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 affect 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. This procedure was again repeated in August 2007 with the removal of 7 new tumors in my liver with recovery again and 4 wonderfully healthy years since!
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.
July 23rd, 2011 is the seventh annual “Run for Hope 5K” The Poudre Valley Health Foundation is coordinating with the help of many wonderful sponsors, volunteers, family and friends. This 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!
Carcinoid is not my life, just a part of my life’s experiences. The motto of our Run for Hope is “Life is a Journey, not a Guided Tour”. Even in the darkest moments of life, I will forever believe, more has been given me than ever taken away! I embrace my Carcinoid and am thankful for this opportunity to share my journey with you.