Nan, how does it feel to have cancer? Are you going to die, Nana?
Questions from my 6 & 4 year old grandsons 10 days after diagnosis of
this uninvited guest in my body, “Carcinoid”. Those questions were not
far from my own thoughts upon awakening from a bowel resection May 18th,
2004. I remember hearing the words, “You have carcinoid cancer that
has spread to your liver”. WHAT IS CARCINOID? WHAT WERE MY SYMPTOMS?
As a Perianesthesia Care Unit RN, feeling fatigued came with the
territory. So did hot flashes as I had entered that glorious
menopausal time of my life…then there was constipation – too busy to wonder
why that would be…aging, not drinking enough water, and certainly working
too hard, too many early hours!
The most troublesome health issue was labile hypertension, twice after
leaving work feeling confused and having difficulty remembering where to
turn to go home. I explained this away as too many hours spent in PACU
that day, not enough sleep and not paying attention to my surroundings, then
there was the day I had a dilated fixed pupil in my left eye, blood pressure
entirely too high, taken to the hospital and diagnosed with a TIA.
These were eye openers, but little did I know what was around the corner.
May 16th, 2004, a beautiful Nebraska day, while visiting my mother, I
felt great with the exception of an acute “sickening” feeling in my lower
abdomen. This “acute” feeling was followed by large amount of blood
with stool. I assured my mother there was nothing to worry about as I
had a colonoscopy one year ago and everything was normal. Probably
just a ruptured diverticuli…I thought!
Continuing to lose blood every stop I made on my drive back to Colorado,
I decided I had best be NPO for the duration of the day and night…see what
GI dr. was on call at my surgery center and check this out! By
morning, the sun came up as always, but I had become increasingly weak, pale
(not as always) and I knew there was more going on than a ruptured
diverticuli.
Fatigue, labile hypertension, confusion, hot flashes and acute rectal
bleed…not all typical symptoms, but those were the precursor of what was to
be known to my family and me as Stage IV carcinoid, primary small intestine.
A 2 cm tumor was excised during surgery on May 18th, along with my ascending
colon, small portion small intestine & transverse colon. This was the
beginning of what I have come to realize has been the most precious journey
of my life.
Finding out what IS carcinoid, what can I do to give myself autonomy
through this process became a driving force as I found out I was not alone
in this journey. This experience is not just one with physical and
emotional highs and lows, but spiritual growth - trust with each step.
There are choices for each of us, and those choices we as carcinoid
survivors, and only we, can make for ourselves. This journey I am on
is mine – but it does not only effect me, but also those who love me.
With that in mind, I desperately wanted to find out all I could about
carcinoid and what could be done for my disease.
I chose to explore the amount of disease in my liver and if it was
resectable to go ahead with that procedure. In November, 2004 we did
just that. I say we, because it involved more than me…my husband, my
children, grandchildren and friends. Resection – successful, resecting
three larger tumors and a procedure known as radio frequency ablation of
four smaller ones. The best news of that day, awakening from
anesthesia to my beautiful youngest daughter telling me “Mom they were able
to get it all”. The rest of those recovery days are somewhat vague,
but I had the knowledge I was not alone - my husband and our most treasured
three daughters were there loving me to wellness.
Recovery, hope and TODAY…that is what I have.
Faith that I will know what to do when the next challenge is presented to
my mind, body & spirit. Hope that continual research is being done for
a cure, live for today as yet tomorrow is not mine, and courage as needed to
face the future as it comes.
August 12th, 2006 is the second annual "Run for Hope 5K" I am
coordinating with the help of family and friends. It is yet another
experience I would have never dreamed possible without having been
challenged by carcinoid. An experience that has been exhilarating &
magical in every way, seeing the very hand of God at work through others and
an event, yes running!