, tribal leaders are receptive.
It might have been easier to start a research center
elsewhere, where money is more plentiful. “But the vision has been
to bring it back here, to West River,” Henderson said. “This
is a lifetime of work that we have ahead of us. We’d like to do
it here.”
There will be a community meeting to discuss the cancer
study on Tuesday, March 12, at Joyner Hall in the Episcopal Church at
Pine Ridge Village. The meeting will follow a 6 p.m. feed, and all are
welcome. Meetings are also planned in Kyle and on the Cheyenne River Indian
Reservation.
Center offices are on the second floor of the US Bank
building 701 St. Joseph Street in Rapid City. For more information, call
the center at 605-348-6100.
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Research center looks at long-term
health
By David Melmer, Indian Country
Today Staff
Rapid City, SD– Helping people on a daily basis
was not enough for Dr. Jeff Henderson. His daily work in Indian hospitals
and clinics didn’t satisfy his desire to help people live longer
and healthier lives.
After two years at Sioux San Hospital in Rapid City,
Henderson left his position as director of social and behavior sciences
in 1998 to do research. He said he could help more people than just a
few in a hospital or clinic setting.
By why leave direct care of people at a clinic to do
research?
“After two and one-half years at Eagle Butte (Cheyenne
River Reservation), my home reservation, I didn’t bring my own expectations
to the job. I didn’t impose my values on my patients,” said
Henderson.
“I lifted my head up and asked myself, after two
and one-half busy, hard-working years, was the community better off? I
could look at a few individuals and families, but I decided that the community
as a whole was not more healthy in spite of all the direct medical care
I provided.
He started the Black Hills Center for American Indian
Health and used his home as an office while he applied for grants. A $7
million grant from the National Cancer Institute put the center in full
operation with one of the largest research projects in Indian Country.
“I knew little about public health,” Henderson
said. “They try to fish further up stream than direct-care providers
and try to prevent things instead of putting on band-aids so I went back
to Seattle, got a master’s degree in public health and then back
to Rapid city at Soiux San [the Indian Health Service hospital]. I wanted
to do what it takes to provide health care for people. We want to serve
the people in the Aberdeen and Billings area.”
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Interview with Jeffrey Henderson, MD, MPH
NHLBI Profile, US Department of
Health and Human Services
By Helena O. Mishoe, PhD, MPH, HBLBI,
NIH
Jeffrey Henderson, MD, MPH is an enrolled member of the
Cheyenne River Sioux Tribe. He is the founder and President/CEO of the
Black Hills Center for American Indian Health, Rapid City, SD. Spero M.
Manson, PhD (Pembina Chippewa), Professor at University of Colorado Health
Sciences Center, stated, “Dr. Henderson bridges multiple worlds:
those of clinicians, scientists, and Native people. His longstanding dedication
to American Indians and Alaska Natives combines with a deep commitment
to promoting the best possible research that remains locally meaningful
and that promises to improve the health of our children and elders.”
NHLBI: When did you first become interested in
science? Did your parents influence your decision?
Dr. Henderson: My parents never suggested any particular occupation
to me. However, they let me know how much they valued education, which
always encouraged me to do well. After seeing the movie, Jaws, with my
parents, I desperately wanted to be an oceanographer. I received my Bachelors
in biochemistry and cell biology from the University of California San
Diego (UCSD). I worked in a marine biology laboratory at Scripps Institute
of Oceanography and spent time out on Scripps research vessels. However,
I constantly struggled with serious seasickness.
What influenced your decision to become a doctor?
There were several major influences on my decision. Beginning
as a college freshman, I spent a lot of time with Uncle Greg and his family
in Gallup, NM. I became more aware of his involvement in medicine through
his training to become a Physician’s Assistant. I also had more
opportunities to experience the cultural, ceremonial, and ritual sides
of my Lakota heritage. Also during this time, I became increasingly aware
of the profound need for culturally sensitive and culturally relevant
providers on the reservation. As a fourth year medical student, I spent
time on my reservation in South Dakota, where I met and became reacquainted
with many relatives and friends. I pledged to our Tribal Council that
I would return after my residency. I was a third member of our tribe to
become a physician. I received my MD degree from UCSD and went to a the
University of Washington, in Seattle to complete my residency.
What did you did after completing medical school?
I completed my residency in primary care internal medicine and
within one week I moved to Eagle Butte, SD on the Cheyenne River reservation.
As Clinical Director of the Indian Health Service hospital, the next 2
years and 9 months would be one of the most fabulous times of my life
being a vehicle for the expression of need that people had. After much
thought, I decided there was a need to have an effect on the broader health
of the community and the tribe. Therefore, I went back to the University
of Washington and enrolled in the Master of Public Health program to train
in population-based strategies. I also took courses in entrepreneurship
where I developed the business plan that I later used as a paradigm to
establish the Black Hills Center for American Indian Health as a non-profit
research model.
How did you get involved in research?
I was fortunate to receive an NHLBI Minority Research Supplemental
Award and worked with Dr. Thomas Welty on the NHLBI-supported Strong Heart
Study in American Indians. This research training experience allowed me
to use my public health background and provided an opportunity to witness
the practical application of population-based strategies. Also, I was
very fortunate to join up with Dr. Spero Manson and participate in the
Native Investigators Program for American Indian Postdocs. To complete
this 2-year course in research methodology, I conducted a secondary data
analysis using data from the Strong Heart Study and from my MPH thesis.
These opportunities provided the right compliment of research activities
to solidify my passion for this type of work. The center has received
grants from several institutes at the NIH. We are just putting in place
the new NHLBI-supported study called Stop Atherosclerosis in Native Diabetes
Study (SANDS). I can confidently say that it is pretty unlikely that my
career would have taken the direction it has without the research training
provided by the NHLBI Research Supplement Award to conduct research on
the Strong Heart Study.
How important have mentors been to your career?
Mentors have been critically important to my career. Dr. Manson
and Dr. Welty are the two most prominent mentors in my career. My brother/Uncle
Greg also is a very big mentor for me. It is not likely that I would have
even entered down this career track in health and medicine were it not
for him as a role model. Other important mentors for me have been several
older men on my reservation who have helped me with things in the cultural
and spiritual world. These men continue to be very strong and powerful
mentors for me to whom I owe a great deal.
What advice would you give to young people considering
a career in science or medicine but have not quite made the commitment?
I would encourage each person to search his/her own heart for
what really resonates with and in their spirit. The path I took has many
different forks in the road that can be traveled. It’s important to
consider your dreams in the broader context of what’s going on around
you, your family, and community. None of us are acting alone or for the
first time. My wife, daughter and young son also help to provide a
very powerful source of inspiration for me. We all have ancestors that
have paved the way for us and, if we can acknowledge this, they can serve
to inspire us. I take great inspiration from this and am powerfully resigned
to persevere.
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