Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 21

Making Treatment Decision
AS A CAREGIVER
knew it was not necessary or helpful for
her situation. You cannot win all battles,
so choose your battles carefully, with
only one primary goal in mind-the
well-being of your loved one.
Center, which all provide good information,
but mostly will be superseded by the PDQ.
All this information makes two things
clear: We are fearfully and wonderfully
made, and there is no human on earth who
is an expert on ALL these systems. Just a few
decades ago, doctors were recommending
removing tonsils and other " vestigial organs "
routinely, because they did not know what
they know now.
SUMMARY OF HELPFUL TIPS
" If you know the enemy and know
yourself, you need not fear the
result of a hundred battles. " *
* Know thy enemy: Cancer is the enemy
of life, and you are in a battle for your
life. You, as the caregiver, need to know
your enemy, and know yourself-are
you willing to research and learn about
cancer, including new things, difficult
concepts, and scientific approaches?
Are you willing to apply your mind and
ask for help from others to know your
enemy better?
* Know what your loved one has: The
cancer, the type, the stage, and anything
else from the diagnostic tests-symptomatic
or asymptomatic, how much,
how far-all the details. This should
*The Art of War by Sun Tzu
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HODGKIN LYMPHOMA ISSUE 2021
21
be included in the test report that the
doctor provides. If you do not have it,
ask for it. The complete report-not just
the summary.
* Look it up and learn about the cancer:
In my case, it was Hodgkin's lymphoma,
stage 4.
* Read up on the biology, causes, treatment
options, and side-effects of treatments,
starting with the PDQ. You may
also want to look up PubMed review
articles.
* Figure out the most common treatment
option for that cancer and stage that is
recommended in the PDQ.
" He will win who knows when to
fight and when not to fight. " *
* Know when to push back: There are
treatment choices, medical tests that
may be necessary or unnecessary, people
and systems that make you comfortable
and uncomfortable-you should know
when to fight and when to step aside.
I remember many times when we had
gone with the medical team's recommendation,
and a few times when we
stepped in to say, NO. For example, we
said no to a procedure when Jen was in
the ICU, because, from my research, we
" The general who loses a battle
makes but few calculations
beforehand. " *
* Be prepared: Your treatment options,
your quest ions on any procedures,
side-effects, alternative options-know
them well. Discuss them with your oncologist/medical
team. Write up your list
of, tell your doctor that you have been
reading and learning about it from the
PDQ and that you have a few questions
for them. A good doctor will entertain
your questions and answer them. Read
them ahead of the meeting. Print the
papers from PubMed, have the Summary
highlighted, have your questions typed
up and print two copies, one for you and
one for your medical team. It may seem
excessive, but its not. It helps them to
review afterwards, and helps you to be
coherent and concise, not wasting your
doctor's time when they are there to treat
your loved one.
" The quality of decision is like the
well-timed swoop of a falcon which
enables it to strike and destroy its
victim. " *
* Use time wisely. It is important to use
time wisely, especially in those early
days and weeks. Read and come up with
your questions and get them answered
quickly so that you can make wise decisions
for the best outcome for your loved
one, while also making the best use of
your medical team's time. The timing
of treatments, when to get enrol led
in clinical trials, when to get fertility
options, etc., are all critical. When you
miss that window of opportunity, it is
near impossible to turn back the clock.
So, be judicious of your time, amid the
chaos and uncertainty of cancer.
Most importantly, never give up; always
have faith! l
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Elephants and Tea: Hodgkin Lymphoma Issue 2021

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