One year ago today, Matt and I arrived early for his radiation appointment in the hope of catching the radiation oncologist. I wanted to speak to the doctor, face-to-face, to discuss what I believed were swelling related changes in Matt’s cognition—specifically the way his reality had warped.
After radiation, a nurse put us in the same exam room in which we’d first met the doctor. When the doctor arrived shortly thereafter, I posed my questions, with examples. Matt looked on as if he had no idea what I was talking about, but he was happy to indulge his crazy wife. I acknowledged to the doctor that I may just be the crazy wife.
The radiation oncologist did not simply think I was the crazy wife. After a short cognitive exam, after asking Matt a number of questions, the doctor said he agreed there’d been a change. He noted the weekend, the two day break from radiation, could be helpful. But he didn’t think swelling was the cause. The doctor believed Matt’s cognitive change was caused by the tumor—that relentless tumor, that invisible monster that had grown claws and fangs and was no longer invisible.
That afternoon, G came home from school with a cold and complained of pain in her ears. Matt stayed home to rest while I took G to the doctor, forcing H to tag along—because I could no longer leave Matt alone with the kids. But even leaving Matt alone had become complicated. That need to be in two places.
I knew we were fast approaching a time when Matt could not be left alone. And I was terrified for how that moment would look.
He was fine on his own. He mostly napped or stared at the television screen. He hadn’t hurt himself. But he also wasn’t fine. He sometimes made questionable choices and failed to think clearly. He sometimes couldn’t be trusted alone.
Matt didn’t want a babysitter, and refused to believe he couldn’t be alone for an hour. I chose to believe him when he promised he’d be okay on his own. I chose to believe him and I left him on his own. But every moment away from the house I worried, holding my breath and hoping we hadn’t reached that tipping point in which making sure Matt was safe meant potentially stripping him of more independence and stifling his spirit. I know many caregivers walk this same tightrope, hoping to strike that perfect balance between safety and spirit.
The pediatrician confirmed G had an ear infection and we drove home, making a quick stop at the pharmacy, where they’d come to know us (our family of four) all too well. When we arrived back home, Matt was on the couch with the television on. He was fine. The tipping point hadn’t been reached.
After G, H, and Matt went to bed, I scoured the brain cancer forums for answers to wordless questions. Opening my laptop and loading the brain cancer forum for the thousandth time, I began to look into the treatments other patients were trying. I reached out to a handful of clinical trials and institutions and eventually received the same answer from everyone: Matt didn’t qualify. Either the trial was no longer recruiting or Matt didn’t fit the trial parameters.
Doors were closing on us. Doors had closed on us. But we still had our chance, our one glimmer of hope. We were only seven days into a fifteen day treatment. Eight days remained in which everything could change for the better. We’d seen upswings that fast before.
And that was enough for an ember of hope to remain ignited. One ember. One ember that could, maybe, light the way toward the miracle we needed.