On a rainy morning one year ago today, G started second grade and H started kindergarten. We took first day of school pictures inside the house, but our family’s energy was off. We were all on edge. H was nervous about starting kindergarten, Matt’s processing abilities were beginning to further deteriorate—although, at the time, I didn’t recognize that as the case—and I was anxious for G and H, stressed about driving Matt to Columbia for his Avastin infusion, and concerned that I wouldn’t be home in time to meet the school bus.
After the bus disappeared around the corner, Matt and I climbed into the car and began the long drive to Columbia. I think—though I could be wrong—that this was my first time braving the morning commute on Rte. 80 and driving over the George Washington bridge to Columbia. The stress of rush hour traffic, after sending H off to kindergarten, brought me too close to an emotional edge.
We entered Columbia and were directed to the elevator which would take us up to the floor where the infusions took place. The elevator opened onto a scene that pushed my frayed nerves over that emotional edge. Patients waiting for infusions crowded into every square inch of the large waiting room. After a few laps around the room, Matt and I managed to find two seats. Our elbows and knees were mere inches from those of the people seated beside and across from us.
Matt and I often used to joke about how bad we both were at waiting in line—I told him frequently that patience was a virtue I simply did not possess—and how particularly poorly I fared in crowded rooms. It’s a character flaw I’ve come to terms with, and explains perfectly why I always appreciated Matt’s ability to talk us into the front of the line.
Matt couldn’t talk us into the front of the line this time. Even if his processing, humor, and charm hadn’t already been feeling the impact of the tumor, I don’t think he would have been able to change the timeline of our day. An hour passed. I couldn’t sit anymore. I paced in front of the check-in desk—no doubt sending out my negative energy to every corner of the room—in fear that Matt and I had been somehow skipped over in the mass of people waiting patiently for their turn. I explained to anyone who would listen that it was my son’s first day of kindergarten and I had promised him I’d be waiting at the bus stop at the end of the day. The receptionist was sympathetic, but ultimately powerless. Everyone in the room had somewhere else to be.
Finally Matt’s name was called. He was led to a comfortable leather chair and his identity was confirmed. After a comedy of errors in which Matt’s blood pressure was taken three times by three different people—a reflection of the chaos of the waiting room rather than the competency of the nurses—the Avastin was ordered. We waited for the Avastin—that black box drug—to be brought from wherever it was locked up inside the hospital. (I imagined a dark, cold chamber in the bowels of the hospital building, but I recognize that’s unlikely.) After the drug was brought up to the infusion floor and double checked against Matt’s chart, the infusion began. Thirty minutes later, he was done. I dropped Matt off at work and made it home with fifteen minutes to spare.
In those fifteen minutes, I paced and recharged and reset my stress level so I could be the mom G and H needed.
I mentioned a few weeks ago that when I first thought of the idea for this blog, I bought a planner and filled in only a handful of dates. Most of those dates are in September. One of those dates is today. When I started this project, I knew I’d have to write about September 6, 2017 and I knew I would not be proud of the way I let fear and stress, anxiety and exhaustion get the better of me. In Post Hope, I can only hope to do better.
In hindsight, in looking back and recognizing that Matt was beginning to show the first signs of a truly terrifying plummet, I can understand the anxiety in the waiting room, the almost obsessive need to be home for G and H. I was desperately looking for anything—an iota of control, a speck of normalcy—that might save us from falling any further. The truth is that it wouldn’t have helped. We’d already started a free fall.
September 6, 2017 was Matt’s seventh and last Avastin infusion, though we didn’t know that then. In a week’s time, every doctor, at every institution with an opinion on Matt’s case, will have finally agreed with what Hackensack said months earlier: No Avastin. It was too dangerous for Matt.
Soon, the truth of what Avastin was hiding would be revealed to all of us.