My days seem to go by in a strange blur these days. Often, I find myself not knowing what day of the week, or the month, it is. This isn’t a cognitive defect, but the artificial ebb and flow created by ongoing illness, driven by medication schedules, changing treatment plans, symptoms, side effects, sleeping at odd hours, and a general weariness with one’s world – a world that feels as if it’s rapidly shrinking. My time often feels like a cluster of clouds in which I grasp for the concrete elements in my life and try to take hold of them, or something, anything, really, but come away with nothing but the woozy feeling that I am watching the world go by wrapped in a thin layer of gauze, patched together, moving forward, in ways that I am not.
I’ve received some good news recently: the brain and spine MRIs from the proton radiation show stability and improvement in places. Some of my lab numbers have decreased (although not all of them, and my cerebral spinal fluid numbers still remain high), and I am fairly asymptomatic (the facial numbness has subsided), but still very, very fatigued. In addition, we have found an appropriate cocktail of medications to address my nausea and vomiting, which is a tremendous relief for me. My liver feels less swollen, and doesn’t hurt the way it did, either, all of which are positive things. Unfortunately, it hasn’t all been positive, as my body has struggled after chemo to rebuild my platelet counts (and occasionally, my neutrophils as well), so our current puzzle is to find an effective chemotherapy regimen that isn’t going to also make me sick. We have been spending nearly every day over the past few weeks (essentially since the new year) going back and forth from the hospital for bloodwork, fluids, scans, appointments, attempts at administering chemo, getting sent home after not getting chemo, occasionally getting chemo, and the like. The days have been long: gauzy days that end in exhaustion, frustration, and a reminder to put one foot in front of the other. Interminable days sometimes, but still, days that I have to keep, to check off, to put into the pocket of my life that, regardless of their content, no one can take from me.