10.28.2008 | 5:36 am
Yesterday’s trip to the oncologist taught me exactly how easy it is to hear what you want to hear. Specifically, when last week I heard “dramatic improvement,” what I didn’t hear was the context: Susan’s brain is filled with too many lesions to count, and the ongoing inflammation can only be moderated — not eliminated — by steroids.
Yes, the size of the lesions had dramatically improved. But the truth is, the brain is delicate. When you throw a handful of gravel into it, the size of the individual pebbles is only one of the things that matters.
So while I’ve been pinning the blame of these episodes on Decadron, the fact is they would be happening regardless. The timing would just be different.
So: we’re up to twice as much Decadron now as we used to be.
But the truth is, it doesn’t matter much. Things are changing fast now.
Here’s what I mean.
As we got back from the doctor yesterday — around noon or so — and I had gotten Susan into the wheelchair to go into the house, the weather was so perfect I suggested we go for a walk instead of going into the house.
That sounded good to Susan.
So I pushed her around the neighborhood, loving the feel of Autumn: warm sun, cool breeze. The trees in the valley are changing colors, and the sound of a wheelchair rolling over crunchy leaves is incredibly soothing.
We talked, and Susan seemed — for the first time that day — to be happy and herself again.
After an hour or so she was tired, so I wheeled her home and got us lunch.
By the time lunch was over, she could no longer remember that we had been on the walk. She couldn’t remember the trip to the doctor. And for a while, she was certain that she was not at her home at all.
And she got worse as the day progressed. She’s now confused, lost, and afraid most of the time. It is unbearable for me to watch. Not so much that her reality is slipping; I expected that to happen eventually. What I hate is that it’s slipped into such an awful place.
So I spent the afternoon trying to answer the question: how can I be kind? Kind to Susan, and kind to the children, who can’t understand what’s going on and find themselves frustrated and scared when they try to answer Susan’s impossible questions (“Is that me walking around upstairs?” “Have I died?”).
The answer I’ve come up with is something like this:
I know how this will end now; the last chapter of Susan’s cancer is already written. I can’t control that. I can however try to exert some control over how Susan experiences this last chapter. And equally important to me: I can control how my kids experience it.
So we’re switching to hospice now, and the emphasis of the medication Susan takes will be on blocking the fear and confusion she’s feeling. I can try to make her time with the family pleasant for her, even if I can’t hope to have her understand it.
And meanwhile, I’m explaining as best as I can to the kids that mom has spent her whole life taking care of us, and now it’s our turn to take care of her.
There’s one big piece of this puzzle I haven’t figured out yet, though: I am clearly pretty messed up right now, but I’m dealing with it by staying extremely busy. I feel OK whenever I’m making myself useful. So far, that’s working, because I have a lot to do. But I know it’s not a permanent solution. I’ll get to that later.
For now I need to focus on my wife and kids.
Comments (493)
10.27.2008 | 6:40 am
Last weekend was the most difficult I’ve ever had, but it feels too personal; I don’t feel like I have the right to write about it yet. Plus, I don’t have the will.
The short version is that on Friday night, Susan became completely unresponsive. Her eyes were open but she couldn’t move at all. We went to the emergency room in one hospital, then to a different hospital to check her in, for insurance reasons.
As the weekend progressed, Susan’s consciousness came back; she is now more or less herself again, although very weak.
I’m certain it’s tied to reducing the Decadron dosage; the correlation is too strong for it to be anything else. But I don’t know what we’re going to do about it.
We’re seeing the oncologist this morning.
I’m really glad that my sister Kellene happened to be staying with us when all this happened. Thanks to her, I was able to focus on taking care of Susan.
Comments (128)
10.24.2008 | 3:57 pm
A Note From Fatty: A lot of people — friends, family, my boss — have heckled me for about two years about not having a FaceBook page. So now I’ve got one. But it’s a sad and lonely place for me now. If you’re on FaceBook, why don’t you go take a look at my sketchy profile and make me your friend?
For years — okay, maybe for just under a year and a half, people have wondered: Who is Bike Snob NYC? Why won’t he reveal his name, what he looks like, his home address, and his social security number?
It’s almost as if he wanted to retain some sense of privacy in his personal life.
Frankly, I cannot understand that impulse.
And, unfortunately for him, he’s now going to have to give up that mysterious persona, because I have a bona-fide picture of him.
How did I get the picture, you ask, with awe in your voice? I tricked him. I sent him a Fat Cyclist jersey, after which I asked him to send a photo of him wearing it.
Clever, eh? Darn straight it’s clever.
And furthermore, he — not detecting my clever ruse — actually fell for it.
Ha!
In fact, he more than fell for it. He double fell for it, by acting all gracious and sending me a brand new, not-for-sale-anywhere T-shirt, shown here.
I’d have shown a picture of me wearing it, but the truth is I don’t want it to lose its value by being used. In fact, after I took this picture I mounted it behind UV-protecting museum-quality glass.
Just so you can get the full effect, though, here’s a close-up of the image on the t-shirt:
After seeing this image, you no doubt have questions, such as:
- Who is the guy wearing that hat?
- What happened to his left eye?
At least, those are the questions I have. But I’m afraid to ask the Bike Snob himself.
Anyway, without further ado, here is the picture of Bike Snob NYC. I can guarantee it’s real, because he himself (foolishly) sent it to me.
Say goodbye to your anonymity, Bike Snob.
Comments (43)
10.22.2008 | 9:34 pm
Imagine — or try to, anyway — that you were expecting news that your favorite person in the world, the person you had chosen to live your life with, was about to die. But first, in order to get that information, you had to subject your favorite person to a battery of tests.
None of them comfortable, many of them painful.
Imagine what it’s like to sit for half an hour with that person in the doctor’s office while you wait for the results of those tests to be relayed to your doctor.
That is, in fact, a precise description of my afternoon. Up to a point.
But then, imagine that the doctor walks in with a big smile and says, “The results for your brain scan show dramatic improvement.”
Those are the words he used. Dramatic improvement.
And also: The tumors in your abdomen are not growing at all.
If you want to picture yourself as myself in this scenario, you now have to picture your whole life outlook suddenly turning right-side up.
This feels much much much better than when your life turns upside down.
I stood up and started shaking the doctor’s hand, an impulse I didn’t think about and probably seemed really odd to the doctor.
I expect he didn’t mind, though. I expect oncologists get to give good news rarely enough that they welcome any reaction like this any time they can get it.
What’s Next
I can’t even describe how happy I am. Susan’s brain tumors aren’t growing. They’re staying small. Further, the swelling that surrounds the tumors has gone down, too. Dramatic improvement wasn’t hyperbole.
Don’t get me wrong; I understand that the tumors are still there, and that they’ll probably grow again. But we have more time. And it feels so good to be able to say that.
There are tactics we’ve got to work on. We’ve got to figure out the Decadron puzzle, for one thing. That stuff carries some nasty side effects, the main one being that it’s terrible for bone density, and since Susan’s got cancer in her bones, this is a real problem. So we’re going to taper off again, but this time very, very slow, and with small increments. We’ll figure it out.
Thanks
I’ve been asking very frequently for your prayers and good thoughts, and you readers have delivered, overwhelmingly. Now, I wouldn’t presume to know how to divide up the pie of credit for this wonderful news we got today, but I certainly believe that you all get a big slice of it.
Thanks again and again.
Comments (295)
10.22.2008 | 12:18 am
First, some great news: Susan’s back. She’s able to get around again. She’s able to speak complete thoughts again. And — this is the biggest relief to me — she’s herself again.
Also, these really annoying twitches below her eyes have gone away.
So we’ve learned an important lesson: no more attempts to taper off the Decadron. I know Susan’s going to be disappointed that this means she’s stuck with the puffy face this brings, but it’s a side effect we can live with. And live with happily, now that we have had the alternative driven home, forcefully.
The Opposite of Christmas
As a kid, I could never sleep the night before Christmas. That is not hyperbole. I literally was unable to sleep. I would run through all the potential gifts I’d be receiving. I didn’t know what I’d be getting, but I loved thinking about the possibilities.
That’s kind of how Susan and I feel right now, except the opposite.
We’ve been talking, and both of us really wish we didn’t have to find out anything tomorrow. I mean, it’s hard to imagine that we’ve got good news in store for us, and since Susan’s about back to feeling OK, we’d both really like to put this behind us and skip the scan. Ignorance may not always be bliss, but by the same token, knowledge sometimes feels less like power than a kick in the stomach.
But Susan’s drinking her first pint of contrast solution right now, and taking a bunch of pills to combat her iodine allergy, so we’re doing it.
Why?
Mostly for one reason: if there’s something there that can be treated now, and in three months we find that it’s too late because we chose to stick our heads in the sand, I couldn’t live with myself. So Susan’s doing it for me.
There are other reasons, too. It’s possible, for example, that we’ll find that things are looking relatively good. It is, in other words, conceivable that we’ll be happy at the end of the day.
We could, on the other hand, find out that things aren’t good. This wouldn’t be a surprise, but confirmation like this hurts just as bad every time you hear it.
Here’s what I think, though. I think we’ll find out — and I say this as someone who has no medical expertise but has nevertheless gotten pretty good at knowing what’s going on with my wife — that there are tumors in her brain, but that they aren’t growing back quickly. This won’t be exactly cause for celebration, but it also won’t be anywhere near as horrible as I have been thinking things are.
The Best Auction Ever
Now let’s talk about something good — and topical — for a few minutes.
Shimano Alfine has teamed up with five bicycle frame builders to create one-of-a-kind bikes equipped with Shimano Alfine components to raise money for breast cancer awareness. 100% of the proceeds from the auction of these bikes will be donated to the Young Survival Coalition to benefit the quality of life for young women affected by breast cancer.
Check out the bikes you can bid on. Click on any of the pictures below to go to that bike’s auction page. [Update: the links from the pics work now; thanks to the folks who pointed out they were busted.]
Ellsworth Handcrafted Roxy
Vicious Cycles Custom Casual Agent
Rock Lobster Custom Alfie
Torelli Custom Lifestyle
Sycip Java Girl
I’m making a serious play for the Ellsworth, and am (at this moment) the current high bidder.
You’re welcome to (try to) outbid me.
Comments (65)
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