For reasons I can’t remember, the kids and I picked Matt up after work on July 27, 2017. I don’t remember why he didn’t have his car with him, though I suspect it had nothing to do with brain cancer and everything to do with the logistics of turning in a car to the dealership after the lease had expired.
What I do remember is arriving at the office at the end of the day with two kids who thought Daddy’s work was a playspace made specifically for them, and a thank you card in my hand.
Before I reveal for whom the card was meant, I have to sidetrack for a few paragraphs.
Glioblastoma is unparalleled in its cruelty in a thousand different ways. The disruption to the mind-body connection. The loss of self and humor, and the destruction of the indelible spark that makes you into the unique version of you. But Glioblastoma is also simply a disease, and subject to the same cruelties, the same indignities, as so many other diseases. Including the indignity of feeling like you—you who is fighting for your life, who is trying to survive in a scary, new world—is nothing but a customer.
The state of the country’s healthcare system is not a topic I’m going to even approach in this blog. It’s not the story I want to tell, but I cannot give an honest account of our battle without at least mentioning my feelings about the fact that Glioblastoma, like all cancers, is billable. I would be lying if I never mentioned how jarring it was to see the credit card machine on the check-in desk at Duke, beside the sign that read “payment is requested on the day of your visit.” I wouldn’t be telling the truth if I never wrote that there was something supremely disturbing about needing to meet with the billing coordinator at Hackensack before being allowed to see the doctor who could hold the key to saving your life.
Doctors and nurses should be paid (well) for their time and energy. Medicine costs money. All of that is true. But also true: It felt like a betrayal to feel like a customer at a business we never wanted to patronize, especially when the ultimate price was life. Contradictory beliefs, I know, but I’ve said before that the world of brain cancer is full of contradictions.
During our visits to Duke, Matt and I spent a lot of time walking through the infamous Duke Gardens and discussing this exact contradiction. I was more hurt by the cold sterility of the business side of fighting for his life than he was. As always, he was more practical. He was merely annoyed by the amount of paperwork, the nonsensical codes used by the insurance company, and the ever-present billing errors.
Which brings me back to the card in my hand on July 27, 2017. The card was the very, very least Matt and I could do for the woman who worked human resources in Matt’s office. She helped us understand insurance jargon and sort through the mountains of paperwork arriving in the mail. And she patiently repeated the same process the next month, when we got another statement and were inevitably, again, confused.
So often a battle against a disease turns into a battle with paperwork. And too often, that battle with paperwork steals the energy required to keep hope ablaze. Because, though hope is a choice, it is also a commitment. One that requires energy and mental space. Matt and I were beyond fortunate to have someone kind and knowledgeable helping us in the battle against paperwork, freeing so much of our energy and mental space to fight the true battle, the battle for Matt’s health and his life.
On July 27, 2017, Matt and I just wanted to say thank you, knowing thank you would never accurately express how truly grateful we felt.
I’ve said before that Matt and I weren’t lucky medically, but so incredibly lucky to have the support we did. Family, friends, and colleagues who bore the brunt of so many side battles so we could focus on the one that mattered. I truly don’t know that we could have found a way to return to hope each time it faltered during the darkest days without the support that we had. Even now, in post-hope, we—and I’m including Matt in that we, because in this, I am confident he would agree—will always be unendingly grateful.
What remains after the last ember of hope vanishes? It’s a question I hope to answer for G and H and myself by the end of this story. I doubt the answer will be simple. I am nearly positive it will include gratitude.