Before brain cancer, before we ever heard the word Glioblastoma, when Matt had a headache, I’d tell him to take an Advil, and then I’d probably roll my eyes, maybe make an unsympathetic joke about “man flu,” and offer him something to eat. (Because before brain cancer, the root cause of every problem was probably low blood sugar.)
After brain cancer, after the word Glioblastoma became a permanent part of our vocabulary, when Matt had a headache, the world needed to pay attention. I wanted everyone to stop what they were doing and focus on the fact that my husband, the one with two active brain tumors, had a headache that needed relieving.
On July 11, 2017, Matt woke up with a headache and I was terrified. I called Duke. Their solution was to tell Matt to take a Tylenol. So, Matt popped an Extra Strength Tylenol and went to work.
Meanwhile, we’d made our decision about which treatment plan we would pursue. As always, we chose the option that offered the most hope for a cure. (“Yes, and they did great,” was insufficient as an answer, but it meant, at least, that Matt would do great, too.)
With the decision made, Matt was ready to start the CCNU prescribed by Duke. The only problem: we still hadn’t received it. FedEx had failed to deliver the chemotherapy the day before. We’d paid extra for guaranteed delivery between 3 and 5 p.m. on July 10. I had stayed home that entire day waiting for the package, but noon turned into five, turned into seven, turned into midnight. That package with the critical medication did not arrive.
Matt arrived at work and called FedEx to ask for the tracking number of the package. FedEx couldn’t give it to him on the grounds that the sender had to provide the tracking number. We called the woman at Duke who handled the prescription, but she didn’t answer. (If I hadn’t lived this day alongside Matt, I might not have believed how a tracking number and a delivery almost re-routed our entire treatment plan.)
Around 11 a.m., panic began to set in. Matt had a headache. The world needed to stop everything and focus, right? This time, I called FedEx. I told our story, adding in every sympathetic detail I could think of until I reached someone who agreed to talk to me and confirmed the package I was waiting for would be delivered between 3 and 5.
A few hours later, Matt’s headache subsided; the world could continue revolving.
At 3:21, the package arrived.
At 10:30 p.m, on an empty stomach, as instructed, Matt took CCNU. A one-time pill that worked over a span of six weeks. Now, there was nothing to do but wait, schedule our appointments for Avastin, and watch Matt for side effects from the medication.
The other day, in the depths of a grief wave, I wrote that I can’t fathom what “not here” means. After I wrote that, still heavily submerged in that particular grief wave, I started thinking that my statement wasn’t quite true. It had been true, in those first numb days and weeks and months after February 3rd, but it wasn’t anymore. These days, I do understand “not here.” Not here is a void, a silence after the kids are in bed, an empty space in a toothbrush holder, an unused grill on the deck.
The problem, now, isn’t in understanding. It’s in the fact that “not here” seems to take on more meaning the further G, H, and I get from February 3rd. The problem is that “not here” is limitless in its definitions and sometimes, a lot of the times, that makes the future look uncertain, and, truly scary. Which doesn’t sound like hope.
I think often about hope (obviously) and where our hope came from, but more so after yesterday’s post. Sometimes after I write a post, it seems as if we snatched hope from the sky, out of droplets of sunshine and fairy dust, and I look back and think maybe we were too naive. But then a post like yesterday’s comes along and I remember that hope wasn’t just plucked from the aether. It was sometimes spoken outright (you’ll see your kids graduate), sometimes inferred (an extra strength Tylenol should do the trick), and sometimes emailed (yes, and they did great). Hope wasn’t just in our imagination. It was always there, almost tangibly so. It was just a matter of paying attention.
Maybe that’s always true. Even in post-hope.