August 16, 2017 brought with it a number of firsts. Most notably, August 16, 2017 was the first time Matt went to Columbia for a MRI. All the most recent MRIs had been performed at Duke, and prior to that, at Hackensack. One year ago today, we were introduced to (reminded of) the idea that Columbia is, at heart, a city hospital and prone to city delays and malfunctions and overcrowding.
A with and without contrast brain MRI usually takes about an hour. In the fourteen months Matt had been a brain cancer patient, his MRIs had never exceeded that one hour mark.
Matt’s MRI was scheduled for 10 a.m. in the basement of the Milstein building of the Columbia Medical Center. The basement meant no phone service, no natural light, and no fresh air. When one hour turned into an hour and a half, I stepped out of the basement, took the elevator back up to where my phone received a signal and texted Matt: You’re not done and walking around somewhere right? I’m waiting for you down in the basement.
I simply couldn’t believe that he could still be in the MRI. I assumed he must have gone out a different door, though the receptionist assured me a dozen times that there was no other door.
When Matt finally finished with the MRI, at 12:23—a whooping two plus hours—he told me the technician kept stopping the machine and ordering more tests. I remember my breath catching on the spark of worry that had been ignited. Two thoughts went through my head. One, what did the technician see that warranted the extra testing? And, two, what if Matt isn’t telling me the truth? Not because he was lying, but because his brain had not accurately processed what had happened in that MRI.
Whether Matt’s account of those two hours is accurate, I will never know. I do know that the stress of wondering what the MRI would look like crashed into me with a thousand times more force than it had before.
The day only continued to fall apart after that appointment.
After bloodwork and filling out the paperwork to request a copy of the MRI to send to Duke, Matt and I went to see the doctor. A nurse arrived to take Matt’s vitals, including his temperature. His temperature was 97.7. I asked the nurse why it was so low. She said maybe he was cold; the air conditioning was on. I accepted the answer and didn’t ask again until the next appointment, when his temperature was again low.
After waiting for a not unreasonable length of time, the Columbia doctor walked in. We didn’t expect her to be able to give us a full picture. After all, we believed only Duke was capable of reviewing a MRI containing a tumor treated with poliovirus. But we hoped to know whether any tumors disappeared or shrank, or—in the worst case—whether any new growths had appeared. The doctor arrived with a grim expression on her face. She told us there was a new tumor.
The sound when your world falls apart, again, is silence. A buzzing, roaring, nauseating silence.
The Columbia doctor turned to the computer screen to show us the images, to compare the previous MRI with the one performed that day. It was then that Matt and I realized she was looking at the MRI from May, when Matt never had a third tumor, rather than the MRI in July, when the third tumor had appeared. When we reminded her that we knew about the third tumor in the right parietal lobe—and had, in fact, consulted with her on the best course of action for that tumor—she backtracked her statement that the MRI looked worse. There was no new tumor, only the known tumors in the left and right parietal lobes. And without the July MRI (which Duke had been supposed to send), the doctor could not tell us if the tumors in the left or right parietal lobes looked at all smaller. All she could tell us was that neither tumor had disappeared.
The doctor performed the standard cognitive and physical tests. I do not remember how Matt did on the tests, whether he excelled on the memory portion or failed the math portion. I know that Matt’s wit and humor and spark were as bright as I’d seen them in days in front of the doctor. He always managed to be the best version of himself when examined—that amazing brain.
We ended with a discussion of Matt’s bloodwork. Apparently his platelets and white blood cell counts were low as of August 2nd, likely thanks to the chemo. The doctor noted that Duke, who had prescribed the chemo that could impact Matt’s bloodwork, had not been reviewing his numbers. We learned on August 16th that though Matt had been traveling to the city for weekly bloodwork, NOBODY had been reviewing his numbers.
After the emotional roller coaster of the day, we left Columbia infused with a rage I’d never felt before.
Duke had failed us—failed to send the MRI and failed to review the blood work. (Matt was their patient, with their experimental drug floating around in his head, and CCNU was the drug they prescribed. He should have been on their radar.) Columbia had failed us—we lost all confidence in that doctor after she arrived to the appointment unprepared. I’d failed us, by assuming that Matt was as important to them as he was to me, that he was more than just a patient to all of them.
Maybe that wasn’t fair. Maybe our rage was a result of a difficult morning, a challenging week, and a growing desperation. Maybe the Columbia doctor was having her own bad day, pulled in a dozen directions at once, and we shouldn’t have assumed based on one bad visit that she didn’t want to be anything but a stop on the way to more Avastin for Matt. Maybe we shouldn’t have assumed, based on Duke’s reputation and the seriousness of Matt’s disease, that they were paying attention.
What’s left after the last ember of hope fades away? Hopefully, forgiveness.