A Simple Reflection on a Year of Life with Carcinoid Cancer

Last year at this time, I was not coping very well with what life had dished out to me.

First of all, I don’t do well with medical issues–hospitals and doctors visits, needles and blood work, tests and scans.  They all creep me out. 

I try to be rational, but in the moments where the medical “professionals” are poking, prodding, “hmmmm-ing”  and deciding, I feel frightened, unprotected and powerless, none of which suits me well. 

From mid-April to mid-May, I was in a constant state of fear and worry.  I had already heard the words from the emergency room doctors, “…a tumor…another mass on your liver…”  Being neither stupid nor oblivious, I knew exactly that meant.  What I did not know was the source or its name.

On May 15th, when I met with the doctor, my fears were now named.  It was certain.

Stage IV cancer.  Carcinoid.

I had never heard of this.  But stage IV, that was a term of which I was well-aware.

In the previous two years, I’d lost two friends, ages 41 and 31, to stage IV cancers.  There were many others I’d lost and others I knew who had lost loved ones to this insidious monster called, “Cancer.”

There was also the issue of mortality. My mother had passed away less than a year before, and now, I was facing my own mortality.  I never expected to have to face it so soon. 

Stunned, I listened to the Army doctor–a successful surgeon and lieutenant colonel–explain the situation.  I asked my questions. He gave his answers and suggestions.

Extremely clinical. Matter-of-fact.  Military bearing. Reality.

And then I asked THE question:  “How long?”

I was not prepared for his answer.

“About a year, if you do nothing.  If we proceed with (his prescription), then maybe two years.”

I asked. And I got an answer that I was not ready to hear. 

I heard my mother in my head chiding me for asking too many questions. In that moment I was convinced she might be right.  I wanted to stick my head in the sand.  Ignore it. Maybe it would go away.

The following two weeks were pure horror for me.  I had the hellish task of telling everyone what I had learned.  Anticipating surgery. Preparing myself (and everyone around me) for death. Considering taking…

STOP IT!!

I am grateful that I had the insight (perhaps, it was merely a moment of “stopping” in order to step out of that place of worry) to seek out another opinion. Advice. Greater knowledge. More options.

Clinical, yet compassionate. Less matter-of-fact, open to other possibilities. Reality with promise.

“Yes, this is a stage IV cancer, and there is no cure. But I have a patient who had a liver worse than yours. She is still alive after 17 years!”

This particular doctor at the Seattle Cancer Care Alliance and his words, changed my life. He provided the “fork-in-the-road” moment for me.

The following 30 days were not very pleasant, but I began to take my life back. 

I was not only fighting cancer (which I often refer to as “Eff-Em,” short for F***ing Monster) , but I also challenged a high-ranking surgeon and one Army medical center, the insurance system, and my own internalization of the words to me that I would likely die in a year.

On June 21st, 2012 I had surgery with the specialists at the University of Washington Medical Center with the specialists and have continued to stay on the path this past year to healing–my body, my emotions, and my heart and soul.  I will face many more tests and scans, pokes and prods and, perhaps, there will be more surgeries in my future.

But I am fortunate that carcinoid cancer is a slower-growing cancer or I would have met death years ago.  I would have been unable to learn those lessons, share my stories and live the life I am living today.

I cannot ignore that there have been so many that have been instrumental in helping me get through this year with, at least, partial sanity.  I am nearly certain that I have driven them a bit crazy in my own nuttiness.

(~An excerpt from my journal this week~)

I have been LIVING with this cancer for likely 20 years. I simply did not know about it. It may have been easier not knowing. However, reality is such that I am still LIVING, even with this knowledge.

And for me to allow the fear that another person’s words incite in me to rob me of LIFE… is sheer madness.  

Here’s to more lessons, more stories and more LIVING!