We volunteer to help each other in many ways:
Our Operating Committee has contributed enormous time and effort to create and maintain this GSI website at its own expense. I can mention only a few others for whose efforts we are indebted and grateful. Julie, Penny and others scour the professional literature and send us citations and digital links to the latest studies and papers, to keep us on the ball.
And Yvonne, for example spends hours, I am sure, to send us her Weekly Wrap-up of our numerous daily posts. How does she do this?
Quite ingeniously, I thought, by organizing and creatively categorizing our posts as: Announcements; Celebrations; Scans/Drs; Treatments/Surgery; Links/Info; Commentary; and Prayer.
Where we go, and how we proceed is up to you. Writing something of your story (who can do one’s whole story?) might be the best thing you can do for yourself, as well as for GSI. At least, try keeping a diary yourself. Reflective and introspective writing is biblio-therapy, I feel, especially for wounded storytellers. One of us, Ellen, paints instead. We have a physician and masterful photographer among those of us who are grappling with GIST. Expressive efforts, in any media, can serve to reflect some of our unique and meaningful human experiences in the face of GIST – our psycho-oncology.
No one is paying me to write these pages, and I shall continue to do so only if some of you are interested enough, and want to participate. The Recommended Reading is not a homework assignment. There is no homework here. If you would enjoy reading some of these things, fine. If not, that’s OK too. I do think, however, that it would be worth your while to pick up Dr. Holland’s book at the library or buy it. You may find it to be worth much more than its modest paper-back price.
I have already written about many more things that I would be willing to modify and append to our PSI-ONC page as Notes. Perhaps others too would like to write on similar or relevant topics. For instance, if there were sufficient interest in our GIST psycho-oncology Page I would be happy to add items such as:
“A Note for GIST patients on Neuroscience, Symptom Formation and Mental Health”
“A Note for Newcomers: If You’re Going to Wrestle With GIST, Basic Things You Need to Know to Get a Good Grip or Headlock on It”
“A Note on Surgical, Medical and Psychiatric Treatment Choices That GIST Patients May Face – How to Decide and Who to Listen To” (this would be from a patients’ viewpoint. We’ll probably ask a number of our savvy GSI Listmates and others to pipe in freely on that one in order to augment what generous help we might receive in our Ask The Professionals” Page.)
“A Note for GIST patients on Psycho pharmacy: The Good, The Bad and the Ugly”
“A Note for GIST patients on Psychotherapies and Counseling”
“A Note for GIST patients on “Mental Health Professionals, Who Are They, Why, and Who Needs Them? ” (this would be my meat, very serious stuff, but probably fun).
Recommended Reading for Starters
We have already mentioned:
“The Human Side of Cancer” by Jimmie C. Holland M.D. Harper Collins 2000, Quill Paperback
Everyone should read Stephen Jay Gould's Essay
"The Median isn't the Message"
"At the Will of the Body" Arthur Frank
http://www.amazon.com/exec/obidos/tg/detail/-/0618219293
"Intoxicated by My Illness" Anatole Broyard
http://www.amazon.com/exec/obidos/ASIN/0449908348
"It's Always Something" Gilda Radner
http://www.amazon.com/exec/obidos/ASIN/038081322X
"A Short Guide to a Happy Life" Anna Quindlen
http://www.amazon.com/exec/obidos/ASIN/0375504613
"The Winning Spirit: Life Lessons Learned in Last Place" Zoe Kaplowitz
http://www.nationalmssociety.org/zoe_koplowitz.asp
"Man's Search for Meaning" Viktor Frankl
http://www.amazon.com/exec/obidos/tg/detail/-/0671023373
http://www.phoenix5.org/books/Frankl/FranklMenu.html
"Cancer As A Turning Point" by Lawrence LeShan
http://www.amazon.com/exec/obidos/ASIN/0452271371
"Wherever You Go There You Are" by Jon Kabat-Zinn
http://www.amazon.com/exec/obidos/ASIN/0786880708
”As I Live and Breathe” by Jamie Weisman, M.D. North Point Press, Div. of Farrar, Straus and Giroux. NYC 2002 – 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.
We will be glad to have your input, suggestions and commentary as we welcome you to our GIST psycho-oncology web page.
Dr. Mel
