One year ago today, we (our family of four) celebrated H’s birthday by gathering a few dozen six-year-olds together in an arcade to shoot foam balls at each other, eat pizza, and gobble down cake.
We took our last family photo, posed over an ice cream cake and flickering birthday candles. Matt couldn’t quite lean into the photo. His smile wasn’t exactly the one I knew from more than a decade together. But he was there, smiling and taking photos, talking to guests and beaming with pride. All the things that he’d struggled to do in other moments.
I’ve written before about how the line shifts. Behavior that once would have set off alarm bells, now simply didn’t. The cruelty of brain cancer is the way the abnormal becomes normal.
There was a moment during H’s birthday party when a family member learned the truth of Matt’s MRI and asked me about it. Five weeks earlier, there’d been one tumor. How could it be that the tumor had spread so drastically, so devastatingly?
I remember not knowing how to answer. We had an appointment to speak with our Columbia doctor and we hadn’t heard from Duke; all I had was what I’d Googled, what I’d read, and what I’d learned from the brain cancer forums. All I had was another theory. About Avastin.
Matt started Avastin in May to control the sudden and severe swelling caused by the poliovirus. Back in May, when we asked Hackensack (our then local neuro-oncologist) to administer Avastin based on Duke’s orders, Hackensack refused. The neuro-oncologist said Avastin was a dangerous road for a number of reasons, most relevantly for this post, because it makes MRIs look better, though nothing is actually better. We parted ways with Hackensack over Avastin.
Since about August, Matt had been getting steadily worse—physically, mentally, emotionally—though his MRIs were looking better (or at least stable). We couldn’t understand the disconnect, but we trusted the results.
My theory: maybe the disconnect was Avastin. Maybe Avastin made every MRI between May 1st and November 15th unreliable. Maybe the tumor had been growing and spreading for months and weeks and we couldn’t see all those little nodules, those spaces filling with tumor because Avastin had pulled a curtain over all of it.
There’s a study floating around the brain cancer forums that suggests tumors come “galloping back” after Avastin is discontinued. When I once asked the doctor about that study, the doctor assured me it had been disproven.
And yet, Matt’s cancer returned with a vengeance just two months after Avastin was discontinued and we were left asking how.
How? How could it be that the tumor had spread so drastically, so devastatingly, in just five weeks? How could Matt’s tumor have lashed out in a way that was supposed to be nearly impossible? How did the poliovirus fail him so miserably when it had cured others?
One day, if G and H pose these questions, how will I answer?
Honestly, I don’t know. I have my theory, but I spent twenty months crafting theories to explain the unexplainable and none proved correct.
I know I could spend a lifetime searching for an answer because that’s easier than telling G and H that sometimes terrible things happen and there’s no explanation, no villain to blame.
This weekend, H turned seven and G ran her first 5K (ran, walked, complained loudly). As the weekend drew to a close, G posed a different question. She asked me whether Daddy would be proud of her and happy for H. The question broke my heart. Because of course he’d be proud, of course he’d be happy, and I wish she didn’t have to wonder.
Despite my best intentions and best efforts, this blog will not help me answer every question for G and H. How and why will mostly remain a mystery. But I hope this project will definitively answer one question for them: would he be proud? Without a doubt. Every moment of every day. Of their strength and resilience and ability to keep moving forward, even when moving forward feels too hard.