<
"...It is a practical 'how-to' guide useful not only to cancer patients, but to everybody during their daily routine."Nadia Malouf, MD
Professor of Pathology and Laboratory Medicine
|
||||||||||||||||||||||||
Living with cancer
Women publish practical self-help guide
The following is a reprint of an article by Anne Krishnan that appeared in Durham Herald Sun on October 6, 2005.
Terri Schinazi is all too familiar with the feelings of shock, fear and anger that can come with a cancer diagnosis.
After all, the Oxford woman has been diagnosed with four different cancers over the past 16 years.
But with experience comes wisdom, and Schinazi and three other local women have put their combined 70 years of living with cancer into "Finding the 'CAN' in Cancer," a practical guide for patients and their caretakers.
The self-published book, available online at Lulu.com and Amazon.com, takes readers through the cancer experience from diagnosis to the end of treatment. It offers encouragement, defines medical terminology and gives recommendations on coping with treatment side effects.
The goal, Schinazi said, is to help patients live as normally as possible after a cancer diagnosis.
"Lots of people will tell you what you can't do, what's going to be limited," she said. "It's about finding the can. You still can live through this and not just survive it, but you can thrive through it."
Schinazi wrote the book with Pam Leight of Durham, the late Nancy Emerson of Graham and the late Susan Moonan of Raleigh.
The women met about five years ago as Schinazi, Emerson and Moonan all received treatment at Duke University's Comprehensive Cancer Center. Leight, Emerson's best friend and a too-frequent caretaker for family members with cancer, was a frequent visitor to the treatment room, as well.
Sharing hope
As they became friends, the women decided to pass along tips for dealing with cancer that other patients might find helpful.
"We couldn't reach everyone personally, so we decided to put in the book what we would tell them if we were sitting next to them on the couch or talking on the phone," Leight said.
The authors had gathered all of their information and the book was about one-third finished when Emerson and Moonan died in September 2003 and January 2004, respectively. Schinazi and Leight took time to grieve, and then organized and edited the copy over the next 18 months.
Now Schinazi is working to start a nonprofit organization called Wings for a Cure that will raise funds to distribute "Finding the 'CAN' in Cancer" to cancer centers across the country.
"There are a lot of people who don't want to go to a support group or talk to people," she said. "This book is perfect for them to take home. If we can get this book out to patients everywhere, it would be great."
Meanwhile, Leight says she is continuing in her role behind the scenes as a facilitator and caregiver. She has nursed four family members with cancer and was herself diagnosed with a precursor to endometrial cancer.
Schinazi, who is currently undergoing treatment for tumors in her lungs, has applied for expedited nonprofit review from the IRS. The regular review process usually takes more than 200 days.
"I don't have that long," she said. "My numbers could change tomorrow and I may not be in the current health status I'm in right now."
But the New Orleans native, who built her family's house in Oxford while undergoing chemotherapy for her second and third cancers, will continue to promote the book even if her health declines again.
"Whatever it takes, whatever I have to do, I'm game," Schinazi said. "You can't just stop living."
Frank advice
Duke counts Moonan, Emerson and Schinazi among its longest surviving patients, said Harriet Whitehead, the hospital's cancer resource center coordinator. She keeps several copies of "Finding the 'CAN' in Cancer" in the center's coping and inspiration reading section.
While some patients visit the resource center to learn more about their cancers or treatments, others are looking for "feel-better books" like the women's text, Whitehead said.
"It's a lovely book," she said. "It's more relaxed, it covers more territory and it does so in a franker way. You feel you suddenly acquired four mothers."
None of the other books available were from a patient's point of view, Leight said.
In addition to sharing their own stories and the insight they've gained, the authors tackle sensitive subjects such as the use of marijuana to treat nausea, sexuality during treatment and preparing legally for the possibility of death.
The book also advises caregivers. Some of the most important advice in that section is that caregivers should try to treat the patient normally and naturally, Leight said.
"Nobody wants to be treated like 'Cancer Nancy,' " she said. "They want to be treated as a person first."
Healing words
The women decided the overall theme of the book should be one of healing, rather than calling patients to go to battle with their own bodies, Schinazi said.
The message of survival and life even in the midst of chemotherapy is "a message that's important for people to know, especially when you're depressed and your life sucks, because the sun comes up tomorrow and it's another day," she said.
Emerson, Moonan and Schinazi have never portrayed themselves as tragic victims, but instead are known as "radiant spirits," Leight said. The book is their legacy, she added.
"What our desire was in this book was to really love people through the hard challenges," she said. "We want to lift you up and help you along and say 'you can do this,' " she said. "It's not what your problem is, but how you deal with it that matters.
"It's how you deal with it that defines your life."
"FINDING THE 'CAN' IN CANCER" ON ...
Caregivers
"You may find that friends and family will begin to hover around you, so you should give them guidance about how much freedom you want while you recuperate. Lovingly let them know how and when they can help. Explain to your friends and family that you may need some time alone."
Depression
"Feeling scared, sad or depressed is nothing to be ashamed of, and you need to recognize such feelings and monitor the degree to which you experience them. It's important, however, to distinguish between normal sadness, which lessens with time, and depression, which needs to be treated."
Hair loss
"Having a plan regarding hair loss can give you a sense of control. Some patients have planned intimate hair-shaving parties, inviting friends and family to join them in the experience ... and make the best of the expected unpleasant event."
Pain
"With the resources available today, no one should have to experience excessive pain. Early treatment of pain is almost always more effective than waiting until the pain is severe or unbearable. Under-treated and untreated pain can lead to unnecessary suffering and despair."
© 2005, The Durham Herald Company
