Later this year, I’ll celebrate nine years of being a cancer survivor. Soon after I finished chemotherapy back in 2005, I wrote my story, “Poster Woman: My Journey with Cancer.” What follows is a significantly abbreviated version. I call myself “poster woman” because I am proof that colorectal screening works. If you’re over 50 and haven’t had a colonoscopy yet, please schedule one now. It might save your life!
For two years, during my annual gyn checkup, the nurse practitioner bugged me to have a colonoscopy. Frankly, I was a little irritated by her passion, but to avoid the lecture at my next appointment, I finally had one in July 2004. The surgeon found a polyp in an awkward spot where he couldn’t remove it easily. In August I had another procedure—this time a rigid sigmoidoscopy—and again the surgeon couldn’t remove the polyp. When lab results showed the polyp was “suspicious for malignancy,” he immediately recommended major abdominal surgery with a recovery time of 6-8 weeks. A second opinion by Larry Sollenberger, a colorectal surgeon, confirmed the first surgeon’s recommendation, and all of a sudden I was facing major surgery at the end of September.
About a week after surgery, my daughter Dana who was visiting for a few days drove me to my first post-operative appointment. I went in alone to see Larry, thinking everything was fine. I was definitely not expecting his next words, “Surgically, everything looks great, but you have cancer.” I was stunned. I knew it was possible, of course, but I had convinced myself that the chances of my having cancer were slim. Worse, the cancer was not only confined to my colon but had spread to one of the five lymph nodes he had removed along with the eight inches of colon. Here I was, a healthy woman of 56, rarely sick, joining the ranks of cancer patients. This was NOT what I planned for my life.
Within the next week, Dale and I met with Dr. Leal, the oncologist recommended by Larry, who outlined three choices for treatment based on the latest research: do nothing, hoping that the surgery had removed all the cancer (50-50 chance of that); take the “gold standard” course of chemotherapy; or, go with a newer chemo regimen that added a new drug and five percentage points to the odds of being pronounced cured within five years. It seemed like a no-brainer to choose the third option.
The regimen was 12 chemotherapy treatments over a six-month period, with drugs being administered every two weeks for three days. I went to Dr. Leal’s office on Wednesday mornings where the first drugs were administered by IV into my mediport, and then I was hooked up to a “fanny pack” pump to dispense an additional drug for the next 48 hours. I went to the office again on Thursday mornings for more IV drugs, and then on Friday afternoon the pump was removed. Twice my treatment was interrupted because my white blood cell count was too low, so in mid-January, Dr. Leal prescribed Neulasta, an obscenely expensive drug that helps prevent infection and replenish white blood cells. The drug worked and I never missed another treatment.
By the time I was unhooked from the pump on Friday afternoons, I felt lousy. The days after a treatment were “lost weekends.” I slept 12-hour nights, got up for 2-4 hours, and then went to bed again for another nap. Chemo-induced fatigue was like nothing I experienced before or since; it was qualitatively different from run-of-the-mill being tired. I felt like a fog descended and enveloped me, causing me to move in slow motion; as the fog lifted I began to feel better. While I was in the fog, I was extremely tired, food didn’t taste right, and I was nauseous or queasy without actually ever throwing up; I had no energy or desire to do or care about anything much beyond getting through it; my lips, mouth and tongue were sore; and so on. I went back to work each Monday still feeling lousy, and forced myself to go through the motions of my job. By Wednesday, I began feeling like a human being again, and then I had several days of relative normalcy before the cycle started again.
Some people wondered why I didn’t take a leave of absence from work for the duration of chemo. My reasons, beyond stubbornly refusing to let this disrupt my life too much, were simple. I was trying to safeguard my sick days so I would still have a chunk left at the end, and I had already used up several weeks worth for surgery and recovery. And what would I have done during all that time at home, especially for the time between treatments when I felt relatively well?
The biggest non-cancer-related event during treatment was the final decline and death of my mother in February 2005. She died never knowing I had cancer. I had told her about my colonoscopy and the fact that I needed to have another procedure, but I never told her about the surgery, cancer diagnosis or treatment. I knew that even though she was often confused, she likely would have worried a lot—and I didn’t want that. We scheduled the funeral for the Friday right after a treatment, and I was still hooked to the pump for the visitation, funeral and burial. Afterwards, I promptly went home to bed, exhausted not only from all the emotion surrounding Mom’s death and funeral, but also from the chemo fatigue that had kicked in by then.
After chemotherapy was over in May 2005 and the drugs slowly worked themselves out of my system, I thought my life would easily get back to normal. Physically, I soon felt like myself. Over the summer and into the fall, however, as I anticipated the one-year follow-up colonoscopy, I began to collapse emotionally and went into a full-blown depressive episode. The fear and uncertainty related to the upcoming colonoscopy were enough to deal with, but I was also still grieving my mother’s death and experiencing serious anxiety. I felt like I was always on the verge of tears, and relatively small things would set me off. It was like I had held myself together during surgery, recovery, diagnosis, and treatment, only to collapse at the end when it was all over. Almost immediately after a squeaky clean colonoscopy, I began to feel better. Within weeks, Dale was saying I was a different person. I attribute the change not only to the clean bill of health, but also to good anti-depressant medication and God’s work of grace in my life.
I learned that a cancer diagnosis changes one’s life and perspective forever. I struggled with the tension between needing to be honest about the trauma that a cancer diagnosis brings and feeling the pressure to be positive and upbeat. I felt the tension keenly, even to the point of feeling anxious and guilty when I couldn’t muster up the requisite optimism. Fortunately, I had a therapist who gave me a safe venue for processing my thoughts and feelings. She encouraged me to let myself feel whatever I felt, whether or not it was positive. She gave me permission to cry and grieve the loss of my health, and helped me process having “cancer survivor” as another aspect of my identity. I also received a lot of practical and emotional support from family, friends and co-workers. I had an e-mail list to which I sent updates after each treatment. Friends and family members passed along prayer requests to their small groups and their friends’ small groups, and I heard about people I didn’t know who were praying for me. I had never before been the recipient of such love and care and concern from so many people. It was a humbling experience.
Postscript: At the five-year mark in September 2010, my oncologist declared me “cured.” I’m now on the “three-year plan” for colonoscopies, with the next one due at the 10-year mark in 2014. Right after my diagnosis, I thought I would never again get through a day without thinking about being a cancer survivor, but actually, I don’t think about it as often as I used to. Every time I approach another colonoscopy, however, the old anxiety creeps in again and then quickly subsides when I get those nice clean pictures of my colon. Good health is a wonderful gift I no longer take for granted.