For ten days in 2017, we had a break. We had easy. We had a local doctor willing to administer Avastin and a treatment plan with the possibility of a cure on the horizon. We could almost let ourselves forget that Matt was diagnosed with an aggressive, terminal disease and pretend everything was fine. Then, June 12, 2017 came along as a gentle reminder that our story wasn’t finished, we were still in the fight of our lives.
June 12, 2017 was one day shy of exactly three weeks since Matt’s last Avastin infusion at Duke. It was his third (and, if we were lucky—which we were not—final) infusion of the black box drug, though his first at Columbia. I found myself, once again, making a need assessment: who needed me more. But this time, my decision to stay with the kids wasn’t difficult and wasn’t mine alone; we both agreed the kids needed me home. G had her first day of cheerleading and H seemed to need the familiarity of a routine (that temper tantrum!). And Matt didn’t need me. He was feeling great, tired from working long hours, but exhilarated about the imminent sale of his company and the new phase he was about to enter.
The doctor’s visit didn’t go smoothly. It didn’t go at all, actually. The plan had been for Matt to see the doctor, check-in with her to make sure she agreed he was doing fine and was healthy enough for Avastin, and then walk over to the other building where the infusions took place.
Matt waited over an hour for the doctor. She never came. Finally, he learned the doctor wasn’t coming—there’d been some mistake in the schedule—and he was sent for the infusion. In the text messages for today, I was more upset than Matt. I asked “How is that possible?” He didn’t seem bothered. He’d spent the hour while he waited productively responding to work emails. He seemed simply thrilled that he arrived at the infusion appointment an hour early and the infusion team took him an hour early.
A year ago today, Matt and I spent more time texting about tennis than we did about anything medical. He’d just found out that he was a part of the lake’s tennis team and he was overjoyed at the thought of playing competitively every week. I remember being overjoyed that Matt seemed interested in returning to the things he once loved. I remember thinking I could see an end to our nightmare on the horizon. That was just a year ago today.
In post-hope, I find myself very rarely asking why. I did, to the point of obsession, particularly after February 3rd. I researched and learned about factories accused of spreading toxic waste not far from where Matt grew up. I blamed his face wash (Cetaphil, which I’d made him stop using years ago), his treatment (both radiation and chemo can cause secondary cancers), and his doctors (who, irrationally or not, I blamed for not checking his spine the very first day he arrived in the ER). Lately though, I’ve stopped asking why. I don’t think there will ever be an answer to why and I can’t continue screaming the question into a vacuum. More frequently, I find myself looking back at where we were one year ago—texting about tennis teams and where in the city he’d go for dinner to avoid rush hour traffic (Dallas BBQ)—and asking, once again, how is that possible.
How did everything change so fast?
Telling the story, slowing down all those moments and hours and days that I didn’t know were limited seems like a good way to understand how. And in a perfect world, when I reach the end of this project, I will have an answer to the question how. I’ll understand how it happened so fast; I won’t be left dizzy and dumbfounded by the speed of it all. But, this is my 80th post and I’m no closer than I was in post one. Which probably means I may not have an answer to how by the end of this project. Slightly discouraging. But maybe not. Maybe it’s simply a gentle reminder that even when the project ends, the story won’t be finished.