MY LIFE Matters - Advocacy in Action - 19

THE IMPORTANCE OF ACTION Use Your Voice
tions, meals, bathing, whispered conversations
with doctors and nurses, comforting,
prayer, wiping of tears, the gentle stroking
of a head or hand, all done with great care
and with pure love. The outcomes were not
often good. It was the late 70s and early 80s,
a time when options were essentially limited
to poorly tolerated chemotherapy cocktails,
radiation, or hospice care. In our family,
as soon as you could carry a glass of water
without spilling more than half of it, you,
too became a part of that loving care that is at
the heart of advocacy. I have now witnessed
and walked alongside four generations of
our family on their cancer journeys. Those
seeds planted nearly half a century ago blossomed
into a tenacious love for patients with
cancer and life-long careers as advocates in
oncology nursing for both my sister, Patricia
Washington, PhD, RN, OCN, and me.
While moving throughout this 27-year
career in oncology nursing and education,
cancer never stopped frequently rearing
its ugly head on both sides of my family-once
affecting three generations at
the same time. At one point, my husband
and I returned to our native East Texas
and resumed clinical practice to become
caregivers for my own Father as he battled
metastatic colon cancer and his Father
who was enduring severe complications
of chronic illness. Jonathan, a general
surgeon, often had the daunting task of
delivering difficult diagnoses to good people,
managing them as a clinician, and now
was thrust into the challenges of being a
caregiver at home to not only one, but two
parents going through a health crises. My
Father, Gene Washington, was treated on
a clinical trial at our nearest NCCN Cancer
Center, which was over two hundred
miles away from home as well as a clinical
trial while under hospice care. My Mother
literally went into shock and denial-they
had been married for 49 years. Daddy
needed caregivers at his home as well as
when he was in Houston receiving treatment.
My sister housed Daddy, Mom, and
me, providing loving care on that end as
we made those long trips for nearly a year
for clinical trials, treatment, hospice, and
through the end of his journey. Since that
time, cancer has continued to present itself
in an unprecedented number of family
members, close friends, co-workers, and
church members. There is always a place
nearby for advocacy to be put into action.
As a community-based volunteer patient
advocate/navigator, phone calls
come many times a week from nonprofit
advocacy groups, churches, friends, and
families with referrals to speak with a patient
or family member of someone who
is diagnosed with cancer. They often don't
know where to start in the " overwhelm " of
diagnosis. Sometimes they have a pathology
report confirming cancer but can't
see a physician for weeks or even months.
Perhaps they are uninsured/underinsured
or don't know where to go or cannot get
into an oncologist without benefits. Maybe
they have been offered a clinical trial or
would like to participate in one and just
don't know what to do. There are certainly
advantages to intimately understanding
cancer from all sides of the " proverbial
desk. " I can empathetically approach the
physical, emotional, financial, and logistic
challenges of cancer care from various angles
that have given me a uniquely objective
view of the patient/caregiver position and
the skills to creatively navigate the system.
The scenarios presented to me are highly
varied, but one thing I know is that the
person on the other end of the line is in
need of compassionate guidance, support,
and education for themselves, the patient,
and their caregivers.
CAREGIVER
=
ADVOCACY
=
ACTION
Of the many advocacy roles I've
assumed, that of caregiver is certainly
the most crucial to the daily physical and
emotional well-being of the patient. The
caregiver is essential to meet the day-today
needs of a patient. Caregiver roles
and responsibilities can change and vary
widely through a patient's cancer journey.
Additionally, the personal needs and
duties of the caregiver themselves must
still be met.
Whether diagnosed with early or latestage
disease, hearing or reading that one
has CANCER can bring about feelings of
vulnerability, fear, disbelief, and fatalism.
Most people think that fight or flight is the
first response to such a formidable stressor.
The truth is that FREEZE can be the
initial response-true immobilization for
both the patient and primary caregiver(s).
Once the initial cancer diagnosis is
made, there is usually a flurry of activity
that NEEDS to occur, whether the patient
or their caregivers are ready to act or not.
REGENIA WASHINGTON-REDMON RESIDES IN HOUSTON, TEXAS, WITH HER HUSBAND, JONATHAN
REDMON, AND DAUGHTER REAGAN HARPER. OUTSIDE OF HER ADVOCACY WORK, SHE ENJOYS
ORGANIC GARDENING, SCUBA DIVING, CRAFTING WITH HER KINDERGARTENER, AND " RELAXIN'
AND REFUGIN' " WITH HER FAMILY AT HER CHILDHOOD HOME IN THE BEAUTIFUL PINEY
WOODS OF NORTHEAST TEXAS.
" From serving as a professional student nurse extern at MD Anderson Cancer Center while attending Texas Woman's University
College of Nursing for my BSN, working as a bedside registered nurse with head and neck cancer patients, to completing my Masters
of Science in Nursing as a family nurse practitioner, there was no place I would or could work that didn't allow me to serve
cancer patients. I have been blessed to work as a nurse practitioner at The University of Texas MD Anderson Cancer Center and
served as an oncology clinical nurse educator, trainer, salesperson, and medical science liaison for various biotechnology companies,
all with paradigm shifting therapies or diagnostics for cancer patients. No matter the product or company name, it is with great
pride I can say that the patient has always remained my north star. Working within various capacities in these companies afforded me
opportunities to exponentially impact more patients than I could ever personally reach in a clinical setting. I have an in-depth understanding
of the intricacies of the ever-changing cancer treatment landscape from the provider, payer, pharma, patient, and caregiver perspective.
I've been able to have the flexibility to do what I enjoy most-navigating and advocating for patients throughout the oncology community. "
MY LIFE MATTERS
ADVOCACY IN ACTION | FALL 2023
19

MY LIFE Matters - Advocacy in Action

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