January 12, 2018: A Step Backward

Instead of writing fiction in the early hours of the morning, I Googled. I typed the words “laser ablation GBM” into Google and tried to make sense of the articles that appeared. Before the sun rose, I read everything I could find. And after reading a few of the results, I was cautiously optimistic. Laser ablation sounded like a great option and I couldn’t believe we hadn’t been offered it before. The quick summary I found led me to believe that laser ablation surgery, a procedure that used heat to destroy tumors, was precise, noninvasive (I think?), and produced fewer side effects.

Maybe I was jaded, maybe I was worn down by the medical system and losing faith in treatments that sounded too good to be true, because I knew there had to be a catch. At 5:59 a.m., I turned to a familiar forum for help. I wrote: Does anyone have experience with laser ablation for GBM? Short term and long term side effects? My husband has GBM and leptomeningeal spread. He underwent whole brain radiation and the leptomeningeal stuff is stable but the one primary tumor continues to grow and is causing a lot of symptoms. He is not a candidate for surgery, but the NO (neuro-oncologist) suggested this procedure. I’m so hopeful that this may bring him back a little.

That was the goal, the hope. To bring him back a little. Because once he was back a little, we could figure out the rest. We could, together, reach for the miracle again.

My desperate question received only one response, and the answer was the smack of reality I’d needed.

The morning had been difficult. Matt’s balance had further deteriorated; he was tipping into walls and refusing help of any kind. He despised the three-pronged cane from the medical company, and when he did remember to carry it, he couldn’t use it correctly. He often held it in his hand, letting it hover in the air rather than using it to steady his balance. After he’d needed help getting dressed that morning, everything from T-shirt to socks, I called the nurse. A bed hadn’t become available, and we (the doctor, Matt’s parents, and I) had decided we’d delay the admission if it did, but something had to be done.

Again, for what felt like the millionth time, we weighed the pros and cons of increasing Matt’s dexamethasone. The cons were many: that anger would return, the pain in his joints could return, his appetite would increase. The pros—there was only one: he might (might!) gain some stability back, which might (might!) decrease the possibility of a disastrous fall.We chose to increase the dex, which felt like a step backward, but Matt’s safety mattered more than all the rest. That afternoon, I texted a friend and said after the weekend, I’d need to look into nursing help. I’d been leaving him on his own for an hour each day while he napped—using the time to either pop into a grocery store or sneak in a run or race the kids to an activity—but suddenly even sixty minutes felt perilously dangerous.

That afternoon, H had a playdate over, a little boy whose family had just moved to town. He’d been begging for the playdate, and, like with G’s sleepover, I couldn’t say “no” anymore. He deserved normal, he shouldn’t have to stop being a kid. I didn’t know what his mother knew about Matt and I didn’t know how much I should share. (Ultimately, my worrying was for nothing—Matt slept upstairs through the entire playdate.)

I struggled with what to tell her, not because Matt’s condition was a secret (in a small town, some news travels fast), and not because it felt like a betrayal (though, it always did), but because I’d never said the words aloud, not without following them with the assurance that he’d be fine—all the doctors said so—and we had every reason to be hopeful. But I couldn’t say that, because it wasn’t true, anymore. And I didn’t know how to tell a harsh truth without trying to soften the blow. I didn’t want to put into words that our hope had shrunk to a single ember, because all that mattered was that hope was there, that the ember hadn’t stopped burning.

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