The Emperor of All Maladies (2010)

A Biography of Cancer
by Siddhartha Mukherjee

New Yorker Review of EOAM by Steven Shapin, November 6, 2010.

This is an incredible book that won the Pullitzer Prize in 2011. The following is from Publisher's Weekly: " Mukherjee's debut book is a sweeping epic of obsession, brilliant researchers, dramatic new treatments, euphoric success and tragic failure, and the relentless battle by scientists and patients alike against an equally relentless, wily, and elusive enemy. From the first chemotherapy developed from textile dyes to the possibilities emerging from our understanding of cancer cells, Mukherjee shapes a massive amount of history into a coherent story with a roller-coaster trajectory: the discovery of a new treatment--surgery, radiation, chemotherapy--followed by the notion that if a little is good, more must be better, ending in disfiguring radical mastectomy and multidrug chemo so toxic the treatment ended up being almost worse than the disease. The first part of the book is driven by the obsession of Sidney Farber and philanthropist Mary Lasker to find a unitary cure for all cancers. (Farber developed the first successful chemotherapy for childhood leukemia.) The last and most exciting part is driven by the race of brilliant, maverick scientists to understand how cells become cancerous. Each new discovery was small, but as Mukherjee, a Columbia professor of medicine, writes, "Incremental advances can add up to transformative changes." Mukherjee's formidable intelligence and compassion produce a stunning account of the effort to disrobe the "emperor of maladies."

The Killer Within (2011)

(Published January 2011)  
Philip Carlo's investigative achievements are remarkable, but what wasn't known to his readers is that, while working on The Ice Man, he learned he had amyotrophic lateral sclerosis (ALS), a terminal illness that causes all of the muscles in the body to atrophy over time. Suddenly, after years of penetrating the minds of killers, Carlo found himself being pursued by the grim reaper. But rather than lying down and succumbing to the disease, Carlo continued to work, and his books are still being published, to both critical and commercial acclaim.

In The Killer Within, Carlo documents his difficult experiences with ALS and explains how he has managed to continue to write prodigiously in the face of adversity. The Killer Within is a gripping, suspenseful page turner that pulls the reader into the netherworld of Mafia bosses, Mafia hit men and serial killers, as well as the hard realities of dealing with a fatal disease.

Mr. Carlo died in November 2010:  NY Times Obit.

Living with a brain tumor

When language falls by the wayside, of what does the mind consist?

“This is about my dying: and how my life got here.” So begins Tom Lubbock’s poignant piece about what it has been like living with a brain tumor for the past two years.

In 2008 Lubbock, a British art critic and journalist, was diagnosed with glioblastoma multiforme, a malignant brain tumor. What made his condition all the more grave was that the growth developed in his left temporal lobe—the seat of language. Lubbock, who makes his living by the art of composing words on a page, was forced to face the fact that eventually he would lose his ability to write and speak.

Lubbock muses: “I won't recover, no. But I haven't been given a definite time limit. So the narrative seems unclear and my luck, in a way, is both bad and good....I recognise that I am being kept alive by my treatment. I can hope for a prolongation for a little. I believe in my life continuing, though not for very long. I don't feel physically in pain – the brain has no nerve feelings, of course – nor have I been very interested, in fact, in the science.

“At the same time, this life is unbelievable. At moments, it is terrible and outrageous. But in other ways, I accept what it brings, in its strangeness and newness. This mortality makes its own world.”

Tom Lubbock’s amazing essay can be accessed in its entirety here.

A Life Beyond Reason

Chris Gabbard, an associate professor of English at the University of North Florida, has published an essay on the evolution of his perspectives regarding his severely handicapped son, August. Professor Gabbard has much to teach us about the depth of parental commitment and how caring for a special needs child can enhance the outlook of the caretaker as well.

Gabbard writes: “To admit how August has changed me is not to assert that what he has given me compensates for what he, my wife, my daughter, and I have lost on account of the poor decisions made by the hospital where he was born. There is no getting back what we have lost. Compensation is just a trope, and belief in compensation is as superstitious as belief in the medieval notion of correspondences. Besides, nothing can compensate for what all of us have had to give up.

“That is not to deny that August, along with my daughter and my wife, is the most amazing and wonderful thing that has ever happened to me, for he has allowed me an additional opportunity to profoundly love another human being.”

Professor Gabbard’s essay can be accessed in its entirety here. It will also appear in Papa, PhD: Essays on Fatherhood by Men in the Academy, published this month by Rutgers University Press.

The Runaway Bunny

What do you say to a 4-year-old who has been diagnosed with a critical, perhaps terminal illness? What sort of reassurance do you offer? How far out on the limb do you go?

At that age, reassurance takes on the mantel of love. Words help, touch helps, doing an activity together helps. We work with whatever tools we have.

For young children, reading a book together may help reassure them that they do not have to go through their ordeal alone. A book is a story—nothing more, nothing less. Its category means nothing—it is only the story that holds meaning.

First published in 1942 and never out of print, “The Runaway Bunny” by Margaret Wise Brown is a tender tale which serves to reassure young children that, come what may, they will never be deserted by those steadfast significant grownups in their lives.

Making Miracles Happen (1997)

by Gregory White Smith and Steven Naifeh

From Booklist: "When you live with a brain tumor for 20 years, you learn a lot about medicine and about yourself. Smith ( and Naifeh, his twenty-two-year partner and coauthor; their Jackson Pollock [1990] won a Pulitzer Prize) learned how to keep searching until he found the right doctor and the right treatment. He also discovered the importance of the right attitude and of companionable support: be persistent, he says, and when seeing the doctor, have a companion to help in asking questions and remembering instructions. To find the best doctor for your problem, he says, ask other doctors, not their patients; search always for opinions and developing options, not a single right answer; and keep mutual respect between doctor and patient as a goal. Above all, Smith counsels, don't let a disease or an impairing condition turn you into someone different from what you have been."

This is an important book that will be a guide to anyone facing a serious illness.  Gregory White Smith is the prototypical "Akamai Patient."

The Council of Dads (2010)

My Daughters, My Illness and the Men Who Could Be Me
by Bruce Feiler

From Amazon: In 2008, bestselling author Feiler learned he had osteogenic sarcoma, a rare, life-threatening tumor in his left leg . Fearing what his absence would do to the lives of his young daughters, Feiler asked six close friends ("Men who know my voice") to help raise them. Feiler chronicles his battle with cancer, from diagnosis to recovery, as well as his sentimental but moving journey to recruit friends who can carry out his wish to teach his daughters to travel, dream, and live life to its fullest. Feiler's intimate bond with his friends makes them unusually expressive and communicative, and their own biographies lend further inspirational dimensions to the story. It's hard not to get swept along and cheer Feiler on as he fights for his life and his daughters'.

I am indebted to Linda Welsh for sending me a copy of this inspiring and important book.

I Am The Central Park Jogger

A Story of Hope and Possibility
by Trisha Meili

From Amazon: "In April of 1989, a young woman was brutally assaulted and raped while jogging in New York’s Central Park. The attack captured headlines around the world as the anonymous "Central Park Jogger" fought to recover from massive injuries that left her near death. Fourteen years later, in this first person account, Trisha Meili broke her silence to discuss the incident in her own words and reveal who she was before the attack and who she became as a result of it. Meili tells the story of a competitive and driven young executive at a finance firm whose life was destroyed, and how she ultimately rebuilt it. Passages where Meili is reunited years later with the doctors and nurses who saved her life are especially compelling, as are her accounts of testifying in court and her first run after the incident. While her candor is remarkable and certainly moving, it’s worth noting what this book does not include. Meili can provide no detail of the actual attacks (she has no memory of them), she has little to say about the racial controversy her case ignited, and she only briefly mentions the fact that, during the writing of this book, the convictions of her attackers were vacated after another man confessed to the crime. But these are not necessarily omissions; they are simply not central to Trisha Meili’s highly readable story of tragedy and, ultimately, triumph. I Am The Central Park Jogger is not just a book for New Yorkers curious to finally hear from "The Jogger"; it’s an inspirational tale of overcoming enormous obstacles and getting back on the road again. --John Moe"

Wide Awake: A Memoir of Insomnia (2010)

by Patricia Morrisroe

This appears to be an important book about insomnia.
Robert Pinsky, a past U.S. Poet Laureate, in a brilliant review in the NY Times, wrote: "A corollary to the mysteries of sleep are the mysteries of insomnia. Some people have trouble getting to sleep. Others, like Patricia Morrisroe, as she tells us in “Wide Awake,” have trouble staying asleep. Some people, when deprived of sleep, have hallucinations, or they collapse. Others do relatively well. Nor is insomnia the only problem. According to Morrisroe, “The International Classification of Sleep Disorders” recognizes more than 80 categories, including hypersomnia, narcolepsy, various breathing-related sleep disorders, REM behavior disorder, night terrors, painful erections and _circadian-rhythm sleep disorder.

Morrisroe shapes this material as a personal narrative of her quest for better sleep, an odyssey of encounters with various drug researchers and dispensers, psychotherapists and mystics and conference-goers, as well as a range of savants, bullies, discoverers, profiteers, innovators and at least one sage. The first-person character she brings to this quest isn't ironically brooding or darkly extravagant, nor severely pedagogical."

So Much for That (2010)

by Lionel Shriver

This is a fine book that deals mostly with health insurance inequalities and the grossly unfair, tragic and ridiculous state of affairs in the U.S.  It follows two families: one with a wife and mother with mesothelioma and the other with a child with a rare genetic disease, familial dysautonomia.

Lisa O'Kelly's reviewing the book in the Observer writes:  "Dedicating an entire novel to the themes of serious illness and the unfairness of the pre-Obama healthcare system in America is risky. It is unpalatable subject matter and at times, I must confess, I dreaded picking up the book to find out what happened next. But Shriver's furious energy drags you along regardless."

I do not see many major changes here even with the Obama plan.  So Much for That is a great introduction to the state of health care in the U.S.  It is wise and well-researched, educational and a pleasure to read. An important addition to the health care literature.

Fortunate Son (1992)

by Lewis Puller (Wiki Bio)
From Amazon:  Son of the famous World War II Marine commander "Chesty" Puller, Lewis Puller proudly followed in his father's footsteps. It was his misfortune, though, to serve in Vietnam in a war that brought not honor but contempt, and exacted a brutal personal price: Puller lost both legs, one hand, and most of his buttocks and stomach. Years later he was functional enough to run for Congress, bitterly denouncing the war. He lost, became an alcoholic, and almost died again. Then he climbed out of that circle of Hell to write this searingly graphic autobiography, which won a Pulitzer Prize in 1992. One last poignant postscript: three years after the enormous success of this book, the author killed himself.

I remember reading this book when it came out.  It is a memorable book that might be even more important today with so many similarly affected soldiers (and civilians).   An article published on July 4, 2010 in the NY Times "Spirit Intact, Soldier Reclaims His Life" tells a similar story, but focuses mostly on the positive.

Wide Awake (2010)

A Memoir of Insomnia
by Patricia Morrisroe
From the NY Times review (June 28, 2010) "Cheerfully anecdotal, “Wide Awake,” is full of  sleep-related absurdities. It describes Ms. Morrisroe's various forays into the world of insomnia remedies as she tried a plethora of would-be cures. Behavior modification, sleep-inducing drugs, artificial light, meditation, absinthe and orthodontia: these are all avenues she considered. Even the subject of uvulopalatopharyngoplasty as a cure for sleep apnea comes up, though perhaps only so that “Wide Awake” can include that word. 

Three Wishes: A True Story of Good Friends, Crushing Heartbreak, and Astonishing Luck on Our Way to Love and Motherhood (2010)

by Cary Goldberg, Beth Jones and Pamela Ferdinand

"Three Wishes is a memoir-times-three about what happens when co-author Carey Goldberg decides to go to a sperm bank. The eight vials she purchases turn out to have an unexpected effect: As each woman considers using the vials, she falls in love and becomes pregnant without an assist from science. Goldberg, Beth Jones and Pamela Ferdinand take turns sharing their stories, which are not without heartbreak, but happiness and hope ultimately prevail in this surprising tribute to friendship and motherhood, despite the odds." (Bookpage Linda M. Castellitto )

Product Description

From BookPage: Carey, Beth, and Pam had succeeded at work but failed at romance, and each resolved to have a baby before time ran out. Just one problem: no men. Carey took the first bold step towards single motherhood, searching anonymous donor banks until she found the perfect match.

From Amazon: What she found was not a father in a vial, but a sort of magic potion. She met a man, fell in love, and got pregnant the old-fashioned way. She passed the vials to Beth, and it happened again. Beth met man, Beth got pregnant. Beth passed the vials to Pam, and the magic struck again. There were setbacks and disappointments, but three women became three families, reveling in the shared joy of love, friendship, and never losing hope.

See NY Times article about the authors and their Semen Odyssey.

The Gift of Sperm Donor 8282

This is an article about artificial insemination and the odyssey of a particular sperm donation.  The story from the May 23 New York Times is the subject of a book:  "“Three Wishes: A True Story of Good Friends, Crushing Heartbreak, and Astonishing Luck on Our Way to Love and Motherhood” (Little, Brown)."
Read the Times Article and see listing for the book, "Three Wishes".

So Close: (2009)

Infertile and Addicted to Hope
by Tertia Loebenberg Albertyn 
From Amazon:  Meet, marry and make a baby: That's how it's supposed to go, right? What happens when you start trying for a family ... and trying, and trying some more? How far do you go to achieve your dream of having children? So Close is the heart wrenching, exhilarating, devastatingly funny story of Tertia Albertyn's battle with infertility. Tertia wanted a baby so badly she went through nine IVFs. Most people give up after the third. I don't think I am being brave at all. I am just too terrified NOT to try again. In her worst nightmare she could never have imagined that making a baby would take her four years, each treatment bringing her and her husband Marko closer and closer to creating their family. During Tertia's journey everything that can go wrong does go wrong. Until, finally, everything goes just right. Tertia is as hilarious as she is irrepressible, as approachable as she is knowledgeable. If you are struggling with infertility, have triumphed over infertility or have felt empathy with someone who is going through this experience, you will find a friend in Tertia.
DJE:  I haven't read this yet; however, it comes highly recommended.

My Own Medicine (2002)

A Doctor's Life as a Patient 
by Geoffrey Kurland
Overview from Google Books: From mortal illness to miraculous recovery, a doctor's moving account of his own experience as a patient At forty-two, Geoffrey Kurland, a pediatric pulmonologist specializing in such deadly diseases as cystic fibrosis, was diagnosed with hairy cell leukemia, a rare cancer with a statistically low survival rate. A remarkably fit man in training for 100-mile "extreme" races whose job is equally high performance, he is forced to confront the challenge of his own mortality. He tries to cope by turning inward in a desperate search for ever-elusive answers. As the doctor becomes a patient and lives through the terror and pain that he had until then only observed at a remove in his young patients, he learns invaluable life lessons that will ultimately make him a better doctor. This is Kurland's memoir of his diagnosis, treatment, and return to health and "normal" life-an unforgettable testament to the resilence of the human spirit.

There is also an amazing talk about the book which Geoffrey Kurland gave at Chautauqua in 2004.  My Own Medicine: Lessons Learned en Route to Recovery.  I found it at my local library.

Surviving the Fall

The Personal Journey of an AIDS Doctor
by Peter Selwyn
From Publisher's Weekly:  "Selwyn entered his residency at an inner-city Bronx hospital in 1981, just in time for the arrival of AIDS. Medical school had prepared him to be a healer, but in the face of a devastating, incurable disease, he found his most important role was as a "witness and companion." There were certain characteristics of the disease that made it more personal, and in the devastating effects of AIDS on families, Selwyn began to sense parallels with the suicide of his father: "Like AIDS, suicide is something that stigmatizes both those who die and those who survive, something that is shrouded with shame, guilt, and secrecy." Selwyn successfully intertwines his own story with portraits of his most memorable patients, resisting the temptation to turn them into martyrs. He admires drug addicts' "yearning to live intensely in every moment" and eventually, as he becomes more and more obsessed with his work, recognizes that he shares some of their patterns of addictive behavior. As befits a memoir, this book's best moments are the intensely personal ones: Selwyn's secret fear that any weight loss meant the onset of AIDS; his attempt to trace his father's last steps in the building where he died. Selwyn credits his journey through the AIDS epidemic with making him a better doctor, but the healing went both ways as he found a new understanding that would allow him to treat the untended wounds left by his father's death."

DJE:  This is a memorable and important work for anyone interested in the effects suicide on family members.

From the Heart (2007)

by Kathy Kastan, LCSW, M.A.Ed.

"The first book written for women dealing with the emotional repercussions of heart disease, From the Heart will is a guide to women with heart disease move forward with optimism and courage. It addresses such questions as: How do you regain a strong self-image? Grapple with your fears? Talk to the people you love about your illness? Learn to trust your body?

This book combines Kastan's personal experience and expertise as a therapist with stories from scores of other women with heart disease. It is an invaluable resource which will help women reduce stress, give up hard-to-break habits, adapt to new lifestyles ? and thrive again."

The book can be bought at Amazon or obtained more cheaply at Abebooks.com.

This is a fine, useful book. It is recommended to any woman with a history of heart disease, at risk, or with friends and/or relatives with risk factors.

On Our Own (1976)

Patient-Controlled Alternatives to the Mental Health System
by Judi Chamberlin

Ms. Chamberlin, who died in January 2010 at age 65, was a civil rights hero from a civil rights movement you may have never heard of. She took her inspiration from the heroes of other civil rights movements to start something she liked to call Mad Pride — a movement for the rights and dignity of people with mental illness. "On Our Own" is the Manifesto for people with mental health disorders.

Here is an NPR piece about Judi Chamberlin which aired on Jan 19. 2010.

This is an important book. The "Mental Health System" still functions in ways that Chamberlin describes. Every day in my office I see patients who get little help except ineffective pharmacotherapy. They see psychiatrists for a few minutes a month for adjustments of their meds. Of course, it's the poor and the disenfranchised who are the cash cows for these treatment centers.

Look Up For Yes (1997)

by Julia Tavalaro and Richard Tyson

from Google Books:
One woman's passionate and articulate testament to the world that she is, indisputably, alive!

More than thirty years ago, Julia Tavalaro woke up from a coma to find herself almost completely paralyzed by two strokes that had also left her unable to speak. Suddenly, just thirty-two years old, she was a prisoner in her own body and a victim of the ignorant and cruel treatment of hospital workers who neither noticed nor cared that the "vegetable" they changed and fed every day was actually a bright and emotional woman. In this powerful memoir, painstakingly written with the help of poet Richard Tayson, Tavalaro details the hellish life she endured as a defenseless patient, angry and desperate to die, and the liberating actions of two therapists who took the time to realize that she was not incognitive but rather brimming with intelligence and life.

At last, Tavalaro managed to break through the isolation that imprisoned her. Slowly, methodically, she regained her ability to communicate -- aided by technological and therapeutic developments -- and began to compose poems that drew on the memories of her life before her stroke. Beautifully written and achingly heartrending, Look Up for Yes is a testament to a passionate and articulate woman who is ready and able to let the world know she is, indisputably, alive.

DJE: Similar to "The Butterfly and the Diving Bell" but darker and more powerful. This is the story of an ordinary woman who by luck was SAVED (after a fashion). Worth reading for neurologists, people who work in rehab, and anyone interested in the triumph of the individual over amazing odds.

The Cure

by Geeta Ananda

From Amazon: "At 15 months old, Megan Crowley was diagnosed with Pompe disease, a rare genetic disorder that was likely to reduce her life span to five years at most. Her five-month-old brother, Patrick, shared the same disease and its crippling progression. Their father, John Crowley, a freshly minted Harvard MBA graduate, was determined to use his brains and connections to find a cure. He started a family foundation to fund research on Pompe disease and eventually headed a biomedical start-up company with a promising approach. Ironically, the more involved he got in efforts to find a cure, the slimmer the prospects were for his own children as hard business decisions and conflict-of-interest questions thwarted his efforts. Blocked from getting his children into clinical trials that could prolong their lives, and watching them grow weaker and weaker, Crowley concedes that he was occasionally tempted to simply steal the precious drugs. But he pressed ahead. Anand, Pulitzer Prize-winning reporter with the Wall Street Journal, delivers a detailed and heart-wrenching account of a father's extraordinary efforts to save his children and find a cure for a debilitating and life-threatening disease."Vanessa Bush
The movie "Extraordinary Measures" is based on this book.