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.
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.
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.
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.
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.
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.
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.
I love stories. I love listening to people tell stories, and I love to cram my own experiences into stories, changing, creating, and ignoring events as necessary to fit the pace I like. Eventually, I expect that today (i.e., Monday) — which started for me at 12:15 this morning — will resolve into a story.
Right now, though, it’s an extraordinary jumble of events that I have a difficult time believing fit into a single day.
I have a suspicion I won’t get to sleep until I type all this down — not sure why that’s true, but it is — and since hundreds of you took the time to express support to my quick message earlier today, I figure a lot of you would appreciate knowing what’s going on (as far as I know).
Monday, Just After Midnight
Susan woke me with these words: “I think I’m dying.”
I can’t remember what the order of my responses were, since they all gushed out of me in pretty much random order. I asked her what was wrong. I asked if I should call 911 or the oncologist. I told her she wasn’t dying. I asked her what I should do.
But Susan wanted to tell me she loved me and that she would miss me and the kids. And she was apologizing for having to die. And she couldn’t breathe.
I told her she couldn’t die and that I wouldn’t allow it. She looked at me, perplexed. My permission didn’t have anything to do with it.
But I could at least make phone calls.
I called the on-call oncologist first. He said I needed to call 911 and get my wife to the emergency room.
I called our neighbors second, told them I needed someone to come stay with the kids.
And I called 911 third. Weirdly, I took pride in the fact that even in the state I was in, I was answering questions calmly. I knew our phone number, for example, and my wife’s age and birthday and what meds she’s on. What a cool head I am.
I’m pretty sure it wasn’t necessary for the dispatcher to send the police and fire department along with the ambulance. At one point, there were nine people in our bedroom.
By the time they loaded her into the ambulance, Susan was only semi-conscious.
Then we went to the hospital.
At the Hospital
Susan started feeling some better as soon as she got some oxygen, at which point she started feeling like it had been a silly idea for her to come to the hospital at all. She also got it into her head that everyone thought she was either ridiculous or faking it.
I couldn’t convince her otherwise. And she still can’t shake these new feelings of intense anxiety and embarrassment.
This isn’t like Susan and it scares me more than when she couldn’t breathe.
The thing is, Susan’s vital signs weren’t bad at all. Which is nothing at all like saying, “she’s fine.” It just means that whatever’s wrong isn’t something an emergency room doctor can fix with a pill or an IV.
They wanted to run tests, but I knew — yes, “knew:” it’s strange how much practical medical knowledge a normal person can quickly gain when it’s relevant — that the tests wouldn’t lead to a conclusion that would be immediately helpful to us, and I furthermore knew that this hospital doesn’t play well with my insurance company.
So I told them I wanted to consult with Susan’s regular oncologist to get the tests he wanted.
That’s fine, the doctor said. And then, the Twilight Zone moment of the night. The ER doctor said, “Hey, do you happen to know Rick Sunderlage?”
“That’s not his real name,” I replied. The doctor didn’t get it, so I amended, “Yeah, he’s a good friend of mine.”
“Huh. We ride together,” said the doctor.
Small world. Or at least, small town.
So that brings us to about 4:00 am.
This Morning…And Afternoon
I got Susan home, and was so glad we have the ramp my friends built a couple months ago. Susan was really weak, totally unable to use the walker, and not very lucid.
Thanks to the ramp (built by the core team), the wheelchair (donated by a Fat Cyclist reader), and the stairlift (paid for by jersey sales to the Friends of Fatty), I had no difficulty getting Susan into our second story bedroom.
Which is to say, I owe a very large thanks to my friends — the ones I know and the ones I don’t — who have helped me set things up to take care of Susan.
We got to bed and slept in. Luckily, the kids had the day off school.
Once we were up, I set up an appointment at the oncologist’s. Unfortunately, he’s on vacation, so we had to make do with the nurse practitioner. We’ve met with her before though, and she’s helpful.
I told the nurse my two theories on what could be wrong. We’ve been tapering Susan’s Decadron dosage (again), and things went bad the day after we dropped to 4mg / day. We’ve had bad results before when trying to get off the steroids, so maybe that was it.
My other theory — the one I hate but can’t shake — is that the brain tumors are back.
The nurse agreed either of them could account for what’s going on. So we’ve upped Susan’s Decadron dosage back to 6mg / day. The nurse also scheduled an MRI for Susan’s brain on Wednesday. Shortly (an hour or so) after that, we’ll have a meeting with the oncologist.
And then we went home. To wait. Susan says she doesn’t even want to know. And a big chunk of me doesn’t want to know, either.
On the way home, we stopped by the grocery store, so I could pick up a prescription and a couple gallons of milk. Inside, it occurred to me that I hated being in a grocery store right then. So many people giving “polite stranger” smiles, and probably wondering why I didn’t return their smiles. I didn’t mean to be rude; I just wasn’t able to smile right then.
Two different neighbors took it upon themselves to bring dinner tonight. Both of the dinners were big enough to feed us for two nights. So we’re set for dinner for most of the rest of the week. I have great neighbors.
I’ve got the kids in bed, I’ve got the house straightened, I’ve got the dishwasher running, I’ve got one load of laundry in the washing machine, another in the dryer. I’ve got Susan asleep, medicated with her new higher dosage of Decadron. If we’re lucky, that will have been the problem and she’ll wake up feeling better and stronger.
I can’t remember ever being so simultaneously hopeful and scared for what the morning will bring.
PS: Morning Update: Susan’s able to get around with the walker today, much as she has been for a while. Very encouraging.
Susan couldn’t breathe last night, so she got her first ride in an ambulance. We spent most of last night in the emergency room, but Susan’s case isn’t the kind of emergency they’re used to dealing with.
I don’t know what’s going on and I don’t have time to write. I’ll explain when I understand and have a moment.
We appreciate your thoughts and prayers.
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