MY LIFE Matters - Health Literacy - 29

CONTINUE LEARNING IN SURVIVORSHIP A Proactive Approach
the port was attached to, therefore, it was
dropping and flipping into my rib cage.
OMGOOODNess! Emotions on top of
emotions. I did my next treatment, and
the port was replaced and put into my arm.
Well, well, me listening to the oncoloThere
were several other key people in
my recovery. Thank you, Briggitte Spearmon
(my HHA), Estelle Miller (Sissy), and
Veronica Bar (Pep Team).
I must advise you of the reality of caregivers.
Some will remain throughout, and
some will fall away through the journey.
Can you be prepared? NO! Just know in the
end that organizations such as Tigerlily are
there to fill that absence, and believing in
your own positive higher power for Faith
and Strength will get you through.
Healing went well with the DMX, then
it was the BIG " O " visit! Time to see the
oncologist.
I see my first oncologist. I was just in a
blur at this point because this is one area
I truly could not research. Was it fear or
was it just the unknown of this field being
so hard to grasp. As I think about it, it was
a hit of reality! This shish is real! You ask,
well didn't the DMX do it? No, it felt like
a resolution versus a part of the phases of
treatment. As I sat with my friend/caregiver
Paris, my nerves were a wreck. As I
look back, it was the fixation of what society
projects a breast cancer/chemotherapy
patient looks like that had me zoned out.
It was a blessing my rider was there with
a notebook/paper/pen/recorder in hand
to capture every word the oncologist was
saying. I highly recommend this to everyone
if it is at all possible. I did make
a list of questions prior to this visit and
that was very useful. I truly was a dear in
headlights on this visit. Chemotherapy
will start in 21 days, three days after my
birthday and going into 2021. Ten days
after the first chemotherapy treatment, I
was issued the port. When the study was
done, the port had to be replaced. Due to
the DMX, there really wasn't much tissue
gy nurse that my hair would start to fall
out between rounds 2-3 was not facts.
Ten days post chemo, I was sitting in the
car dealership getting my car serviced. I
rubbed my head and suddenly, I felt cool.
I thought nothing of it until I got up from
the seat and looked down to find a clump
of hair. I picked it up with a tissue and
placed it in my purse. I was so ready to
go home. After getting home I looked in
the mirror and asked myself, " Who are
you? " " What defines you? " " Is this a battle
that you can win? " This phase of the
journey I was prepared for. I knew who I
was-a child of God. My values, morals,
and ethics define me. Yes, I can and will
win! What was hard about this phase is
that I set my mind up for rounds 2-3 for
the hair loss to happen, and that is what I
struggled with. As the days passed I would
video record my emotions about this phase
of the journey, and it truly helped. I even
chose a select few to share the videos with.
It was very therapeutic.
Round two came and I had to see the
oncologist first; this was not my day. My
day started at 0830 (8:30 a.m.) and did not
finish until 1645 (4:45 p.m.). I was in the
oncologist's office, and he told me that he
decided not to do any scans at the end of
my treatment, because I will know if the
cancer returns as it will hurt and more
than likely will return to my bones, lungs,
and brain. I inquired about clinical trials
and was advised none were available. Here
we go again with the overwhelming feelings:
fear, panic, I felt as if I was stabbed
again in the heart. I was just in shambles
and tears. My rider was heated to say the
least. That day the devil would continue
to be busy with adverse reactions
to chemo drugs with chemo
not ending until 1645 (4:45
p.m.) that evening. I tell
you that day alone is a
story on the true diversity
and socioeconomic
treatment that one may
experience as a Woman
of Color. Needless to say,
that was my last treatment at that facility.
I felt like if I remained, I would die there.
My care felt fast-paced, rushed, and I did
not feel connected to my medical team.
At this point, I finally get home and
I'm so tired I couldn't eat, my Sissy had
to come and get my child so I could rest.
I was so exhausted mentally that I could
not function physically. Developing some
form of relaxation tools is imperative. For
me it was my prayer closet, creating videos
just to listen/see them and journaling
throughout the day.
After a couple days of rest, I sought
out another oncologist and ended up at
MD Anderson Cancer Center in Jacksonville,
Florida. I would embark on a
new journey at MD Anderson. I would
meet my radiation oncologist there and
upon completion of that appointment, I
made the decision not to do radiation.
The percentage of benefit was 5 percent
and I would have more cons than pros if
I did it. I would meet my plastic surgeon
to discuss reconstruction as well. I completed
my last chemotherapy treatment on
April 8, 2021. Again, the importance of a
village/caregiver is so important. When
I completed my last treatment and rang
the bell, I was ALONE!
The cycle of emotions began again.
Marking that final treatment was a major
milestone and I missed having a personal
support village to cheer with me. What
should have been a moment of celebration,
I was in tears feeling alone. Therapy has
been my biggest asset and has helped me
in more ways than I can count.
Reconstruction was completed with a
DIEP (deep inferior epigastric perforators)
Flap procedure. Over the next two years,
I will have a total knee replacement, rotator
cuff surgery, and removal of a benign
pituitary tumor and pituitary gland. My
journey is far from over, but I understand
that one key part of my Survivorship
is staying on top of my diagnosis
and continuing to learn, being
an active participant in my
treatment plan and to keep
asking questions. l
Visit SOPHIA'S website at
www.Sisterssupporting.com
MY LIFE MATTERS
HEALTH LITERACY ISSUE | SUMMER 2023
29
http://www.Sisterssupporting.com
MY LIFE Matters - Health Literacy

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