A Doctor Gets Sick
There is no life experience that can prepare
one completely for the words from a physician like "you have
renal failure and will need dialysis" or "you have cancer
and it is metastatic." In all the years that I have told
countless numbers of patients that dialysis would be needed, I
silently admired them because I did not think that I could ever
endure hearing those or similarly fateful words.
To my horrid dismay, on the first of July,
1998, I had such an experience, as a routine chest x-ray revealed
metastatic lesions in my lungs. It is amazing how rapidly we accept
bad news and how we regroup to develop a strategy to cope with
and overcome it.
The first thing I did was become disoriented.
I actually got lost in the radiology department where I did my
internship. But, after getting a grip I grasped the resolve to
fight this dragon.
Fighting the disease
How I chose to fight it is based upon the insight
I have gleamed over twenty years from the most brave and tenacious
patients I have taken care of. This is sprinkled with the luck
of having done part of my internship and residency in the very
hospital where I now am a patient (MD Anderson Cancer Center).
There is not an excuse for any patient not
to have full information about every clinical trial, every protocol,
the side effects and benefits of therapy. He or she has at their
fingertips merely to push the correct keystrokes to become very
informed. The National Library of Medicine's PubMed
was my first stop. I reviewed every possible scenario and therapeutic
opportunity, and wanted to be secure that the choices of treatment
I had would be of the most benefit to me. Yahoo
was an alternative source. I found my support group on ACOR,The
Association of Cancer Online Resources, Inc, and the most valuable
oncology resources on the web. The ultimate source of knowledge
is the experienced physician. Even doctors need doctors.
Except for the fact that we are both fighting
bad disease, there is a world of difference between the nephrologist,
your friendly supporter through the odyssey of dialysis and transplantation,
and the oncologist. An oncologist today may on the surface be
Marcus Welby. But, underneath that veneer of professional polish,
lies a warrior. No Mr. Nice Guy to the chromosomally endowed little
critters thinking of my lungs as a picnic site. Today's successful
oncologist, at least in my case, is your military commando. His
war is mitotic cancer cells. He comes in like the general with
a battle plan, yes friendly and caring, but also firm and decisive.
You are the battlefield and have been invaded by the enemy. His
job is to pursue, attack and destroy the enemy, cut out the resistance,
then spray again with Agent Orange or Adriamycin or some other
certifiable poison until all remnants of the enemy, its family
and friends, are dead. It is pure genocide, pure hatred and a
military attitude that drives the best of oncologists. Do not
let the fact that they may wear a button that says "Searching
for sushi" fool you - these men and women are Rambos. Once
the beast is dead, cut off its blood supply. Then grow hair back
and "have a nice life."
Support (Internet Style)
One of the most useful sources for me as a
physician has been e-mail discussion groups. I have been around
the world touting this message for NKF
cyberNephrologyTM and the International Society
of Nephrology. Our focus was establishing links to the famous
nephrologist's discussion (and sometimes support) group NEPHROL,
headed by Dr. Kim Solez. I have always lurked on DIALYSIS
and several patient groups, and even awarded NEPHROL and DIALYSIS
the coveted Golden Nephron Awards based upon my impression of
how useful it was to patients and nephrologists. Little did I
know how truly valuable these are until I too got sick. My SARCOMA
e-mail group is made up of a closeknit group of supporters. I
have never seen nor had the pleasure of smiling at or hugging
one of them in person, but on the web they are my special extended
family. Not only fellow patients that have been through what I
am going through, but scared newcomers and old weather-beaten
soldiers who have fought the dragon of metastasis many times,
and serve as an example. He or she can do it, I can do it, you
can to. Support, prayers and information are at the heart of these
groups, and there is one for you, regardless of your disease.
I have spent a tremendous percentage of my
time telling my patients that they needed to show up for dialysis,
needed to stay for the full treatment. I have heard every type
of excuse for cutting times and treatments. Some patients have
cussed me out. One said "Get out of my face." Another
said "You have no idea what it is like to go through this."
I have sometimes become unpopular among patients because I would
not accept the selfish remark , "It's my life" My response,
"But, what about your wife, your little children and grandchildren,
your friends. It is selfish to rob them of your beauty just because
you are too impatient to sit in a chair four hours." Maybe
it is fate, but my chemotherapy time is the exact time as my average
patient's dialysis - four hours. I go to a state hospital, and
sometimes have to wait two and a half hours to be put on. I have
a pesky pump as my companion, and can either watch boring soap
operas, read or sleep. I can complain, laugh, or cry. There is
only one thing, and one thing only I cannot let myself do - cut
my time short.
There are no guarantees how we will respond
to therapy, dialysis or infusions. The best we can do is follow
recommendations because they are the results of past experiences
and at least we have the benefit of pioneer patients that went
three hours and five hours and settled for four.
The same with taking medicines, drinking proper
fluids, staying on the right diet. All things in health care work
as part of a single system. Doing the right thing is the only
way to stay healthy. If one does not want to stay healthy, then
think of those who will have to care for you, or will miss you.
With a great deal of humbleness and humility
to my patients, I can now very safely proclaim, "It is a
lot easier to be the doctor than the patient"
Being a better doctor
Any time you do not have control of your own
body it is humiliating and defeating. From the moment the armband
is placed on your hand you become different. The needles in veins,
shaving your skin, more needles, gowns, betadine stains, tape
burns, tests in machines that sound like broken pumps - it all
leaves you feeling helpless. This experience is compounded by
the fact that you have a disease that has a relatively high mortality
rate. All the time I was in the MRI I was thinking about what
I could do to make my patient's experiences better based upon
the humiliation I was enduring.
Being on time
Patient's time is valuable, even more so if
we have a disease that may shorten our lives. Making us wait two
hours is cruel and inconsiderate. I will hopefully never do this
again. For us doctors, nurses, support persons and dialysis staff
to make patients wait an hour or two is extremely humiliating
and dehumanizing, especially to one that has taken off work, and
is striving to show himself and perhaps his boss that he is not
incapacitated by his illness. These waits are the result of understaffing.
As medicine has changed to meet economic demands, staff shortages
were often seen as the cost-saving remedy. Now, mature health
institutions, seeing that quality of care and outcomes are the
true measure of success, are realizing this mistake and rehiring
staff, decreasing dialysis ratios back to 3:1, for example, and
resolving this problem.
Calling my patients by their properly pronounced
names and titles.
There is no reason why any office staff cannot
take one or two seconds to learn the name and title of a patient.
After twenty years of practice I do not like to spend my final
years being called mister. "Take a seat, mister, we are running
late" is the most hurtful approach one can take to the doctor,
judge, politician, general, captain or clergyperson. If one does
not even care who you are, how careful are they with your tests,
your blood, or sticking you. Staff needs to realize that each
person that hands you a card is a precious human life struggling
to survive. Sensitivity and respect are everything.
How the doctor can have time for patients
There is always the struggle as a physician
of giving a patient enough time to answer all his questions and
being on time. The secret is physician extenders. It is unfortunate
that still in this state, Texas, and perhaps elsewhere, we have
not yet evolved in dialysis to fully utilize these wonderful people.
I would rate the professional care I received at MD Anderson the
highest in the world, and on par with anything I have seen in
Nephrology, and yet I have seen my oncologist only twice. Why
am I so happy even though he is not the one that takes my blood
pressure and personally tell me my new medicine dose? He spends
an hour with me each time, he sits down, and does not leave until
every answer is delivered. He is not rushed. He can practice sensible
I have dealt with his extenders every day,
sometimes twice a day - they are always there for everything -
but he is the general, the chef, definitely in charge, supervising,
but not actually performing day to day minor decisions. There
exists no reason why this positive experience cannot be duplicated
in the management of stable, healthy dialysis patients. The trade
off is that I can have much more time for the brand new patient
about to start dialysis that really needs my time, more time for
preESRD education for newcomers, or for the difficult dialysis
patient that does not cooperate, and more time for the patient
that has a significant severe problem.
I also chose to let this experience become
an eye opener for me - making me a better person. My partner and
colleague for fifteen years told me , "God just gave you
a speeding ticket."
We go through our lives in a work-sleep-work
cycle. For me it is a work-Internet-sleep-work cycle. Pretty soon
our kids are going to college, our hair is thinning. We forget
how to live. We rush through life. Why do we do this? Each is
endowed with a tremendous inability to see that we are mortal.
We think life is endless, and that someday we can retire and then
start to enjoy its full pleasures. Only when a close friend or
loved one dies do we ever think about the possibility we may also
die. But all too soon its off again to work-sleep-work-sleep.
As tragic and horrible as it is to have a bad
type of cancer, there is some good in that it serves as a reminder
that every day is precious. We accelerate the parts of life that
are enjoyable. We think about all the wonderful and fun things
that we were going to do during retirement, and do them now.
A close relative of mine developed metastatic
disease twenty years ago, underwent chemotherapy and did great.
Now, I realize why we have so many oriental trinkets in our house!!!
So, dialysis patients, friends at Anderson
and on the web, and the rest of you, find what you enjoy the most
and do it now. Do not wait to retire. There are wheelchair ramps
and dialysis machines on most cruise lines. Your history and physical
is a keystroke away from a doctor in Paris, London, or Bangkok.
You can get excellent transient dialysis in Kathmandu. It is well
worth it to have that future trip in mind when you are sitting
in the chair for four hours.
©1998 Stephen Z. Fadem, MD FACP. All rights reserved.
No part of this article can be reproduced without written permission
of the author. International copyright laws apply.
Also read One Year Later
out more about Sarcoma