Hey y'all... it's me...
Here's a little something I wrote...
Oh fatigue, how I wish it could say it’s nice to see you
again
You tempt me with your sultry softness, edges smooth as a favorite memory
You whisper to allow the darkness in under hooded eyes without thought or
consequence
Oh fatigue, do you not know what you have stolen
Moments
as sweet and simple as dripping sand through an hour glass
A rhythm of the
mundane set to the everyday sounds of the heartbeat within my home
Oh fatigue, I know the fault is not to be laid solely at
your feet
You come on the wings of the necessary burdens to heal the broken
body
A slip between the veil that holds us within this earthly life
Oh fatigue, your strength is mighty yet not as such of a
determined soul
The barter begins as a give and take between two accepting
participants
Lay your blanket over the fallen only when the white flag is
raised
Oh fatigue, do not allow your pride to swell and overtake the brave one as she knows
when she must submit
Her soul is strong, her mind is a force
She will accept
your will in order to save her existence.
I
wrote this one day while sitting outside in less than 5 minutes.
Sometimes it works that way, one word forms into two and then three and
more and the next thing I know, I have a piece of written work that
wasn't there but a few short minutes ago. I wish I could say the same
for every time I write, I think it depends on what is happening in my
world. In
this case, I was a few days into my new treatment, Affinitor / Aromasin
(A/A) and working on accepting that my chemo break was over. I have
accepted I will never feel quite the same pre MBC diagnosis, I have
accepted that all my treatments come with some form of collateral
damage, however that doesn't mean I don't mourn and grieve as my life
continues to evolve and change.
Shortly
before I began my new treatment A/A, my friend Anita and I went to
visit our friend Adrienne who recently moved near the Finger Lakes in
NY. OK, so I took a trip, not too big of a deal except the MBC setbacks I
endured this summer have knocked me a bit off my axis. I'm quite like a
scared rabbit, holding my breath a little too long, waiting for what is
going to spook me next. But something amazing happened on this trip,
something unforeseen, unimaginable for me, something that reminded me of
why my journey, my daily job of thriving is so important. I saw God's
Amazing Grace and the grace of 2 friends who stepped back, held my hand
literally, waited for me to catch my breath, didn't judge or push,
encouraged me, laughed with me, and just let me take it all in. We
climbed this gorge - I didn't even know what a gorge was - all I knew is
that Adrienne wanted to take us to see some waterfalls. I assumed we'd
drive, pull off somewhere, get out and walk to a rail and get back into
the car. Man, I was mistaken, it has a very happy ending though so
it's all good. We did drive, and get out of the car and headed toward
the sign that said "gorge path" and then we climbed up and up, so far
up, that I was pretty sure Jesus was going to meet me at the top with a
welcome basket. The girls were talking away, not breaking a sweat, and
there I was panting like a rabid dog, struggling with most steps, sweat
dripping into places that are simply not proper. The terrain was wet and
slick at times, steep at times, level at times and so high. Between my
poor vision and my cancer, I was at a major disadvantage.
And
the narrative in my head began to shift, the self loathing talk
started, the little cancer bitch jumped up and perched herself right on
my shoulder bullying me to stop. I even said at one point that I wished I
had a shirt that said "I'm blind and I have cancer, I'm not capable"!
The girls looked at me and we laughed because when I am most
uncomfortable the self deprecating jokes come flying out of my mouth
left and right but then they said "it doesn't matter, who cares what
anyone thinks, you're doing it"! It was shortly after that, I was able
to sit alone for a few minutes. I closed my eyes in prayer and asked
God to help me quiet my mind and see Him in everything around me. I
prayed for my cancer treatments to work, for my family and friends, for
my doctors and nurses. The narrative began to shift in my head and with
a quick and swift hip check, I was able to knock the cancer bitch off
my shoulder and feel the energy, the spirits, and God all around me. It
will be a memory I will carry forth with me on this journey as I was
able to feel, in that moment, that anything is possible!
I
am now almost 2 weeks into A/A and I will say this treatment is harder
than my 15 rounds on Ibrance. I think back to how scared I was when I
began this whole journey, how fearful I was of the first round of meds
and now I can look back and say to myself "if you only knew how good you
had it". It's funny how the perspective can change from holy crap this
treatment sucks to oh well that wasn't so bad after all. I have often
said each treatment will be a little harder, harsher than the last, it
is the nature of shutting down living cancer cells. Cells that are so
smart, they are able to mutate, grow and evolve to work around the
medicine that I am taking into my body, medicine that will hopefully lull
the cancer back into a dormant state of quiet peaceful sleep.
There
is an ebb and flow to living life with MBC. I'm currently flowing with
finding a new rhythm on the A/A and continually working on the
narrative in my head, my job at thriving and finding balance of life and
living. So many friends have stepped in to help me work through this
transition. Renee will just pop over to chat and hang, Tammy scooped me
up for a little ice cream break, Eileen and Vickie moved their night
hanging out over here, Liz and Mary are always checking on me; these little acts
of love and distraction are what makes the dark and scary times somewhat easier to handle. I know it seems silly but it makes a huge difference
in a very unsettled life.
I
try my best to blend in, be one of the gals, like everyone else but
there will always be a
distinction. Sometimes I feel like the picture,
which one does not fit... but that is in my head, that is the narrative
I'm working on. I think it is because I live the daily grind,
sometimes I wish there was a documentary of this journey, showing all
sides, the give and take, the pep talks I mutter to myself, the constant
negotiations, the trials, the triumphs and the failures. It is not for
pity or victim status that I want this, I simply want people to
understand more of what it takes out of a person who is on a struggling,
up hill journey, any journey. If I need to attend an event in the
evening, I have to rest for hours beforehand. If I have a long day of
appointments, then my day will be cut short in the end. It takes a lot
of smoke and mirrors magic to pull myself together but when I do, I can
say I feel almost like my old self again.
This
A/A gives me a thick blanket of fatigue most days, it keeps me guessing
because it can show up at any given time. My skin is dry, I am winded
easily and sometimes making the bed tires me out. The hardest times are
in the dark, the late night hours when I can't sleep, I might be
scratching my skin off or simply uncomfortable with fever and pain. At
those times, when my spirit is weak, I have to dig the deepest. I allow
myself to feel all of it, I let the tears flow and just cry. I cry for
what I have lost, what I will lose and for no longer being like
everyone else. I cry because I am still sleeping when my son leaves for
school, I cry because I have to have "the talk" with teachers, coaches,
and his counselors reminding them of what my son sees and faces each
day. I cry for my girls whom I miss so much. I often say to John, I
just want to be that person I was, the one who danced on a table, drank
too much wine, and wore skinny jeans. Just one night, I want to dance
on a table again and forget all about not blending in.
All
the while, I will renew, re focus, rest, and re gain my rhythm to this
MBC dance in good time. Each morning, I remind myself of that feeling I
had when I was sitting in the gorge, anything is possible! My body
will adjust and adapt to the A/A and my doctors and nurses will help me
balance the side effects in order for me to have a quality of life that
allows me to feel as if I can still Thrive. And Thrive I will my
friends, because what other choice do I have, but to whisper back to the
cancer bitch "it's not your time to shine, it's mine"!
Peace ✌
