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needed to get him to a specialized facility that treats
more cases of his type of cancer than any other
hospital in the world. Within a few days, Gordon
would be admitted there for emergency treatment
with over 200 tumors in his bones, kidneys that
were close to failing, and cancer in over 90% of his
bone marrow. The only thing that saved him for the
two years that remained of his life was a team of
doctors who were 600 miles away from our home--
but knew his cancer from every aspect of research
and care.
TAKING THE REINS THROUGH PATIENT
ADVOCACY FROM THE MOMENT OF IMPAC
T
Your patient advocacy begins here. Things to
remember:
1) YOU ARE IN SHOCK
.
Because you're in shock, you probably have the
mental capacity of a three-year-old child. Truthfully,
even healthcare professionals who have been
diagnosed experience this same impact. You are
in no position to make big decisions, but you may
have to. Take a deep breath, dive in, and ask for
support from other resources. Do not make any
rash decisions or harsh assumptions. If you feel
overwhelmed, say so. If you need clarification, say
so. If you need questions answered, continue to ask
until you understand.
2) MAINTAIN YOUR POWER.
In medical care, the definition of helpless should be
"lacking information needed to reach a lifesaving
goal." The patient and his or her family have a say
in all decisions, right or wrong. Pay close attention,
ask for multiple recommendations and referral
options, and stay grounded. You need to know and
clearly understand your options, the side effects,
and future ramifications. Under no circumstances
should you relinquish your power--not because of
the facility, insurance companies, or even opinions
and bias from your own family and friends!
3) PREPARE WITH KNOWLEDGE.
Keep family and friends involved...they can
definitely help you sort through the mass quantity
of information that is available--especially if some
of them have medical expertise. Unless you have
a rare disease, there are many resources available
in this age of worldwide information. Seek out
advice from other patients who have gone through
treatment for the same diagnosis...there are often
support organizations dedicated to your illness
to help you from the moment of diagnosis. It's
productive to listen and learn before you decide
what is best for you.
4) IF YOUR DOCTOR ATTEMPTS TO TELL YOU
UPON DIAGNOSIS WHAT THE OUTCOME WILL
BE...
At the outset, no one knows what will happen--
good or bad. Gordon and I were originally told that
after six months of radiation, chemo, and a stem cell
transplant, he would be as good as new. It didn't
happen. Things can go wrong; things can go right.
Every patient is different. It can be very telling to
ask the doctor what they are basing that opinion
on--it certainly would have been in Gordon's case.
How many patients do they treat every year with
that same diagnosis and stage? You must be able to
rely on your doctor, but you are not stamped with
an expiration date!
5) THE DEVIL IS IN THE DETAILS.
Our first indication that we were not at the right
facility for Gordon's treatment was the lack of
organization between the different oncologists
responsible for his care. There were times when
I was the one making the suggestions. That's a
terrible feeling when you don't have a medical
degree, and one that I hope you never experience.
Even Gordon's primary oncologist didn't complete
important orders. You need to listen and take
an active role, not passive. Follow up and follow
through!