Jumbled Mess

I love stories. I love listening to people tell stories, and I love to cram my own experiences into stories, changing, creating, and ignoring events as necessary to fit the pace I like. Eventually, I expect that today (i.e., Monday) — which started for me at 12:15 this morning — will resolve into a story.

Right now, though, it’s an extraordinary jumble of events that I have a difficult time believing fit into a single day.

I have a suspicion I won’t get to sleep until I type all this down — not sure why that’s true, but it is — and since hundreds of you took the time to express support to my quick message earlier today, I figure a lot of you would appreciate knowing what’s going on (as far as I know).

Monday, Just After Midnight

Susan woke me with these words: “I think I’m dying.”

I can’t remember what the order of my responses were, since they all gushed out of me in pretty much random order. I asked her what was wrong. I asked if I should call 911 or the oncologist. I told her she wasn’t dying. I asked her what I should do.

But Susan wanted to tell me she loved me and that she would miss me and the kids. And she was apologizing for having to die. And she couldn’t breathe.

I told her she couldn’t die and that I wouldn’t allow it. She looked at me, perplexed. My permission didn’t have anything to do with it.

But I could at least make phone calls.

I called the on-call oncologist first. He said I needed to call 911 and get my wife to the emergency room.

I called our neighbors second, told them I needed someone to come stay with the kids.

And I called 911 third. Weirdly, I took pride in the fact that even in the state I was in, I was answering questions calmly. I knew our phone number, for example, and my wife’s age and birthday and what meds she’s on. What a cool head I am.

I’m pretty sure it wasn’t necessary for the dispatcher to send the police and fire department along with the ambulance. At one point, there were nine people in our bedroom.

By the time they loaded her into the ambulance, Susan was only semi-conscious.

Then we went to the hospital.

At the Hospital

Susan started feeling some better as soon as she got some oxygen, at which point she started feeling like it had been a silly idea for her to come to the hospital at all. She also got it into her head that everyone thought she was either ridiculous or faking it.

I couldn’t convince her otherwise. And she still can’t shake these new feelings of intense anxiety and embarrassment.

This isn’t like Susan and it scares me more than when she couldn’t breathe.

The thing is, Susan’s vital signs weren’t bad at all. Which is nothing at all like saying, “she’s fine.” It just means that whatever’s wrong isn’t something an emergency room doctor can fix with a pill or an IV.

They wanted to run tests, but I knew — yes, “knew:” it’s strange how much practical medical knowledge a normal person can quickly gain when it’s relevant — that the tests wouldn’t lead to a conclusion that would be immediately helpful to us, and I furthermore knew that this hospital doesn’t play well with my insurance company.

So I told them I wanted to consult with Susan’s regular oncologist to get the tests he wanted.

That’s fine, the doctor said. And then, the Twilight Zone moment of the night. The ER doctor said, “Hey, do you happen to know Rick Sunderlage?”

“That’s not his real name,” I replied. The doctor didn’t get it, so I amended, “Yeah, he’s a good friend of mine.”

“Huh. We ride together,” said the doctor.

Small world. Or at least, small town.

So that brings us to about 4:00 am.

This Morning…And Afternoon

I got Susan home, and was so glad we have the ramp my friends built a couple months ago. Susan was really weak, totally unable to use the walker, and not very lucid.

Thanks to the ramp (built by the core team), the wheelchair (donated by a Fat Cyclist reader), and the stairlift (paid for by jersey sales to the Friends of Fatty), I had no difficulty getting Susan into our second story bedroom.

Which is to say, I owe a very large thanks to my friends — the ones I know and the ones I don’t — who have helped me set things up to take care of Susan.

We got to bed and slept in. Luckily, the kids had the day off school.

Once we were up, I set up an appointment at the oncologist’s. Unfortunately, he’s on vacation, so we had to make do with the nurse practitioner. We’ve met with her before though, and she’s helpful.

I told the nurse my two theories on what could be wrong. We’ve been tapering Susan’s Decadron dosage (again), and things went bad the day after we dropped to 4mg / day. We’ve had bad results before when trying to get off the steroids, so maybe that was it.

My other theory — the one I hate but can’t shake — is that the brain tumors are back.

The nurse agreed either of them could account for what’s going on. So we’ve upped Susan’s Decadron dosage back to 6mg / day. The nurse also scheduled an MRI for Susan’s brain on Wednesday. Shortly (an hour or so) after that, we’ll have a meeting with the oncologist.

And then we went home. To wait. Susan says she doesn’t even want to know. And a big chunk of me doesn’t want to know, either.

On the way home, we stopped by the grocery store, so I could pick up a prescription and a couple gallons of milk. Inside, it occurred to me that I hated being in a grocery store right then. So many people giving “polite stranger” smiles, and probably wondering why I didn’t return their smiles. I didn’t mean to be rude; I just wasn’t able to smile right then.

Now

Two different neighbors took it upon themselves to bring dinner tonight. Both of the dinners were big enough to feed us for two nights. So we’re set for dinner for most of the rest of the week. I have great neighbors.

I’ve got the kids in bed, I’ve got the house straightened, I’ve got the dishwasher running, I’ve got one load of laundry in the washing machine, another in the dryer. I’ve got Susan asleep, medicated with her new higher dosage of Decadron. If we’re lucky, that will have been the problem and she’ll wake up feeling better and stronger.

I can’t remember ever being so simultaneously hopeful and scared for what the morning will bring.

PS: Morning Update: Susan’s able to get around with the walker today, much as she has been for a while. Very encouraging.

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