Books, Links and Contacts
This is an utterly personal reading list of books and blogs (and such) that helped me. The contacts are for practitioners I can recommend in the Portland, Ore. area. I don’t have any financial ties to any of these folks or enterprises. Everything listed here gets my recommendation for having something, at least one thing, worth taking away.
BOOKS, listed alphabetically by author
Acocella Marchetto, Marisa
Cancer Vixen
This author made treatment sound doable and gave me the first idea about exercising during chemo (which, it turns out, helps).
Berensohn, Paulus
Finding One’s Way With Clay
A book about making pottery, and how all art is practice for the great art: your life. I’m not kidding, it belongs on this list.
Burroughs, Augusten
This is How
The author is controversial, but the chapter in this book titled “How to be Sick” was spot on. I recommend it to patients and caretakers alike.
Chödrön, Pema — anything by her:
http://pemachodronfoundation.org/store/buy-books/
Maybe begin with When Things Fall Apart. But really, start anywhere (start where you are), and read anything by her.
McWilliams, Peter
You Can’t Afford the Luxury of a Negative Thought: A Book for People with Any Life-Threatening Illness – Including Life
A collection of short and easy pieces, genuinely helpful to me in the thick of the crisis. This once ubiquitous best-selling author had a very interesting life and a harrowing death. Like a lot of us, he knew much more than he was able to put into practice on his own behalf, so it’s ironic he is famous for “self-help.” I’m quite loyal to his stuff.
Pausch, Jai
Dream New Dreams: Reimagining My Life After Loss
A very honest account about being a caretaker from the widow of Randy Pausch (of "The Last Lecture").
Sweeney, Julia
God Said Ha!
She and her brother had cancer at the same time, and somehow she made art out of it in this beautiful book.
Sweet, Victoria
God’s Hotel
A Doctor, a Hospital and a Pilgrimage to the Heart of Medicine.
How and why to heal slowly. Kind of a quirky book which suits its message that healing is not necessarily linear and definitely takes time to wend its way.
Wadler, Joyce
Cured: My Ovarian Cancer Story
It's always important to hear from someone who did it. She got Taxol for stage 3 ovarian when it was a new wonder drug, and 11 years after she wrote this book she definitely looks to be cured (and writing for the New York Times). A quick easy read that nevertheless is packed with sober information -- and humor -- and most of all, great inspiration.
LINKS (URLS, BLOGS, APPS, ETC.), randomly listed
AfterShock: What To Do When the Doctor Gives You or Someone You Love a Devastating Diagnosis
iPhone/iPad app based on the book of the same name from the Center for Advancing Health:
http://www.cfah.org/jessie-gruman/books/aftershockapp
The following two sites for finding clinical trials are new since my own crisis, so I’ve never used them, but I add them here:
TrialReach
They “aim to include more clinical trials than any other web site” and help you match up with one.
http://trialreach.com/
Trial X
"Provides cutting-edge information on new medical treatments and clinical trials in your area."
http://trialx.com/tour/
Diana Dyer, R.D.
She's a multiple-time cancer survivor, a dietician, an organic farmer, and a prolific blogger. See also 365 Days of Kale.
http://www.dianadyer.com/
http://www.365daysofkale.com/
Chronicles of a Cancer Patient
This is the site I found the night I googled what chemo was going to feel like. I was so happy to find something this honest and folksy both (yes, it became an influence) and it really helped:
http://www.chroniclesofacancerpatient.com
Center for Patient Partnerships, University of Wisconsin-Madison
"Helps patients who are overwhelmed by serious medical diagnoses to navigate the confusing array of choices and next steps — from interpreting insurance coverage to getting a second opinion to finding clinical trials."
http://www.patientpartnerships.org/
And, related to the University of Wisconsin site above, this article about its founder, Meg Gaines, a long term ovarian survivor:
http://onwisconsin.uwalumni.com/features/the-wayfinders/
Also excerpted in Utne magazine, March-April 2010, pp. 71-73, from On Wisconsin (Winter 2009),
"N.E.D." a documentary about gynecological cancer made to raise awareness. Host it or view it:
http://www.tugg.com/titles/no-evidence-of-disease
Cancer tumor markers fact sheet:
http://www.cancer.gov/cancertopics/factsheet/detection/tumor-markers
A script for patients preparing for chemotherapy:
http://www.ppc-dayton.com/articles.html
Wikipedia's page on bracytherapy radiation:
http://en.wikipedia.org/wiki/Brachytherapy
"A Horse is Not a Metaphor" a film by Barbara Hammer about her treatment and recovery from ovarian cancer.
http://barbarahammer.com/films/a-horse-is-not-a-metaphor/
Buff head scarf
http://buffusa.com/sports/collections/filter/original
Or go here and search their “Buff” scarf (and its instructions):
http://www.sahalie.com
How Not to Say the Wrong Thing
A wonderful writeup of something called the "the ring theory" for use when you are wondering what to do or say to a cancer patient. It goes: comfort in, dump out. And as the authors say, it works in all kinds of crises -- medical, legal, even existential.
LA Times, April 7, 2013
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
The Median Isn't the Message
Stephen Jay Gould
http://www.cancerguide.org/median_not_msg.html
Steven Dunn's Cancer Guide
Wow, this is an amazing site developed by a guy who beat stage 4 kidney cancer back in 1989 and stayed cancer free for 15 years until he died from complications of bacterial meningitis (so unrelated to his cancer). He did enormous amounts of research for the site, still plenty useful and relevant. He had a thing about pretty pictures, he didn't want any on his site. I really, really got into having them on mine. But we are on the same page about mushrooms and I appreciate his backup on them (http://www.cancerguide.org/psk.html). I recommend perusing the whole site if you are looking for a trove of information. It has a lot of inspiration and thoughtfulness on offer as well.
http://www.cancerguide.org/index.html
Effective Ovarian Cancer Treatment is Underused, Study Finds
NYT, August 3, 2015
http://www.nytimes.com/2015/08/04/health/ovarian-cancer-abdominal-chemotherapy-underused.html
CONTACTS:
Finally, if you live near enough to Portland, Ore. to access any of these great practitioners, here are the places I went/go to, listed alphabetically:
Acupuncture for Wellness
http://www.acupunctureforwellness.net/
Compass Oncology
http://compassoncology.com/
InPower exercise for cancer patients/Laura Rosencrantz:
http://www.inpowerfitness.com/
Jo Johnson, reiki practitioner
her hotmail address is: reikitime [at]
(503) 659-5129
Oregon Hemorrhoid Clinic
http://www.hemorrhoidhelp.com/index.htm
Woodstock Natural Health Clinic
http://www.woodstockclinic.com/
(Under new ownership from 2015, so I can't vouch personally for the new doctors. But they were chosen by the one who treated me.)
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Photo credit my own.