8.9

We didn’t leave for Emory expecting a good day. We left expecting a long one — a transfusion day, the kind where you pack snacks and patience in equal measure. A usual “Emory Day,” which for us means Mondays. We know the flow. The expectations are reasonable. It’s a smooth routine at this point. When you process the amount of “news” that we do, some of it you take like an extra napkin with a meal — barely worth noticing. Other times you don’t know what to do with it, because it’s so unexpected, or so shocking, that it doesn’t fit the shape you were braced for.

Little Sally — my car, still mid-rebuild, still nursing a P0022 code — got us to the essentials, but it was a challenge. Every time I pressed the gas, there was a half-second where I didn’t know if she’d answer. So the drive became its own small ordeal: stop, refuel what I could, drive, watch the needle, stop again. We rolled into the Emory garage with maybe five miles left in the tank, knowing we’d have to repeat the whole thing on the way home — God willing she’d make it.

Car anxiety. Gas anxiety. Heat — Little Sally’s AC has slid so far down the repair list it’s basically theoretical. That’s the state we were in before we’d even parked. Before anything good had happened yet.

The Starbucks Line

There’s a Starbucks in the atrium. I parked Melody in a spot near the counter — not really “in line,” more the kind of spot that could look like the end of one — and stepped away to the bathroom for thirty seconds, maybe a minute.

It’s a bit of a routine for the sake of routine, more than for the coffee. A break between the two or three places we’re seen at on Emory days. There’s something about a warm drink, a piano playing somewhere nearby, the smell of the machines, and the hustle of the atrium — nurses, doctors, patients, families, vendors, pharmacy reps.

We’re all there for the same reason. Some with more experience at this than others. Some with the means to want more than a plain coffee, most of us just there for a small cup of something warm — unified behind the same short wait, letting the person ahead take their turn. Top provider in the nation. New hire on their first day at the front desk. Same line.

I try to park Melody where she can see something, and where she won’t get bumped — not tucked away like something to step around. Be honest with yourself for a second: most of us put blinders on around a wheelchair. Not out of cruelty. Just because it’s awkward, and we’re afraid of getting it wrong, so it’s easier to just not look. Just keep walking.

Usually, people just walk around her there — she’s not really in the line, so there’s nothing to ask. This time, someone did.

When I came back, she was smiling in a way I don’t get to see very often anymore. While I was gone, someone had turned to her and asked: “Are you in line?”

Four words. Most people don’t ask. Most people just assume the answer is no and walk around the chair like it’s furniture. This time, someone checked. Someone looked at her long enough to wonder.

“I was seen as a person,” she told me.

If you’ve never used a wheelchair, that sentence might sound small. If you have, you already know why it isn’t.

The Number

We’re good at this — predicting her hemoglobin before the labs confirm it. Symptoms, energy, color, all of it adds up over months of practice. I’ve won more weeks than she has, if we’re keeping score. Which we’re not. (We are.)

This week, we were both wrong.

She’d had a transfusion the week before, which should’ve pushed her hemoglobin up about a point. Based on her symptoms, we predicted maybe a 1-point drop from there — which honestly would’ve still counted as a win, compared to a swing we once saw of 2.4 points. Instead:

My first response to the nurse was that it had to be wrong. She checked. It wasn’t. I asked about false positives — genuinely, not accusingly — and she told me they happen, but rarely.

That question would’ve gone very differently with her old provider. That 2.4-point swing I mentioned — that happened there. Hemoglobin doesn’t move that much in twelve hours. Something was off. But instead of anyone actually looking into it, my notation got waved away and the number got filed under “false lab.” Case closed. That was the reflex at Piedmont — the ED, the providers, the infusion clinic. Easier to say than to actually investigate.

So when the Emory nurse genuinely considered the possibility of a false positive — actually treated it as a real question worth asking, not just a phrase to make me stop asking — I didn’t know what to do with that either. We’ve gotten good at predicting her numbers from her symptoms, because we’ve had to. Providers use that same kind of pattern data. It never occurred to me that a provider would take a strange number seriously enough to double-check it, rather than just naming it and closing the file. Again — this is the Emory difference. Adult Healthcare.

The next day, completely separately, her monthly DaVita labs came back.

8.9.

Two labs, two systems, one number, seven days apart. Not a fluke. Not a mistake. Just… stable. We’re thankful to have both — when the numbers agree, it’s the closest thing to certainty we get.

I understood the number the second I heard it. I could’ve repeated it back to you, explained exactly what it meant, five minutes after the nurse said it. That part was never the problem.

I guess that’s what happens when you’ve been living in the valley long enough. Good news doesn’t always arrive all at once. Sometimes it has to earn the right to be believed.

The Hangover

Good news doesn’t turn off a body, though. That night Melody was wired — up too late, then asleep too late. The next morning started fine and then didn’t; two days, barely one full meal between them, side effects that don’t care what the labs said. That was how the week ended for her physically. And yet — in her own words, she felt good, genuinely good, for a few days that same week. That’s a win. We’ll take it.

“I would take this over low hemoglobin,” she said — a nod to the couple of rough days with nausea and vomiting that had come before it. Perspective, even in the middle of a hard stretch.

I mentioned to our neighbor, carefully, that if this stability holds, we might be looking at a few good years instead of one. I’d assumed they understood, after all these months of updates and prayers — honestly, one of the best examples I’ve seen of what loving your neighbor actually looks like. It still landed like a gut punch. They hadn’t known how serious this really is.

That may be a shock to some of you reading this too. Fair enough. I want to be realistic: the goal right now is to stabilize her symptoms. That’s the best medicine currently has to offer. There’s hope — real research, real projects happening — that a breakthrough or even a cure could come. But we try to stay grounded in the facts as we know them today, and plan accordingly.

That same neighbor has fed us, helped with money more than once, and lent us a log splitter to help get ready for winter. Most of the scrap metal pile in our yard came from him too, waiting on a recycling run. Small-town math: the same week someone doesn’t know how bad it’s actually been, they’re also the reason we’re eating.

Melody wore her “Millar” shirt to Emory. Second time. Best Emory day yet. It’s staying in rotation.

The laundry — normally a 3-day cycle. This week it took til day 3, because the first two planned days fell through, the way plans do around here. It sat there finished for two days before I got to it. 5am comes fast when midnight sneaks up on you these days.

Thursday

Then Thursday night, the storm came through and took a high-tension line clean off a tower. We lost power for almost 24 hours. It fried a charger and our internet line in the process. Thankfully, we were able to get back online Sunday night, after a couple of calls to the provider. The dialysis machine needs an internet connection, and so does most of my income.

The next morning, I went out to check on the hives and found the line down right between two poles — draped straight across two of my mangled colonies. It was twisted, no insulators visible, the kind of thing that reads as dead weight, harmless. So that’s what I assumed. Power was out at the house anyway; why wouldn’t it be out here too?

It wasn’t. That line was still live.

I didn’t touch it. But if I’d reached in trying to save the bees — pull the line off, untangle a frame, anything — that assumption would’ve cost me everything. Turns out “looks dead” and “is dead” are two very different things, in wiring and in a lot of other places too.

It also knocked over two of my beehive colonies. One will recover before winter, which is good. But that hive’s honey is gone entirely — supers spilled straight out onto the ground.

So — Was It a Good Week?

Yes. Genuinely. The best labs Melody has had in months, across three different treatments, on the same day a stranger in a Starbucks line made her feel human instead of invisible. “I haven’t felt this good in years,” she told me. Her exact words.

Also: a car running on fumes and a bad sensor. A neighbor blindsided by how serious this really is. A colony gone. A day and a half without power. Barely a full meal in two days. Laundry that took three tries.

I don’t have a tidy way to close this one. Maybe that’s the point. The good week and the hard week were the same week. I don’t fully know what to do with that yet.