December 10, 2017: Twisted and Jagged Road

On December 10, 2017, Matt woke up with a new symptom. I was in the kitchen getting G and H ready for a Chanukah party at their Hebrew school when I noticed Matt standing strangely in the doorway. His knees were bent and he looked pained.

He let me help him to the couch and tried to explain what was wrong. Tried, because the effort wasn’t easy even though his mental state was relatively clear. The words weren’t easy for him to find and the questions weren’t easy for him to process. His brain was betraying him, while his body was failing him.

After a few minutes, I understood that he felt shaky and he had pain somewhere in his legs. He couldn’t narrow down whether the pain was localized in his knees or calves or ankles or all through out. He told me he’d gotten down the stairs by sitting and sliding down, one step at a time.

I called Columbia.

December 10th was a Sunday. I’d called various doctors during off hours before—on September 12th when I ultimately decided the callback was taking too long, once on September 23 after a mild seizure—and I knew not to expect our doctor. I knew not to even expect someone who was familiar with Matt’s case.

While we waited for a callback, presumably from Columbia’s on-call doctor, I drove G and H to their Chanukah party. I don’t remember how I made the decision to leave Matt. I vaguely remember Matt promising not to move for the eight minutes I’d be gone—telling me he was unable to, anyway. I vaguely remember G and H looking on with worry, while also hoping to not miss another event. I vaguely remember wanting to believe I could do it all, drop G and H off and take care of Matt.

At drop off, parents were encouraged to stay at the Chanukah party. I couldn’t—Matt was home with a new symptom. I left and a kind teacher took a crying H into the classroom. I simply couldn’t be in two places.

The moment I parked the car in the driveway, an unfamiliar number flashed on my phone. I answered and heard a familiar voice. Our doctor—the neuro-oncologist who was intimately familiar with Matt’s case—had called me back. I ran into the house and put the phone on speaker so Matt (who indeed had not moved) could hear. She directed me to give him an extra dose of Dexamethasone and an Aspirin, just in case the pain was due to a blood clot. She told us to come see her in the office in the morning unless the situation got worse.

Matt’s pain had already started to fade before the Dex and Aspirin. By the time G and H arrived home, the pain in Matt’s legs was gone. He was up and walking around again.

That afternoon, his aunt and cousin came to visit. I had them exam Matt’s feet. Did they look blue? Was he walking funny? Ultimately, I just wanted another set of eyes on Matt. I didn’t want to miss the crucial detail that could change everything about our story.

The story of today could be the story of a new symptom. It’s not. The story of today is the story of an unfamiliar, unblocked number flashing across my screen, of a doctor who interrupted her morning workout to call back her patient, of a doctor who’d become a partner.

Matt and I met a lot of medical personnel between June 6, 2016 and February 3, 2018. Surgeons and therapists, radiation oncologists and neuro-oncologists, nurses and technicians, but only one doctor ever called us back on a weekend. Only one doctor cried when viewing that last MRI. Only one doctor spoke with me on the phone after February 3rd.

The road to Columbia was twisted and jagged. We didn’t plan to be at Columbia. A series of fateful decisions—Avastin, Hackensack and Sloan’s refusal to participate in Duke’s treatment plan, the local hospital’s inability to care for Matt’s case—all led us to Columbia.

To the place where we found a partner, not just a doctor. To the person who walked up to the front lines to stand and fight beside us when all the other Goliaths who’d once been on our side had backed away.

The story of today is the overwhelming gratitude I felt to the doctor who called us back, the doctor who showed us on December 10, 2017 that we weren’t facing that invisible monster with claws and fangs alone.

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