Would you consent to have your life or health insurer monitor your condition via a "wearable" device?
June 22--Shoshana Phillips has dreams.
Sure, she wants her cancer cured, extracted from her blood and forever forgotten. She is tired of trips to the hospital. Tired of the unknown.
All that goes without saying.
Cancer is tough enough, Phillips said. Try being poor.
Even as she fights multiple myeloma, or cancer of her bone marrow's plasma cells, Phillips envisions a support network for those who face the unknown without the comforts of loved ones nearby, a stable home or familiar routines.
Phillips has established Heritage of Healing in Ypsilanti -- what she hopes will one day be a robust support system that will provide a place for out-of-town patients who need somewhere to stay when they seek treatment at U-M nearby, support for families with children and even a way to get fresh food that's so crucial during cancer treatment.
-- Related Special Section: Surviving Cancer
As in so many areas of health care, disparities persist in cancer rates, detection, treatment and care. Cancer is more survivable overall these days, but the death rate is still significantly higher for some minority groups.
Among American Indian tribes, cancer incidence rates and mortality rates vary greatly. But several studies have concluded that many cancers are more deadly for American Indians than other groups, possibly because of poor access to care, less health insurance, and lower awareness and screening that could lead to early detection -- when cancer is most treatable.
After her diagnosis, Phillips better understood how cancer disproportionately affects American Indians and that families of all backgrounds, especially the children, often don't know how to cope. That's when Heritage of Healing came to mind.
"I've always been a person who wants to make a change," she said. "The natural step is to step up and say, 'What can I do about it?'"
A double burden
Doctors found Phillips' cancer in 2006.
Phillips and her then-husband had been activists for years in American-Indian initiatives. But a paying, nonprofit job dried up and they set out on the road, traveling from town to town and from pow wow to pow wow.
She became interested in American-Indian issues growing up around Washington D.C. and attending community college and later University of Maryland. She spent much of her adult life in unpaid positions and paid positions in non-profits advocating for American Indians.
It hasn't been an easy life, but she loved that her young son and daughter got to see the U.S. -- Niagara Falls in the dead of winter, the Grand Canyon and parts of the country that nonnative people don't often see.
But there was growing pain and exhaustion, too. She eventually carried a misdiagnoses of fibromyalgia to Ann Arbor for a clinical trial at the University of Michigan.
She was turned down from the trial. Doctors, instead, found cancer.
She was terrified -- teetering at the edge of homelessness and not sure what to tell her children.
Phillips took part in a clinical trial that involved the drug Velcade that since has become standard therapy for multiple myeloma patients.
She had two bone marrow transplants in 2007 and these days she's on a new chemo regimen, trying to stay one step ahead of the cancer.
Life now is still far from certain, or easy.
Boxes, papers, and furniture haphazardly fill the converted fraternity house that now serves as her home as well as the office for Heritage.
Earlier this month -- even as she begged for more time on the rent -- a skin infection forced her to the emergency room once again.
She chuckled: "Ah, the adventures of being a cancer patient."
Still, she pushes on, tapping out grant applications on her computer and beading jewelry to pay personal bills and finance the operation.
Philips admits there's not a lot of luxury here. She stretches as much as she can from the disability she gets from the state for her family of three.
She is not complaining. She has always been able to live without the kinds of permanent luxuries that others might have, in part, because of a lifetime sometimes spent on the move.
Brighter days are ahead. She's sure of it.
Heritage recently was approved by the Michigan Department of Human Services as a navigation site to help others tap into state help -- financial assistance and Medicaid, for example.
Heritage also organizes walks through Ypsilanti Farmer's Market, encouraging exercise and healthy eating for healing and for disease prevention. Participants get $5 in gift certificates to purchase produce.
When Heritage has more money, she mused recently, perhaps it can spring for water bottles as an extra incentive for the walkers.
Meanwhile, Heritage holds crafting sessions and movie nights for local patients facing any kind of diseases, as well as their loved ones. It is here they can come to relax.
They don't have to pretend.
"Friends are trying to be nice, but they don't know what you're going through," Phillips said. "And you don't want to complain all the time, but sometimes you feel like absolute crap."
Sometimes those with cancer and their families want to share that pain and exchange stories.
Other times, they don't even want to hear the word anymore.
"Sometimes you want to talk about what groceries are on sale at Kroger this week or where you're going on vacation -- not how many hours you spent at the cancer center or how many doctors you've seen or what a drag the whole thing is," she said.
Contact Robin Erb: firstname.lastname@example.org or 313-222-2708. Follow her on Twitterhttps://twitter.com/FreepHealth.
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