In 1997 I began to experience extreme fatigue, headaches and anemia. These symptoms had come so gradually, and coupled with my strong ability to deny things I don’t want to deal with, that by the time they had to be acknowledged I was quite ill. In my defense my denial was well founded; I was only 34 years old, I never got sick -I didn’t even have a doctor. I ate correctly, exercised 4-5 times/week, and on weekends climbed 14ers or did other physical activities to make the most out of living in Colorado. After months of medical tests, waiting rooms, consultations, and a few hospital stays, I was diagnosed with a golf ball-sized tumor in my small intestine. Surgery was swift since it had to come out.

The pathology of the tumor showed it to be a rare type called a leiomyosarcoma. It was “almost” benign, hadn’t spread anywhere, and although they weren’t sure what caused it the oncologists told me the likelihood of a recurrence was slim to none -all music to my ears. In fact, a person having just been diagnosed with cancer pretty much couldn’t have gotten better news. Healing was painful but in just a couple weeks I was on my feet again, and in time back in the gym and being active. A follow-up CT scan in 1999 verified I was healthy.

In May of 2001, I returned to Denver from a trip on the White Rim in Canyonlands National Park. I attributed my complete exhaustion to the long drive and three days of biking in the Utah desert. Two weeks later I was still completely exhausted. Eventually a CT scan revealed a football-sized tumor in my abdominal area (–well no wonder that White Rim ride was sooo hard!) coupled with two metastatic tumors on my liver. By the grave look on the oncologists’ faces I could tell things were bad, and that “thing” was me. The doctors said due to the size and location chemotherapy would not work in this situation, and also due to the large size, it was basically inoperable -and they didn’t know of a way to shrink it. They added performing surgery now would be so damaging to me (as they would have to remove so much of “me” to obtain clear margins around the cancer) that I would “not have much of a quality of life.” They hadn’t said the dreaded “You need to get your affairs in order” but that I only had a couple of months left to do something about “it” or “it” would be “too progressed.” So this time, having just been diagnosed again with cancer, I pretty much couldn’t have gotten any worse news. As you can imagine, hearing all of this was devastating. This was the worst situation to be in -each day the cancer was progressing inside me while I was getting weaker, and I had no clear plan of how to begin to fight it let alone conquer it, and neither did the experts. This was my darkest hour, but I also thought it could be my finest hour, so I would cry alone in my bedroom at night but afterwards collect myself, and vow to be brave, persevere, and accept whatever the future would bring.

Anyone that is really ill needs someone to advocate for them and fortunately for me one of my sisters, a former nurse, had offered to do so. By now, the tumor had become so large it was restricting my kidneys so stents (not so flexible plastic tubing) were placed in my ureters to keep them open and draining properly. We divided the days into “hard days” and “easy days.” Hard days consisted of waiting rooms, filling out medical history and consent forms and appointments, while easy days meant sleeping for me while my sister researched avenues for treatment options. A month passed. One day while searching online she found a posting for a clinical trial for an experimental drug called Gleevec. Gleevec had shown promise in patients with certain types of leukemia and in one previous, very limited GI Stromal Tumor, or GIST, trial, shrinking tumors in about half the patients. If a biopsy of my cancer proved it to be of the “Stromal” type, and I met many other requirements, I could apply to be accepted into the trial before the closing date only a month away. In August of 2001, less than two weeks before the trial closed, I was accepted and began taking eight orange 100 mg capsules each day of Gleevec.

Three months would pass before I would know, by CT scan, whether Gleevec was shrinking my tumor and stabilizing my livermets, or not working at all and the cancer was actually progressing. There was also a chance of side effects so severe that I would have to be taken off of it. It needed to work –but not work too well. These were ‘The Dog Days of Gleevec’ because each day consisted of me sleeping 16-18 hours interspersed with flu-like side effects of nausea, upset stomach, soreness and fatigue. The stents caused back pain and bleeding if I stood or sat in one place for too long, or even walked. I was too sick to work or even do much exercise beyond walking around the block if I even went that far. I had weekly blood tests and consults with my oncologists, more than I can even recall. I’d lie on my bed and read or listen to music. I meditated and thought about the battle going on inside of me, hoping for the best and mentally forcing the cancer out of me. I wished I was healthy enough to go for a hike in a red-walled canyon, climb a mountain or take a simple bike ride. I couldn’t believe my life had come to this but I felt a slight relief because at least I now had a path to follow, albeit the only one available, and a tool or weapon to use against the disease.

Cancer patients refer to the anxiety before a CT scan as scanxiety, and they always have some degree of it beforehand. The CT itself consists of drinking about 3⁄4 gallon of a non-digestible iodine-based Kool-Aid contrast over 1.5 hours. An IV is placed in the arm for an injection of saline, which causes the strange side effects of a metallic taste in your mouth and a warming sensation in your crotch. The actual scan only takes about 5 minutes to complete. The anxiety isn’t over the scan but, of course, the results, and it can take a few days for the radiologist to analyze the images and convey these to the oncologist. Needless to say a patient doesn’t sleep well during this time. The day finally came and I was lucky enough to be told the tumors were shrinking!

About two years passed consisting of my daily dose of Gleevec, more medical appointments for bloodwork, CT scans every three months, and four more stent surgeries (the stent lifespan is only 3-4 months before they can clog and need replacing). The primary tumor, located in the very center of my pelvis, eventually shrunk to the size of a baseball. The stents finally came out for good and one day my oncologist recommended surgery. In June 2003, after 5 hours in surgery, an excellent surgeon removed all of my cancer.

Since that time, I have wondered why I survived while others who fought just as hard, or harder, died. I had a great amount of support from my family, friends and medical team for which I am forever grateful, but mostly I believe I was just lucky. People often want to label survivors of a traumatic ordeal as a “hero.” What I know is that anyone who has cancer and is brave enough to fight it, whether they are lucky enough to live, or die trying, even especially die trying, is a hero –and everyone who helps to fight cancer, whether as a caregiver, working in the medical field, or contributing to cancer research is a HERO, since it takes ALL of these components to fight and win against cancer.

Amazing progress is being made in cancer research and new drugs are coming out each year. If my cancer would have been as progressed in 1997 as it was in 2001, I truly would not be here to convey my story to you –in just four years that is how much progress was made with just one type of cancer! Incidentally, due to the positive results of the clinical trial I am part of, in May 2002 Gleevec received the fastest approval of any drug in USFDA history.

I am finally healthy again, so our paths may well cross while hiking a popular trail along the Front Range or climbing a 14er. Almost two years have passed since my surgery and I am happy to report my follow-up CT scans have been clear, showing ‘No Evidence of Disease,’ or NED -or as referred to from the perspective of cancer survivors -I am “Dancing with Ned.”

I hope my story will inspire you to pledge to contribute this year to the Relay For Life. Literally, every contribution to cancer research brings us closer each day to discovering new cures. Your support is vital in making this a reality.

If you would like to learn more about GIST please visit www.liferaftgroup.com