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The day I got diagnosed with cancer, I went from “person” to “patient” — and the title has followed me ever since.
A few years ago a career opportunity prompted a big move to a new city for me and my family. It was with some trepidation that we headed into the middle of the country to start anew. After a few months of settling in and trying to put down roots, I began to notice something in my system was off. Online research suggested the symptoms I was experiencing aligned with colon cancer.
Doctors will tell you that relying on search engines for guidance is a sure way to misdiagnose and scare yourself. And after reading several resources, I sure was scared — scared enough that I stopped doing research and tried to forget about what could be wrong with me. And it was that same fear that finally drove me to take action and schedule my first colonoscopy.
I got a recommendation for a local gastroenterologist from a new friend in my new city. I made my appointment, did the prep, and arrived to meet with the doctor before the procedure. As I explained my symptoms, he told me he had seen what I was describing a million times before and it was likely nothing. So I went under anesthesia feeling generally optimistic. But when I woke up, my world changed almost instantaneously. The doctor informed me, in the middle of the waiting room, surrounded by other groggy patients, that I likely had colon cancer. While I was stunned, I was not surprised. My husband was gobsmacked.
After a day of processing my news, I called one of the leading cancer institutions in the country which was now in my backyard. Within a few days, my case had been taken on by one of their amazing surgeons. I knew how lucky I was to be seen by one of the best, but I was going to have to wait it out for a few weeks. It was mid-December and they couldn’t get me in for a CT scan until the end of the month. Then I’d have to wait another few days into the new year to meet with the surgeon for the results.
Those few weeks between suspected diagnosis and next steps were agony. I had no idea if the cancer had spread, nor did I have any understanding about what was to come. Once again, my mind raced with fear. But this time, it wasn’t hypothetical. It was Christmastime, and we had already planned a family trip which we went on. I tried to be engaged and happy about the holiday, but all I really wanted to do was crawl into bed with the covers over my head and cry.
Come that day in late December when I finally went in for my first CT scan, I turned from person into patient.
This titlehas followed me ever since. That first scan led to colon surgery, chemotherapy, a metastasis, followed by another surgery and ongoing CT scans and check-ins. I had no idea how much emotional and physical strength my cancer journey would require to get me through to the other side. From that first consult with the gastroenterologist, cancer had taken me over, not just in body but in spirit. Even when good news arrived with clear scans and declaration of NED (no evidence of disease), I found myself already worried about the next scan.
Early in my cancer journey, I was getting CT scans every three months.There’s both relief and terror in being monitored so closely and so often. Three months is a very short time period. Just when I started to relax, trying to “live” again, I’d be back in the throes of anxiety around the next scan. The pit in my stomach became perpetual. The fear of a metastasis (which came true) popped into my head whenever I had any ache or pain. My heart sank every time I thought about the re-entrance into chemotherapy. My stress showed up every moment, in every activity.
Post-chemo and post-metastasis surgery, my team and I discussed turning three-month scans into six-month scans. Despite my fear of recurrence, I agreed. If my history with this cancer is the data I need to make new decisions, then even with a longer time between check-ins, monitoring will theoretically still keep me in a zone of effective cancer management. That’s what I hang my hope on.
Moving from three-month to six-month scans has helped me significantly, albeit slowly, to reclaim my title back from “patient” to “person.” Now, I’m able to get some real time in between to live — not live like a patient, but live like I lived before cancer. Some days I actually don’t even think about cancer at all. And while I revel in feeling “normal,” I still get scared that if I’m not paying attention, that’s when cancer is going to hit again.
We’re told that the longer we’re NED from the original diagnosis, the better. But that doesn’t mean never. It never means never. But for right now, here I am. For right now, I am past the daily terror. For right now, I’m a person again. For right now.
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