By September 25, 2017, our days had lost any kind of consistency. A good night was followed by a difficult morning, which all had no bearing on the kind of afternoon we could expect. The severity of Matt’s headaches, his pain, his confusion level, and his temper fluctuated throughout the day and no particular pattern emerged to help us predict how Matt would feel at any given moment.
The only certainty: he needed relief. He could not continue living in this much pain while we waited for the bleed to resolve itself, and, more importantly, while we waited for the poliovirus to finish destroying the tumor and fortifying Matt’s immune system.
So one year ago today, we started treating the symptoms.
For the headaches: Matt was only allowed to take Extra Strength Tylenol for the pain. Most of the time, the Tylenol barely seemed to take the edge off the pain, but Duke maintained the belief that the Tylenol would work if administered every six hours (four? eight? my memory is fuzzy on the exact interval). We stuck to the schedule obediently. But as Matt continued to suffer, I couldn’t help feeling increasingly abandoned by the people into whom we’d placed all our faith.
During these September days, I was simply disappointed with Duke. I wanted them to do more than suggest Tylenol and copy-paste the things that might trigger a seizure. I wanted them to fix Matt—which maybe (probably) wasn’t fair. Glioblastoma is a complicated, cruel disease.
In retrospect, I understand the disappointment better. I wanted Duke, a leading brain cancer institution, to ask questions, to look at Matt as an individual patient and stop assuming that the headaches were caused by the hemorrhage. I wanted Duke to wonder why all of a sudden Matt was deteriorating despite the overwhelmingly positive MRIs. I wanted Duke to be the hero in our story, the white knight. Maybe I wanted too much. Maybe I was allowed to want too much.
For the neck and back pain: We’d heard of an acupuncturist who’d worked wonders for patients with other illnesses and conditions. Matt’s mom drove Matt to the initial appointment and, afterward, Matt reported that he felt some relief from the pain for a few hours. We scheduled another appointment for as soon as possible.
For the confusion: We could do nothing but hope, cling to the moments when his thinking seemed clearer, cheer the afternoons when he could participate in another conference call for work, and enjoy the conversations in which the words he meant to say were in fact the words that rolled off his tongue.
For the temper: There was little we could do to calm Matt’s temper, which had begun to surface only when the pain seemed unbearable or his frustration level peaked. All I could do was make sure G and H were processing—emotionally and mentally—all that they’d seen (the seizures) and heard (that anger).
On August 21, I wrote that when friends suggested therapy for G and H to help them process all that they’d seen and heard, I responded: not yet. I told those well-intentioned friends that we hadn’t reached the tipping point. A month later, I began to believe, maybe, we’d reached that tipping point. While Matt went to acupuncture, I met with a children’s therapist. We talked about what G and H had seen, the kind of questions they asked, and their responses to all of it. The therapist put me at ease—they were responding normally, their questions were appropriate, their lack of questions was appropriate.
After I left the therapist, I decided as long as G and H were responding appropriately to our new normal, I didn’t need to pursue any more counseling. Like before, I decided that I didn’t need to create a mountain out of a molehill, particularly if things were only getting better—which they were, I hoped, in microscopic bursts.
These days between the second and third hospital visit were challenging. Waiting for the poliovirus to cure (yes, cure) Matt was challenging. Missing Matt while staring at him was challenging (an understatement). But treating the symptoms— running from one appointment to the next, sticking to medication schedules, finding ways to provide Matt with relief, was exhausting, but not challenging.
The truth is we’d spent so many days feeling helpless, feeling useless and subject to the whims of the tumor, that any day in which we’d faced the symptoms head on felt like a victory, however minor. As I’ve said so many times before, even the smallest victory was worth celebrating.
In our year of hope, in the worst months of our year of hope, the tiniest triumphs kept our hope consistent, even when our days were not.