Spring, in New York, is a celebration of life like no other. Seemingly overnight, bare branches have unfurled with color: greens, pinks, yellows, and carpets of dandelions roll out for the army of robins marching everywhere, exhilarated for their time in the sun. The vivid sky bubbles out cotton-candy clouds against the striking canvas of early May; the warm, sunlit days and the late-evening shadows trick me into believing that everything will be all right after what felt like an interminable, cold, wet, and tragic winter.
We have been basking in the sun and the warmth and the reassurance of my positive scan results for several weeks, a deep exhale into a small space of reprieve. And then, a few weeks ago, I began to experience some pain again. It was not an unfamiliar feeling, the twinges and loss of range of motion slight at first, but continued to make their presence known. My body whispered “don’t make light of this.” I began to feel run-down, and woke up every morning with a tightening in my chest, followed by a resonant, hacking cough. After a few days in which rest did not alleviate any of the symptoms, back to the doctor I went, and was diagnosed with another respiratory infection, the third in as many months. My course of antibiotics was augmented with a course of steroids this time, and seemed to effectively handle the infection.
The fatigue, however, lingered, and the pain seemed to get worse. Pain in my back, stiffness, and pain in my ribs as well. This pain was familiar, and yet I didn’t know what to do. My first response was indignance: how dare my body betray me again. My scan results had been so positive, such a welcome slip of good news. I was not ready to shift back into the mental fatigue of a persistent illness. The pain continued. It would flare up, then recede, not omnipresent, but never straying for very long. At my monthly appointment, I reluctantly broached the subject with K, Dr. G’s nurse practitioner. She was not alarmed, but not dismissive, either. We discussed the possibility of progression, and couldn’t rule it out, even given my great scans only a month prior. We checked my bloodwork and tumor markers: nothing was clearly indicated there either. We discussed possible changes, shifts, new exercises, or lifestyle modifications. Nothing stood out as a cause.
The most frustrating piece is less the pain, and more the game plan: we watch and we wait. I am monitoring the pain now; it seems to have slowly ebbed back to a place of tolerance and I notice it less and less. I have started taking daily pain medication again, after several months without needing anything to get through the rigors of a day. We don’t know if the pain has been the culmination of too many weeks of pushing past my limits, of life with a toddler, of stress, or any combination of the three. But most frighteningly, we don’t know if it is a sign that my current treatment is no longer working – if I have become resistant, if my cancer has mutated and is indicating that it is more aggressive. I have absolute full faith in my medical team: if the pain begins to increase, we will work together and make a plan, including a scan, if needed. Generally, My scans occur every three months, but if the situation warrants it, my oncologist may order one sooner. However, we need to gather more information before ordering more tests. I am trying to stay patient, but I am mostly failing. I find myself crawling back into that hole I thought I had left months ago, the dark hole of fear and uncertainty. I feel fresh wounds opening, wounds that I thought had begun to close through the formations of routine and a plan and a positive scan. Normalcy. I now begin to understand the insertitude of this disease, and that understanding is frightening.
So for now, I will try to rest. We will watch, and we will wait.