May 25, 2017: Partner, Not a New Doctor

On May 25th, Matt emailed Duke and asked if they had made any progress on their promise to help find a doctor in the NJ or NYC area. He received this same day response: Please identify a site and contact them regarding if they would provide the Avastin infusion. Once you identify where you would like to go then we can assist with setting up.

Slightly formal. Slightly harsh. Slightly like they were breaking their promise and we’d been abandoned again.

With the holiday weekend coming, we had very little time to spend precious minutes complaining. We dove into our new mission: find a local doctor to administer Avastin. (Although, ever the hopeful optimist, Matt sent one last email to Hackensack pleading our case. It was a no. Points for consistency, I guess.)

We had three options. Columbia, who was unwilling to commit to anything until they received and reviewed all of Matt’s medical records and established a baseline relationship. Morristown Medical Center, where Matt’s first craniotomy took place, but they no longer had a neuro-oncologist on staff. And Sloan, specifically the doctor we’d seen in 2016 for a second opinion, the one who’d told us flat out that Matt only had 18 months and we should get our affairs in order. I’ve mentioned him before, mentioned how I viciously opposed dealing with anyone whose narrative didn’t match the one I’d written for us (the one that had us featured on a 60 Minutes special alongside all the other GBM survivors). On May 25th, I begrudgingly called him because, ultimately, we needed someone local and we already had a baseline relationship with him.

Sloan called us back same day and said the doctor would not administer Avastin unless we transferred all care to him. They would not treat us under Duke’s direction. Matt’s response to that answer was: Ha that’s funny. These fckin doctors tho. What he meant was, couldn’t Sloan see that we couldn’t walk away from Duke? We were at the beginning stages of a highly experimental clinical trial. We needed a partner, not a new doctor. Why was everyone so unhelpful?

When I started this post yesterday morning, I focused on the phone calls and emails, on cataloging who that day had frustrated and disappointed us, and why. But I missed the quiet story underneath, the one that showed how Matt and I split the phone calls, and vented our frustrations to each other, and admitted that sometimes we’d overreacted and yelled at a receptionist who probably didn’t deserve our wrath.

I would have completely overlooked that story in favor of recording our day if not for what happened after yesterday morning. Because yesterday was an impossible day in the post hope year. It was the kind of day when something as innocent as sifting through the mail triggered a grief reaction. It was a day when the kids needed a little extra patience, but I was on the phone with the hospital disputing a bill, and the leasing company for Matt’s car hadn’t called me back, and the vet emailed that Coco was overdue for a visit, and a dozen other issues all seemed to crop up at the exact same moment. It was an exhausting day with less than my finest parenting on display. Bring on the mom guilt.

Like May 25 last year, yesterday I spent the day making calls and getting nowhere. Once again I spent the day frustrated that the person on the other end of the line didn’t seem inclined to make the process easier. But unlike last year, after the kids were in bed and the calls were made, I threw myself a pity party because I’d lost the person who I could vent to, the person to step in to help parent when I didn’t have that extra bit of patience.

There’s not really a way to turn that positive. (I tried, trust me.) So, what’s the lesson? Solo parenting ain’t easy. (Obviously.) Hospital billing people don’t care that the date on the invoice is connected with all sorts of bad memories. (Not a surprise.) So I’m left with this: sometimes it’s okay to not learn a lesson, to just have a bad day and hope for a better one today.

Funny how hope keeps trying to creep back in.


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