A day in the life of a Survivor

"From the time of discovery and for the balance of life, an individual diagnosed with cancer is a survivor"

The NCCS (National Coalition for Cancer Survivorship) put forth this definition of 'survivor' in 1986. A time when cancer was a disease people needed to learn to fight. All my hopes, expectations, attitudes and actions didn't change the fact that I became a cancer patient. What I have been able to do, from the moment of diagnosis on, has been to take steps to make my life the best it could possibly be under the circumstances. I was... I am... thankful for this term, survivor, that kept me from ever feeling like a victim...the most commonly used term for people with cancer. Labels speak volumes about who we are and how we see ourselves. Surviving for me is about embracing your life ... no matter the circumstances ... and finding some happiness today while hoping for a better tomorrow.

Carcinoid is rare -- and nobody -- not even the experts, really understand it. The medical mystery behind this zebra has yet to be solved. This past month in addition to increased pain and my usual nausea,  night sweats, day sweats, and extreme fatigue, I am having severe headaches and dizziness. Bending over to put a dish in the dishwasher can be hazardous ... I almost fell in! For now, it seems, these are just symptoms of Carcinoid that I will continue to face. Carcinoid scatters throughout organs like the esophagus, stomach, pancreas, intestines, liver, and lungs. It also causes valvular disease in the heart. At my last echocardiogram, all four of my heart valves have been affected. 1/3 of carcinoid deaths are a result of the failure of these valves. Reportedly food moves through the carcinoid patient 2-6 times faster than normal. Resulting in malabsorption and electrolyte imbalances. The dizziness is, no doubt, related to those imbalances. 

 "You look great"... I've heard this expression many times and I am just not sure how to respond. The thing is, pain for the most part is invisible, until it causes our facial features to contort, and our eyes and bodies grow weak from exhaustion. The truth is, every day activities have become mini battles. Little things that used to be non-issues are now my nemesis. Sleeping with a towel to soak up the sweat, scarfing down nausea pills, having to stop and rest---alot, little whimpers of pain that squeak out. Truth is ... I'm tired. But I am not defeated. Marvin Sapp has a song and the lyrics really spoke to me. I'd like to share them with all of you.

So glad I made it,

I made it through

In spite of the storm and rain, heartache and pain

I'm still alive declaring you

So if you see me cry

It's just a sign that I

am still alive.

In spite of calamity

He still has a plan for me

 it's working for my good and

 it's building my testimony.

I realize that this post may actually be gloomy. I would be dishonest though if I didn't share this part of the journey too. There are times when it's just hard to think positive. I'd like to be a  strong advocate for sick people. I'd like to always have the "right" attitude, but I don't. So on that note, to anyone working in the medical field who can make a difference. Uncomfortable, long waits in uncomfortable chairs, laying on a piece of paper, on a hard examining table wearing a paper gown is not therapeutic. The fact is, waiting rooms and doctors offices need interior decorators and entertainers.