Sadly, You're Never Alone with Cancer

I was walking home from work today when I passed this graffiti chalked on the wall in a park near my house. I'm not sure how the person who wrote it is keeping score, but I'm glad to see they're winning. 

I've mentioned before how shocked I am by how many people I know who are dealing with cancer, but in some ways the shock has worn off and I've reached the point where now it just makes me sad. At every turn it seems someone I know -- or who I know of -- is announcing their membership in the cancer club.

One of the craziest examples of this comes from Kevin Drum's political blog on MotherJones.com. Drum recently announced his own diagnosis of multiple myeloma, and while he doesn't post much about his experience with the treatment, when he does post such items it's amazing how many comments he gets that boil down to a variation of "when I was going through this, my experience was..." 

It's like the whole bloody world has cancer. I wish we could find a better way to establish our commonalities. 

By the Way, Pages

A few days ago I figured out the pages functionality of Blogger. So naturally, I added a few pages to this Blog, which you can find links to on the right. I've finished three pages so far, and a fourth will go up as soon as I can figure out how to make a table display properly with this software. 

By way of introduction, the pages I've added are:

Calculating the Cost of Cancer (forthcoming) -- I'll post more on this later, but I'm going to put up some more information on my treatment costs as I wish someone had given me better information about what I was in for when I was diagnosed. It's easy to say, "spare no expense" when you have no idea what the expense is going to be, but when you start adding it up that approach can start to seem a little nonsensical.  

The Goodbye Cruel World Tour -- I figured it would be worthwhile to have a central place where folks could see where I've been, and where I plan on going next. Finding that info among the posts is getting harder and harder. 

John's Mostly Pointless Potential Accomplishments List -- Yeah, it's a bucket list, but I refuse to call it that. 

The Periodic Table of Copyright Violations -- Documentation of the art project I've been working on (not actively, but still...) for the past five or so years. 

I Wish My Cancer Were Sleepy...

...'Cause I sure am.*

I'm not sure why my body has decided to wake up three hours after I went to bed -- and to contemplate oozing blood from my nose -- but here we are. And of course it's too late now for pharmaceutical assistance, as that would leave me a zombified mess in four hours when I need to be awake for work. The options now are to contemplate the ceiling, read, watch television, or surf the web. 

I guess it's obvious which I chose. 


* Technically, I probably can't blame the cancer. But these days, it's a good excuse for most of the bad things that are happening to me, so I'm going to go with it. 

Weekend Update

Despite (or perhaps because of) an active (for me) social schedule, this is been a pretty non-eventful weekend cancer-wise though I do have a few quick updates...

Plastic Shoes

I hate to say it, but the Crocs really are the most comfortable things I've worn since the neuropathy moved to my feet. They're still ugly as sin -- and I'm tempted to write "I wouldn't be wearing these if not for the cancer" across the top of them -- but I fear I may reach the point where these become my shoe of choice. Sad...

The Solution to the Cat-Furniture Problem

I was wandering through the mall today when I found the solution to the problem of potentially acquiring a cat that might destroy the furniture: if you first spend a lot of money buying "distressed" furniture that intentionally looks like a cat's been at it, then you don't have to worry if the cat actually does try to sharpen it's claws on the arm. If only a distressed chair (seen above) wasn't three grand...

Videos from Vietnam

I've made my first pass through the Saigon to the Mekong Delta videos and managed to reduce 354 minutes of video to sixty-three. That's not too bad a start, though it's still thirty times longer than it needs to be if anyone's going to actually watch it. So it'll be awhile yet before I've got something that's ready to be posted. 

A New Test for Depression

The psychologists may disagree, but I think I've come up with a new test for depression: if you've charged more than $500 to your credit card on non-essential things during a 24 hour period, you might be depressed. Stupid Amazon...

A Word to the Wise

If you're not sure whether or not you want a cat, do NOT go to the Humane Society website. It's hard to resist their little faces...

But of course the picture they don't put on the Humane Society website is this one:

To Cat or Not to Cat

Sib4 tells me I should get a cat. I had a pretty terrific cat in graduate school, but he got old and when he died I'd sort of (foolishly) made the attempt to be a dog-person. But I'm not really a dog person. They take too much energy (energy I eventually won't have) and don't really do well by themselves. And since I live alone and spend ten or so hours a day at work, having a pet that doesn't want to be left alone is something of a problem. 

Those kind of problems I don't need. But a cat might do okay. Or not. 

The cat pros are pretty clear:

• They say people who have something to care for live longer. So having a cat might function as a countermeasure to the cancer. 
• It would be nice to have something to come home to besides the radio and TV.

But so are the cons:

• With a cat comes a cat box.
• In all likelihood the cat would outlive me, leaving a challenge for my siblings to deal with.
• I'd have to find someone to care for it when I'm out on the GCW Tour.
• Pets are unpredictable. You never know if you're going to get one that sleeps quietly at your feet or wants to lie on your head when you're trying to sleep. 

Decisions, decisions...

Elevator News

I work in a high rise with elevators that have little TVs in them which cycle though small bits of news and lots and lots of ads.* As I was leaving today, I was surprised to see that one of the bits of news being shown was relevant to this blog: 

Jeremy Clarkson, one of the hosts of Top Gear and so one of the inspirations for the Vietnam leg of the GCW Tour, was fired from the show. Apparently, he punched one of the show's producers (an act which definitely falls into the category of "poor career move").

I have to say, the show won't be the same without him. It's not everyone that can pull off an electric blue leisure suit and a motorcycle helmet with the word "penis" painted on it.** And as he and I share roughly the same build, it was always entertaining watching him try to fold himself into various sports cars. (How he managed to get into a Mazda Miata, I'll never understand.)


* As you might imagine, there are just enough bits of news to keep you watching but it's the ads that are the real content. 
** One thing the Top Gear episode on Vietnam didn't make clear is that in Saigon, nearly everyone has messages written on their helmets. Watching the episode, I never really understood why his co-host chose writing "penis" on Clarkson's helmet as a way to annoy him. Now that I've been to Saigon, the joke makes a lot more sense -- as does the fact that they wind up with a "gifts" of a painting, a cement sculpture, and a model boat tied to their motorcycles, all of which are products Vietnam specializes in.

Beloved of Italian Chefs, Gardners and Cancer Patients Everywhere

You know what's hard? Trying on shoes when you can't feel your toes. That's hard. The instructions tell me that my toes shouldn't touch the front of the shoe. I'd be able to figure that out a lot easier if I could actually feel my toes. Oh well. We'll just assume they fit and see what happens.

Yes, thanks to Zappos and UPS my Crocs have arrived. They are, without a doubt, some of the ugliest shoes in the world. Putting them on my feet immediately makes me feel like I'm ninety years old.* But I'll admit they're reasonably comfortable and, at $40, nearly disposable. So based on the recommendation I've received I'll give 'em a shot and see if I can't get to Walgreen's and back without killing my feet. 

Of course, this is Seattle, and while I couldn't bring myself to order the model with the holes on the top, they're still clogs and they still have holes on the side, which makes them unlikely to be terribly useful in the rain -- especially when you've got feet that respond poorly to cold. 

I miss the black suede cowboy boots that got me though college and grad school. Tony Lamas to Crocs is a long way to fall. 

Getting old sucks.**


* Which isn't as bad as it seems in that these days I feel about seventy under the best of circumstances. 
** But as they say, it's better than the alternative. 

A Bit More Vietnamese: Don't Expect the Action Shots Anytime Soon

A true story...

Back in the day, Sib4 and her new husband went to Hawaii for their honeymoon. They borrowed someone's video camera to take along and record the G-rated events. 

When they got back they held an event to show their video of Hawaii. Included was about twenty minutes of the Hawaiian coast that was, by their own admission, some extremely boring video. After about thirty seconds of ocean and coastline, you're good. When we asked why they chose to film twenty minutes of the exact same scenery, Sib4 explained that "from the boat it all looked so different."

Now bear in mind, this was a while ago.* The camera could've been Super8, but might've even been VHS. So now let's jump forward twenty some years. We're no longer talking cameras with magnetic tapes lasting an hour and batteries half that long. This is the age of the GoPro, a digital camera smaller than a pack of cards with memory cards that will store hours of raw video and batteries that last just as long.

All of this is to say that I have no idea how much video Sib2 took in Vietnam, but just for the day we spent riding from Saigon to the Mekong and back I've got 325 minutes -- that's about 5.5 hours -- of raw video. And by raw video, I mean indiscriminate shots taken with the GoPro mounted to the top of a helmet as we cruise down the highway. There's some interesting stuff -- including, for all you NASCAR fans, footage of my wipeout -- but a lot of it reminds me quite a bit of Sib4's honeymoon video.** 

So the question is, how do you turn 325 minutes of footage into the two or three minute video that someone might be willing to watch? Sure, there's lots of software that makes video editing easy, but I have yet to find the algorithm that can pull the interesting bits out of a ton of raw footage. And bear in mind we're talking a 99%(!) discard rate to get to a three minute movie. As far as I can tell, the only way to distinguish the 1% that should be kept from the 99% that shouldn't is to watch it all. Repeatedly. 

So there are two conclusions I've drawn from this: 

First, it'll be awhile before I have Vietnam videos I can share. For just the Saigon bit, if we assume a 50% reduction to the footage for each pass through what's there, it will take just under eleven hours to get to a three minute movie. Add in the necessary eye resting time, and it's probably more like twenty or thirty. But what choice do we have? We've got the footage; it would be a shame not to use it; and some of the footage Sib2 captured really is quite lovely.

Second, I've decided they should give the Oscar to every single film editor out there just as a reward for their willingness to do the job. I suppose it might be somewhat more interesting with movie stars and explosions rather than lots and lots and lot and lots and lots of highway and scooters, but it's still got to be a drag. I started in on Saigon and only made it through about ten minutes before my eyes went all fuzzy and started watering.

* Their eldest just turned eighteen, so we're talking at least 20+ years.
** Oddly enough, the only thing I remember about that video is the boring twenty minutes of coastline. I couldn't I identify a single other shot from the tape -- and I'm sure there were many -- but I remember that coastline. 

Yikes!

I'm still digging my way out of the accumulated mail and email that came in while I was in Vietnam. Today I finally opened the emails from Regence telling me that there were messages waiting for me on their website. Ok, let's check out the website... 

Ten messages telling me that claims had been processed. Ok, let's check out the claims page...

Holy cow!

This is probably too much information, but that hasn't stopped me yet...

For the two months of January and February (the March visits don't appear to have been filed yet), the total cost of the services provided by SCCA and Walgreens Pharmacy amounts to just over $56,000. One scan, one visit with the oncologist, three visits with the PA, three lab draws, three sets of lab tests, three infusions, and thee hundred forty-five Xeloda pills (if my mental math is correct) -- fifty-six thousand dollars!!!! 

Even the Roadster didn't cost me $56,000, and at this rate six months of cancer treatment would've bought me my first house. 

Anyway, of the $56,000 due Regence has already paid out just under $40,000 and determined that my share of the bill is $6,000. Six grand! I could go back to Vietnam -- and fly first class -- for that. Undoubtedly, there are some very large bills buried in the stack of mail I have yet to open.* (Maybe I won't open my mail today...)

I'm assuming the $10,000 difference between what Regence and I will pay and what the providers have charged is associated with claims that are still being processed.  Here's hoping that my share of that remaining balance is very, very small.

Most importantly, though, while it's not what I'd prefer to spend my money on, I can at least afford to pay my share of the bills for treatment. But what do people with cancer and other terrible conditions who can't do? People with kids? People laid off or under employed? People carrying debt from previous financial troubles? And bear in mind, six grand is my share with health insurance. Imagine the folks without it. 

So with all the sarcasm I can manage... Best healthcare in the word, baby!

* That sound you hear is me weeping with regret over the decision to bail on Group Health where after my $200 annual deductible was paid I'd be paying just $20 per visit and $15 per prescription for most everything.

A Bit More Vietnamese: Occupational Safety

Looking back through our photos, I realized I missed a few things I should've posted about while I was in Vietnam. Since there's not much happening on the cancer front, I figured I'd go ahead and post a few more pictures and comments on Vietnam as I make my way through the ~350MB of photos and video. 

First subject: occupational safety. Here are three pictures of a building site in Saigon. Notice anything unusual?

There's no separation between the building site and the rest of the city. That guy with the backpack walking through the site is Sib2, and I'm right behind him. Halfway across the work site we get passed by the random guy on the scooter. You certainly wouldn't be able to do that in Seattle. 

On our motorcycle tour, we literally saw road workers laying gravel and asphalt on the road while cars, trucks and scooters were driving over it. 

Protective foot wear in Vietnam is a flip-flop and headgear is a baseball cap.

Clearly, there is no equivalent to OSHA in Vietnam. For someone used to American safety standards, it's a little startling. But it does allow for a very close view of their projects.

I Wonder Which Has More Words...

...my book or this blog. 

I just noticed I've reached 250 posts on this blog. Who knew there would be this much to write about cancer? But as long as I'm writing, I'm not dead -- so here's hoping for another 250 posts. At the rate I'm going (which has slowed significantly since I started) another 250 could take me a couple of years. 

That would be kind of nice.

Is the Circus in Town?

I hate to say it, but yesterday's visit to the SCCA was way more of a clown show than usual. What should've been a typical 3-4 hour consult and infusion, turned into 5-6 hours of mostly waiting around.

The first problem started when I checked in at the lab. I told them I was there for a pre-consult blood draw, the girl tapped at her computer for a moment, and then told me that I wasn't scheduled for a blood draw that day since they had drawn blood two days prior. 


"Uh, no you haven't." 

"Are you sure?"

"Yeah, pretty sure."

"Ok, tell me your name again." 

I didn't mention that I hadn't told her my name yet at all, making "again" a challenge, but I did give her my name. 

"Oh yes, you are scheduled for a draw. Sorry about that. Just have a seat and someone will call you." 

I have a long history of falling victim to medical lab screw-ups, so it was a bit disappointing to have this sort of thing happen at the SCCA. In this day and age, most medical centers have figured out procedures to make sure they aren't getting patients confused. And I know SCCA has them, as I've seen them in action. Not sure what happened to cause this lapse at their lab. 

In any case, looking back this was a small problem. The bigger problem came when the nurse drawing my blood figured out that my body has gotten fed up with my chest port. And who can blame it? In any case, I was told that your body starts to coat the port and its related central line with scar tissue almost as soon as it goes in. None of this is a problem until that tissue covers the end of the line that sits in your vein, drawing blood or dropping drug into your bloodstream. Once that line plugs up, the chest port is basically useless.

Lucky me, my line was plugged. The first response is to see if you can make it work by have the patient try various positions while the nurse tries to get the blood to flow. So I was taking deep breaths, coughing, turning my head this way and that, raising my arms, lowering my arms -- all to try to get the blood to flow. After forty minutes, the nurse had what she needed.

So I went to my consult with my PA. Of course, it took so long to get the blood that the PA didn't actually have the lab results when she saw me. So she checked me out, decided I was "doing a good job,"* and so gave contingent approval for the infusion, subject to the lab results being fine. 

Sadly, my results were not fine. When I got to the infusion center, the nurse came in and asked me how things were going, to which she reponded, "Oh, that might explain it." Apparently, the lab results suggested that I should be bedridden in a semi-conscious state, rather than walking the halls getting ready for an infusion. And while I wasn't bedridden in a semi-conscious state, they'd have to re-run the tests before they could start the infusion.

So back to the chest port which, by this time, basically completely stopped working. This meant two things: first, I got to have an IV stuck in my forearm so they could draw the needed blood and potentially give he infusion; and second, the nurse went off to see if they had space to conduct the potentially two hour procedure (two minutes of action, 118 minutes of waiting) to try to get my line to work,

Can I just say, the last time I had an IV stuck in my forearm, I was under anesthesia and getting prepped for surgery. I liked it better that way. I don't mind IV's in my elbow, but I don't like them halfway down my forearm. Only thing worse is when they stick them in your hand. Ick. 

Anyway, blood got drawn and went off to the lab, and the nurse went off on a quest to figure out if she could work on my central line. 

And at this point the battery on my phone died. Freaking Nokia. How can anyone think a three hour lifespan on a phone battery is adequate? 

So time passed very slowly, but eventually the lab results came back showing that I wasn't supposed to be bedridden in a semi-conscious state, and thus the Avastin could be ordered, and the nurse got approval to screw with my line. It's basically a two-step process. They fill the line with a drug that's supposed to dissolve over a thirty minute period any scar tissue that's formed. They check, and if it hasn't worked they fill the line with a different drug that's supposed to do the same thing over a ninety minute period.

Cutting to the chase, the thirty minute drug didn't work so the nurse started the ninety minute drug fifteen minutes into my thirty minute infusion, thus potentially extending my already tiresome stay at the SCCA by another hour or so. Ugh. Happily for me, about halfway through that process after the infusions were done and the IV was pulled, she actually looked at my face when she said, "OK, just 45 minutes more and we can check the port" 'cause then she said, "Actually, why don't I just check that now and see how it's doing?"

It was doing fine. Blood came out easily, so she flushed the line and I was on my way. 

Back to work for two hours of mandatory meetings, and then home for fifteen hours of sleep. Some days, just the experience of being a patient is exhausting. 


* This cracked me up. Aside from taking my pills, I'm not "doing" anything. My cancer may be doing a good job, but it seemed odd to assign me agency for the biochemical processes happening in my body. 

Happy Spring!

According to Google, it's the first day of Spring. So, Happy Spring! (Or, for any southern hemisphere readers, Happy Autumn!)

Oh, and a tip for modern living: Travel to a country that doesn't observe Daylight Saving Time for a period that includes the day when the clocks are switched here. Jet lag's gonna screw with you anyway, and that way the DST adjustment just gets absorbed into the jet lag adjustment.

Worked great for me this year. 

Back to the Grind

Well, vacation is over and it's back to the grind. It's only taken me three days to dig out of the detritus of life that accumulated while I was in Vietnam. Good thing, too, as it turns out tomorrow is oncology day and I'm supposed to be at the SCCA at 7:30 am for a blood draw. It would've been sort of embarrassing if I'd waited until tomorrow to read the email with my appointment schedule in it. 

A few things came up while I was digging through two weeks of accumulated news, comments, activities, etc., so I figured I'd just run through them here rather than creating a bunch of separate posts. I'm lazy, and this saves me having to search for a bunch of images. 

Good for Me, Bad for the World

I was sad, but also sort of glad, to learn that Terry Pratchett died while I was in Vietnam. The British author of countless novels for adults and kids, most of Pratchett's work was very funny fantasy-ish stories -- think Harry Potter meets Lord of the Rings meets the Office -- that highlighted the absurdity of our world. I loved them, which is why Pratchett's death is sort of good thing for me. When you're told you have a terminal disease one of the things you start to think about is all the things you're going to miss when you're gone. One of the things on my list were the novels Pratchett was going to write that I wouldn't be around to read. Now it turns out there won't be many of those. Good for me, bad for everyone else. 

Minions

After Despicable Me, Despicable Me 2, and the various trailers for the forthcoming Minions movie, I was surprised to learn that not everyone recognized that Dave was a minion or, for that matter, knew what a minion was. So, for anyone that doesn't recognize a minion, here's one of the trailers for their new movie:

Four Out of Five Ain't Bad

Turns out, rayon is not a good choice for pajama pants. I have now completed my post-Vietnam laundry, including my new pajama pants. The cotton and linen came through without significant shrinkage, but I think I lost about three inches off the rayon pair. So if you're in the vicinity of 6'2" tall with about a 36" waist and have a desire for a lovely pair of pajama pants with an elephant pattern, shoot me an email. 

I've Got My Papers

In my rush to get everything together for Vietnam, I forgot to mention that I've now got my official "death" paperwork: will, medical directive, financial power of attorney, and medical power of attorney. With any luck I won't need them for awhile, but at least now I've got them. (Have you got yours? Not to be morbid, but accidents do happen...)

And on that cheery note, we'll call it a night. Oncology day starts early.


On second thought, we can't end on that. So here are more minions..

The GCW Tour, Vietnam: Home

The GCW Tour, Vietnam: A Last Post from Vietnam

Well, that about does it. Tomorrow afternoon we fly out, but I doubt there will be much time for posting. Eventually, I'll likely write up a summary and, with luck, at some point Sib2's fifty-some hours of GoPro video will get boiled down to five minutes or so which I can post here. 

But the Vietnam leg of the GCW Tour is basically over. A bit of sleep and lots of hours in an airplane, and we'll be back to normal life. And, of course, cancer, which I suppose counts as part of my normal life now. 

But here's one last shot of Saigon at night taken from the rooftop bar at our hotel...

The GCW Tour, Vietnam: A Shoe-based Retrospective

Halfway through a Hanoi shoe shine...

 

...and after a Saigon shoe shine

The GCW Tour, Vietnam: Dave's Last Day in Saigon Spent Shopping for Souveniers

The GCW Tour, Vietnam: The Where's Dave? Game

Give yourself ten points to start. Subtract one point for each picture you have to look at to figure out where in Saigon Dave is. Most points wins. Good luck!

I'm guessing most didn't have to read this far to recognize Dave's at Starbuck's.