Product Description
Tens of thousands of Americans are living with adult leukemia, a cancer of the white blood cells. Adult leukemia, which is really a group of diseases, can be a baffling condition for patients and families to understand, and finding targeted information on individual conditions can be difficult.
In straightforward, non-technical language, Adult Leukemia: A Comprehensive Guide for Patients and Families gives those living with leukemia the skills and resources to meet their needs for information and support. It addresses:
- Diagnosis and medical tests
- Finding, and successfully interacting with, a good oncologist
- Characteristics of the leukemias, factors in prognosis, and the various subtypes and staging systems for the disease
- Treatments, including watch-and-wait, chemotherapy, marrow transplantation, stem cell rescue, radiation, biological treatments, and trends in research
- Side effects and long-term effects of treatment, including how to cope and increase your quality of life
- Emotional responses to diagnosis, treatment, remission, possible recurrence, and other aspects of dealing with the condition, including stories from dozens of families living with leukemia
- Getting support from your family, friends, employers, and the broader community
- Leukemia resources: a comprehensive list that includes organizations, print, and online sites
Author Barb "Grannybarb" Lackritz is a leading patient activist in the leukemia community and herself a long-term leukemia survivor. She hosts several online mailing lists, maintains a well-known leukemia web site, and speaks frequently to doctors and government organizations. Lackritz emphasizes the promising emerging treatments for leukemia, covering in considerable depth the clinical trials of new therapies grounded in Western medicine. The information on researching leukemia, glossary, and appendixes will provide welcome support for those who want to keep up with the latest research.
About the Author
Barbara B. Lackritz is a retired educator, speech/language pathologist, and four-term alderwoman and member of the Planning and Zoning Commission for the City of Town and Country, Missouri. Barb received her undergraduate degree from the University of Michigan in 1959 and her master's degree from Columbia University Teacher's College in 1962. She has accumulated about 50 post-master's degree credits. A leukemia survivor and cancer patient advocate, Barb manages 30 cancer support lists for the Association of Cancer Online Resources (ACOR) and, with AML survivor Arthur Flatau, PhD, is webmaster of the award-winning "GrannyBarb and Art's Leukemia Links." Barb's own leukemia story is on the Web and is used by doctors at the National Cancer Institute for training new doctors. She deals daily with requests for information and support from patients who have found her web site or joined her hematological cancer lists. In addition, Barb is currently president of the American Association of University Women--Missouri (AAUW-MO) and member of the National Institutes of Health Director's Council of Public Representatives. She sits on the Board of Directors of ACOR and of the Chronic Lymphocytic Leukemia (CLL) Foundation.
Excerpted from Adult Leukemia: A Comprehensive Guide for Patients and Families by Barbara Lackritz. Copyright © 2001. Reprinted by permission. All rights reserved.
Preface
If you are reading this book it is likely that you or someone close to you has been diagnosed with leukemia. A cancer diagnosis is shocking and fearsome. It changes your life in many ways and affects every member of your family. It brings you face to face with your own mortality. Your friends will be concerned and many won't know how to deal with you. You will be afraid of pain and possible dependence on others, and you will fear dying. Nevertheless, do not despair!
This book offers facts about the disease and contains stories from people who have been through what you face. It offers hope and helps you to deal with and to understand things you are likely to experience. It even suggests ways to make yourself a very well informed patient so that you regain some control over your life.
Why I wrote this book
Everyone in life has to face a dragon or two. I met my dragon in 1988 shortly after my 50th birthday. I awakened that morning thinking that I liked my life. My children were delightful, good friends. My husband was doing well and had his health. I loved my profession and thoroughly enjoyed going to work each day. Life was good.
I've been taught from childhood never to tempt fate. Perhaps I should have known better than to have counted blessings that morning. After work, I stopped off at the doctor's office to have my cholesterol checked. I left the blood sample, and drove home singing despite the traffic. The next morning the call came, "Barb, the blood work looks strange. Come in and we'll do it again." I came in, blithe and unaware. That time the doctor did the pathology himself. He told me:
Your white blood count is high. There are some strange smudge cells in the blood sample. I hate to say it, but I want you to see a hematologist because I think you have chronic lymphocytic leukemia. Oh yes, one thing more. Your cholesterol is within normal limits.
So began my first encounter with this dragon. My cholesterol was fine. That was why I had the blood test done. The dragon swooped down like a lightning bolt. There was no warning, no symptoms, nothing to give me any idea that I was fighting for my life.
It was a quiet, patient dragon. It didn't give me any trouble for almost four years (after we were introduced), but then it roared into battle. My counts had been climbing slowly during those years, but they were nothing to worry about. Suddenly I was fatigued and had a hard time getting out of bed. Bruises on my arms stayed black and blue for weeks. Sinus infections moved in to stay.
The time had come to meet the dragon in battle. Six months of fludarabine monophosphate chemotherapy administered intravenously gave me a temporary victory. More battles followed with shorter spaces between, until I was in a last ditch battle for my life. An autologous bone marrow transplant using my own purged cells gave me the latest victory and I've been cancer free since June 1997. The dragon is sleeping, and I hope it has finally conceded victory to me. If not, I shall battle again.
The battles were not easy. I had great help all along the way. Family, friends, and health professionals provided strong support, good choices, and the best of medical care. My colleagues fought with me right to the last dragon roar and since then we have celebrated life, each day, every day. May my dragon never wake!
When I was diagnosed with chronic lymphocytic leukemia I had no idea that it was a hematological malignancy. I knew nothing about the disease. My mother's sister had died in the 1920s of Hodgkin's disease, but all I knew was that it was a blood disease. I had lots to learn, but there were few resources.
I started at the public library looking for books on leukemia. There was almost nothing there. I called the Leukemia Society of America and (800) 4 CANCER, but they had little to offer an information-starved patient. I tried the Internet, but in those days there was little information online and finding it was not an easy task. As I gained knowledge, I promised myself that I would never let anyone else go through the frustration I encountered alone as I tried to research my disease.
In an attempt to make the information more accessible to the public, I wrote GrannyBarb's chronic lymphocytic leukemia (CLL) story and put it up on the World Wide Web. It is used now as a teaching tool for young doctors studying at the National Institutes of Health. I also created a web site called "GrannyBarb's Leukemia Links," which subsequently was joined with another leukemia links site run by Arthur Flatau, PhD, an acute myelogenous leukemia survivor, to become GrannyBarb and Art's Leukemia Links.
I joined Internet support lists to help myself, and ended up helping to found the Hem-Onc List, supporting those with hematological malignancies. Hem-Onc is the grandmother of the hematological cancer lists. Presently I work with support lists for every kind of leukemia, and with many non-leukemia lists as well. I sit on the board of directors of ACOR, the Association of Cancer Online Resources, and the CLL Foundation to increase visibility and to educate people about leukemia. The CLL Foundation raises funds for research into CLL. I speak at forums throughout the country and, with top CLL specialists in the USA, have participated in online web casts that are promoted by the Leukemia and Lymphoma Society. Now I'm writing this book to try to bring information to people who are dealing with this disease but who may not yet be online.
If you are reading this book it is likely that you or someone close to you has been diagnosed with leukemia. A cancer diagnosis is shocking and fearsome. It changes your life in many ways and affects every member of your family. It brings you face to face with your own mortality. Your friends will be concerned and many won't know how to deal with you. You will be afraid of pain and possible dependence on others, and you will fear dying. Nevertheless, do not despair!
This book offers facts about the disease and contains stories from people who have been through what you face. It offers hope and helps you to deal with and to understand things you are likely to experience. It even suggests ways to make yourself a very well informed patient so that you regain some control over your life.
Why I wrote this book
Everyone in life has to face a dragon or two. I met my dragon in 1988 shortly after my 50th birthday. I awakened that morning thinking that I liked my life. My children were delightful, good friends. My husband was doing well and had his health. I loved my profession and thoroughly enjoyed going to work each day. Life was good.
I've been taught from childhood never to tempt fate. Perhaps I should have known better than to have counted blessings that morning. After work, I stopped off at the doctor's office to have my cholesterol checked. I left the blood sample, and drove home singing despite the traffic. The next morning the call came, "Barb, the blood work looks strange. Come in and we'll do it again." I came in, blithe and unaware. That time the doctor did the pathology himself. He told me:
Your white blood count is high. There are some strange smudge cells in the blood sample. I hate to say it, but I want you to see a hematologist because I think you have chronic lymphocytic leukemia. Oh yes, one thing more. Your cholesterol is within normal limits.
So began my first encounter with this dragon. My cholesterol was fine. That was why I had the blood test done. The dragon swooped down like a lightning bolt. There was no warning, no symptoms, nothing to give me any idea that I was fighting for my life.
It was a quiet, patient dragon. It didn't give me any trouble for almost four years (after we were introduced), but then it roared into battle. My counts had been climbing slowly during those years, but they were nothing to worry about. Suddenly I was fatigued and had a hard time getting out of bed. Bruises on my arms stayed black and blue for weeks. Sinus infections moved in to stay.
The time had come to meet the dragon in battle. Six months of fludarabine monophosphate chemotherapy administered intravenously gave me a temporary victory. More battles followed with shorter spaces between, until I was in a last ditch battle for my life. An autologous bone marrow transplant using my own purged cells gave me the latest victory and I've been cancer free since June 1997. The dragon is sleeping, and I hope it has finally conceded victory to me. If not, I shall battle again.
The battles were not easy. I had great help all along the way. Family, friends, and health professionals provided strong support, good choices, and the best of medical care. My colleagues fought with me right to the last dragon roar and since then we have celebrated life, each day, every day. May my dragon never wake!
When I was diagnosed with chronic lymphocytic leukemia I had no idea that it was a hematological malignancy. I knew nothing about the disease. My mother's sister had died in the 1920s of Hodgkin's disease, but all I knew was that it was a blood disease. I had lots to learn, but there were few resources.
I started at the public library looking for books on leukemia. There was almost nothing there. I called the Leukemia Society of America and (800) 4 CANCER, but they had little to offer an information-starved patient. I tried the Internet, but in those days there was little information online and finding it was not an easy task. As I gained knowledge, I promised myself that I would never let anyone else go through the frustration I encountered alone as I tried to research my disease.
In an attempt to make the information more accessible to the public, I wrote GrannyBarb's chronic lymphocytic leukemia (CLL) story and put it up on the World Wide Web. It is used now as a teaching tool for young doctors studying at the National Institutes of Health. I also created a web site called "GrannyBarb's Leukemia Links," which subsequently was joined with another leukemia links site run by Arthur Flatau, PhD, an acute myelogenous leukemia survivor, to become GrannyBarb and Art's Leukemia Links.
I joined Internet support lists to help myself, and ended up helping to found the Hem-Onc List, supporting those with hematological malignancies. Hem-Onc is the grandmother of the hematological cancer lists. Presently I work with support lists for every kind of leukemia, and with many non-leukemia lists as well. I sit on the board of directors of ACOR, the Association of Cancer Online Resources, and the CLL Foundation to increase visibility and to educate people about leukemia. The CLL Foundation raises funds for research into CLL. I speak at forums throughout the country and, with top CLL specialists in the USA, have participated in online web casts that are promoted by the Leukemia and Lymphoma Society. Now I'm writing this book to try to bring information to people who are dealing with this disease but who may not yet be online.
