GIST Support WikiAfter you've read any of these recommended books, we invite your personal review.
[edit] 100 Questions and Answers About Gastrointestinal Stromal Tumor
by Ronald P.DeMatteo, MD, Marina Symcox, PhD, and George D. Demetri, MD ISBN 9780763738389
An easy-to-read patient education book about GIST that covers just about all of the general themes for treatment, cancer biology, and coping.
[edit] Man's Search for Meaning
by Victor E.Frankl, MD ISBN 0671023373
I read this book many years ago, but still remember how difficult it was to get through the first half, where Victor Frankl describes enduring years of unspeakable horror in Nazi death camps. Partly because of his suffering however, he developed a revolutionary approach to pschotherapy known as logotherapy, which involves the belief that man's primary motivational force is his search for meaning. As logotherapy teaches, there are three main avenues on which one arrives at meaning in life: 1) creating a work or doing a deed; 2) experiencing something or encountering someone (at one point, Frankl found meaning in the insects that visited his cell daily); 3) even the helpless victim of a hopeless situation, facing a fate he cannot change, may rise above himself and grow beyond himself and by doing so change himself. He may turn a personal tragedy in to a triumph. Victor Frankl certainly attained this!
[edit] The Human Side of Cancer, Living on the Edge of Uncertainty
by Jimmie Holland ISBN 006093042X
Believe it or not, a person eventually gets used to the idea of having had cancer. I guess how long the adjustment takes involves the risk posed by the cancer, the time in your life, your personality.
[edit] At the Will of the Body: Reflections on Illness
by Arthur Frank ISBN 0618219293
I very much liked the book by Arthur Frank, "At the Will of the Body". He was diagnosed with life threatening heart disease and cancer at a relatively young age. He speaks about being in the "Remission Society". Gleevec puts us in the remission society. We face dichotomous scenarios for our future--one of hopefulness for normalcy and the other a life threatening disease that takes over. Ignoring the big picture is sometimes what you need to do. Yet, it is hard for any thinking/logical human to stay focused on hope and not look over his shoulder at the other possibility. In fact, when a healthy person gives me that advice I get resentful--I consider them a hypocrite somehow. Yet as far as I can tell, that impossible advice is what you have to do. Sometimes emotional denial and blinders are useful after the diagnosis.
A chapter called "the cost of appearances" describes the isolation a patient will feel when the family denies the reality of the disease.
[edit] Beating Cancer with Nutrition
by Patrick Quillin PhD, RD, CNS ISBN 9780963837295
This completely revised edition of a 1994 title offers up-to-date information about the human body's own "host defense mechanisms" in the war on cancer, providing a multidisciplinary approach to treatment based on scientific studies and clinical experience. Quillin, a medical professional who has published extensively, has conducted nutrition studies with hundreds of patients in formal clinical settings. He discusses conventional therapies (chemotherapy, surgery), alternative therapies (macrobiotics, herbal and vitamin therapies), and related factors (psychosocial health, drugs, tobacco, immune dysfunctions).
[edit] The Renewal of Generosity: Illness, Medicine, and How to Live
by Arthur W. Frank, Cloth ISBN 9780226260150 Paper ISBN 9780226260174
Dr. Cooper of small town family practice is the most brilliant doctor that I have ever met, even though he does not know how to treat a GIST. He does, however, know how to treat a GIST patient. He practices this "generosity of spirit" that is the topic of Arthur Frank's book.
Contemporary health care often lacks generosity of spirit, even when treatment is most efficient. Too many patients are left unhappy with how they are treated, and too many medical professionals feel estranged from the calling that drew them to medicine. Arthur W. Frank tells the stories of ill people, doctors, and nurses who are restoring generosity to medicine--generosity toward others and to themselves.
[edit] Intoxicated by My Illness
by Anatole Broyard, Publisher: Ballantine Books (June 1, 1993) ISBN 0449908348 "I have never read a book about death that was so uplifting. There is a complete lack of morbidity, self pity, or self indulgence in this writing. I would strongly recommend it for anyone with a life threatening illness. The author's courage in the face of serious illness is daunting. He commits to living the last of his life with even more awareness...a thought that each of us, regardless of health, could employ." http://www.amazon.com/exec/obidos/ASIN/0449908348
[edit] It's Always Something
by Gilda Radner, Publisher: Harper Paperbacks; 1 edition (May 30, 2000) ISBN 038081322X
This is her personal account of her struggle with ovarian cancer and her inspiring attempt to keep an upbeat attitude during her illness. Her discussion of a Santa Monica patient support group called the Wellness Community is the best part of the book and may be of interest to cancer patients and their families. http://www.amazon.com/exec/obidos/ASIN/038081322X
[edit] A Short Guide to a Happy Life
by Anna Quindlen ISBN 0375504613
One reviewer writes "what was remarkable for me was the insight that she shares with us, that I would never have developed on my own....Basically, without awareness of mortality, we would continue to waste our lives in pursuit of things that are not really, after all, so important. http://www.amazon.com/exec/obidos/ASIN/0375504613
[edit] The Winning Spirit: Life Lessons Learned in Last Place
by Zoe Kaplowitz http://www.nationalmssociety.org/zoe_koplowitz.asp
http://www.phoenix5.org/books/Frankl/FranklMenu.html
[edit] Cancer As A Turning Point: A handbook for people with cancer, their families, and health professionals
by Lawrence LeShan ISBN 0452271371 From Publishers Weekly: LeShan rightly describes his ninth health guide as a "state-of-the-art handbook," counseling readers on how to realize their self-healing abilities by employing methods dramatized here in case histories. The book details strategies to promote psychological change and teaches techniques (active visualization, classical meditation) that encourage cancer victims to fight the disease. His advice on overcoming the often debilitating lay and professional attitudes surrounding the cancer sufferer is eminently sound. http://www.amazon.com/exec/obidos/ASIN/0452271371
[edit] Wherever You Go There You Are: Mindfulness Meditation in Everyday Life
by Jon Kabat-Zinn, Publisher: Hyperion; 1 edition (January 5, 2005) ISBN 1401307787 From Publishers Weekly: Kabat-Zinn ( Full Catastrophe Living ), founder of the Stress Reduction Clinic at the University of Massachusetts Medical Center, here urges readers to practice "mindfulness," a more than 2000-year-old Buddhist method of living fully in the present, observing ourselves, our feeling, others and our surroundings without judging them. Free of trendiness, the book presents meditation as a natural activity that can be practiced anytime and anywhere, without props or trappings. http://www.amazon.com/exec/obidos/ASIN/0786880708
[edit] As I Live and Breathe
by Jamie Weisman, M.D. North Point Press, Div. of Farrar, Straus and Giroux. NYC 2002 ISBN 0865476691
This is a remarkable story, and medical insider’s view of a serious illness and its treatment, by a courageous young doctor with a rare immune system disorder. Not GIST, but a wounded and brave storyteller.
[edit] Illness as Metaphor
by Susan Sontag, Picador Publishers ISBN 978-0312420130 Susan Sontag wrote Illness and its Metaphors, AIDS and its metaphors. http://www.amazon.com/Illness-Metaphor-AIDS-Its-Metaphors/dp/0312420137 The book is a bit dated, and yet still worth reading.
Subtleties of language, portrayal of illness in literature, use of certain descriptives in popular language have great power to shape the perceptions of those with serious illness, and not always for the better. A century ago the patient with tuberculosis (the creative artistic type)vs the pt with cancer (the one with repressed negative emotions, anger)...how each was portrayed in novels...AIDS has replaced cancer as most stigmatized.
Still, cancer patients are saddled with the war analogies and language metaphors in a way that almost no other disease has to endure. "victims" "battle" "tumor invasion" "the war against cancer" "smart bomb drugs" "arsenal of chemotherapy" The term malignancy is itself a descriptive for corruption in business and politics. Is "arteriosclerosis" a term for political corruption? (no)
Now for the twist...in literature of the past the cancer patient was the one with suppressed negative emotions, hidden dark anger...BUT now that you have cancer, you are suppose to suppress your anger and be happy, so you can get well--positive thinking. A double bind, either way to blame "the victim"
"Susan Sontag's Illness as Metaphor was the first to point out the accusatory side of the metaphors of empowerment that seek to enlist the patient's will to resist disease. It is largely as a result of her work that the how-to health books avoid the blame-ridden term 'cancer personality' and speak more soothingly of 'disease-producing lifestyles' . . . AIDS and Its Metaphors extends her critique of cancer metaphors to the metaphors of dread surrounding the AIDS virus. Taken together, the two essays are an exemplary demonstration of the power of the intellect in the face of the lethal metaphors of fear."--Michael Ignatieff, The New Republic
[edit] How to Prevent and Treat Cancer with Natural Medicine
by Dr. Michael Murray, Dr. Tim Birdsall, Dr. Joseph E. Pizzorno, Dr. Paul Reilly ISBN 1573222224
These doctors of naturopathy advocate complementing, not replacing, standard therapies with alternative therapies to prevent cancer, slow its progress and cope with the side effects of chemotherapy and radiation. Their emphasis is on nutrition and diet, including vitamin and mineral supplements rich in antioxidants and heavy doses of herbal teas and fish oil, but they also cover acupuncture, hydrotherapy and massage. They cite numerous medical studies, including those with conflicting results, to back up their claims, and warns readers when natural medicines might interfere with standard medications. All information is clearly summarized in bullet-pointed regimens tailored to specific kinds of cancer and treatment protocols, and accompanied with sample menus and recipes to make a low-fat, low-sodium, hot-dog-free diet more palatable. Their basic program includes ceasing smoking and drinking alcohol, exercising, and eating lots of whole grains, fruits and vegetables..