05.4.2008 | 10:54 pm
I went to bed Friday night expecting to go on a long singlespeed road ride on Saturday morning. I woke up on Saturday, though, thinking that I needed something that occupied my mind a little more completely.
Singlespeed mountain bike sounded about right.
I rode up the South side of Hog Hollow, a climb that takes half an hour, when I’m in great shape. I didn’t have a bike computer or watch on this ride, though. I wasn’t riding for time. I’m not going to be riding for time at all this season. I’m just riding for me for a while.
As I rode the mile of pavement from my house to the trailhead, I came across Lee Johnson, heading the opposite direction, clearly finishing the ride I was about to begin. He turned around and rode with me for a few minutes, asking — innocently — how my wife was doing.
I told him, answering as honestly and directly as I could, because I know I’m going to have to get used to answering that question. I was relieved that I had managed to keep it together, by and large, through the conversation.
He, like literally hundreds of others in the past couple of days, offered his support and prayers before he turned around and headed home, leaving me at the trailhead to my climb.
And that’s when I totally lost it.
I cried the whole climb up to the saddle of the Hog. Just bawled.
Weirdly, I thought as I climbed and cried that crying makes it harder to breathe and was robbing me of climbing power. And I thought that if anyone saw me right now, I was glad that they wouldn’t see my eyes (though the streaked face, running nose and mottled skin might have been sufficient clues for the astute).
Then I kept on climbing up Jacob’s Ladder, and kept crying the whole way up. I thought about how Susan and at least one of the kids had remarked on Friday that they had never seen me cry before then, and now I was well into a 45-minute jag.
Finally at the top of Jacob’s Ladder, I began the singletrack descent. It starts out tricky, with granite jutting out of the trail, and lots of sandy gravel that makes it easy to slide out. There are lots of different lines, and half the fun of the trail is picking which you’re going to take.
By the time I got to Ghost Falls, I realized something wonderful. I wasn’t crying.
In fact, I wasn’t thinking at all.
The intensity of the ride had fully occupied my mind. For the first time since Susan and I had been to see the oncologist and learned we were out of options, I felt…not happy, but at least not all knotted up. Clear.
Right now, clear is good enough.
So I dropped down Ghost Falls, attacking it a little more aggressively than usual. Using the brakes a little less often than usual. Chasing another moment of peace.
And I got it, too.
Then, as I climbed back up Clark’s in order to drop back down the South side of the Hog to get to Alpine, I felt selfish. I had added at least 3/4 an hour onto my ride time just to help me feel better. That’s 3/4 an hour that I was away from Susan when I could have been with her.
I know. I know. If someone else were telling me they felt guilty for taking an extra 3/4 an hour for himself under similar circumstances, I would tell him to go easy on himself; that he needs to take care of himself or he won’t be able to take care of his wife or family.
But that kind of rings hollow when your time with your wife has been cut short like this.
I won’t be taking any really long rides for a while. But I am grateful for close rides that give me a little time to get away from my head.
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05.2.2008 | 9:39 pm
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.
Good Start
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.
Closed Doors
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.
Radiation Oncologist
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.
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05.1.2008 | 10:01 pm
Susan’s been doing worse these past two or three weeks. It started with an inability to sleep, an inability that has become so stubborn that she couldn’t sleep even when we stacked Lunesta on top of Ativan.
And then the shakes would start, and the inability to hold still.
In the past few days, she’s lost the ability to focus on anything at all, even for a moment, and her coordination is gone. Susan, who has a gift for making beautiful jewelry from silver wire she bends into intricate chains and patterns, is no longer able to tie her shoelace or make a sandwich.
She gets lost on the way from the bathroom to the bed.
Severe depression is common after chemo or between rounds of chemo; the doctors said that’s what this is, and gave Susan anti-depression medication.
Today, though, they did an MRI of her brain, just in case. Afterward, Susan and I drove home, with the Doctor’s promise that he’d call as soon as he knew anything.
We got a call at precisely the moment we arrived home. We needed to go back to the Doctor’s.
“Now?”
“Yes, now.”
There’s no patient in the world who doesn’t instantly know that the news is bad if the Doctor wants to talk to you face to face. And you know it’s extra bad if the Doctor is staying late to talk to you the same day the tests are taken.
The only mysteries then — the ones we talked about on the way to the Doctor — were: how bad would it be? what were our options going to be?
I want to take a moment to say what a great person this particular Doctor we met with today is. He gave up his lunch hour to meet with us in the first place, and then stayed late to meet with us again the same day, so we wouldn’t have to wait another day in dread. At the end of our meeting with him, he gave me his personal cell phone number, with the instructions that I should call him tonight — no matter what time — if things get worse.
That is very unusual for a doctor to do.
Susan doesn’t have just one tumor in her brain, or a few. “There are too many to count,” the Doctor said. “They’re scattered through your brain like dandelion seeds.”
Susan hasn’t cried yet; I only have a little. We’re used to the notion of countless tumors in vital organs. And there’s a measure of relief in knowing what we’re fighting now, instead of being on the endless sleep aid / antidepressant merry-go-round.
For tonight, Seroquel and Ativan to help Susan sleep (at this moment she is in fact asleep, which is the best thing to happen today), plus some steroids to hopefully shrink the tumors to the point that Susan can get back her lucidity.
Tomorrow, we consult with the oncologist. I’m guessing there will be some radiation coming up right away, followed by chemo.
We haven’t given up. We’re not giving up. But I am scared.
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