An Interview with author Nancy Keene

Interview Contents:

Introduction

Despite the headline-dominating forces of rising insurance premiums, cost containment measures, and big business profits, author Nancy Keene strongly believes the essence of healthcare still comes down to a fundamental relationship between two human beings. In her book Working With Your Doctor: Getting the Healthcare You Deserve, Keene communicates a framework to help the lay person build and maintain workable partnerships with their physicians in any healthcare environment.

“It’s an imperfect world. This book is about how to maximize the benefits and get what good you can out of the health care system,” says Patient Centered Guides Editor Linda Lamb. “A lot of this has to do with people’s attitudes about doctors. The fact is, doctors aren’t gods and they don’t have all the information, but they can be your best advocate for getting the most out of your health insurer.”

An Interview with Author Robert Finn

Robert Finn has turned a lifelong interest in organ transplants into a working manual for anyone in need of a transplant or who has recently received one. His book, Organ Transplants: Making the Most of Your Gift of Life, is also a valuable resource for those in the transplant healthcare field.

Finn and Patient-Centered Guides editor Linda Lamb envisioned Organ Transplants as a guide to the specialized needs of transplant recipients. It complements the donor perspective ofThe Nicholas Effect, Reg Green’s memoir of his son’s death from a drive-by shooting in Italy and of Green family’s decision to donate their son’s organs.

Why should a transplant patient need a book? Aren’t there teams of doctors, surgeons, social workers, and financial counselors to answer any questions a patient might have?

The fact is that success in getting exactly what you need from the healthcare system depends more and more on being well-prepared. This is particularly true in organ transplantation, where the gateway–getting on the acceptance list for a transplant–is controlled by a stringent evaluation process developed by theUnited Network for Organ Sharing (UNOS).

Starred Review by Library Journal  for Autistic Spectrum Disorders

* Waltz, Mitzi. Autistic Spectrum Disorders: Understanding the Diagnosis and Getting Help.
O’Reilly. (Patient-Centered Guides). 2002. c.500p. ISBN 0-596-50013-0. pap. $29.95 PSYCH

An update to Waltz’s Pervasive Developmental Disorders: Finding a Diagnosis & Getting Help(1999), this new book will be incredibly useful to parents and educators working with children and adults suffering from autistic spectrum disorders (ASD).

Of the changes made to this edition, first and foremost is the terminology: ASD, which incorporates autism, Asperger’s syndrome, and other pervasive developmental disorders into one diagnosis, is now an accepted umbrella term for those conditions.

In a very readable format, Waltz covers the latest developments in medical and therapeutic interventions and environmental links, insurance, education, family issues, support, and resources for the English-speaking world.

CAPHIS Reviews  the First Edition of  Autistic Spectrum Disorders

CAPHIS, the consumer health section of the Medical Librarian Association, reviewed the first edition of Autistic Spectrum Disorders: Understanding the Diagnosis and Getting Help. That first edition was titled Pervasive Developmental Disorders.

The second edition has just been published (July 2002) and received a starred review from Library Journal in the July 2002 issue.

It is estimated that one out of every 1000 children in the US has a Pervasive Developmental Disorder or PDD, a label that includes autism and a range of other neurological conditions. A significant number of children (and adults) do not meet the diagnostic criteria for autism and a diagnosis of Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) is reached by ruling out known, specific PDDs such as Asperger’s Syndrome, Fragile X and Rett Syndrome.

Paying specific attention to PDD-NOS and atypical PDD, this thirteen-chapter guide covers facts about PDDs, including a broad overview of the entire PDD spectrum, how a diagnosis is reached, drug and non-drug treatments, insurance, school, family issues, finances, and support systems.

Library Journal Review  for After Breast Cancer

For over two million women living today after treatment for breast cancer, mention of the disease often elicits the response, “Been there; done that; don’t want to do it again.” Mayer, a counselor, activist, and contributor to publications such as MAMM magazine, felt the same after her diagnosis in 1989. But having researched the disease, she knew other women were at sea regarding their feelings and concerns about what happens next. Are they cured? Is the breast cancer gone? Will it recur? In an attempt to demonstrate the universality of these concerns, Mayer includes comments from women who are veterans of the breast cancer campaign. She also offers up statistic upon statistic of the current state of breast cancer and survivorship-perhaps too many, as the picture seems a bit more muddled after reading this than before. Ultimately, Mayer encourages women to be thoughtful, not tormented; they should let their bodies tell them if something is wrong. Breast cancer patients are basically all in the same boat. Mayer’s final advice is to grab an oar and keep rowing. For comprehensive patient-health collections.

ForeWord Magazine Reviews  After Breast Cancer

Ambiguous Area

“I’m grieving for my own soft, wobbly, small, individual breasts all over again. Three years of breastfeeding, 51 years old, they were nothing to write home about. But I miss them dreadfully,” says Caroline, a breast cancer patient.

In After Breast Cancer: Answer to the Questions You’re Afraid to Ask (Patient-Centered Guides, O’Reilly and Associates, Inc, 196 pages, softcover, $14.95, 0-596-50783-6), Musa Mayer, a consultant with the Food and Drug Administration and breast cancer survivor, discusses with women their thoughts concerning what they have lost, their fear of the future, and how they’ve changed. It is the transition between “after-treatment” to “survivor.” Mayer clarifies the overwhelming risk information patients receive, and shares stories from others who have experienced treatment. Cancer survivor Francine, for example, now acknowledges that she has not control over life’s events. It is this fatalistic approach that allows her to “do what I like to do, at all times.”

Sexuality

NHL and the treatments used for it today may affect male and female sexual development, libido, fertility, and the success of pregnancy. For some of us, sexuality, fertility, and pregnancy take a back seat during the cancer experience, but for others, these are very emotional issues–almost as emotionally charged as cancer itself.

Be sure to bring sexuality and fertility issues to your oncologist’s attention if he does not mention them, especially if you or your partner are at the high end of the childbearing years. Avoid having your doctor ‘ s assumptions about your age, family planning, or sexuality place your fertility and sexual function at risk.

Because of the possibly deleterious effects of treatment on fertility, you should consider harvesting sperm or ova for future use if you are facing chemotherapy or radiotherapy for NHL. Even those who believe they will never want children should consider taking the precaution of preparing for future fertility needs.

Glossary of Terms

This glossary lists only terms specific to NHL. For a comprehensive glossary of cancer medical terminology, see Roberta Altman’s The Cancer Dictionary. For more general medical terms, any one of several inexpensive medical dictionaries available in bookstores and libraries should suffice.

Guides to pronunciation are included.

But first, unusual phrases

There are a few specific words and phrases that may be jarring because they mean something other in medicine than they do in everyday usage:

Anecdotal
When used in a medical context, it does not mean a funny story. It means a single case report not yet substantiated by studies using large numbers of people.

Impressive or not impressive
When used in a medical context, it does not mean anything derogatory. It means that, when the patient was examined, a particular feature did not strike the examiner as overwhelmingly unusual. For instance, after palpating your abdomen, the doctor may note in your medical record that your spleen was “not impressive.” This means it did not feel enlarged, and that you did not report pain when she pressed on it.

Common Chemotherapies

Many of the chemotherapy regimens shown below are recombinations of CHOP drugs with additional agents, different timing, or different doses. Some, such as LSA2L2 or NHL-BFM, are quite different from CHOP, instead resembling regimens for childhood acute lymphoblastic leukemia, spread over long time periods. Others are unique agents used against specific NHLs, such as psoralen for cutaneous T-cell lymphoma.

Two tables are provided below:

Multi-drug regimen acronyms and their component drugs are shown in the first table. Unfortunately, acronyms have been created over time following few, if any, rules. In a few cases, such as BFM or POG, the acronym stands for a study group, but most often an acronym is assembled from either:

Bibliography

The following excerpt is taken from the Bibliography of Non-Hodgkin’s Lymphomas: Making Sense of Diagnosis, Treatment, and Options by Lorraine Johnston, copyright 1999 by O’Reilly & Associates, Inc. For book orders/information, call 1-800-998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

Chapter 1: Symptoms and Diagnosis

Altman and Sarg. The Cancer Dictionary. Facts on File, 1992.

Berkow, R., editor. The Merck Manual of Diagnosis and Therapy, 17th edition. Merck & Co., Inc., 1999.

Goleman, Daniel. Emotional Intelligence. Bantam, 1995.

Harpham, Wendy. Diagnosis: Cancer. New York: W. W. Norton, 1998.

Johnson, J., and Klein, L. I Can Cope: Staying Healthy With Cancer. Minneapolis: Chronimed, 1994.

Kubler-Ross, Elisabeth. On Death and Dying. MacMillan, 1969.

Magrath, editor. The Non-Hodgkin’s Lymphomas, 2nd ed.London: Arnold and Oxford University Press, 1997.