DYING, SURVIVING, AND AGING WITH GRACE


Resources on illness, death and dying, loss, grief, and positive aging

Coping with cancer and critical illness




Cancer blogs and stories of personal encounters with cancer

Cancer once meant a death sentence. Increasingly, as medical scientists find new ways to combat it (or them), it is becoming a chronic disease. Prevention is the best approach to fighting cancer, but when the disease strikes it helps to find knowledgeable support and to know the facts about how to fight and cope with it. Let me know of links to useful resources that are not yet listed here.

• As the Tumor Turns (a lymphoma patient's blog, not for the faint of heart)
• Breast Cancer Action
• Cancer Bitch (a feminist blogs about her breast cancer)
• Cancer's Not Pink (Stephanie Theobald, The Guardian, 3-15-12). Women are rebelling against the fluffy imagery surrounding breast cancer
• Chemo Chicks (empowering women with cancer, with humor)
• A Conversation About Prostate Cancer (Leonard Lopate's public radio interview with Dana Wells, author of the Times column, Prostate Cancer Journal.
• Cowgirl Attitude (a Nashville girl gets colon cancer and lives to blog about it--if you don't like reading about poop, this is not the blog for you)
• Dave Getting Stronger (to keep others up to date on David Holder's "delymphomanization" and, finally, his death)
• Five Years to a Cure (Ellen Diamond, Pulse, 8-24-12). Ignoring doctors' overoptimistic promises of finding a cure, this CLL patient is learning to live with her slow-growing form of leukemia, to make careful choices among treatments, and to make the most of her new reality. A positive but realistic view of life as a cancer patient.

• Get real about breast cancer (a single mother's blog)
• My 40-day breast cancer (Emma Gilbey Keller, The Guardian, 4-27-12). A handful of atypical cells one week; a double mastectomy and reconstructive surgery the next. It's a cure, but it's brutal
• Getting Angry About Prostate Cancer Dana Jennings, NY Times Health section, 12-8-06).
• Grape jelly, the tooth fairy, powdered milk, nuclear fallout, radiated feet & me (Sue Hessel, Pinky Pie)
• Healing Physically, Yet Still Not Whole (Dana Jennings on the difference between recuperating and full recovery, NYTimes 1-18-10)
• In Cancer Therapy, There Is a Time to Treat and a Time to Let Go (Jane E. Brody, NY Times, 8-18-08)
• Leaving a Record of Lessons Learned (Leroy Sievers, NPR cancer blog)
• Lessons on dealing with critical illness (Linda Knapp, Seattle Times, on surviving a severe bacterial meningitis infection)
• Life, Interrupted, NY Times video of Suleika Jaquad, who blogs about her treatment for cancer at the age of 22 for the Times' Well column, under Life, Interrupted. The video and blogs are also available on the website Secrets of Cancerhood , where there are links to resources, an excellent NPR interview by Neal Conan (in which she reports being initially misdiagnosed, in France, with "burn-out syndrome," and discusses fertility treatments to compensate for cancer's effects on fertility), and other material.
• Life, Interrupted: Medical Bills, Insurance and Uncertainty (Suleika Jaquad, Well, NY Times, 8-9-12). in this blog entry, the author begins her education about the financial realities of cancer treatment. See all the other blog entries here, including (at 24) Six Ways to Cope with Cancer.
• Life with Cancer (Erin Zammett Ruddy's blog, Glamour magazine)
• Living Consciously, Dying Gracefully - A Journey with Cancer and Beyond by Nancy Manahan and Becky Bohan (how Diane Manahan chose to live life fully at the end and die at home)
• Living Strong, a dialogue with Lance Armstrong (Newsweek, April 2007)
• The Long Goodbye: The Moment I Heard My Mother's Diagnosis (Meghan O'Rourke, DoubleX.com, on the meta-narrative of illness, part IX in a series on grief and grieving)
• My Alternative Cancer Diary (blog on alternative care for cancer, including nutritional approaches)
• My Left Breast (here, "Not So Fast," 2012 findings about 4 types of breast cancer)
• My Life with Cancer (Jonathan Alter, Newsweek, on his mantle cell lymphoma)
• Notes to Soothe the Savage Cells -- Music to Have Cancer By (Dana Jennings, New York Times 1-10-09). See also One Man's Story, on Jennings' experience with prostate cancer
• Pinky Pie (Sue Hessel's blog)

• Poet Christian Wiman on Love, Faith, and Cancer . "Bill Moyers has a moving conversation with acclaimed poet and Poetry Magazine editor Christian Wiman about how finding true love and being diagnosed with a rare and incurable blood cancer reignited his religious passion as well as his creative expression. “When we think of our memories, they’re moments of intensity. Whether they were sorrowful or happy, moments of great loneliness or moments of great communion — we live for these moments in our life. And I do think poetry is a way of recognizing the moments in your life. But also a way of preserving them,” Wiman tells Moyers. “One of the ways in which I feel close to God is writing poetry.” You can listen to the podcast (47 minutes) or read or print the transcript.

“It is difficult
to get the news from poems
yet men die miserably every day
for lack
of what is found there.”
~poet William Carlos Williams

• Post prostate cancer surgery: Lessons learned in prostate situation (Bill Arnold and others)
• Sex After Prostate Surgery (Tara Parker Pope, NY Times, 1-14-08)
• Suddenly, My Body (powerful TED talk by Eve Ensler, Oct. 2010)
• Taking on prostate cancer (Andy Grove, Fortune Magazine, 5-13-96). A personal story that clearly explains the many options when your PSA is higher than 4

• Target Cancer series (Amy Harmon, NY Times 2-2010),chronicling the first human trial of an experimental cancer drug, explores the challenges that face the doctors and patients who test it. Three stories in the series (plus video): (1) A Roller Coaster Chase for a Cure (2-21-10). At what may be a watershed moment in understanding genetic changes that cause cancer, a small band of doctors is doggedly testing a drug known as PLX4032. (2) After Long Fight, Drug Gives Sudden Reprieve --The trial of a melanoma drug offers a glimpse at a new kind of therapy tailored to the genetic profile of a cancer. (3)A Drug Trial Cycle: Recovery, Relapse, Reinvention--The mysteries of new drugs and the limits of the medical trial process are forcing doctors testing targeted drugs to make difficult choices about patients’ lives.
• Telling Your Story (Liz Sarmi, on why she started writing about her brain cancer, and what effects doing so had (guestblogging on CURE (Combining science with humanity, CURE makes cancer understandable). Liz's own blog is The Liz Army (about a cool chick who has brain cancer)
• To Hell & (Hopefully) Back (April Hamilton's blog about what happens when you learn you have a rare breast tumor, and two days later your husband announces he's leaving you)

21st Century Snake Oil. "60 Minutes" hidden cameras expose medical con men who prey on dying victims by using pitches that capitalize on the promise of stem cells to cure almost any disease. Scott Pelley reporting--both video and transcript
• Unsuspected Symphony ( Jeremiah Horrigan, Pulse). After surgery to remove two feet of his colon, ordinary things Horrigan had paid little or no attention to all his life sparkled with meaning.
• Welcome to Cancerland (Barbara Ehrenreich, Harper's Magazine, November 2001)
• What to Say When You're Terminal (Ellen Diamond, Pulse, 5-3-13). "The truth about having an illness for which there is no cure is that you're not dying of it most of the time. Dying is a very particular state in which the body is clearly losing or has lost the battle with the forces breaking it down. Most of the time, I'm not much sicker than people with a mild cold. When my disease waxes and I become more sick, I'm still far from dying, even if I look like a frog with mumps."
• When a life story can be part of cancer treatment (Southern Reporter, 4-26-12). Watch the moving video: Helen Morton's digital story about her husband Forbes's life and final weeks, dying at home, surrounded by his family.
• Writing My Way Through Cancer Treatment: How an Amorous Novel Saved My Sanity (Hawley Roddick, Talking Writing, 2-7-11)
• Young Survival Coalition (YSC)



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Facts about cancer




Cancer Fight: Unclear Tests for New Drug by Gina Kolata (NYTimes 4-19-10), on the unreliability of certain cancer tests and the expensive, dangerous consequences of targeted therapies that depend on them.

Chronicling a Modern Plague, Susan Okie's brief Washington Post summary of the history of cancer treatment and understanding, in a review of the book The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee

From Cancer Patient to Cancer Survivor: Lost in Transition. The Institute of Medicine's first confirmed reports on the long-term effects of different types of cancer treatment. (Committee on Cancer Survivorship: Improving Care and Quality of Life, National Cancer Policy Board, edited by Maria Hewitt, Sheldon Greenfield, and Ellen Stovall), 2005. A National Academies Press book, available online.

Grand Rounds at Dartmouth-Hitchcock Medical Center (talks and slide shows available free online)

How a charity oversells mammography (Steven Woloshin and Lisa M. Schwartz, British Medical Journal, 8-2-12), and The false narratives of pink ribbon month, redux (Christie Aschwanden, The Last Word on Nothing, 10-2-12). Susan G. Komen for the Cure "isn’t wrong to encourage women to consider mammography," writes Aschwanden. "But they’re dead wrong to imply that 'the key to surviving breast cancer' is 'you' and the difference between a 98% survival rate and a 23% one is vigilance on the part of the victim." Early detection does NOT always save lives. Some cancers are "extremely aggressive from the start" and "by the time they’re detectable by any of our existing methods, they’ve already metastasized. These are the really awful, most deadly cancers, and screening mammograms*** will not stop them." Not all cancers can be screened for early detection, knowing only what we know now.

How to access Medline and other medical databases,

How to get basic information about your cancer online. You may find other relevant links under Science and Medical Writing (links on Pat's Writers and Editors website)

How to Research the Medical Literature About Cancer (how to use databases and online resources). See also Use Search Operators To Find Stories, Sources and Documents Online (Meranda Watling, 10,000 Words--where journalism and technology meet, 4-19-11)

The insider's guide to cancer prevention (The Guardian, 4-6-12). These experts spend their lives fighting cancer. They have heard every tip, sensible or not, for how to avoid it. They tell Oliver Laughland how their lifestyles have changed as a result. What do they do? A breast specialist gets a mammogram every year. A tumor specialist never goes in the sun without sunblock. Other specialists: Take a daily low-dose aspirin. Take Vitamin D (because we get too little sun). Eat a Mediterranean-style diet ("lots of processed tomato products and olive oil"). Greatly limit intake of red meat and cured meat (cancel the bacon). Exercise. Great limit intake of alcohol and never, never smoke.

How to Research the Medical Literature About Cancer (how to use databases and online resources)

How to access Medline and other medical databases,

How to get basic information about your cancer online. You may find other relevant links under Science and Medical Writing (links on Pat's Writers and Editors website)

Lessons of a $618,616 Death (Amanda Bennett, with Charles Babcock, for Bloomberg Businessweek 3-4-10). Early discovery of kidney (collecting duct) cancer gave Bennett's husband extended years of life. "The first tool for fighting kidney cancer is usually the one used since medieval times: the knife, or its technological equivalent. If a tumor is removed early enough, before it flings microscopic cells into the bloodstream that can implant in other organs, surgery is close to a cure."


NCCN Guidelines for Patents. For unfamiliar terms, see the NCCN glossary.

NCI Cancer Bulletin (news about cancer research)

NIH RePORTer (NIH Research Portfolio Online Reporting), a searchable database on federally funded biomedical research projects and programs. News updates here.

Oncolink (Abramson Cancer Center, University of Pennsylvania)

Oncology, by OncologySTAT (access to professional information in cancer-related journals)

Ovarian Cancer (cancer of the ovaries, MedicineNet.com)

PDQ (Physician Data Query, NCI's comprehensive database, with peer-reviewed summaries on cancer treatment, screening, prevention, genetics, and supportive care, and complementary and alternative medicine, and more)

PDQ: Questions and Answers

Phoenix 5 (extremely useful website written by men with prostate cancer and the women in their lives)

Prepared Patient Forum (Center for Advancing Health site on how to find and use safe, decent health care)

The Price of Beauty: Some Hidden Choices in Breast Reconstruction (Natasha Singer, NYTimes 12-23-08)

Regrets After Prostate Surgery (Tara Parker-Pope, New York Times 8-27-08)

Quitting Smoking, Guide to (American Cancer Society)

State Cancer Profiles

Tips for living and coping (American Brain Tumor Association)

Types of Cancer (National Cancer Institute). Here's an A to Z List of Cancers (alphabetical links). See also Type of cancer by body location or system

Toolbox (CURE's superb long list of links to general and specific cancer sites)

Understanding Cancer (National Cancer Institute)

Understanding Cancer Pain (includes Caregiver's Guide, Cancer Pain Treatments)

Useful Medical Links

War against cancer has more than one target (David Brown, Washington Post 4-27-10)

What is cancer? (National Cancer Institute, Defining cancer)

Women's Cancer Network. Comprehensive information about reproductive cancers, gynecologic oncologists, survivors’ courses, clinical trials and Foundation for Women's Cancer publications. (Reproductive cancers include breast, cervical, endometrial, germ and stromal cell, GTD, ovarian, primary peritoneal, uterine, vaginal, and vulvar cancer).

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A READING LIST OF INFORMATIVE BOOKS ABOUT CANCER AND SERIOUS ILLNESS
(memoirs of coping with cancer below)

• The American Cancer Society Complete Guide to Complementary & Alternative Cancer Therapies (spells out the evidence, or not, of hundreds of therapies' effectiveness and side effects)
• The Anatomy of Hope: How People Prevail in the Face of Illness by Dr. Jerome Groopman
• Anticancer, A New Way of Life by David Servan-Schreiber (psychiatrist and 15-year brain cancer survivor on environmental, dietary, and emotional adjustments one can make in one’s life to mitigate suspected carcinogenic influences)
• Before I Say Goodbye: Recollections and Observations from One Woman's Final Year by Ruth Picardie
• Beating Cancer with Nutrition by Patrick Quillin (book and CD)
• A Breast Cancer Journey: Your Personal Guidebook by the American Cancer Society
• Breast Cancer Survival Manual: A Step-by-Step Guide for the Woman With Newly Diagnosed Breast Cancer by John Link, 4th edition.
• Cancer: 50 Essential Things to Do by Greg Anderson
• Cancer for Christmas: Making the Most of a Daunting Gift by Casey Quinlan. "“I boil it down to this: when you take your car to a car wash, do you want to go through inside the car, or strapped to the hood? Not being informed, not taking a proactive approach to your medical care, is like going through the car wash strapped to the hood. You’ll wind up beaten to smithereens by the whirly-towel things, and get buckets of soap and wax up your nose, if you choose to go through the medical car-wash as an uninformed participant." Listen to Quinlan, interviewed by Liz Humes on the WordyBirds radio program.
• Close to the Bone: Life-Threatening Illness As a Soul Journey by Jean Shinoda Bolen(how living with the threat of death can take us to a deeper level--with a new section about forming circles in the time of crises)
• DeVita, Hellman, and Rosenberg's Cancer: Principles & Practice of Oncology (Cancer: Principles & Practice), latest version of oncologists' chief reference, originally by Vincent DeVita (also, see other cancer textbooks by DeVita and see cancer textbooks by Martin D. Abeloff on MD Consult)
• A Cancer Survivor's Almanac, by Barbara Hoffman
• Crazy Sexy Cancer Tips by Kris Carr (advice, warnings, and resources for the young cancer patient)
• Crazy Sexy Cancer Survivor: More Rebellion and Fire for Your Healing Journey by Kris Carr
• Dr. Patrick Walsh's Guide to Surviving Prostate Cancer, by Patrick C. Walsh and Janet Farrar Worthington
• Dr. Susan Love's Breast Book (valuable if you have early-stage cancer; get the latest edition)
• The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee (a wonderful, highly readable book). You can listen to the author's once-over-lightly lecture on the same material at NIH: Constructing a History of Cancer, introduced by Harold Varmus.
• Everyone's Guide to Cancer Therapy, by Malin Dollinger
• Everything Changes: The Insider's Guide to Cancer in Your 20's and 30's by Kairol Rosenthal (read it EARLY for info on how to navigate the health care system)
• Help Me Live: 20 Things People with Cancer Want You to Know by Lori Hope
• Living Consciously, Dying Gracefully - A Journey with Cancer and Beyond by Nancy Manahan and Becky Bohan
• Living with a Brain Tumor: Dr. Peter Black's Guide to Taking Control of Your Treatment, by Peter Black with Sharon Cloud Hogan
• Lung Cancer: Myths, Facts, Choices -- and Hope, by Claudia I. Henschke, Peggy McCarthy, and Sarah Wernick
• Promise Me: How a Sister's Love Launched the Global Movement to End Breast Cancer by Nancy G. Brinker with Joni Rodgers
• Prostate and Cancer: A Family Guide To Diagnosis, Treatment and Survival, by Sheldon Marks
• Prostate Cancer and the Veteran by Tom Benjey
• The Red Devil: To Hell With Cancer - And Back by Katherine Russell Rich (long-term survivor of stage 4 breast cancer)
• Resilience: Reflections on the Burdens and Gifts of Facing Life's Adversities by Elizabeth Edwards
• Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill, , by Cappy Capossela and Sheila Warnock
• There's No Place Like Hope: A Guide to Beating Cancer in Mind-Sized Bites by Vickie Girard
• What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope, edited by Julie K. Silver
• When Life Becomes Precious: The Essential Guide for Patients, Loved Ones, and Friends of Those Facing Serious Illnesses by Elise Babcock
• Your Brain after Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus by Daniel Silverman and Idelle Davidson



MEMOIRS ABOUT STRUGGLING WITH CANCER


• Brant, Mary Jane Hurley. When Every Day Matters: A Mother's Memoir on Love, Loss and Life
• Broyard, Anatole. Intoxicated by My Illness (critical illness, in his case from cancer, as a spiritual journey)
• Bye, Ronald. Memoirs of a 30-Year Cancer Survivor (diagnosed with testicular cancer at 20)
• Claridge, Laura. Mind Over Manners (Kindle). A biographer's brief (50-page) account of her ten-year struggle with a rare brain cancer, Primary Central Nervous System Lymphoma)
• Engelberg, Miriam. Cancer Made Me a Shallower Person: A Memoir in Comics
• Fox, Jackie. From Zero to Mastectomy: What I Learned and You Need to Know About Stage 0 Breast Cancer, a "mammoir" about being diagnosed with DCIS, or ductal carcinoma in situ, stage 0.
• Grealy, Lucy. Autobiography of a Face (about growing up with Ewing's sarcoma, a cancer that severely disfigured her face)
• Gubar, Susan. Memoir of a Debulked Woman: Enduring Ovarian Cancer . After agreeing to undergo a radical, surgically difficult, potentially fatal treatment for ovarian cancer--removing as much tumor-ridden tissue as possible, reducing the load so chemotherapy could work on the rest--the famed feminist writes about her experience surviving the surgery and writing frankly about the female body. See her story in short in the Chronicle of Higher Education, also: A Feminist Professor's Closing Chapters , a misleading title, in that she does survive to write about it.
• Handler, Evan. Time on Fire: My Comedy of Terrors (recounting with grim humor his battle with leukemia at age 24 and his hellish journey through the land of the sick)
• Hood, Ann. Do Not Go Gentle: The Search for Miracles in a Cynical Time (her search for a miraculous cure for her father's inoperable lung cancer)
• Kamenentz, Rodger. Terra Infirma (a searing recollection of his mother's life and her death from cancer, his mother "yo-yoing between smothering affection and a fierce anger")
• Liberman, Laura, MD. I Signed as the Doctor: Memoir of a Cancer Doctor Surviving Cancer
• Lord, Audre. The Cancer Journals (about her breast cancer and mastectomy)
• Madoff, Roger. Leukemia for Chickens
• Price, Reynolds. A Whole New Life: An Illness and a Healing (spine cancer makes him paraplegic, but liberates his imagination)
• Raab, Diana M. Healing With Words: A Writer's Cancer Journey. Raab's story of surviving a rare form of breast cancer (DCIS or ductal carcinoma in situ--cancer of the mammary glands, detectable only through a mammogram) and, five years later, multiple myeloma (by the author of Regina's Closet: Finding My Grandmother's Secret Journal)
• Rubinstein, Benjamin. TWICE: How I Became a Cancer-Slaying Super Man Before I Turned 21 (the raw, real story of a teenager who painfully survived the rare cancer Ewing's sarcoma twice--inspiring, but "not a feel-good story."
• Shotel, Jay. It's Good to Know a Miracle: Dani's Story: One Family's Struggle with Leukemia
• VanDerHeide, Rebecca as told by Peg Jennings. Saving Face: A Memoir of Cancer and Courage (about a rare form of cancer that will change her face)
• Wisenberg, S.L. The Adventures of Cancer Bitch. See Kyle Minor's review in Salon.com: “The Adventures of Cancer Bitch”: Memoir of a sassy survivor (10-12-12: "S.L. Wisenberg's virtuosic, poignant book documents her battle with cancer and the malignant culture of dishonesty")
• Williams, Marjorie. The Woman at the Washington Zoo: Writings on Politics, Family, and Fate (the last third is about her losing battle with cancer)
• Wittman, Juliet. Breast Cancer Journal: A Century of Petals


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Tools for coping


About herbs, botanicals, and other alternative approaches to treating cancer (Q&As from Memorial Sloan-Kettering Cancer Center)

Advice for helping a friend with cancer (Suleika Jaquad).

Aiding the Doctor Who Feels Cancer’s Toll (Jane E. Brody, Well column, NY Times, 11-26-12). Doctors "who care for terminally ill patients, are subject to two serious forms of occupational stress: burnout and compassion fatigue. According to one study of 18 oncologists, doctors "who saw their role as both biomedical and psychosocial found end-of-life care very satisfying. But those 'who described a primarily biomedical role reported a more distant relationship with the patient, a sense of failure at not being able to alter the course of the disease and an absence of collegial support.'” If your doctor isn't showing compassion, s/​he may be going through his or her own problems with your diagnosis.

Alternative and Complementary Therapies (CancerGuide). Comments about books on alternative therapies and advice on a range of topics, including cancer and disability, being smart about group health insurance , and comments on a range of therapies, from Sun Soup to Shark Cartilage (including a sensible section on evaluating alternative therapies .

Association for Cancer Online Resources (ACOR) , with links to excellent patient discussion groups

Brain tumor support groups (search for those in your state). National Brain Tumor Society

Breast cancer support groups (BreastCancer.org on how to find them in your area)

TheBreastCareSite.com. Full of information and you can use search function to find more.


Cancer caps and hats:
• YearRound Hats and Turbans (Tender Loving Care, American Cancer Society,for covering baldness from chemo -- see other resources listed on left)
• Tips on How to Wear a Hat
• Tips on Choosing and Wearing a Wig (plus links to other practical articles)
• Fat Thumb Chick
• Head Huggers (knits hats for chemo patients)
• Heavenly Hats (volunteers collect and distribute hats, for free, to patients with medical conditions or treatments that lead to hair loss)
• Good Wishes (scarves for patients with hair loss)
• Wig Essentials

Cancer Family Care. This is the site of the Cincinnati Cancer Family Care, which offers publications such as Counseling, How to Talk with Health Care Professionals, You Can Help When Your Friend Has Cancer Did You Know? and Cancer Patients' Bill of Rights. Google Cancer Family Care to find one near you; they may provide services you need, such as counseling.

Cancer Support Community (a global network of education and hope, a merging in 2009 of The Wellness Community and Gilda's Clubs). Check out CSC's links.

Resources for cancer patients and cancer caregivers (Secrets of Cancerhood's excellent list of and links to resources, by Suleika Jaouad, whose blog, Life, Interrupted is running in the NY Times Well section.
Suleika Jaouad

Corporate Angels Network (free transportation to treatment facilities -- on otherwise empty seats on corporate aircraft)

Dictionary of cancer terms (National Cancer Institute, NIH). See also NCI Drug Dictionary and NCI Dictionary of Genetics Terms

Engage with Grace and the One Slide Project. To help ensure that all of us--and the people we care for--can end our lives in the same purposeful way we lived them. • Watch the Engage with Grace Story (Video, Za's Story) • Download the One Slide (PDF)

Foods that fight cancer: Reduce your cancer risk a/​k/​a Recipe Corner (recipes from the test kitchen of the American Institute of Cancer Research, which publishes this wonderful cookbook (one of my favorites): The New American Plate Cookbook: Recipes for a Healthy Weight and a Healthy Life. Check out also:
• Wellness Wisdom: 31 Ways to Nourish Your Mind, Body, & Spirit by Susan Tate
• The Cancer Survivor's Guide: Foods That Help You Fight Back by Neal Barnard and Jennifer K. Reilly

HealthCentral has sites (and blogs) about many conditions and diseases, including Breast Cancer,HIV/​AIDS, Prostate, and Skin Cancer. This looks like a good place to start finding out about a health problem. Check out HealthCentral's Video Library. The videos I sampled (from a large, searchable, well-organized collection), looked very helpful, especially for those new to a condition. The videos come from various sources.

How Can I Find a Breast Cancer Support Group in My Area?

Kidney failure. Survival of the Savviest, Part 1 (Josephine Marcotty's Minneapolis Star Tribune series on organ donations, updated 9-30-09).

Offering Thanks for Caregivers (Susan Gubar, Living With Cancer, NY Times Well blog, 11-21-12) These receptionists, nurses and nurse practitioners are actually caregivers, not caretakers. They come into our lives without second names, but their dedication helps innumerable cancer patients endure the unendurable.

Surviving Whole (an online community where people affected by cancer can learn from each other, share their experiences and inspire each other to survive whole)

7 Ways to Cope with Chemo (Jessie Gruman, Parade, 9-14-08)

Talking to Doctors About a Terminal Diagnosis (Judith Johnson, Huffington Post). And read the comments.

TeamSurvivor (National Association of Team Survivor oversees development of affiliates that foster exercise and health education programs for women affected by cancer)

The Unspoken Diagnosis: Old Age (Paula Span, The New Old Age, NY Times 12-29-11)

U.S. National Library of Medicine. (NLM's website offers valuable search tools, lists of recent proceedings and library catalogues, and access to several cancer-focused databases)


Comforting a person with cancer


• What a Friend Can Do (Cancer and Careers)
• How to Help a Friend with Cancer (Kelly Corrigan, Women's Health, 9-14-12)
• The Step-by-Step Guide to Raising Money For Medical Expenses (Ethan Austin, GiveForward, 3-22-10).
• Supporting a Friend Who Has Cancer (Cancer.net, includes suggestions for gifts)
• When a Coworker Has Cancer: What To Say, What Not To Say (Cancer and Careers, which also offers "How to Be an Effective Point Person" )
• How to Help a Friend with Cancer (Give Forward blog
• When Your Boss Has Cancer (Cancer and Careers)
• 12 Tips for Supporting a Loved One With Cancer (Lynne Eldridge, About.com, 2-8-12)
• Helping a dying friend (Dying, Surviving, and Aging with Grace)
• Comforting Words for Terminally Ill Friends and Loved Ones (But I Don't Know What to Say..., Fran Johns, BeliefNet, author of Dying Unafraid

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Checking out clinical trials


Cancer Clinical Trials: A Commonsense Guide to Experimental Cancer Therapies and Clinical Trials by Tomasz M. Beer (a renowned oncologist) and and Larry W. Axmaker (a psychologist and cancer survivor). Check out Dr. Beer's website and blog Cancer Clinical Trials, with entries such as Cancer Clinical Trials: How to get the new treatment (5-14-12).

Center Watch (information, news, and analysis of and about clinical trials, study grants, career opportunities, and trial listings to professionals and patients. Search for clinical trials, learn about physicians and medical centers performing clinical research, and learn about drug therapies newly approved by the FDA.

Cancer Guide (Steve Dunn's site, maintained posthumously).

The Truth Wears Off (Jonah Lehrer, The New Yorker, 12-13-10). The decline of significance in results from clinical trials explained by selective reporting, regression to the mean, and positive publication bias. "Our beliefs are a form of blindness," writes Lehrer (e.g., results from trials on acupuncture are more positive in Asia than in the West). Early termination of trials that show a positive result could also enshrine a statistical fluke, adds one reader.


Understanding the debate on health care reform and health policy



•
Whitehouse.gov The eight basic consumer protections the White House wants health care reform to cover: (1) No discrimination for pre-existing conditions, (2) No exorbitant out-of-pocket expenses, deductibles or co-pays, (3)No cost-sharing for preventive care, (4) No dropping of coverage if you become seriously ill, (5) No gender discrimination, (6) No annual or lifetime caps on coverage, (7) Extended coverage for young adults, (8) Guaranteed insurance renewal so long as premiums are paid. Learn more about these consumer protections at http:/​/​www.whitehouse.gov/​
• Excluded Voices. Trudy Lieberman's penetrating series of interviews on health care reform, in Columbia Journalism Review. Start with her interview with Wendell Potter, who "didn’t want to be part of another health insurance industry effort to shape reform that would benefit the industry at the expense of the public." You can also listen to Bill Moyers interview Potter or read the transcript and Potter's testimony before Congress.
• C-Span's Health Care Hub is a good place to find various town hall discussions, hearings, wonderful links. C-Span, you're wonderful!
• The Cost Conundrum: What a Texas town can teach us about health care (Atul Gawande, The New Yorker, 6-1-09)
• A consumer guide to handling disputes with your employer or private health plan, 2005 update, Kaiser Family Foundation
• Covering Health (American Health Care Journalists blog, "Keeping journalists informed--and connected")
• Cancer Patients, Lost in a Maze of Uneven Care (Denise Grady, NY Times, 7-29-07
• C-Span's Health Care Hub is a good place to find various town hall discussions, hearings, wonderful links. C-Span, you're wonderful!
• DrSteveB's blogroll (helpful Daily Kos blogger--and check his blogroll for other resources)
• Find Help (HRSA links to free and inexpensive care)
• Guaranteed Health Care (National Nurses Organizing Committee, California Nurses Association)
• Health Affairs (the policy journal of the health sphere). See in particular the Health Affairs blog , which, during the Supreme Court heartings on "Obamacare" has entries such as Wendy Mariner On The Supreme Court’s Individual Mandate Oral Argument: The Search For A Limiting Principle

• Bitter Pill: Why Medical Bills Are Killing Us (Steven Brill, Time Magazine, on Byliner, 3-4-13). Following the money, Brill finds that there is "no such thing as a free market in healthcare, if one defines a free market as a place where there is some balance of power between the buyer and the seller. Instead, healthcare is – except when Medicare is the buyer – a lopsided seller’s market. That became clear at both ends of the money trails I followed – from the patients’ lack of any knowledge of what they were buying or its prices, much less any leverage to bargain over it, to the sellers’ ability and willingness to charge absurdly high prices on everything from gauze pads to ambulance services to cancer wonder drugs."
The only people along the supply chain who were not reaping a bonanza from this imbalance were "those actually treating the patients -- the nurses and doctors (unless the doctors were gaming the system by reaping consulting fees from drug or device makers or setting up diagnostic clinics in their practices in order to steer patients there for expensive tests)." The full 36-page article can be downloaded here.
• The Conspiracy To End Cancer (Bill Saporito, Time magazine, 4-1-13). The hero scientist who defeats cancer will likely never exist. No exalted individual, no victory celebration, no Marie Curie or Jonas Salk, who in 1955, after he created the first polio vaccine, was asked, So what’s next? Cancer? — as if a doctor finished with one disease could simply shift his attention to another, like a chef turning from the soup to the entrιe." It's going to mean many teams working together. "For investigators, it means changes in the way careers are developed, the way data — and especially credit for achievement — are shared. For institutions, team research means changes in contracts, compensation, titles and the path of intellectual property. For pharmaceutical companies, it means restructuring the way experimental drugs are allocated and clinical trials are conducted."
• HELP Is on the Way (Paul Krugman on why universal health coverage is affordable)
Health Insurance Consumer Information (news you can use), with blogs that follow the health care debate and discuss news of health insurance coverage around the country, and a Consumer Guide for Getting and Keeping Health Insurance for each state and the District of Columbia. The American Cancer Society and the Robert Wood Johnson Foundation and other organizations provide support for this research by The Georgetown University Health Policy Institute. Worth checking out.
• Health Insurance Woes: My $22,000 Bill for Having a Baby (And I had coverage for maternity care! Sarah Wildman, DoubleX, 8-3-09). "Our insurer, CareFirst BlueCross BlueShield, sold us exactly the type of flawed policy—riddled with holes and exceptions—that the health care reform bills in Congress should try to do away with. The “maternity” coverage we purchased didn’t cover my labor, delivery, or hospital stay. It was a sham."..."The individual insurance market is like that old joke about the food being terrible and the portions too small; it’s expensive, shoddy, and deeply unsatisfying. Those of us who buy into it are not protected by the federal and state laws that govern employer-based health care. In fact, there’s no one looking out for us at all."
• Lessons of a $618,616 Death (Amanda Bennett, with Charles Babcock, for Bloomberg Businessweek 3-4-10). Early discovery of kidney cancer gave Bennett's husband years more life than he would otherwise have had. But analyzing all the medical bills after his death was enlightening. "The documents revealed an economic system in which the sellers don't set the prices and the buyers don't know what they are. Prices bear little relation to demand or how well goods and services work."
• Medical Science and Practice in Conflict (Kevin Sack, NYTimes, 11-20-09, on how the consumer public may see evidence-based medicine as a step toward rationing)
• Physicians for a National Health Program (supports single-payer national health insurance)
• Reach of Subsidies Is Critical Issue for Health Plan (Robert Pear, NY Times, 7-26-09—on another important issue: where the money comes from to cover the costs of the formerly uninsured)
• Science Blogs (Health)
• SurveyUSA News Poll on Health Care Data (showing public opinion on various aspects of the health care debate, by gender, race, party affiliation, ideology, level of college education, income,region, and age)
• Why markets can’t cure healthcare by Paul Krugman (The Conscience of a Liberal, NY Times, 7-25-09).
You can watch Michael Moore's documentary, Sicko online. You can hear on Bill Moyers' interview with Wendell Potter how the insurance industry planned to defuse reactions to Moore's documentary. As Potter states: "The industry has always tried to make Americans think that government-run systems are the worst thing that could possibly happen to them, that if you even consider that, you're heading down on the slippery slope towards socialism. So they have used scare tactics for years and years and years, to keep that from happening. If there were a broader program like our Medicare program, it could potentially reduce the profits of these big companies. So that is their biggest concern." Potter himself says of the documentary, "I thought that he hit the nail on the head with his movie. But the industry, from the moment that the industry learned that Michael Moore was taking on the health care industry, it was really concerned."


Godwin's Law: ""As a Usenet discussion grows longer, the probability of a comparison involving Nazis or Hitler approaches"
~ Mike Godwin, creator of Godwin's Rule of Nazi Analogies, fearing glib use of the term will dilute the meaning of "Never Again"

[Go Top]

“We're all just walking each other home.”
~Ram Dass

Nicholas D. Kristof, in a NYTimes Op Ed column (Cancer From the Kitchen? 12-5-09), writes that he asked doctors "what they do in their own homes to reduce risks. They said that they avoid microwaving food in plastic or putting plastics in the dishwasher, because heat may cause chemicals to leach out. And the symposium handed out a reminder card listing 'safer plastics' as those marked (usually at the bottom of a container) 1, 2, 4 or 5. [This] suggests that the 'plastics to avoid' are those numbered 3, 6 and 7 (unless they are also marked “BPA-free”). Yes, the evidence is uncertain, but my weekend project is to go through containers in our house and toss out 3’s, 6’s and 7’s."

"Experts say the rise in cancer is simply down to people living longer."
~Science for Celebrities (encouraging celebrities to button it with their non-fact-based theories about various diseases)

“We may not be able to cure a physical disease or erase psychological damage, but, even in our final moments, we can strive toward wholeness. We can be parents who have open eyes and surer footing. How does healing occur? First, by accepting the truth of the wound. By experiencing the pain rather than running from it, and that includes letting our children have their own pain. Healing also occurs by imbuing the facts with meaning, texture, and voice — creating a story.”
~ Linda Blachman, in Another Morning: Voices of Truth and Hope from Mothers with Cancer

"Have you ever noticed that only in time of illness or disaster or death are people real?"
~Walker Percy, The Moviegoer

"I know why Tony Snow, George W's press secretary, called his bout with colon cancer, 'the best thing that ever happened to me.' And why my friend, Gilda Radner said about cancer, 'If it wasn't for the downside, everyone would want it.'

"The best side-effect of fighting a life-threatening disease is learning how to live.

"When you're made frighteningly aware of how little time you may have left, learn what is important: family, friends and helping others."
~ Joel Siegel, after ten years of fighting colon cancer

"Maybe we should think about some sort of oral history project. Or maybe we should just leave something behind for those close to us: letters, a diary, tapes or even videos. Just something to say, 'I was here. I lived through this. And this is what I learned.' I guess what I'm really talking about is some way to tell those who will follow in our footsteps, 'You're not alone.'
-- Leroy Sievers

Dying: A Book of Comfort, life-affirming selections provide comfort when the end of life is increasingly a possibility