Cancer Can Be a Scary Word

Cancer caught me off guard, even though it should not have.

In February of 2010,  I had a routine colonoscopy. I call it routine, but, actually, it would have been routine only for those in my situation. I had severe inflammatory bowel disease that had largely gone unchecked for ten years. It was not from a lack of trying to manage it, though. Unfortunately, my condition just did not seem to improve regardless of the medications we threw at it, or my positive lifestyle changes. Thus, because of the regular discovery of polyps and dysplasia, I was having annual colonoscopies.

As one living with inflammatory bowel disease, there were no alarming changes in my bowel habits. There was nothing about the color or consistency of stools to alert me of something more sinister, as would be the case for someone without inflammatory bowel disease. No, for me, the experience of moving my bowels was always the same. It was messy, foul, and contained mucus. Many times, it was tinged with blood. However, remember that this is my “normal.” (I apologize if you find this offensive, but I’m letting you know where I was in regards to my overall health.)

Then, my cell phone rang.

Dr. Jonathan Hansen at UNC Hospital and Chapel Hill, North Carolina, called my cell phone as I was making my way to a wound care appointment, also at UNC Hospital in Chapel Hill. My inflammatory bowel disease often caused extraintestinal manifestations of itself, creating conditions like pyoderma gangrenosum. (WARNING: If you look it up, be prepared for graphic images.) I thought it unusual that Dr. Hansen was calling me so soon after my colonoscopy.

My hunch was correct, of course. He told me that my biopsies had come back showing cancer. My mind immediately went numb. In retrospect, this was bad because I was actually driving my car with the cell phone on speaker. I think I recalled hearing that it had been caught early, but everything was otherwise a blur. The distraction of being on the phone did not last long, though, as Dr. Hansen kept things short and bittersweet. I would see him soon to fully discuss the findings.

I had…cancer?

Initially, I felt as if the news pertained to another person, not me. I focused on the increasing traffic as I got closer to the urban center of Orange County, North Carolina. My appointment went as well as can be expected when one is dealing with the care of severely ulcerated skin. I recall that they complimented me on my wound dressing, stating that I knew exactly what to do without their assistance. (I had been through a pyoderma gangrenosum before. So, as they say, “It wasn’t my first rodeo.”)

This initial reaction of distancing myself from the diagnosis was likely the first of those common experiences Kübler-Ross identified as denial. That is such a strange and messed up place to be. Yet, it is one that many of us do experience with grief. I thought I was fine even though I was experiencing those symptoms I discussed above. Remember, though, that was my normal, thanks to the inflammatory bowel disease I had been fighting from the age of sixteen.

From this point, I entered what I am going to call “cancer limbo.” This is a period of indeterminate length dependent solely upon the interim between a cancer diagnosis and the implementation of treatment. This cancer limbo bordered on hell, since my mind periodically imagined the worst-case scenario of death. However, it was then, just before I made the final descent into hell, that I’d recall that I was not facing a predetermined future. My last chapter had not yet been written, and my positive attitude, as other cancer survivors reminded me, could make a tremendous impact on my prognosis. My cancer limbo lasted from early February until the first of April in 2010.

During this same time, I could be weepy with joy over the smallest overtures of kindness, which buoyed me.  Then, I would be so angry. I’d be angry at the people who tried to give me hope, with God, and myself for not having done something to prevent this, even though I had no idea what that intangible something was.

Trust me, I was not pleasant company when so disposed. I would yell at you and justify it by saying that you weren’t facing reality. I had to be right, because more often than not, I am right. Even with cancer, I was still fundamentally the same person. 😉

Finally, with the help of good doctors, I began beating my cancer.

Dr. Timothy Sadiq performed my cancer surgery. It was not an easy task for him, either. The routine surgery became complex when my colon, as Dr. Sadiq put it, “fell apart” in his hands. As it turns out, the years of “fire” my colon had endured from the inflammation made the tissue very friable. Thus, he was unable to just take out the cancerous portion. A stoma was made from my terminal ileum (i.e. the end of the small intestine), and an ostomy appliance was fitted.

Being one who often is atypical, particularly in matters of health, I should be fairly adept at dealing with surprises. Yet, it was surprising to me that cancer was in the lymph tissue near my descending colon. You see, the cancer itself had barely penetrated the wall of the colon. My cancer was going to be stage one. No, lymph involvement bumped that stage up to three. This meant chemotherapy.

The type of chemotherapy I took was FOLFOX. I was fortunate that I did not have hair loss. Yet, I did not escape treatment completely unscathed. I developed neuropathy, which I still have, despite having concluded chemotherapy eight years ago this upcoming November. One side-effect that has gone away, praise be to God, is the type of neuropathy that inflicts the mouth. If I tried to drink something cold, it felt like I was trying to swallow a bunch of needles. For about 6 months, I had to drink beverages at room temperature, like many routinely do in Europe. That kind of saps the joy out of even drinking water. Bleh.

With chemotherapy completed, I routinely came in for blood tests and CT imaging. My oncologist, Dr. Stephen Bernard, was always upfront with me. Colon cancer has a high rate of recurrence.  So, it was on pins and needles that I awaited my results. I went from monthly visits to visits every three months. Finally, I was able to come in every six months and have only one CT scan a year. Now, I just periodically have a blood test.

I kicked colon cancer in the tush!

As of this post, I have been cancer-free for eight years. I have a much different perspective on life than I did prior to hearing that I had the “Big ‘C’.” In many respects, even though my body has continued falling apart in different ways, I’d say that my life is better. I like who I am, mentally and emotionally, now.

Cancer is a scary word, but not the worst for me to hear. This is true even when I heard that dreaded word spoken to a loved one in April of 2017. As with many other things in life the fear we have of cancer really is the fear of the unknown. Cancer is demystified when our questions are answered, and we have a clearer picture of what we are facing. It may still be a lion, but we know who has, and has never let go of, the whip.