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WHOSE BLOOD MATTERS MOST? WHAT DO GENES TELL US? BLOOD MATTERS by Masha Gessen

BLOOD MATTERS: From Inherited Illness to Designer Babies: How the World and I Found Ourselves in the Future of the Gene  by Masha Gessen
(Harcourt, April, 2008)

Review by Nancy Yanes Hoffman, THE WRITING DOCTOR, at www.writingdoctor.typepad.com, email: [email protected],
585-385-1515, 16 San Rafael Drive, Rochester, NY 14618

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       In this “Information Age,” what do we do with our so-called “knowledge.” How can we use it to make the best decisions? Or, at the very least, better decisions? How does the bursting, ever-changing world of genetics inform us about what we should do? Or what we can do?

        Tower Books lists 28 books about genetics and genomes coming  out this year. On March 18th, 2008, the Journal of the American Medical Association (JAMA) will publish a group of theme issues in its own pages and in its Archives of Dermatology, Neurology, Ophthalmology, and Surgery on Genetics and Genomics. Gearing its focus to “Personalized Medicine in a Variety of Specialties,” it aims to examine “the challenges that medical breakthroughs engender.”

         Two years ago, a UK publishing house commissioned my book, GENETICS FOR THE NON-GENETICIST PHYSICIAN.  Although the book is already outdated, it shows how underprepared physicians feel about integrating genomics into the everyday practice of medicine.

          Where can all this research, all these publications, lead us? Can they help us decide what to do about our own thorny medical problems?

          Although one of Tower's 28 books, Masha Gessen’s BLOOD MATTERS is subtitled From Inherited Illness to Designer Babies: How the World and I Found Ourselves in the Future of the Gene (Harcourt, April, 2008), her text disagrees with the promise—and ostensible premise--of her subtitle. By the end of the book, the reader is left still wondering what she would do were she in Gessen’s shoes.

          In 2004, Gessen learned  she had inherited the BRCA1 gene, predisposing her to breast and ovarian cancer.  Bitterly blaming her mother and grandfather for visiting this “deleterious mutation” upon her, she set out to avert the evil decree, which is, she tells us, more common among Ashkenazi Jewish women.

          What should she do? Should every at-risk individual for hereditary disease undergo testing? If the test is “positive” for disease—meaning that the future may be negative, should she opt for major surgery? In Gessen’s case, should she undergo prophylactic removal of her breasts and ovaries? Should she wait and see?

           Is it a blessing or a curse to know about a predisposition to breast cancer? What about other diseases that Gessen discusses, such as Huntington’s disease, where nothing can be done? What about the very rare “maple syrup disease” found among Mennonites, where the future is so bleak for its victims?

           Gessen hones in on her own life and choices, which are the primary focus of her book. Yet the sections about the choices facing Huntington disease’s sufferers are the most telling. Although breast cancer is not universally fatal by a long shot, Gessen seems most able to identify with individuals who might have inherited the viciously fatal Huntington disease gene. 

           When she talks about designer genes, she seems to leave her subject behind. Gessen would have done well to concentrate on four major areas surrounding common chronic adult-onset diseases: outcomes of genomic medicine; aspects of consumers’ needs for  information; physicians’ delivery and counseling of genomic medicine; and communication barriers to integrating genomic medicine into useful preventive care and treatment.

          In her JAMA study (2008:299 [11]: 1320-1334) Maren T. Scheuner asks seminal questions that Gessen never addresses: “do patients who receive counseling and testing have better clinical outcomes in terms of mortality, decrease in incidence of disease, and better clinical responses to pharmaceuticals? And at what cost?"

BLOOD MATTERS is regrettably too self-involved to take the reader along with Gessen on her journey. The interested reader would learn more about what genes mean to our own medical care--our own futures-- by examining the provocative set of articles in the Genetics/Genomics Theme Issue of the JAMA.

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SUFFERING ISN'T LIMITED ONLY TO MAINE: A HEALING TOUCH: TRUE STORIES OF LIFE, DEATH, AND HOSPICE ed by Richard Russo

A HEALING TOUCH: TRUE STORIES OF LIFE, DEATH, AND HOSPICE, ed. Richard Russo (Down East Books, April, 2008)

Review by Nancy Yanes Hoffman, THE WRITING DOCTOR, at www.writingdoctor.typepad.com, [email protected]

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The impulse behind A HEALING TOUCH: TRUE STORIES OF LIFE, DEATH, AND HOSPICE, ed. Richard Russo (Down East Books, April, 2008) is salubrious—or as salubrious as tough times will permit. Its purpose is to awaken long and short-term sufferers of chronic and acute illness—and their caretakers—to the help, the surcease available from hospice care.

In its pages, Richard Russo and five other writers from Maine depict the dark worlds of individuals beset by the demons of death and disease. The stories vary from parents attempting to recover after their son’s sudden death in an auto accident to a couple trying to live with Alzheimer’s disease's depredations.

The skills of the authors also vary, with Russo's writing leading their ranks. Still, their messages are the same. They show how smart Socrates was (actually, nobody except his son ever doubted Socrates's brain power) when he said, “Count no man happy until he’s dead.” Each tale shows people flourishing only to be cut down by the evil spirits lurking on the edges of life.

This little book hones in only, albeit nobly, on the Hospice Volunteers of the Waterville (Maine) Area. The proceeds from its sales will go to the Waterville Hospice. As such, it serves the world of an individual hospice in Maine. It even seems to be a marketing tool for this specific hospice.

But tragedy doesn't limit itself to Waterville, Maine. The rest of us sufferers and caretakers  who live outside Waterville’s gray skies, may find A HEALING TOUCH’s focus too narrow to offer us the helping hand we crave. The possibility of awakening non-Maine dwellers to the varieties of surcease offered by their own local hospices is then regrettably limited.

It might be worthwhile for Down East Books to consider publishing a companion volume along these lines. Such a book would include other hospices and writers from all over the country. Individuals everywhere who have been victimized by life’s depredations could then find resources and support that they need so badly.

Meantime, readers of A HEALING TOUCH may unearth suggestions about where to find help from their local hospices. We hope so.

Welcome! Come blogging along with me.

The Writing Doctor's Blog will talk about books, old, new, and forthcoming. And just to keep us both off the streets will highlight news about medicine and science.

Our first hello is here. There will be good reviews and not-so-glowing reviews coming up. But this one is a winner in the genre of coping, which we all get stuck doing at any and every age. The book is Jesse Gruman's AFTERSHOCK: What to do When the Doctor Gives You or Someone You Love A Devastating Diagnosis (Walker: Feb, 2007).

“Nobody gets out of here alive,” say the sages.  These words jump out of 341 Googled pages, yet most Americans bury them in their souls’ dark recesses—until... until that moment when some doctor drops a dread diagnostic bomb. Then, they—we--learn that not getting out of here alive means us—not some anonymous “nobody.” 

We sit there, stunned. The doctor drones on but we can’t hear any more. Questions hammer our brains. What should we do? Where to go from here? What about another opinion? How to tell husbands, wives, lovers, children? What about a boss or a colleague? How long will it be? Will we suffer?  Suffer much? Can we take care of ourselves? If not, who will? Is it worth fighting this thing?

AfterShock: What to Do When the Doctor Gives You—or Someone You Love—a Devastating Diagnosis, Jessie Gruman’s must-read guide “for reluctant consumers” of every age, provides a road map for what to do now, when we know our bodies have betrayed us.   AfterShock is a New Best Friend for figuring out where—and how--to put one foot in front of the other, taking crucial steps after  the disease terrorists strike.

Once our passports to the World of the Well are revoked, Gruman leads us through the wilderness.  Outlining every day reactions, choices, decisions, obstructions, she maps roads for recognizing symptoms, knowing necessary tests, understanding their results, partnering with physicians on treatments with better outcomes. She walks us through the craps table of risk-benefit ratios on cures, remissions, and side-effects.

Tips, little and big, fill AfterShock’s pages: how to find doctors and check their qualifications (no, they’re not all equally competent or communicative); how to get beyond specialists’ Praetorian guards, those secretaries who stall appointments for three months; how to cope with doctors, hospitals, staffs, and institutional rigidity.  Most of all, how to learn what’s essential, learn it fast, assess its accuracy, and use it most effectively.

Whether we’re getting Social Security or fresh out of school, a “devastating diagnosis” turns us into forlorn wanderers seeking answers. Knowing that a disease we never heard of—or one we always feared—is eating us creates Internet-hunters for information. But seeking isn’t always finding. Sometimes, a bad case of information-overload results.  Randomly Googling diagnoses may keep us from seeing the forest from the trees. We need Gruman for our guide.

Doing small day-to-day chores are a tall order.  AfterShock’s rich how-to appendices provide expertise in navigating the patient trail, finding evidence-based treatments, defending privacy, or planning estates. It’s all there: from baby-sitters to health insurance and updating a will to supplementing what insurance doesn’t cover (a tough assignment). 

Finding the best doctor may be the tallest order of all. Second opinions from experts are a must, says Gruman, answering crucial “how-to’s.” How to  find and define an expert (not just someone 50 miles from home). Getting an appointment—soon. Questions for the original physician? Questions for the second opinion. Getting doctors to sit down and translate Medspeak and probability words. Not settling for fast answers while the doctor’s hand is on the doorknob.  Preparing every question beforehand and writing the answer. A pencil and paper are a patient’s best friends. 

Remember, warns Gruman, “You are not your disease.” Every step leads to other crossroads and more decisions.  If possible, continue working. Do the math. Even though disease makes demands, working fights the attackers, distracts us--and pays those bills.

Despite all the waiting in doctors’ offices, tests, x-rays, clinical trials, pain and weakness, illness should be secondary. Returning to our pre-illness life is the goal. Battling the discouraging awareness of lost control is crucial.  Not giving up is key.

Interestingly, Gruman asserts, “Not everyone who receives a serious diagnosis needs this book.”  But everyone does. Even the healthiest of us will someday face patient-hood in that lonely, alien land of sickness where we don’t understand the language (who among us knows Medspeak?), and don’t know where to turn.  Everyone, before and after the disease demons strike, needs this handbook for dealing with medical disaster.  Gruman’s guide to the other side of the bedside should be required reading for physicians, medical students, and other healthcare practitioners.

Gruman brings a unique perspective to her interviews with disaster-survivors and their physicians. A pioneering psycho-sociologist and founder of Washington’s MacArthur-sponsored Center for the Advancement of Health, she acts as a consumer advocate for everyone forced to become a patient. 

Most important, Gruman knows catastrophic illness on her flesh.  Three different cancers and a life-threatening cardiac crisis have besieged her. Veteran of countless Intensive Care and Coronary Care Units, surgical “suites,” and oncologists’ waiting rooms, Gruman coped with and defeated all four of her medical disasters.

Yet every time she received a “devastating diagnosis,” her expert credentials went up in smoke. The earth shook beneath her feet and she was just like all her interviewees. She was stunned by “how much energy it takes to get from the bad news to actually starting on the return path to health.”

Decisions and indecisions beset her way.  “There is so much uncertainty about what’s wrong and so many options for what might be done about it; because no one else seems to be taking charge; and because I need to understand what is going on since the decisions I must make are going to affect how I live the rest of my life.” 

How to live the rest of our lives after bad news strikes is AfterShock’s sub-text. It’s a support group between covers for flexing our muscles to manage the devilish details of catastrophic illness. However tough it may be, advises Gruman, we need to pick ourselves up, brush ourselves off, and get going for however much time we have left on the planet.

Reading AfterShock is a must. If or when bad news strikes, it can help most of us “get out of here alive.” This blog--and Gruman's book--are dedicated to that principle.