Before I begin today’s post, let me defuse it, because while it would be the easiest thing in the world to make this a dramatic and frightening post with a twist ending, that’s only entertaining in the movies.
Anyway, it sure didn’t feel entertaining as I lived it.
So: while it won’t seem like it for a lot of this post, Susan comes out of it OK.
But that doesn’t change the fact that Friday was one scary day for me.
Last Thursday, something changed about Susan. She became weaker. Much, much weaker. Where she had been able to get around safely — albeit slowly — with the walker, suddenly her knees started giving out every couple of steps.
Susan never fell, though. She’s learned to be extremely careful in how she gets around, and doesn’t take a step without being certain that should her legs buckle, she can support herself with the walker, a rail, or something else.
She’s learned to not trust her legs, essentially. Consider how different your life would be if you had to think that way. To not be able to assume that when you put weight on your leg, that it would hold.
Susan’s feet have been numb — not entirely paralyzed, but effectively without feeling — for more than a month now, but on Thursday some feeling started coming back.
And it felt a lot like how your legs feel after they’ve been asleep for a long time and now they’re waking up. Buzzy, and painful. Enough to warrant breaking out the Lortab, which Susan doesn’t often do.
On Friday, Susan could no longer get out of bed by herself. Or get into the car by herself. Or do anything by herself. Her strength had abandoned her completely, in record time.
By coincidence, this was also the same day she had an appointment with her oncologist. It’s a good thing we have the ramp in the garage now, because there’s no way Susan could have made it down the two stairs; she would have been trapped in the house.
The doctor ordered some CT scans, but couldn’t really offer a lot more than sympathy. The fact is, once cancer has entered the spine and brain like they have with Susan, you can radiate, and that’s about it. And we’ve already done that.
There’s a chance, the doctor said, that the symptoms were caused by coming off the Decadron too fast, so Susan should go back on and we’d see if that had any effect.
He didn’t sound hopeful.
So we went to our favorite little Italian restaurant for lunch (La Dolce Vita, for those of you who are familiar with Provo, UT), then came home.
And then Susan slept for the rest of the day. Just slept and slept. She couldn’t stay awake, no matter what.
And I started quietly panicking.
I took care of the kids. I took care of Susan. I didn’t call anyone and ask for help, because I didn’t want to say what I was worried about out loud. But one thought kept running through my head over and over: this is what it’s supposed to be like when the brain tumors come back. This is how it ends, and it’s happening now.
And it’s happening fast.
If you’ve ever been in a situation where you can see disaster coming — like an unavoidable serious car crash or bike crash or whatever — and you’ve had that moment of terrified certainty that you were about to die, you know how I felt, except that’s how I felt the whole afternoon and night.
Later, Susan told me she was sure that’s what was happening too, but she still couldn’t help but sleep.
Saturday morning, Susan told me she felt better. She didn’t have the compulsion to sleep. She was able to sit up again. She was able to move around using the walker again — first tentatively, then increasingly confidently.
Just 24 hours back on the Decadron, and Susan had gotten her mobility back. If that’s even what it is. I don’t know for sure. It makes sense, though: Susan went off the Decadron on Wednesday, and Thursday is when she started losing mobility. She went back on it on Friday, and by Saturday she was doing better.
Looks like we need to wean her off the Decadron more slowly next time.
My sense of relief manifested itself in a weird form: home improvements. I mounted a permanent rail in our bathroom, so it’d be easier for Susan to get in, out, up and down.
Susan says it’s one of the nicest things I’ve ever done for her. And it really helps. (And so far, it hasn’t pulled out of the wall, which is really great, considering my general level of handimanitude.)
Looking at this photo, I just noticed that I haven’t cleaned up the sawdust on the floor.
Next, I put in a new hose-style showerhead, making it a lot easier to help Susan get clean:
As an interesting aside, one of the real perks of us both being bald is a really clean, spartan shower. No arrays of bottles of various shampoos and conditioners. No hair clumps. Just two bars of soap (mine’s Dial, hers is Dove) and a razor (mine).
Next up: putting a rail in the shower. I’m not sure how to drill through the tile yet, though. I’ll probably bug Bry about helping me with that; he’s going to regret ever having met me.
Like I said, everything’s OK, this time. But this last few days has told me something about myself that I can’t honestly expect to change: I now expect the worst when anything goes wrong with Susan. To tell the truth, I’m still having a hard time believing that she’s OK now; it’s difficult for me to believe that something could actually get better that fast.
It’s like when she had a cold a couple of weeks ago: I was sure the lung tumors were back, even though everyone else in the family (except me) had the exact same cough she did.
I can’t help it: I expect worst-case scenarios all the time now. When I sheepishly told the doctor this, he said, “Well, of course you do.”
And I can’t even begin to describe the relief I’m experiencing at being wrong this time.
It’s not every Saturday night that I post, but on the other hand, it’s not every Saturday night that I get a photo of someone with the Fat Cyclist clydesdale freshly tattooed on their arm.
Folks, meet TC’s new tattoo:
And he’s even wearing a Fat Cyclist t-shirt for the occasion.
I owe TC $100.00.
PS: TC got ahold of me and told me to make that $100 a donation to the Lance Armstrong Foundation. Very cool. You can see that I have made the donation in the scrolling widget on ClydeSteve’s LiveStrong Donation page.
It’s been a while since I’ve talked about how Susan’s doing. There are a couple of reasons for this, neither of them very good.
The first reason is that how Susan is doing is complex — it’s not as simple as saying, “She’s doing really well” or “she’s not doing so great.”
In some ways, she isn’t doing so great. Something I don’t think I’ve mentioned on this blog, for example, is that the day before I was supposed to go to Leadville, I decided not to go. Susan had fallen, twice. One of the times she fell was against the sharp threshold of the shower, badly bruising her shins and nicking one of those shins.
Now, a nick wouldn’t normally be much of a problem, but remember: Susan’s on coumadin (a blood thinner meant to prevent any more blood clots forming in her legs). She started bleeding profusely, and I was more than mildly freaked out. We got it under control, but I did not want to leave her to go on a trip. And I wouldn’t have, except Susan made me. She said I wasn’t allowed to send her on the guilt trip she’d go on if I didn’t go on my Leadville trip.
So I went, but first I made sure Susan had lots of help.
And even though Susan’s now done with the radiation on her spinal cord, she hasn’t got much of her mobility back. She can get around with a walker in the house, but only slowly, and everywhere else she’s in a wheelchair now. Susan observed last night that there’s no way she could get into any of our friends’ houses now, and going to the book club she likes so much is going to be difficult, too.
In other ways, she’s doing really well: her mind is clear and sharp, which I am incredibly grateful for. The scooter has turned out to be a terrific thing to have; she and I have been taking the girls to school, and that’s really the highlight of my day.
Pills, Pills, Pills
Another piece of great news is that Susan’s made it through her first two-week course of pill-based chemo (Xeloda, if you’re curious). It didn’t go entirely smoothly — after the first few days, the inside of Susan’s mouth developed a painful batch of blisters. So she stopped, let the blisters fade, and then started again with a slightly lower dose — four pills per day instead of five. Since then, the side effects have been manageable.
But the Xeloda is just the tip of the pharmaceutical iceberg. Susan’s now on a huge array of drugs — or, excitingly, is either getting off them or is getting to take a break from them. And what’s striking is that a lot of the drugs you take as part of your fight against cancer are to fight the side effects of your cancer treatment.
Here’s what’s either on the pharmaceutical menu or has recently been on the menu:
- Xeloda: The chemotherapy pill. Having taken this for two weeks, Susan now gets a week off before taking it for another two weeks. There’s no finish line for this kind of chemo; Susan will be taking it indefinitely. This stuff’s expensive — our copay’s about $500 / month.
- Zofran: The Zofran is to combat the nausea the Xeloda otherwise brings on. Susan takes it half an hour before taking the Xeloda. Since she isn’t taking the Xeloda right now, she also doesn’t have to be taking the Zofran.
- Decadron: A steroid used to fight the side effects of the radiation. Susan just finished tapering off the Decadron — you’re not supposed to quit it cold turkey, or you’ll incur serious problems. Susan’s really glad to be done with this, because it weakens her already-weak legs and puffs her face up.
- Prilosec: An over the counter heartburn medication Susan was supposed to take to counter the side effects of the Decadron — upset stomach and even ulcers. Yes, the Prilosec was a medication to counter the side effects of a medication which was used to counter the side effects of the radiation. It’s like a row of dominoes. Now that Susan’s off the Decadron, she’s off the Prilosec, too. Yay!
- Coumadin: A blood thinner to prevent blood clots in her bloodstream, which are a side effect of Susan not being able to move her legs around much. This stuff’s tricky — don’t take enough and it doesn’t do any good. Take too much and it becomes poison. So Susan has to get tested every week to see what her PT levels are (I don’t know what PT stands for), and then her dosage gets altered. Currently, Susan takes a half pill on even days and a full pill on odd days, and the dosing could easily become even more complex than that.
- Seroquel, Ativan: A combination of drugs that help Susan get to sleep, something she’s been unable to do on her own since the tumors got into her brain.
- Lortab: For pain.
This may seem like a lot, but Susan and I are both excited about the fact that — for this week at least — Susan doesn’t have to take any of the first four drugs on that list.
A Brick for Susan
Susan and I continue to be surprised and amazed at the kindness people show us. A couple days ago, Susan got a letter from the Huntsman Cancer Foundation, saying that:
Because of the many donations we have received in honor of Susan Nelson, we would like to have a brick made honoring you. It would be placed along the walkway between the Huntsman Cancer Hospital and Institute. It is a beautiful location, offering sweeping views of the Salt Lake valley.
You may remember that Susan had her hip replaced at the Huntsman Cancer Hostpital, and the treatment she received was nothing short of stunning. So I love that Susan’s being honored there, and I love that people are donating to this really excellent organization.
I expect some of the donations this letter was referring to are from the raffle for the 29″ SS townie done at the Frozen Hog race last February.
Thanks to all of you, again.
A couple of days ago, MikeRoadie — a frequent commenter on this blog and the guy I’ve been helping raise money for for his LiveStrong Challenge, though we’ve never met in person — emailed me a photo from his speech at the dinner honoring the top fundraisers.
I replied, “Waitasecond. You gave a speech, there? What did you say?” And MikeRoadie — lucky for us — still had his notes, which he sent along.
Since the speech is all about you — the folks who raised $37,500 in the Ibis Silk SL Raffle — I wanted to reprint it for you.
There is an old saying we’ve all heard, “If you want something done right, better do it yourself”. This is especially true when it comes to our mission. No one else is going to provide the funding for life-saving cancer treatments. The government can’t be counted on to do it for us.
It takes an ARMY, and that army has to grow everyday! Sick or well, rich or poor, busy or not; there is something that each one of us can do everyday to spread the message.
I’d like to thank FatCyclist.com and its readers; a thousand of my closest friends, none of whom I have ever met, for making it possible for me to be here tonight. I’ll be riding tomorrow in support of Fatty’s wife, Susan. If you see me on the road, please stop and have your picture taken with me a show of support.
WIN Susan. Live Strong, everybody.
This is my favorite speech, ever, and not just because it’s only one minute long.
And here are a few of those photos MikeRoadie is talking about in his speech:
One thing this cancer battle has done for me: I’m much less of a cynic than I used to be. I see firsthand, over and over, that when people are given a chance to do something good, they jump at it.
Last Friday, I made an exception.
On ordinary weekdays, I don’t drive out of my way to go on a ride, because I don’t have a lot of spare time, and I have plenty of good riding right out my front door.
But, as I mentioned, last Friday I made an exception.
This exception was due to the fact that Kenny had installed his new belt drive on his Spot 29″ SS, and I — like anyone with an ounce of bike nerd in him — wanted to see it.
And by “see it,” I of course mean, “try it for myself.”
How to Choose Your Riding Buddies
Luckily for me (and not quite so luckily for Kenny), we’re fairly compatible for bike swaps. But what do I mean by “fairly compatible?” I’m glad you asked. Here are the bike swap compatibility metrics.
- Bike Size: Kenny and I ride the same size bikes. We’re an excellent match this way.
- Inseam: Our riding height is within 1″ of each other — I’d guess that Kenny’s saddle-to-pedal distance is 1cm greater than mine.
- Pedal or Shoe Size Similarity: Kenny rides with Eggbeaters, I ride with Time ATACs. (As an aside, I have a theory that everyone who rides with Eggbeaters have formerly ridden with ATACs, but were seduced by the weight savings. My theory continues that everyone who rides with Eggbeaters will eventually move back to ATACs.) This is not optimal, but our shoe sizes are within 2 sizes (European) of each other. I wear a 43, he wears a 45. This works better for me than it does for him.
- Setup peculiarities: It’s helpful to both parties if neither of you have odd bike setups. This is where I fall off the wagon a bit. I ride with Mary bars, which freak everyone out at first (especially on the downhills), and I have my brakes set up for the middle finger. Oh, and I put my saddle on backwards. Some people find that uncomfortable.
- Saddle similarity: Kenny and I both ride the Selle Italia SLR. Apart from the fact that mine faces the opposite direction of most people’s (some people call it “the wrong way,” which I find an unnecessary and harsh value judgement), our saddle preference match is ideal.
- Desirability: Kenny has a bike worth borrowing. If he didn’t have a really interesting bike, none of the other metrics would even matter.
If your compatibility in any of these metrics fails utterly, a bike swap is simply not possible. In which case, I recommend you eschew these non-compatible bike riders and begin to find yourself a more suitable set of riding buddies. Preferably, riding buddies that are approximately your size, use the same pedal setup as you, and who spend lots and lots of money on equipment you can then try out for free.
Bike Borrowing Etiquette
Before I get to my disappointingly short and ill-informed impressions of Kenny’s new drivetrain, first I need to describe the rules by which everyone who trades bikes — whether for a moment during a ride or for a couple of months — must abide.
Rule #1: You are a guest. After riding a borrowed bike, you must, upon returning it, immediately describe said borrowed bicycle as a “really great bike.” It doesn’t matter if it’s true. Say it, no matter what. In fact, say it especially if you didn’t care for the bike all that much. Critiquing another person’s bike is much like critiquing another person’s children, but moreso.
Rule #2: You break it, you buy it. Suppose you borrow a bike, throw a leg over, and turn the cranks exactly twice before the frame breaks neatly into two pieces, which roll — comically — off in two separate directions. You owe the lender a new frame. Don’t argue the point, and don’t try to weasel out of it. If you weren’t willing to take the responsibility, you shouldn’t have borrowed the bike.
The corresponding axiom to this rule is that if someone starts trying to loan his bike out a lot, it’s about to break.
Rule #3: No wiping boogers under the seat. Because that’s just gross.
OK, now I can go on to my short and disappointing description of how Kenny’s bike felt with that fancy new belt drivetrain.
Belt Drivetrain Observations
I should first make it clear that I rode Kenny’s bike with the new drivetrain for a whopping fifteen minutes, which was quite possibly not long enough to make a full and final assessment. That said, here are the things I noticed:
- Quick Engagement: It did feel like the moment you begin turning the crank to the moment where you get power to the wheel is a little faster. That is, in fact, the most perceptible difference between this drivetrain and a normal chained drivetrain.
- Sproinng: You know how when you pull a rubber band tight between two hands you can feel the vibration of the rubber band for a moment? There seems to be a tiny bit of this when you go from coasting to pedaling. Sort of a brief moment of vibration you can feel through the cranks. It’s not distracting or irritating or even audible. Just interesting.
- Thonk: Under heavy torque (steep climbing), both Kenny and I made the belt hop a notch, causing a loud metallic-sounding “thonk” sound. I think this has to do with the belt Kenny’s got on there right now: it’s too long, so the hub is bolted waaaay back on the chainstay, back further than the tensioners will go.
- Ssssshhhh. Apart from the “thonk” belt slip, the drivetrain was absolutely silent. I’ve heard from people that it can get squeaky when dirty or riding in dusty terrain. The way Utah is right now — no rain for what feels like months — I’m sure Kenny will find out firsthand whether this is the case.
By and large, though, the belt drivetrain didn’t feel radically different from a chain drivetrain. In fact, I’d call the difference in feel trivial.
Now, that makes it sound like I’m not interested in a belt drivetrain, but that’s not true. I’m still very interested in a belt drivetrain, provided it turns out that it really doesn’t have to be maintained — lubed — like a chain, doesn’t break, and doesn’t start squeaking. And that it doesn’t turn out to be easy to kink or otherwise ruin a belt just through normal hard use.
In other words, the way a belt drive is going to be appealing to me is if its maintenance characteristics reveal themselves as compelling: if the belt turns out to be stronger, more durable, and in general more ignorable than a chain. I don’t expect ride characteristics to be different enough to bring me aboard, at least not for a few interations of the belt technology.
So while I used to be really excited to jump right on this bandwagon, I’m now in a more cautious “wait and see” mode. I’ll be really interested to see if Kenny falls deeply in love with the belt drive and starts evangelizing it. Or if, contrariwise, he shows up some day with the chain drive back on the bike.
In short, the belt drive doesn’t sell itself as a snap decision. What’s going to make it popular — or kill it — will be the long-term reactions of the early adopters.
Holy smokes, I just gave an honest, non-ironic semireview of a new product.
Somebody slap me.
There’s a certain moment, usually sometime in May, that I never expect but always relish. I’ll start a ride, expecting to feel the way I always feel at the beginning of the season. Not weak, but not powerful either.
Just sorta kinda there, ya know?
But something has changed.
The investment I’ve made in my legs over the years — fifteen of them or so — plus the early-season riding, suddenly pays off.
And my legs go online. At least, that’s the term I have for it. You’ve probably got your own term for the same phenomenon. Or maybe there’s a standardized, common-knowledge term for it that I don’t know about because I missed that issue of Velonews.
Whatever you call it, it’s a great sensation. Suddenly, the climbs you’ve been struggling with don’t require struggle — or at least, the struggle feels good instead of like work. Your cadence smooths out. You find yourself with a new urge to test your legs and see what they’ll do.
And if you’re me, you give into that urge with no resistance. Training schedules can wait. Today, I’m going to celebrate that my legs have gone online.
Then, as the season wears on, I start taking that feeling for granted. Or maybe it just fades away. Either way, I forget about it until the next season.
This year, though, was a little different, because my legs went online twice. The first time was at the beginning of the season, like usual. I honestly can’t remember where I was riding; I just remember the sensation.
But then, about a month before the Leadville 100, I turfed it. And then I was off my bike for a bit, then riding slowly, and then trying to ride back at my pre-wreck level and failing.
I could tell that I was slow. My legs just weren’t there.
Until about ten days before the race. I started a climb up the Alpine Loop, expecting another long conversation with myself about how I wasn’t sure I had it in me to do Columbine and the Powerline with my shoulder (and, secretly, legs) feeling as puny as they did.
Then my legs came back online.
The difference between how they felt — from one day to the next — was startling.
Since the race, I’ve avoided hard rides. I’m in the mood to ride for fun, and for nothing but fun. Plus, school’s started and the time I had been using for rides is now the time I get the kids up, dressed, fed, and out the door.
But then, last Friday, the belt drive for Kenny’s Spot singlespeed came in, and I joined him to see how it felt.
And there’s no such thing as an easy ride with Kenny.
Before I go on, though, here’s the proud papa (click the images for a closer look)…
…and his baby:
Kenny dragged me all over the Frank trail network, and I’m proud to say that I didn’t even remotely manage to even pretend to try to think about keeping up. Eventually, though, I got to what I like to think of as the top.
I. Was. Cooked.
“We’ve got just ten minutes or so of climbing, and then it’s a couple of hike-a-bikes, and then it’s all downhill,” said Kenny, perkily.
“I don’t want to climb anymore,” I said.
Kenny looked at me, uncomprehending. It’s as if I had started speaking Hebrew or something. Which I am quite sure I had not, what with my Hebrew being quite rusty.
How, I could see him thinking, because Kenny’s thoughts are always quite plainly visible, could anyone ever not want to climb?
It’s a foreign thought to Kenny, because his season never winds down. His legs are always online. Mine, on the other hand, have gone offline for the season.
So long, legs! See you again next year.
PS: I got a chance to ride Kenny’s bike with the belt drivetrain. I’ll talk about that tomorrow.
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