I was persuaded into taking West Coast Swing dance lessons a few years ago. Despite my two left feet, I eventually “graduated” beyond the beginner level, but I admit I enjoyed the experience no matter how goofy I probably looked attempting it. However, I’ve been fortunate to be taking another type of dance lessons for almost seven years now. To tell you this story properly I have to start at the beginning -so I thank you in advance for your patience.
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, by the time I couldn’t ignore or dismiss them any further I was quite ill. In my defense my denial was wellfounded; I was only 34 years old, I never got sick— I didn’t even have a doctor. I ate correctly, exercised four to five times a week, and on weekends climbed “14ers” (Colorado has 55 peaks above 14,000 feet) or did other physical activities to make the most out of living in Colorado.
After months of waiting rooms, medical tests, consultations, a couple of bad doctors and a few hospital stays, I was diagnosed with a golf ball-sized tumor in my small intestine. The surgeon informed me that whatever it was (and it wasn’t my mother’s lost steak knife), it had to come out; so surgery was swift.
Like so many GIST patients during that time, the pathology of the tumor labeled it a leiomyosarcoma. It was “almost” benign, hadn’t spread anywhere yet, and although they weren’t sure what caused it, the oncologists told me the likelihood of a recurrence was slim to none. 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 the outdoors. A follow-up CT scan in 1999verified I was healthy.
In May of 2001, I returned to Denver from The White Rim in Canyonlands National Park— my favorite place. I attributed my complete exhaustion to the long drive and three days of biking in the Utah desert.
Two weeks later I was still exhausted. I would sleep all night, wake up, eat breakfast and sleep into the afternoon. Eventually, I realized this was more a physical issue than an attitude problem!
A CT scan revealed a football-sized tumor in my abdominal area (well no wonder that White Rim ride was so 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 (we still didn’t know it was GIST), and also due to the large size, it was basically inoperable— and they didn’t know of a way to shrink it. They added that 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 even if I did survive the surgery 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 stated 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, 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 clearplan 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 and face it with as much dignity and courage I could muster.
Anyone that is really ill needs someone to advocate for them and fortunately for me, one of my sisters, a former National Institutes of Health nursemanager, 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. Easy days meant sleeping for me while my sister researched avenues for treatment options.
A month passed.
One day, while searching online, my sister 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 or two very limited GIST trials, shrinking tumors in about half the patients. If a biopsy of my cancer proved it to be of the “stromal” type, and I met other requirements, I could apply to be accepted into the trial before the closing date only a month away.
In late August 2001, less than two weeks before the trial closed, I was accepted into the trial at Dana-Farber Cancer Institute in Boston 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 liver mets, 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.
I called these ‘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, sat or slept in one place for too long or walked too far. I was too sick to work or even do much exercise beyond walking around the block. 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.
The day finally came and I was lucky enough to be told the tumors were shrinking!
About two years passed consisting of my daily doses of Gleevec, more medical appointments for blood work, CT scans every three months, and fourmore stent surgeries. The primary tumor, located in the 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 five 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. If my cancer would have been as progressed in 1997 as it was in 2001, I would not be here to convey my story to you. I had a great amount of support from my family, friends and medical team for which I am forever grateful. I could not have done it without them, 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 dies trying— especially if they die trying— is a hero. Everyone who fights this disease, whether as a caregiver, working in the medical field, or contributing to research is a hero, since it takes all of these to win against cancer.
I still take my Gleevec each day as I have for almost nine years, keeping my fingers crossed and staying humble regarding a possible recurrence.
GIST is different than other cancers because although we’ve been given an enormous second chance, I feel, probably as many do, that I only get so far away from it, and then it’s time for another dose or another scan.
It’s a daily reminder of a dark time but also how truly fortunate I am, and to appreciate the important things in life and see the beauty in this world. I hope our paths cross while hiking a trail in a remote desert canyon, climbing a 14er or biking on a summer day.
Note: Almost five years have passed since my surgery and I am happy to report my follow-up scans have been clear, showing “No Evidence of Disease,” or NED — or from the perspective of cancer survivors — I am “dancing with Ned,” no matter how goofy I look.