September 20, 2017: Online Theories

One year ago today, Matt was scheduled for an Avastin infusion and we canceled on doctor’s orders. The hemorrhage meant that Matt was not a candidate for Avastin anymore. Matt and I were both relieved to be done with that dangerous black box drug.

But that relief was tempered by the many, many hours I’d spent scouring the Internet, reading the forums and the anecdotes posted by other patients and caregivers. In the forums, the anecdotal evidence suggested that Avastin was dangerous to start.

But even more dangerous to quit.

The theory I’d read that had me most concerned was that after stopping Avastin tumors returned with a vengeance, an almost rebound effect—the tumor comes “back galloping.” I asked Duke about the this theory and they’d told me the study that had first suggested the rebound effect had been debunked. They weren’t concerned about a rebound effect because a rebound effect did not exist. (I’ll return to this theory often between now and February 3rd.)

I chose to trust Duke over the stories I’d read online—after all, you can’t believe everything you read online—and I did not share my fears with Matt. Why?

Partially because I was hoping to prevent an emotional surrender on Matt’s part, as I mentioned yesterday. And partially, because somehow our marriage had undergone its own slow, cruel transition. Somehow, in the weeks between the discovery of the third tumor and September 20, 2017, Matt and I had stopped texting each other funny memes. Matt had stopped texting me random notes throughout the day, asking about my day or letting me know how busy his day was. Sometime in those weeks, we’d transitioned from husband and wife to patient and caregiver.

I’ve written often about grief waves, the way I can sometimes feel them building before a particular date, the way they sometimes linger and my only choice is to hide behind big sunglasses. I don’t know that I’ve ever explained a grief wave, not really. I haven’t wanted to write too much about loss and secondary losses because this is not a grief blog (though Post Hope has crept in with a story line of its own). But in the story of September 20, 2017—in the story of September really—an element of grief exists.

In the hours I’d spent scouring the Internet, I’d read another theory, one I also didn’t share with Matt. This theory was specific to caregivers and even reading it felt like a betrayal. This theory suggested that the days were so difficult not simply because I was busy administering medications and calling doctors and renegotiating our relationship (I’d spent an hour that morning pleading with Matt to stop making calls about our finances without me in the room after I caught him hanging up with the bank and moments later unable to recall the conversation), but because I was also grieving the loss of our old life.

I didn’t want to believe it at the time. I didn’t think it was possible to grieve something I believed would return—eventually. So it’s only in retrospect that I can bring myself to say I was already grieving our old life. Every moment of hope was tinged with nostalgia. I was grateful for all of him that I still had, but I was missing the joy of a meaningful conversation with my best friend. I missed joking with someone who knew how to make me laugh and who I could make laugh, whose questionable sense of humor matched my own.

In Post Hope, my grief is for Matt, and all those little things I’d started grieving more than a year ago.

The cruelty of brain cancer—how early that grief creeps in.

One year ago I didn’t believe it was possible to grieve and hope at the same time. I thought grieving our old life meant I was abandoning hope. In Post Hope, I’ve learned that it is possible to grieve and hope at the same time. I’ve learned that grief and hope do not exist in vacuums separate from anger and fear and love. I’ve learned that you can wish for more moments and still be grateful for every moment you had, even the ones tinged by that early grief.

The duality of Post Hope. Every moment is marked by grief for a life lost and gratitude for a life lived and shared and loved.

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