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.
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.
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.
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?
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.
7 grapes, 4 spoonsful of ice cream, 5 bites of rice. That’s what Susan ate yesterday. That’s all she would eat.
There was also some discussion of Diet Coke and chocolate milk, which was the first undeniable signpost of where things are headed, and why I’ve been unable to sleep.
Yesterday (Monday) morning, I grabbed a Diet Coke out of the garage fridge as I came back in from my early morning ride. I was surprised to see Susan was awake — she usually sleeps in.
“Where have you been?” she asked.
“On a ride. I told you about it before I left, but you were pretty sleepy and probably don’t remember it.”
“Is that Diet Coke?”
“Yeah,” I said, holding aloft the big 2-liter bottle so she could get a look at it.
“Can I have some?”
“Of course.” I went and poured some into one of those sipper cups they make for toddlers — the kind that you can drink from while laying down, without spilling.
“Here you go,” I said.
Susan took a sip and said, “Are you tricking me?”
“You said you were going to get me some chocolate milk. This is Diet Coke.”
“Sorry, I must have gotten mixed up,” I said. “I wasn’t playing a trick on you. Would you rather have chocolate milk instead?”
“No, Diet Coke is OK.” Then, a moment later: “You probably think it’s really stupid to be drinking Diet Coke this early in the morning.” All while I am of course still holding my own giant bottle of soda where she can see it.
Stop Tricking Me
As the day went on, Susan had hours that were normal, but increasingly frequently — the rapidity of the change has been unbelievable — she’s been disoriented and disconnected.
I suggested we watch one of her favorite movies — Return of the King (last week, we saw the first two movies in the trilogy). “Right. How about we wait until they finish making it,” she said.
So, thinking that she’d be comforted by the sound of my voice even if she didn’t understand everything, I started reading aloud the book I’ve been reading to her and the boys: Watership Down.
After a couple of pages, Susan stopped me. “You’re just reading the same words over and over,” she said. “Stop tricking me.”
Then, finally, close to bedtime, I went and got Susan some chocolate milk for real, thinking maybe earlier she had been trying to express that she wanted some, but had said “Diet Coke” because she had seen the bottle at the time.
“I got you some chocolate milk,” I said.
She held the cup up, looking at it skeptically, then tasted it.
“Please stop tricking me,” she said, and pushed the cup away. Then she started to cry.
At the End
I know that this is not Susan talking. We’ve known each other twenty-one years, and she knows that I wouldn’t play a trick on her, not when she’s sick.
But the cancer is pushing on her brain and has started making Susan see me as someone who is not to be trusted. And I worry that this is just the start, considering how fast things started moving over just the past couple days.
What greater slap in the face could cancer give me, than to make my wife fear and suspect me as I try to take care of her at the end of her life?
There just doesn’t ever seem to be an end to the ways it can find to injure and insult us.
I know I said I was going to take a week off, but I also know that a lot of you care a lot about Susan and how she’s doing. And besides, sometimes it’s helpful for me to write things down, to help me make sense of and remember them.
The very short version is: Susan is in incredible pain, and I’m scrambling to block it as best as I can.
The longer version is that on Thursday, Susan had to hold perfectly still in order to not feel like she was being stabbed with a knife.
I asked the doctor to come over (side note: the doctor just bought a Gary Fisher Rig, so we both have to make a conscious effort to not talk about mountain biking whenever he’s here). The doctor outlined our options as basically being to start steroids, as well as increase pain medication either through pills or through an IV.
Susan didn’t want to go near the steroids, in spite of the pain — I’m afraid both of us have such bad memories of her last encounter with steroids that even when desperate, we’d rather try just about anything else.
I wanted to go with the morphine pump, because it’s the more aggressive option and delivers pain medication constantly and directly, and I just didn’t see pills as being able to help that well.
Susan, on the other hand, didn’t like the idea of yet another tube being permanently attached. Plus, going to a morphine pump feels like you’re crossing a line.
So we went with extended release morphine pills, with immediate release morphine to supplement for breakthrough pain. No more Lortab — that’s too weak of sauce (and the pills are too big and hard to swallow) for Susan now.
And she’s taking five times as much as she used to be.
But it’s not enough. She’s still hurting, bad.
So I just called the hospice people and said how things have been going, and told them I wanted to revisit the morphine pump idea. I just can’t have Susan hurt this much. Even if it makes her sleep 16 hours a day, I can’t have her hurt so bad.
I hate cancer so much.
(100 feet of 1.25″ PVC pipe, 4 end caps, 2 elbow joints and 50 T-connectors)
(Ryobi Table Saw)
Except a Vague Picture
in My Head
Roomy parking for 8 bikes
PS: This post rescued from my Spaces Archive.
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