On the morning of September 15, 2017, Matt’s dad called me from the hospital and said Matt was sitting up. I nearly hyperventilated from relief. Finally, some good news, some progress. I got G and H ready for school and then used Waze to help me navigate the rush hour traffic to the hospital. (Lesson learned.)
Matt was sitting up, but I was no longer sure that was good news. He didn’t smile when I walked in. He didn’t say much as I bustled around him, putting down my things and filling the silence with updates about G and H. He didn’t react when I showed him pictures of the kids (G in her cheerleading outfit and H with his hair spiked up). He was blank, a shell of the vibrant, expressive person he’d been. I worried that the blankness was not emotional—that he was upset about being back in the hospital—but rather a function of the bleed causing trauma to his brain. When I asked the doctors they said they couldn’t be sure. They couldn’t tell me whether Matt’s mental and emotional state would return to his (new) normal within a few days or a few weeks. They said he might never come back to himself or it might take years. In short, anything was possible and we could do nothing but wait. (Patience is not a virtue I possess, remember?) But I had to have hope.
Around noon, the doctors ordered a midline IV, which they explained was a more permanent IV for people who would be staying at the hospital longer term. The MRI had confirmed that the bleed was coming from the tumor infused with poliovirus (in the left parietal lobe) and it had grown from Wednesday to Thursday. The doctors said it could takes weeks to resolve. I mentally prepared myself for a long hospital stay and waited for Duke to call me with their interpretation of the MRI. Duke’s opinion—Duke’s expertise on poliovirus—was the only opinion that mattered.
When Duke called about the MRI, the day shifted gears entirely, swung wildly positive. The Duke doctor confirmed that the bleed was coming from the tumor that had been treated with poliovirus—and yes, the likely cause was Avastin—but the tumor itself had shrunk. And—and!— the tumor in the right parietal lobe, the one that had received Gamma Knife radiation just weeks earlier, had disappeared completely. Vanished. Gone.
At about 3:30 in the afternoon, the day descended into chaos. Matt’s doctor walked in and said despite the introduction of the midline IV and despite what the doctors had said earlier about a longer term stay, they (whoever they were) had decided that Matt would be discharged that afternoon. Medically, he was stable and they were doing nothing for him.
I was speechless. Even in Post Hope, I remain speechless about that shocking declaration, that shocking complete and total about-face.
Matt’s mom and I went into overdrive to find a nursing service or an aide who could help me care for Matt at home. In Matt’s current state, I could not care for him and G & H on my own. If it were a matter of pain management and untangling confused threads of thought, I’d like to think I would have been able to care for everyone. But pain and confusion were the least of the symptoms worrying us.
And with that the story has arrived at one of the absolute cruelest things brain cancer ever did: it stole Matt—funny, kind, charming Matt—and replaced him with a stranger.
I’ve hinted at the subject before, mentioned that sometimes I missed Matt when he was right in front of me, mentioned that sometimes I got the worst of him (I’d like to think he knew that I was “in this no matter what.”) I suspect this won’t be an easy topic to read. It’s not an easy topic to write—I don’t quite have the words to capture this part of the story, and I’m afraid I’ll taint Matt’s memory by telling this part of the story. But I owe the truth and I have to hope that after 175 posts, anyone following along has gotten to know the real Matt, and they will know–like I always knew–that the person in the story I’m about to tell was not the real Matt. I also have to hope revealing this truth, this particular hardship some brain cancer caregivers face, will help someone else in similar shoes feel less alone. Reaching out across unknown miles. Making a little good out of all of this. That’s always been the endgame.
Matt did not spend most of September 15, 2017 unconscious as he did the two days before. He was taking pain medication, but he was not asleep for the majority of hours. After the insertion of the midline IV, he wasn’t blank, either. He was, instead, impulsive and angry and patronizingly mean. In short, he was everything Matt wasn’t.
As is so often the case, the easiest way to tell this part of the story is to pluck out a single example from the day. Matt woke up agitated after the introduction of the midline IV and made two very reasonable requests. He wanted food and he wanted pants (rather than a hospital gown). I handed him his lunch tray and he pushed it away, saying he wanted food. No problem—hospital food maybe is only food in the loosest sense of the word. I ran to the Starbucks in the lobby and brought him a sandwich I knew he liked. When I presented it to him, he yelled at me for removing the lunch tray and bringing a sandwich—he wanted the lunch tray, not the sandwich. He asked why I hadn’t brought pants. I offered him the jeans he’d worn to the hospital and he yelled and asked why I couldn’t understand a simple request to bring food because he just wanted to eat pants. We talked in circles, me trying to placate Matt, Matt growing angrier, more frustrated, meaner, likely because the thought in his mind was not the one coming out on his tongue. Maybe because the steroid dose was too high. Maybe because the tumor was too aggressive.
When Matt tried to stand from the bed by climbing over the bedrail rather than the open side—and snapped at me for trying to help—a kind nurse stepped in. She helped convince the doctors that Matt was not ready to be home yet. She bought us a few more days to make arrangements.
In the car on the way home, I broke down on the phone with Matt’s sister. Fear, exhaustion, stress, and now guilt, too. I wanted Matt out of the hospital, home with his family and comfortable, but I was terrified of bringing him home in the state he was in. His safety was a concern, but also, honestly, it hurt to be the person to bear the brunt of his anger. I could do it, but I didn’t know if I could do it and then put on a smile for G and H while I helped them with homework. I could do it, but would I be able to protect G and H from that anger?
That night, I arrived home in time to tuck G and H into bed. They were struggling with Matt’s absence. Between leaving the shore early for the Duke trip, the Chicago trip for work, his overall mental absence while home, and now this hospital stay, they missed him. G asked why he was so sick, and I knew simply saying that daddy had headaches wasn’t enough anymore.
One year ago, after fifteen months of euphemisms and skirting the truth, I introduced—without Matt, without even consulting Matt—the word cancer to G and H. I used the phrase the Duke social worker had suggested we use many months earlier. I said, “Daddy has a spot of cancer.” I told them cancer was a disease that made some people sick, but that Daddy was in a hospital with a lot of doctors who were doing their best.
One year ago, I no longer could protect G and H from the monster that had invaded their lives.
One year ago today, despite all of that, I also believed Matt was on the road to a cure.
The wild optimism was dampened only by this thought: what was a cure—a cancer free MRI even—if the treatment side effects had stolen Matt, anyway?
September 15, 2017 is a rock bottom. It’s a razor edged rock bottom. But after the rock bottom comes the upswing. And this upswing will be awash in hope. After all, we’d defeated two tumors and the third was shrinking.