FAIRHOPE, Ala. — When Heidi Schultz Adams was 26, she was diagnosed with Ewing’s sarcoma, a cancer of the bone. She underwent treatment and today, at age 43, she is cancer-free.
Her brother, Christopher Schultz, was 20 when his sister was …
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FAIRHOPE, Ala. — When Heidi Schultz Adams was 26, she was diagnosed with Ewing’s sarcoma, a cancer of the bone. She underwent treatment and today, at age 43, she is cancer-free.
Her brother, Christopher Schultz, was 20 when his sister was diagnosed. He was at Duke University and returned home at Christmas as she was finishing her first round of chemotherapy.
One of the things both of them noticed was that Adams was one of the few young adults in the ward.
The siblings, who grew up in Foley, were learning firsthand a terrible fact: Each year about 70,000 people between ages 15 and 40 are diagnosed with cancer in the United States. While that sounds like a big number, most cancer is found in young children or older adults.
That means, said Schultz in a telephone interview, that medical professionals treating these young adults were not always aware of issues that concern them — among them fertility (often destroyed in the effort to get rid of the cancer), appearance, attracting or keeping a mate and keeping a job (and insurance).
Adams, a Bayside Academy graduate, ran into a few other young adults with cancer during her treatment and the term “Planet Cancer” was born to describe what they were going through. According to the Centers for Disease Control and Prevention, about one in every 20 Americans is a cancer survivor.
As Adams began to recover, she founded Planet Cancer as a place for young adults to talk about their disease and get coping tips from each other.
Schultz helped.
“It started more than 10 years ago as an online meeting place,” said Schultz. “It grew to retreats.”
Because not every young adult with cancer could find the online community or get to a retreat, Adams and Schultz decided to write a book, “Planet Cancer: the frequently bizarre yet always informative experiences and thoughts of your fellow natives.”
“It was a way to expand the network,” Schultz said.
The book is crammed with practical no-nonsense (some say “no bull—-”) information about how oncologists talk, various tests, how cancer is graded, the side effects of medication, “chemo brain,” the effect of medication on mental functions, how to dress if you have a port (a tube inside you to pass medication through) so you are comfortable, maybe even a little stylish and medical personnel can access the port, dealing with insurance companies (hard even when you are well) and even how to talk to a cancer patient (hint: normally is good).
And yes, there is a section on dealing with death if medicine can’t beat the cancer.
There is even advice for caregivers.
“A critical error when someone is diagnosed is to start tip-toeing,” said Schultz. “The person is not any different, but they might be sick.”
There are numerous essays by people who have or have had cancer. Some are incredibly funny. And there are Top 10 lists that will have members of Generation X, Y or Z and others in stitches.
For example, one of the “Top 9 Things You Would Rather Not Hear From Your Physician” is “My oncologist said, ‘Well, everything is fine — for now.’”
The information is good event if a person with cancer isn’t 15-40 years of age.
“We hear that a lot,” said Schultz.
While the advice is not not meant to take the place of a doctor, the tips in the book will enable the person with cancer to better communicate with doctors, nurses and the whole team of caregivers.
“We wanted to make sure that people knew they were not alone,” said Schultz.
In addition to her work with Planet Cancer, Adams is also a founding member and the advocacy chair of the Lance Armstrong Foundation’s LiveSTRONG Young Adult Alliance, a national coalition of more than 100 organizations dedicated to improving survival rates and quality of life for young adults with cancer.
A writer by profession, she is also a contributor and editorial advisor to CURE magazine and is the co-author of “Here and Now: Inspiring Stories of Cancer Survivors,” published in 2001 by Avalon, and was featured in O: The Oprah Magazine.
Schultz was the 2010 Writer-in-Residence at the Fairhope Center for the Writing Arts, and his fiction and nonfiction has appeared in numerous publications.
He is the founder of Start Here Project Development, which helps businesses, nonprofits and universities bring their ideas to reality.
Page & Palette Bookstore, 32 S. Section St. in Fairhope, will host Adams and Schultz for a booksigning on April 7, from 6-8 p.m.
For more information, call 251-928-5295.