January 17, 2018: Too Many Unknowns

G and H had a snow day on January 17, 2018. A school delay had been called the night before, and by sunrise, that delay had turned into a complete cancellation. Which was incredibly inconvenient on a normal day, and the 17th was far from a normal day. I couldn’t stay home and busy myself baking brownies and mixing slime with G and H. That need assessment—who needed me more. I needed to be with Matt, at Columbia, where the conversation with the neurosurgeon was ever evolving. By eight in the morning, the nurse had already called to tell me the neurosurgeon was looking to speak with me. As I had so many times already, I recruited family and friends to help with G and H so I could be with Matt.

I remember this drive into the city. The roads were mostly clear of snow, but visibility was terrible. Thick snow swirls made seeing anything besides the taillights of the car in front of me impossible. I was lucky, I think, that the roads were mostly empty. Because my thoughts were not on the road and the weather conditions. My thoughts instead remained where they were the night before: surgery or no?

Once, the decision might have been easy. Of course we’d do the surgery; of course we’d be as aggressive as possible and race down the path that offered the most hope. And, indeed, that was what Matt wanted to do. “Sure, let’s do it.” Those were his words. Evidence of his unwavering and unfaltering hope and determination.

But, I couldn’t say sure, let’s do it, as easily as Matt could. Because I knew there were too many factors, too many what if questions that I simply could not ignore.

In the letter I wrote to Matt on January 17th, I explained the maelstrom of emotions like this: You and I always rushed into decisions. Our first house. Our second house. When to have the first baby, then the second. We’d work each other up into this frenzy. Like, if we didn’t act right now, the window of opportunity would close. I have a decision to make now. We have a decision to make. You and me and your parents. Surgery or not–a limited resection to take out some of the tumor in the left parietal lobe, the one causing most of your problems. We can’t rush this one, but we have to. You’re all in. Sure, let’s do it. But I’m not sure you fully understand the risks involved, how weak you are right now, how injured your brain is. If surgery could bring you back even a little…but if you’re body is too weak and brain too damaged…if we do surgery and it doesn’t bring you back…if the leptomeningeal disease spreads…if the leptomeningeal disease responds to the radiation…if there’s tumor in your spine anyway…if there’s tumor in your bones anyway…I’m frozen in indecision.

There were too many unknowns, too many possibilities, and for the first time, I had to make a decision about Matt’s treatment and consider the possibility that Matt might not come back, even with surgery, and was that the life he would want. For the first time, I couldn’t ignore that quality of life was a factor in my decision or that choosing not to fight was the harder choice, but maybe not the wrong choice.

And then I spoke to the neurosurgeon, and afterward, I wrote in a text message to a friend: I’m a little cautiously optimistic right now.

Because the neurosurgeon, after reviewing Matt’s scans, had determined that he could take out a “good amount” of the tumor in the left parietal lobe with minimal risk. That sentence tipped the scales. Minimal risk and the possibility of high reward. Matt’s parents agreed, and we scheduled another brain surgery in the hope of getting Matt back. Maybe we’d get that chance to say all the things we hadn’t yet said.

That night, the neuro-oncologist spoke to me about the results of the spinal MRI. Oddly enough—or not that oddly, given I’ve admitted I was functioning on auto-pilot—I have no memory of this meeting and the moment she told me the MRI had revealed a drop of tumor at the very base of his spine. A drop, but it explained the bowel incidents and the pain in his legs. It explained so much.

I don’t quite remember the logic that followed. I know only that the hope the neurosurgeon had ignited couldn’t be extinguished. And that’s the truth about the hope infused into this story: one ember was enough to press back the darkness. One ember could write a whole new chapter.

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