Susan’s mom and sisters (and one of Susan’s sister’s daughters) arrived yesterday afternoon to see Susan. Which meant, suddenly, I had time for myself.
Which meant, of course, that I was going to get out on my bike for a while.
The thing is, the temperature was hovering right around a hundred degrees. And while I can — and have — and do — ride in that kind of heat, it’s not my favorite.
And that’s when I remembered: I live near the mountains. Which means I can always climb to where it’s cooler. Seriously, between the shade and the higher altitude, it’s fifteen degrees cooler.
Thinking back to how great riding Tibble Fork was a few days ago, I decided to ride it again. But this time with a geared bike. And a working helmetcam.
I got the whole thing — all two hours of the ride — on video, but rather than put together a Cliff’s Notes version of the whole ride the way I usually do, I want to show you one particular section, in its entirety. That section of trail is officially named “South Fork Deer Creek.”
But we — the people I ride with — call it Joy.
We call it that, because that’s the feeling it brings. (And also because we like to give trails people names.)
After a difficult climb — three remarkably brutal uphill miles — there’s nothing quite like six perfect minutes of fast, swooping downhill. Trail that is so good that it fills your brain completely. There is no room for anything but pure joy.
Except for maybe it’s a good idea to reserve just a little bit of extra room in your brain for thinking about how it’s a good idea to juke left right now or you will hit that tree.
Tomorrow morning, a group of us will ride Tibble again. I’ll video it again, and I’ll show off some snippets of the rest of this unbelievably good trail.
But Joy deserves to be experienced in its entirety.
PS: Mud Springs — the second iconic descent in the Big Tibble loop — is the polar opposite of Joy and is just as good. It deserves — and will get — the full video treatment as well. Soon.
PPS: Thanks to the hundreds of people who commented yesterday. I really appreciate your encouragement and your support.
PPPS: I don’t want to give too much away, but very soon I will be doing my next big LiveStrong Challenge contest, and the prize will rhyme with “Orbea Orca with a Shimano Dura-Ace Di2 build.” I wonder if that’s too obvious of a clue.
Susan’s health is heading downhill pretty quickly now. She sleeps about 22 hours a day, waking mostly to ask for a little water to wet her mouth. The things she says sometimes make sense, but often they don’t. And a lot of the time, even when her eyes are open, she doesn’t respond to or look at me when I talk.
I know she doesn’t have long. I’ve known and expected this for years. But now that we’re getting close, I am afraid and overwhelmed and unprepared. Even for short-term things, there is so much I don’t know how to do.
School starts soon; the timing couldn’t be more awful. How do I make this easier for the kids? I haven’t chosen a mortuary or cemetery; I don’t know how and I don’t want to know how. I’m terrified of making calls and can’t stand the thought of comparison shopping. I hate being taken advantage of, but the thought of trying to be a savvy consumer right now makes me ill.
And my self-control is tenuous. Yesterday I tore into my 13-year-old about how since the cat is theoretically his, how come I — the one person in the family who vocally said he did not want a cat — am having to feed and clean up after the stupid thing? This conversation isn’t new, but I brought some fresh energy into it, and I did it unprovoked — totally blindsided the kid.
And there’s more, which I just spent about 45 minutes writing and then deleted, because I read it and found myself not liking the guy who wrote it.
So here’s the short version.
I am a mess, I am angry, and I am lonely. And I am ashamed that I am, right now, worrying about myself instead of the people who need me.
Basically, right now I’m exactly the kind of person I try to avoid.
A Note from Fatty: Susan continues to have some lucid periods, followed by some very scary and difficult times. We’ve adjusted her meds, however, so that things are generally better: when she’s lucid we can enjoy it, and when she’s not I have tools at my disposal to help her be calm, or if necessary, to sleep. Her circumstances haven’t really changed, but we’re adapting and making them as easy as possible for her and the kids.
I’ve talked about Tibble Fork before. It’s my favorite trail in the world. Lots of good memories associated with it, and it’s where I first learned to hate — then eventually love — climbing.
But I didn’t have video of it.
So, knowing a small group of us were going to ride it this morning, yesterday afternoon I put fresh batteries in the helmetcam and tested them to make sure they worked. They did.
Then, this morning, I made sure I took the lens cap off. Because, you see, I am becoming very smart about using my helmetcam.
I put the helmet on, then turned the helmetcam on.
Or, more precisely, I pressed the “On” switch for the helmetcam, after which nothing happened.
No, that’s not precise enough. Something did happen. Immediately upon pressing the “On” switch, I realized that after turning on the helmetcam yesterday to make sure the new batteries were good, I…left it on.
Which means that I still do not have any video of my favorite trail in the world. Which is too bad, because it was a really great ride. Great trail, beautiful views, terrific friends. It — I know I have said this an embarrassing number of times now — would have made a very good video.
Next time, I swear.
Meanwhile, here’s the group photo Dug took at the bottom of the trail for his writeup of the ride.
You know why I look so happy? Because I’ve just done 2500 feet of descending. And because I am enjoying my personal space.
Yesterday afternoon, I had an IM conversation with my friend Dug, where I gave him some of the details of how things are and where they’re headed.
Then, at the end, I suggested: “Hey, how about a ride this afternoon? My neighbor, Sherry, says she’ll be happy to watch Susan so I can get out.”
Dug already had plans, but he moved them. I think he could tell I wasn’t really just asking for a ride.
We drove to AF canyon, parking at the turnout to Tibble Fork, then rode our singlespeed MTBs up the pavement to the Timpooneke trailhead, across the Ridge trail, then up and down Mud Springs. That joins up to Tibble, which we took all the way down, then pavement back to Dug’s car.
The trail is in pretty bad shape — motorcycles really tore it up during an unusually wet spring — but the ride was still better than any I can remember in a long time. Good to get out on my favorite trails with Dug.
The ride stood in contrast with the rest of the day. As we rode back toward home, I thought back to the morning, and couldn’t believe how long the day had seemed. Or how long the week had seemed, and it was only Wednesday.
It was great to do something normal, something that had nothing to do with cancer, for a couple hours.
11:00pm
By 9:00pm, Susan was sleeping, so I fired up the DVR to catch up with the Tour. My mind boggled as Contador screwed his own team over in what I could tell was a rookie move from the second that ill-conceived attack began.
Between his selfish race tactics, his attitude of vindication, that ridiculous “pistol” salute — really, it’s the pistol salute more than anything else — I am finding it very difficult to cheer for that guy.
Contador’s definitely the fastest guy at Astana — which is saying a lot — but he’s no team leader.
Anyways.
At 11:00pm, I was surprised by the sound of Susan’s voice, clearly calling for me. She was awake and completely lucid. No longer babbling and mumbling, she asked me to explain what’s been happening, and how long she had been “out.”
I caught her up with the details, and to both of our surprise she remembered a lot of it. For an hour or so we had a very serious conversation, where I explained my choices and how she’s doing. I can’t even explain how grateful I am that I got that chance, and that Susan was able to tell me that I was doing the right things.
We also talked about a number of things that won’t go into this blog.
Then I had the boys come in — the twins are still in Colorado with Grandma — and we all talked and joked around for an an hour. The feeling in the house — which had been hospital-quiet and hospital-sad the whole day — went through the roof.
Now, this morning, I’ve just given Susan something to basically knock her out — she was terrified because she was absolutely convinced I had moved her into an Ikea and trapped her there, so she couldn’t get out.
I would never have thought that — after 21 years — an additional two hours would feel like such a huge gift.
Since we put in the morphine pump Monday, Susan’s been in less pain. But yesterday, she slept through most of the day.
It’s kind of funny: as soon as Susan stopped being in constant, terrible pain I stopped thinking about that, and shifted my concern to how much she was sleeping.
I started thinking that maybe I should reduce her morphine dose. So after talking to the nurse, I cut it back by 25%.
Then I took the boys to the new Harry Potter movie, leaving Susan in the care of one of her best friends, Sue.
About 2/3 of the way through the film, Sue called me, at which point I realized that — for the first time in my life — I had not silenced my phone. I felt stupid, but was simultaneously glad, because I did not want to miss this call.
Sue told me that Susan was crying, terrified, and hallucinating, and in terrible pain. (And yet, Susan had still wanted to make it clear she didn’t want us to miss the movie — even now, she still puts others ahead of herself).
I guess the fact that I’ve been giving Susan meds for so long has given me some useful experience, though. I told Sue to give Susan some pills, then I texted her the phone number and info she’d need to call hospice and have them walk her through resetting the morphine pump to a full dose.
I got back to the film in time to watch the big finale of the movie, but I honestly wasn’t very interested anymore.
House Call
The fact that I have his personal cel phone number shows the kind of doctor we have with hospice. And then, when I called him last night, asking for advice on how I could help Susan get through the night without hallucinations and paranoia plaguing her, he talked with me for a few minutes and then said, “You know what? I’m going to come over.”
Fifteen minutes later, he was at my house. At 10:30 at night.
I expressed my concern to him: I don’t want to drug my wife into a stupor if it’s still possible for her to have some clarity. But I also don’t want her to hurt.
It’s not an easy balance to reach.
After he talked with Susan, the doctor reminded me that Susan had started the hallucinations and paranoia well before we started the morphine. And when we cut back the morphine, the terror, pain, and hallucinations were much worse.
So we put together a new medication plan, as well as a plan for how much and when I ought to feed her. The truth is, her body is shutting down; that’s why she doesn’t want to eat. I have been constantly urging Susan to eat, and the doctor told me I need to stop doing that or I’m just going to make things harder for her. If Susan wants food, she’ll ask for it.
I understand this in my head, but how is a husband supposed to let his wife go hungry?
Today
Susan’s calm this morning. Her eyes are open, but she’s not seeing what’s in the room. She’s talking, but most of the time it’s not easy to tell what the words are.
I’ve learned that talking to her mostly just confuses her. Holding her hand and massaging her scalp do more for her than a lot of talking.
She’s asked for water, but not for food. And the truth is I’m not hungry either.
