In March 2005 I finished my six-month round of chemotherapy with FOLFOX. One way of measuring effectiveness was blood tests for carcinoembryonic antigen (CEA). It's a protein that is normally found in the blood of a developing fetus but is also produced by certain cancers, especially those in the digestive tract. A normal CEA level is below 2.5 nanograms per milliliter. Mine was around 24 when I was diagnosed, 13 after my first surgery, and less then 2 by the time I finished with FOLFOX. That was good news, suggesting that my metastatic tumors had shrunk or disappeared.
During chemotherapy I also went for scans every two months. Computerized tomography (CAT) scans looked for tumors by measuring physical structure. My CAT scan before surgery only showed the primary tumor — the other tumors throughout my abdomen were too small and flat to show up. Later scans were clear, which was good news since it meant that nothing big had grown but didn't necessarily mean that small tumors didn't remain.
I also had positron emission tomography (PET) scans which look at the metabolism of tissues. After fasting for several hours I would be injected with radioactive glucose and sit quietly for an hour. Cancer cells would be particularly hungry for glucose, so it would become concentrated in those tissues. Then I was slowly scanned through a radioactivity detector to map where the glucose had gone. High concentrations in the brain, heart, and bladder were normal. Bright spots elsewhere could be due to cancer. My PET scans were clear, meaning that my tumors were either too small to be detected or gone.
Going through treatment for cancer is of course unpleasant, but one thing that made it easier for me is the curiosity about how all the tests and treatments work. I am a scientist by education and I'm always curious about how things work, why certain things are popular, and human nature. Studying medicine through the eyes of a patient kept me interested and my abilities as a scientist kept me thinking about how barbaric some modern treatments are and how much better we could do in the future.
Chemotherapy had worn me down a bit physically, I'd lost several pounds, and I was tired of dealing with my colostomy. But in some ways I was actually feeling better than before diagnosis. I hadn't realized that I was feeling sick before since the onset was so gradual. But as surgery and chemotherapy cleared the cancer I began feeling better. And once I finished chemotherapy and recovered for a few weeks I started feeling great.
The doctors gave me two months of rest to recover from chemotherapy and let the side effects clear. I took a trip to Michigan to visit my family, attend my brother's college graduation, and celebrate my 32nd birthday. It was nice to be back, feeling better, and spending happy times with family and friends. Just six months earlier my future was grim and my relationships had gloomy undertones since it seemed that I was dying. It was a triumph to see those people again, feeling better than ever.
Still, we needed to know if there was any cancer left in my body. The surgeon who took out my primary tumor had told me that advanced colon cancer that has spread throughout the body is nearly impossible to cure. It was beyond his ability to remove the metastases, but he knew of a clinical trial at the National Institutes of Health (NIH) on a radical surgery to remove widespread abdominal tumors followed by direct application of heated chemotherapy drugs. The best hope was to shrink the tumors with chemotherapy and then go for that surgery.
Since my CEA was low and my scans were clear, the last step to check for disease was visual examination. So I checked into NIH for exploratory surgery. They sedated me, made a couple small incisions, and put a laparoscope into my belly. When I awoke I was told that, yes, there were still tumors in there. In particular there were a few on my liver and on the bottom of my diaphragm. That was somewhat bad news: colon cancer typically kills not by infiltrating the colon but by migrating to the liver, lungs, or brain. But the doctors were optimistic because the tumors were only the size of grains of rice rather than the size of quarters as seen in my first surgery.
With my otherwise good health and the assistance of chemotherapy, I was a prime candidate for the clinical trial. So I stayed in the hospital and prepared for the big surgery to hopefully get rid of the remaining cancer and cure me.