May 18, 2017: Standstill

Matt woke up on May 18, 2017 exhausted in every sense of the word. He’d been working long days, giving presentations, attending twelve hour long meetings, and missing time with the kids. He didn’t have the energy or the time to negotiate the dynamics of two doctors who couldn’t seem to get on the same page.

A lot happened in yesterday’s post in terms of moving medical parts. The summary for the TL;DR crowd is this: Matt needed Avastin in less than a week to keep from heading down that dark road we’d traveled in April, the doctor at Hackensack refused to administer the Avastin for a number of reasons, and Duke had not even managed to return Hackensack’s phone call to discuss the treatment plan or explain why Avastin was crucial for Matt.

When Matt and I left the exam room at Hackensack the day before, we went straight to a secluded corner of the cafeteria and called the clinical trial nurse at Duke. First, we confirmed that Matt did get the cure-delivering dose. (Because, priorities.) Then, we told her we needed help, either convincing Hackensack, finding another local oncologist who would administer the Avastin, or getting a last minute appointment at Duke. And, then, we asked the real question burning in our minds: Why hadn’t Duke returned Hackensack’s call anytime during the last week? We recognized that the Duke doctor was busy, but we were on a deadline she had imposed, we were trying to get the medication she had sold us on two weeks earlier.

The clinical trial nurse calmed us down, assured us that they would get in touch with Hackensack, clear up the confusion over how Avastin was being used in Matt’s case (not as a treatment, but as a steroid), and everything would be fine; no need to book last minute flights to North Carolina. We believed her.

But twenty-four hours later, on May 18, 2017, Hackensack and Duke had not even connected. No one was returning our calls or responding to our emails. We were in a virtual standstill, feeling all but abandoned, and desperate to get a plan—any plan—on the table. One thing Matt and I were terrible at, in life in general, was waiting. But there was only so much we could do from a distance without also destroying any goodwill we’d built up with the doctors. We had to wait, and stress, and text each other these poetic thoughts: Man what the freakin heck.

By the end of the day we still hadn’t heard a word. From anybody. Not even a quick email update. In the moment, it seemed as if the day had been a frustrating, unproductive waste. But, in looking back, I see that two important things did happen a year ago today while we waited for Duke and Hackensack to simply have a conversation.

One, those bathroom window blinds were (finally) installed.

Two, I made a phone call that would shape the entire rest of our year.

Remember on April 3rd I wrote about doctors who treated Matt with their heart and soul, who cried with me the day the final MRI was read…well, their part in the story is only just beginning. Because a year ago today, I called Columbia.

Not the most eloquent text I’ve ever sent, but there’s what frustration and feeling abandoned looks like in real time.

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