Personal Stories

Janet

“One October day that seemed routine, changed the path of our lives. Janet had an appointment for a colonoscopy, and we sat in the waiting room discussing our plans for the day and shopping needed for dinner that night. After she had gone in for the procedure, I went to a nearby store to shop until she was scheduled to be finished. While on the way back to the clinic, I received a call stating that the doctor wanted to talk to me. I went to the recovery room, which was unoccupied, and I noticed that the colonoscopy report had been placed on the table near the bed. I looked at pictures of Janet’s colon in the report and knew immediately that something was wrong; the rectal region featured an ugly lesion of yellow tissue surrounded by inflammation. In a few minutes the physician’s assistant wheeled Janet into the room and confirmed my worst fear: probable cancer. Confirmation through biopsy would arrive within two days. Suddenly we realized that our lives would focus on treatment and recovery. We knew very little of the processes we would experience, and we were full of uncertainty and dread. I knew then that Janet would need as much emotional and physical support as I could provide.”

My husband, Dallas, wrote this account of my initial diagnosis of stage II rectal cancer in October 2006, when I was 63 years old. Our lives were turned upside down. I immediately started on six weeks of radiation and chemo (xeloda/oxaliplatin). Then, following a short rest, I underwent resection surgery, with a temporary ileostomy. There was no cancer found at time of surgery and no node involvement. Based on the oncologist’s recommendation, however, I chose to have additional chemo as a precaution (5FU/leucovorin), but after six weeks, I was too weak to continue. After resting, I started another course of xeloda.

The ileostomy was reversed in August 2007, and I then started the slow process of retraining my bowels. I did develop what the doctors think is a micro-leak, which has resulted in a small infected/inflamed area, although there is no definite confirmation. The doctors are now willing to let me "wait and see" on this infection. If there is a leak, it is very small, and no one thinks I am in any danger. The infection seems to be almost completely walled off.

I had a biopsy/aspiration of the area in September 2009. The good news is that there is no sign of cancer, but there was still some E. coli infection. The radiologists were encouraging, and said that the infection was smaller now than in a previous CT scan, and that a lot of people "live" with these things and have no problems. I did a round of antibiotics (almost four weeks, starting with cipro/flagyl and then switching to avelox), which was pretty rough on the digestive system.

To date, I am still having digestive problems, but there has been real improvement. Most importantly, I am learning to live with this “new normal,” and I'm happy just to be alive. At age 67, I am “NED” and thankful for every day. The real story here is the emotional journey that my cancer took me on – and it’s still continuing! Besides learning to navigate the complex medical system, including the need to always ask questions and get second or even third opinions, I developed a whole new way of looking at the world. The importance of my family and friends came into sharp focus; I could never have made it though this difficult experience without their absolute love and support. My grandchildren were and are a constant source of joy!

I am one of many who avoided the colonoscopy screening. I was busy caring for my aging father who lived in another state, I was still working full-time, and I was just plain turned off by the idea of having a colonoscopy. Even when my father was diagnosed with colon cancer just before he died of other causes at age 85, I thought I was too young to have colorectal cancer and ignored the symptoms that I had been having. Finally, I knew that something was seriously wrong, and I scheduled my screening that set off this journey. My first-hand experience has made me anxious to support the fight against colorectal cancer by becoming more involved in education and other support activities. By encouraging early detection, I have influenced family, friends, co-workers and others to have routine screening and to heed any warning signs. Now we know that our kind of cancer can strike anyone at any time, regardless of family background or age. Let’s get the word out!

I didn’t discover the Colon Cancer Alliance, My CCA Support, and the Buddy Program until after my ileostomy reversal, when I was struggling to regain normal bowel function. With the exception of one marvelous nurse practitioner, the doctors didn’t provide much help or information on what to expect after the medical treatment was complete. With great relief, I found that there were many others who were going through this same experience. I wasn’t alone! The information and support that I found on these web sites gave me great hope, inspiration, and encouragement – and the knowledge that being “NED” doesn’t mean that you are back to your normal self. In fact, for many of us survivorship is a chronic “disease” – and one that we can LIVE with. There are months and years of monitoring and tests – and always the fear in the back of your mind that maybe they’ll find something the next time – but being able to share those concerns with others certainly lightens the load.

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