A year ago today, Matt had an appointment at Columbia for Avastin. Only sixteen days had passed since his previous Avastin infusion, but the discovery of the third tumor had prompted Duke to increase the dosage and frequency of that black box drug, the one Matt had started simply as a way to manage the swelling from the poliovirus. We never signed up for Avastin as a treatment—all the studies proved Avastin did not help overall survival in GBM patients. Yet, we didn’t question why suddenly Avastin was being pumped into Matt’s system with an alarming urgency. I think we were so swept up in this latest treatment plan that it didn’t occur to us to ask.
The infusion center was running late. Matt waited an hour and a half for his infusion. Afterward, he called me from the neuro-oncologist’s office and placed me on speakerphone so I could hear what the doctor had to say.
I can’t remember why exactly I had chosen not to go with Matt. My best guess is that we assumed Matt would breeze into the city, receive his Avastin, share a quick hello with the Columbia doctor, and return to work. We assumed this appointment was irrelevant, nothing more than a way to check the box to continue receiving Avastin at Columbia. We’d already spoken with the doctor at Columbia about our options and filled her in on our decision to follow through with Duke’s treatment. We’d reviewed the latest MRI ad nauseum with Duke and Hackensack. I think we both assumed no new information could possibly come from the day’s appointment.
My memory works in strange ways. I’m terrible at remembering faces (and truly sorry about that flaw), awful at recalling names of restaurants. G and H will tell you that unless I write something down, I’m completely scatterbrained (especially in post hope). But sometimes, I’ll memorize a license plate just by glancing at it. Sometimes, I’ll read a book and remember the exact moment I read a particular line. And sometimes, I’ll burn the words someone speaks into my memory and remember them long after that person forgot they uttered the words at all.
That’s the reason I remember that Hackensack said Matt would be fine, and Duke said Matt would see his kids graduate high school. There’s no record of those sentences. It’s just my memory.
On July 19, 2017, I burned another sentence into my memory. But until I started reviewing the text messages from today, I thought the words existed only in my memory. Apparently, though, the particular sentence that I remember from today also exists in a text message to a friend.
At 2:02 p.m., in response to the question whether I’d spoken to the doctor, I said this: Yep all good. Didn’t have much new to add except it’s uncommon for a tumor to move around so much. Usually regrows in same spot or nearby. She [the doctor] said it’s concerning but if he’s feeling good and not symptomatic then keep on doing what he’s doing.
I spent the rest of that afternoon Googling GBM and tumors in new locations. For the next few months, every time I opened my laptop I typed in a variation of that same search. Maybe looking for confirmation. Maybe hoping to soothe the anxiety that statement churned up. But the search produced nothing, every time. I wouldn’t learn the word to describe the situation until November 17th.
Something else happened July 19, 2017 and it has nothing to do with Matt, not in a specific way. One year ago today, Senator John McCain announced he’d been diagnosed with GBM. I would never—ever—wish this disease on another family and I remember the incredible sorrow I felt for the McCain’s because I could picture every moment of their first awful days in the hospital, could imagine how devastation crashed against hope upon hearing the word Glioblastoma. I knew in a single moment every heartbreaking second they’d lived, even though their story was undoubtedly different.
A flood of articles followed McCain’s announcement. A few articles called him a warrior and said something to the effect of “if anyone could beat GBM, he could.” Following those articles, I read a number of articles that were upset with the warrior and fighter terminology for a bundle of reasons that don’t matter to my post. What mattered is that people were talking about GBM. Because maybe that chatter would turn into donations. Maybe those donations would turn into researchers shifting their focus toward a cure for a disease that is often ignored due to its rarity and mortality rate.
Maybe all that chatter meant we—Matt, me, the McCain’s, every family impacted by GBM— had a little more hope than we had the day before.