Part of daily challenge is the total lack of control we have as the medical world swallows Mark up. We are waiting for tests, waiting for answers, waiting for treatments. I wait for Mark to wake up. I wait to see how much of him is going to return. Knowing Mark has cancer living in his head, it’s frustrating to wait for his body to be well enough to start chemo. I obsess over all those devilish cancer cells racing to multiply and invade new spaces. Each day without the chemo feels like we could be losing the race.
Mark was finally cleared for chemo yesterday. He had his first treatment today, the first of three days in a row on, 18 days off, that is the planned protocol. He tolerated his first treatment well. Meaning, my fiesty fighter didn’t fight it. You’d think with him having consented to brain surgery that it’d be no concern that he’d allow chemo. But Mark remains true to form and even with cognitive deficits and sleep aides, if he’s alert enough he picks and chooses what he’ll consent to. Yesterday, the nurse came in and handed him a little cup of his morning medications. “What’s this one?” he said, pointing to a small white pill. “It’s a sodium pill,” she said. “I’m not taking that one,” he said, and then took the others: anti-seizure pills, pain pills, anti-anxiety pills. Him saying yes to anything isn’t guarenteed.
To be fair, he still seems fairly confused. He often doesn’t remember one hour to the next. He doesn’t remember who came to visit him yesterday. The remote control for the TV doesn’t mean anything to him, he can’t use his cellphone, and the call button for the nurse remains a mystery.
Last year, I bought an Alexa. We didn’t have a stereo system, and I wanted a reliable way to play any music I wanted in the house. I had tried a vareity of small speakers with bluetooth and wasn’t satisfied with any of them. Mark and I often spent evenings taking turns asking Alexa to play songs. Mark loves music, and knows the lyrics to many songs across genres, starting from about 1940 and excluding most of the pop world of the 2000’s. One of the saddest moments from this past spring, as Mark plunged into sickness, was when Alexa stopped being able to understand him. His nose was permanently clogged (by tumor, we now knew), and when he was tired he slurred his words like a drunk. Now, from his hospital bed, as the equipment beeped around him day and night, Mark would call out over and over “Alexa, stop!” Alexa still wasn’t listening to him. He was patient with her. He would give up, fall alseep, wake up, try again.