Yesterday I learned that my husband was supposed to be dead. This isn’t new information, of course, but it is. The speed of medical advances astounds me- and I am grateful that at least for us, that speed is faster than the speed of cancer. It’s not for far too many people. I had known he was supposed to be dead from the first time a doctor told me “astrocytoma,” and “glioma,” and made a guess at a prognosis. But the raging pace of research has yielded another little gem of pessimism I’m trying to wrap my head around.
There’s a specific test they do now on M’s type of tumor, that didn’t exist eight years ago. This test told us that M’s grade four astrocytoma, which is in fact what his new tumor was as well, is “un-methylated.”
This means it generally doesn’t respond to the old treatment. Period.
And yet, here we are. Eight years later.
The arsenic he took to break down the blood brain barrier to allow chemo and radiation to reach his tumor better- that study failed. The Temodar he took five days of every four weeks for eighteen months- that medication was supposed to fail.
Even with them, and if they worked, he was supposed to die seven years ago, before we could celebrate our first wedding anniversary. We were never supposed to have eight years of chaotic happiness. We were never supposed to have three little girls who think he’s the funniest, strongest, most amazing man in the universe. We were never supposed to be here.
I knew that.
And yet, here we are. Not just happily married with a family of five and the regular stresses of everyday life that everyday people face every day. We’re here again, looking back on the thing that once worked and learning, no, that shouldn’t have worked, nobody knows why that worked, you shouldn’t have lived.
It really threw him for a loop. The look on his face was what I imagined it was three days before our wedding, when Ted Kennedy had a seizure and was rushed to the hospital, and the news informed M that Ted Kennedy’s tumor, his own cancer, was not survivable. That Ted Kennedy would die, soon, and that M could expect the same.
He called me that day, as I was getting my pre-wedding haircut, to tell me he’d read the news. All of it. All the research online he’d avoided, all the statistics he’d been keeping himself from looking up, all of them were right there in the news, and he couldn’t stop reading. It had been nine months, and he learned he was only supposed to have nine more.
What do you do with that information?
“Do you feel like you’re halfway to being dead?” I asked him, and he said no. “Then fuck it,” I said, “Kick its ass. You’re not Ted Kennedy. You’re going to beat this.”
He told me he loved me, and I was so grateful to be standing on the sidewalk in Wicker Park, with the sun on my gorgeous new haircut, watching hipsters walk their dogs past, oblivious to the life and death happening right then, right in front of them. Oblivious to the fact that to be loved by M was the greatest experience one could have on this earth, and that they were missing out on both the best and worse of life and they would never know. And although I felt sick with worry over the face I imagined him making as he collected himself and went back to work, knowing he was supposed to die, supposed to be dead, and that instead he was marrying me on Friday, I also felt giddy with gratitude.
Three days later we were married on a rooftop, the Sears Tower behind us jutting up like a middle finger towards the cancer that already felt so much in the past.
We had to learn over and over again that it wasn’t in the past, but the lesson never stuck. Just as the idea that he was supposed to die, supposed to be dead, never took root.
Except for when it did. When it has. When I wonder what I’ll do every time the Foo Fighters come on the radio and I think about M and hear his crooning like an echo inside my head. When I wonder if anyone could ever love a dumpy, widowed mother of three, staring at decades of loneliness… or if I could ever want someone to. When I tell myself that if M is gone when the kids are older, I’ll find a way to take them to Moscow to the skyscraper their father helped design, and bring them to the glass domed nightclub he worked dozens of hours of overtime on, and tell them this was what he loved to do, and this was what he wants to be remembered for, rather than a battle with a cancer and a story told to spread the burden of grief around a little more.
I can’t help thinking those thoughts, sometimes, when I’m alone and the self-imposed rules I have about my brave face crack around the edges.
I believe M is going to beat this again. I do. Inasmuch as my understanding that “beat this” means something very different than I wanted to believe it did. I believe we have many years yet, together. I believe that it’s possible my husband will meet the goal he set in the months before we were wed.
“I want to spend more of my life married to you than not,” he said.
“It’s settled, then. You’re not allowed to die until our twenty sixth anniversary.” I added, “If ever.”
“I promise,” he grinned, looking at me across the car, unshed tears vanishing back into his eyes, “I will never die.”
We were so young, then.
Our seventh anniversary is eleven days away. Last year I joked, “Six down, twenty to go.”
I’m not counting down, right now. Brain cancer treatment is so changed, is so different, I don’t know what I’m looking at. And recurrences are not the same as initial diagnoses. I had no idea how unlike they would be.
I had no idea how new information, even useful new information, would feel like a punch in the gut. Like we are so unfathomably lucky and there is no reason for it, no explanation. That we ran across a burning bridge, knowing it was on fire, only to find once we’d reached the other side that we had somehow stepped right over a tiger pit at its end.
And here we are, staring at a new burning bridge, with the knowledge now that there are vicious wild animals waiting to eat us if we make it to the other side.
Knowing now that really, there is no other side. That the path ahead is smoldering, but not impassible. But hard. So, so hard. And now we’re taking not just ourselves but three helpless children with us, shepherding them through dangers and fears and carrying them through the worst to places maybe we can all enjoy a little peace.
Everything is different than it was.
Except that I still feel utterly unworthy of being so loved by him. That I still feel sure to my bones that he is stronger than this thing happening to him, inside of him. That I love him so much that trying to wrap my head around the enormity of it brings me to tears. I love him so fiercely it riddles me with guilt.
If it is, as I once almost allowed myself to believe, my love that saved him last time, what would it mean if I can’t save him again?
My husband is supposed to die. Supposed to be dead.
This isn’t new.
It’s hard. It is hard to grin and flip off fate every hour of every day. It is hard to know that reality objects to the conditions of your survival. It is hard to know it will never not be true.
But it is easy to love him every minute of every day. Even if it means planning his birthday celebrations in a future without him during my weaker moments. Loving him is easy. Believing in him is easy.
Believing that someday, when he’s really supposed to die, our grown children can come be by his side and tell him how they still believe he is the funniest, strongest, most incredible man in the world…
It’s the rest of this muddling through that’s hard.
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