I spend, on average, about 90 minutes per day on this blog. About 70 minutes writing, about 20 minutes reading comments.
Of course, when there are more than 300 comments — every single one of them generous and thoughtful and encouraging — I spend quite a bit more than 20 minutes reading comments, and tomorrow I’m going to read them to Susan.
The point I was trying to make, though, was that when you spend so much time on something on a daily basis, you become pretty attached to it. This blog is by far my largest body of written work, and the people who read this blog represent a much larger community of friends — and now support — than I ever expected to have in this lifetime.
But I’ve spent some time today wondering how I can — and whether I should — keep it up. The answer was pretty simple, but it requires that you accept that — at least for a while — this blog is going to be serious a lot more often than it is funny.
Which is to say, right now I find it very helpful to focus my thoughts about the day by writing them down, and Susan has given me permission to share what’s going on in our lives. And sometimes, that will still be about bicycles and bicycling and bicyclists.
But not as much, for a while.
So here’s what’s happened today, which I think I can — without hyperbole — fairly call the worst one I have so far lived.
Last night, I mentioned that Susan was sleeping as I wrote, and how glad I was that she was finally getting some sleep. Well, Susan continued to get a good night’s sleep. Like eleven hours. So I will always be grateful to the Doctor we met yesterday who completely changed her meds regimen and ordered the MRI.
That same doctor called me this morning, asking how the night went. Seriously, the Doctor himself called me. And then he told me he’d been on the phone with Susan’s oncologist and had sent an appointment and had set an appointment for us to see a radiation oncologist today as well. And I’m pretty sure that, once again, the Doctor himself did this.
His name isn’t Doctor Nordstrom, but it should have been.
Next, we visited Susan’s primary oncologist. It was a short meeting, because she told us that we are out of options. Evidently, the brain is separated from the rest of the body’s bloodstream. Often, this barrier is good enough that even metastatic cancer can’t get through.
But Susan’s did.
The problem is, that barrier is definitely good enough that chemo can’t effectively travel through it.
The only treatment option we have open to us now, the oncologist said, is radiation therapy. And after that’s done, Susan will be better for a few months, but then the tumors will come back, and the brain can’t take another dose of radiation like that. So, absent a miracle, Susan only has months to live.
Probably, oncologists have to deliver this kind of news several times per year. I guess you get used to it. And the social worker was meanwhile trying to get Susan and me to tell us how we felt about this. I got the sense she really wanted us to cry for her.
Neither of us did. I know the social worker’s intentions were good — she had been the one who took steps to get Susan’s symptoms recognized as more than post-chemo depression — but she isn’t my counsellor, and there was no way she could fix what’s broken.
Susan said to her, “Elden opens up a lot more on his blog.”
“So do I need to start reading your blog to find out what you’re thinking, Elden?” the social worker asked.
I just looked at her, not answering. Knowing that this place wasn’t going to offer us any help or hope, I just wanted to get out, as fast as possible.
I cried a lot on the way back home, though, and Susan and I talked about the things we needed to. I’m not going into it here because living through that conversation one time today was all I’m up to. Those of you who have had this kind of talk know what I mean.
And those of you who haven’t had this talk think you know what I mean, but don’t.
At 2:30 today, we met with a radiation oncologist — the same one who had earlier taken charge of Susan’s hip. He told us what we can expect: some improvement following radiation, hopefully followed by as long of a period as possible before the tumors come back.
When they do come back, Susan will probably start sleeping a lot.
Then he showed us the MRI. It was like Susan’s brain is full of gravel and BBs. Surgery isn’t an option.
He told us the reason he had shuffled his existing schedule was because Susan’s condition is progressing so rapidly he didn’t want to delay even one more day. He wants to start a series of 25 radiation sessions (five days on, two off) starting tomorrow (Saturday). Susan will lose her hair again. There was a time when this would have bothered us.
When you do heavy doses of radiation, you’ve got to be precise about where you point that gun. So they make a form-fitting plastic mask that fastens to the table and restrains your head, locking it in place. Here’s Susan, having her mask made today.
Having that on her face for twenty minutes leaves an interesting impression:
It also gave her Kramer hair.
One More Talk
As Susan and I drove home, we agreed that now that we had all the information, we needed to tell our kids what is happening. Which we did, as soon as we got home.
I really have never felt so heartbroken in my life. The six-year-old twin girls made their peace fairly quickly, deciding that they’d better hurry up and give mom her mother’s day presents early, and trying to elicit a promise that mom wouldn’t die on their birthday.
I made that promise. I know, I can’t really make that promise, but I made it.
The boys — ages 12 and 14 — understand things better, and they — as am I — are going to be messed up for a while to come.
“Is it OK for me to pray for a miracle?” the 12-year-old asked.
“For sure,” I said. “That’s what I’m doing.”
Compared to this, the conversation Susan and I had earlier in the day was a walk in the park.
And Then Back to Daily Life
After this, Susan and I took the twins to their dance class recital, and then we went through the drive-through at the Purple Turtle to buy everyone their favorite kind of milkshakes.
No limit on the number of mix-ins tonight. Be creative.
And now, Susan’s asleep again, through the wonder of the Ativan and Serequol.
Tomorrow, I guarantee I am going to get in a nice, long, solo ride. Road singlespeed sounds about right, for some reason.