December 14, 2017: Treatment, Not Diagnosis

One year ago today, Matt was supposed to have a MRI of his lower spine at 9 a.m. The MRI had been scheduled after a handful of suspicious episodes involving Matt’s bladder and bowels that occurred while Matt was an in-patient at Kessler.

I’d been dreading that appointment. Because of what it might show, obviously. And because of the timing. I wasn’t sure how exactly I could get G and H onto the bus at 7:40 and Matt into the city for a 9 a.m. MRI. The timing just didn’t work.

Ultimately, I’d been worried about timing for nothing. The MRI was deemed unnecessary and cancelled. When we’d stopped by the doctor’s office on December 12th, the doctor had determined there was no need to put Matt through extra testing. Those suspicious incidents hadn’t occurred again. (I told the doctor about concerning behavior I noticed at home, but I admitted, as always, that I might be the crazy wife who catalogued too many details.) More relevantly, the MRI was cancelled because all the other tests he’d undergone—the thyroid biopsy, the bone marrow biopsy, the PET scan, the bone biopsy, had come back with the same result. Inconclusive.

Whatever was happening with Matt was a mystery and the doctor said it was time to focus on treatment, not diagnosis. In looking back, this decision seems crucial. It’ll be another five weeks before we find the tumor in Matt’s lower spine.

We did as the doctor ordered. On December 14th, we dutifully went to Matt’s eleventh day of whole brain radiation. I excitedly counted down the number of commutes remaining—four. Four more drives into and out of the city. The radiation oncologist told us that if  we were going to see any benefits at all from the whole brain radiation, we would begin to see those positive changes anytime between now and within a week after radiation was over. After that comment, I texted a friend and told her I thought, maybe, I was beginning to see some clarity in Matt’s cognition. Maybe it was my imagination, fueled by desperation and suggestion. Maybe simply we’d had a couple of days without that snap of anger and it was easier to breathe. But I think, maybe, something else was behind my text message.

On May 28th, I wrote that there are parts of our story that I don’t quite know how to share yet because I want to preserve Matt’s memory. Then, I’d been thinking of incidents not unlike the suspicious episodes at Kessler involving Matt’s bladder and bowels—episodes, which, I can continue to gloss over for another few weeks. But now, so close to that day when hope extinguishes, after a week of posts relating to Matt’s anger, I realize there are stories that are harder to share. It’s (maybe unsurprisingly) difficult to share stories about Matt’s anger without feeling as though I’m staining his memory.

I want only the Matt who cracked jokes, and ran a company, and thought we were the best couple ever to exist in everyone’s memory. To exist in my memory.  But I also want to tell Matt’s story, the whole truth. It’s the goal I committed to all those months ago and also the only way I know to make peace with my own dizzyingly exhausting memories, to eventually help G and H understand their own dark memories.

I simply  have to trust that anyone following along knows what I knew on these days. The anger wasn’t his. So much of Matt was gone. So much of Matt had become tumor and medication. The husband, father, son, brother, friend, had largely vanished. But not completely.

An ember of Matt remained for longer than any doctor would have guessed. In looking back, that ever glowing ember was the reason it was easier to breathe on December 14th. That ever glowing ember was the reason we held onto hope as long as we did. That ever glowing  ember—not the tumor or the doctors or the anger—is the heart of this story. That ever glowing ember is the memory worth preserving from these dark days.

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