07.21.2009 | 5:29 am
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?”
“What?”
“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.
Comments (283)
07.20.2009 | 11:15 am
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.
Comments (173)
07.19.2009 | 5:53 pm
(100 feet of 1.25″ PVC pipe, 4 end caps, 2 elbow joints and 50 T-connectors)
+
(Ryobi Table Saw)
+
No Plan,
Except a Vague Picture
in My Head
+
2 Hours
=
Roomy parking for 8 bikes
PS: This post rescued from my Spaces Archive.
Comments (17)
07.17.2009 | 8:34 am
I know people who are able to wake up, take care of business, get dressed, get their bike ready and be riding within ten minutes.
I am not one of those people.
Today, for example, my preparation to bike to work actually went really well. Here are the steps I took. The times are guesses, but probably pretty close to reality.
- 7:00am: Wake up (no alarm clock)
- 7:01: Assess whether there’s a good reason to not go riding
- 7:01: Bio break
- 7:04: Sit on bedroom floor, wondering who I am and why I’m sitting on the floor
- 7:09: Get dressed to ride
- 7:11: Grab messenger bag (cleverly packed last night) and kiss wife goodbye:
- 7:13: Top off tubes
- 7:14: Fill water bottles
- 7:15: Figure out how to route headphones and carry new iPod (birthday present from wife, currently loaded with Anansi Boys audiobook)
- 7:17: Bio break 2
- 7:24: Put on bike shoes and helmet
- 7:27: Out the door
Ladies and Gentlemen, Meet Mr. Disorganized
Like I said, today was a good day. I took half an hour to get on my bike on a good day. And most days aren’t that good. Here’s a more typical itinerary for me getting going on a ride.
- 6:00am: Wake up (with alarm clock)
- 6:01: Bio break
- 6:02: Go find where I left the messenger bag previously
- 6:04: Empty messenger bag
- 6:06: Find clothes for work
- 6:14: Get dressed to go riding
- 6:15: Try to remember whether I already have a towel at work
- 6:16: Go get a towel
- 6:17: Look outside to see if maybe it’s raining or something
- 6:18: Go find bike clothes
- 6:20: Put on shorts, jersey, one sock
- 6:21: Look for another sock
- 6:29: Decide that today’s warm enough that I don’t need to ride with socks at all
- 6:30: Head into garage to get bike ready
- 6:31: Top off tubes
- 6:34: Lube chain
- 6:36: Look for gloves
- 6:40: Decide that today’s warm enough that I don’t need to wear gloves
- 6:41: Head back inside to fill water bottles
- 6:42: Start looking for different water bottles; current one is funky-smelling
- 6:45: Back into the garage to put on helmet and glasses
- 6:46: Back into kitchen to wash sweat off glasses
- 6:48: Back into garage to put on shoes
- 6:49: Take off shoes just after I put them on, in order to go back inside for bio break 2
- 6:50: Bio break 2
- 6:59: Back into garage to put on shoes
- 7:00: Back inside (without taking off shoes, and hoping my wife won’t see) to fetch cell phone
- 7:01: As long as I’m inside, I may as well check email before heading out, just in case anything crucial needs taking care of before I head into the office
- 7:12: Back into garage to go, for real this time
- 7:13: Back into the entryway to grab my wallet
- 7:14: As long as I’m inside, maybe I’ll grab a Clif bar. I may get hungry along the way:
- 7:15: Actually get on my bike and leave
I swear, it’s amazing I ever get out at all.
PS: This post rescued from my Spaces archive.
Comments (23)
07.16.2009 | 12:02 pm
Hey, I’ve reached some kind of threshold. Between fretting constantly over the pain Susan’s enduring (it’s worse than it has ever been before but I’m just not able to go into it right now), taking care of my family, some behind-the-scenes work for Team Fatty, and trying to get myself into decent enough shape that I won’t embarrass myself at Leadville, I am maxed out. Cooked. Fried. Toast.
Can toast be fried? How about if you batter it and then deep fat fry it? That sounds good.
Anyway, I’m going to take a short blog vacation. Starting tomorrow, I’ll be moving a few of my favorite older posts from my old Spaces archive, planning to do that ’til next Thursday. So unless you’ve been following this blog way longer than is healthy, it should still look like I’m writing new stuff.
When I come back, I intend to be tanned and rested. Sure, it’ll be a weird cyclist’s tan, but still.
Comments (57)
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