December 11, 2017: Writing With Scissors

December 11, 2017 is a day I remember well. It’s a day in which my heart broke a thousand times and we (Matt and I) came so close to breaking.

Matt woke up and his legs were bothering him again. The pain was less intense, but still severe enough to warrant an early drive into the city (while listening to The Rules of Magic by Alice Hoffman) and a stop at the neuro-oncologist’s office, who the day before had told us to come by in the morning.

We arrived in the office and the receptionists were less than thrilled that the doctor had told us to come by. I didn’t blame them. They frequently double and tripled booked the doctors in the office in order to fit in all the patients who needed attention. The schedule they’d so carefully crafted left no room for our casual stop by. They could have turned us away. But they didn’t. They squeezed us in.

The doctor examined Matt, made him walk across the room, tested the strength in his legs and feet, and watched him sit and stand. She could find no obvious reason for the pain in his legs. If the pain was caused by something in the lower spine, the pain would be shooting down Matt’s legs. If the pain was caused by a blood clot, it was unlikely that both legs would experience the pain equally. She determined that the cause of the pain was likely the Dexamethasone. Steroid myopathy. We (the doctor and I) decided we’d begin a taper of the steroid after the conclusion of whole brain radiation.

The cruelty of brain cancer: the medicine that was supposed to ease his symptoms created new problems.

After thanking the doctor and the receptionists, we headed across the street to the radiation clinic. A scaffold had been put up on the sidewalk and we were forced to walk single file. I walked in front of Matt and made the mistake of looking behind me to make sure he was okay. A mistake only because it angered Matt—he didn’t want to feel helpless or feeble. He told me to stop looking backward (checking on him) or he’d kick me. I told him I was just trying to keep his pace, but I wouldn’t look backward again. I lied. I couldn’t help myself. About three seconds later, I saw him wobble from the corner of my eye and I looked back to ask if he was okay. He said he would be okay if I stopped kicking him. And suddenly we were arguing whether I’d kicked him or not.

That night, we argued again when he tried to write down a phone number with a pair of scissors and I gave him a pen. And then again when he tried to call Duke to make a dinner reservation at the lake.

Matt was so sure of his warped reality, so angry with me for disagreeing with him, that I honestly believed maybe I was wrong. For a decade, I’d trusted Matt more than myself and that habit was hard to break, even now.  One of us was wrong and maybe it was me. I couldn’t trust my own mind. I called a friend in tears and begged her to tell me whether it was possible to write with scissors. She calmed me down and confirmed my truth. I told my friend that after Matt got better, he and I would need marriage counseling to work through all the negativity churning between us.

So many, too many, of our last days were marked by anger and hurt. It’s the cruelest of all the cruel things brain cancer did.

The story of December 11th might be hard to read. It was hard to live and re-live and write. The truth is that this close to the end of the story–43 days until hope is extinguished, 54 days until February 3rd–there will be many days that are hard to read. After all, this story does not have a happy ending.

But maybe that’s okay. Maybe the only fact that matters is that December 11th didn’t break us. Maybe the only fact that matters is that we found the strength to keep going into tomorrow.

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