Book Excerpts
Table of Contents
PREFACE
INTRODUCTION: The Things You Need to Know That No One Tells
You About Living
TAKING CARE OF YOURSELF
The Emotional Side
Cautions About Your "Attitude"
The Physical Side
A Word about Fear
MEDICAL INFORMATION
Deciding How Much You Want to Know
Preparing to See Your Health Care Provider
Using an Advocate
Getting and Remembering Information/Answers
Getting More Than One Opinion
Finding "Experts"
Using the Internet
Keeping Track of Your Medical Information
CHOOSING TREATMENT
Identifying What Is Right for You
Selecting a Provider or Providers
Selecting a Hospital
CHOOSING NOT TO HAVE TREATMENT
GETTING SUPPORT
Identifying What Is Right for You
Asking for Support
Using the Support
Finding Support
LIVING IN THE HOSPITAL
Managing the Medical Aspects of Your Stay
Coordinating Care
Creature Comforts
BEING AT HOME
Managing the Medical Aspects
Managing the Non-Medical Aspects
DEALING WITH HEALTH INSURANCE
Working with Case Managers
Getting Authorizations
Understanding Your Bills
Resolving Insurance Problems
Filing a Complaint
Getting Assistance Beyond Your Insurance Company
WHEN IS IT TIME TO STOP TREATMENT?
Why Stop Treatment?
What Is Right for You?
Planning for Your Death
Talking with Friends and Family
GOING FORWARD
ACKNOWLEDGEMENTS
----------------------------------------------------------------------------------------------------------
INTRODUCTION (top)
The Things You Need to Know That No One Tells You About Living
When you are diagnosed with a life-threatening illness, it is all too easy to
find yourself transformed into a "PATIENT." You seem to lose your identity.
My experience during my husband's bone marrow cancer, and now my own,
convinced me that you CAN have a life. You can retain much of the identity
you had before you were ill, and as important, you can exercise a surprising
amount of influence over and control of your treatment and treatment
environment.
This guide is based on the following assumptions:
- Each person must pursue healing in a way that fits with who he or she is.
What is the right choice for one patient may not be the right choice for
someone else.
- In the end, only the patient is in a position to make treatment choices.
Opinions from those who care and data from providers may be useful,
but the patient has to choose treatment.
- Health care providers tend to focus on symptoms, blood counts, tumor
markers, etc. Their attention is, most often, medical intervention and
NOT quality of life.
- The patient can do a great deal to maintain that quality of life throughout
treatment and during the course of a life threatening illness.
- The suggestions in this guide are just that --suggestions. Some may
seem helpful to the reader and others may seem way off base. I invite
you to use what you want and disregard the rest.
----------------------------------------------------------------------------------------------------------
TAKING CARE OF YOURSELF (top)
While you may turn over some important aspects of your health care to your
doctor or health care provider, only you can attend to some key aspects of
your health. When you do not feel well, it is easy to get overwhelmed by your
own sense of illness. You can lessen this feeling and increase your sense of
well-being. There are things that you can do that will help you face whatever
is in front of you.
The Emotional Side
You will undoubtedly experience a wide range of feelings when you are
diagnosed and as you live with your illness. Extreme feelings are a normal
response. Sometimes, it can seem as if you are on an emotional roller
coaster. Finding some balance can be very challenging. Living with lots of
intense emotions may very well be part of your life now....
----------------------------------------------------------------------------------------------------------
MEDICAL INFORMATION (top)
Deciding How Much You Want to Know
For some of us, getting information helps us cope. For others, it can be
over- whelming or too discouraging. What is going to be most helpful for you?
Each of us has to figure that out for ourself. Not an easy task when everything
is so unknown and unpredictable. As early into the process as you can, think
about how much and what type of information you want.
Do you want to know the survival odds? If the odds are not in your favor, how
do you think it might affect you? Could it make you feel doomed? Will you be
able to see that the numbers, while useful, are only just that? Numbers. If you
want to get a great perspective on statistics and odds, check out this article
by Stephen Jay Gould, "The Median Isn't the Message" at
http://cancerguide.org/median_not_msg.html.
Are you going to want to have choices or would you prefer a single
recommendation from your doctor? Some individuals feel empowered by
gathering a lot of information and making a selection while others can be
completely overwhelmed by needing to make decisions....
----------------------------------------------------------------------------------------------------------
LIVING IN THE HOSPITAL (top)
IV Pumps. While these pumps are great for feeding medications into your
body, their alarms can quickly become a dreaded aspect of your hospital
stay. The alarm sounds when medication is done and needs to be stopped
or changed. However, the alarms have a tendency to go off at a lot of other
times and often. The alarm has a way of repeatedly going off as soon as the
pump is "fixed" and the nurse leaves the room. You can be waiting what
seems like any incredibly long time for a nurse to come in and turn it off. This
is especially troublesome when you are trying to sleep. Fortunately, the pump
alarm has an "off" or "silence" switch. In my experience, most nurses are
happy to have you silence the alarm as long as you call them so they can
come back and check the pump and restart it. If the alarm problem continues,
ask the nurse to find another pump. For some reason, these pumps are just
temperamental.
Clothes. Bring your own. There is no greater indignity than having to walk
around in a "Johnny" with your backside hanging out. Bring pajamas, sweat
pants and/or a robe that make you feel good and comfortable. Use slippers
and avoid bare feet. Hospitals are incredible sources of infection and foot
protection can help. Bring comfortable street clothes and put them on any
time you are well enough to get out of bed for more than a few minutes.
There is something empowering about wearing your own clothes. When I felt
up to it, I found wearing a little jewelry and putting on makeup helped.