Cancer World

Having a loved one with cancer moves you from your normal existence to what Christopher Hitchens termed the “land of malady” but that I call “Cancer World.” It’s a world with its own vocabulary, like any other specialized world, and each cancer has its specifics. You learn about staging, invasive versus non-invasive, and you finally learn how to pronounce “metastasis.” (I had previously only heard the verb form, “…whether the cancer has metastasized.” Turns out, you pronounce the noun quite literally.) As Hitchens notes, you also “fight” cancer, never suffer from it, and people who’ve been successfully treated for a cancer are not “recovered” but “survivors.” While most cancers are in fact life-threatening, and people with the cancer in remission are never 100% sure every last cell has been killed and the cancer can’t recur, the fact is that the flu can also kill you, and there is no guarantee you’ll never get another infection or that it will not flare up again. Then again, the survival rates for the flu are to be envied.

But all that pales against the sudden influx of facts and statistics and treatment options. You don’t talk about mere “survival” but “5 year and 10 year rates of survival and recurrence,” and you can quote them by stage and cancer types. Oh yes, there are many types of even breast cancer. They can even be plotted on a matrix: invasive or non-invasive, ductal versus lobular, which of three possible hormones the cancer might respond to or none of them. You find yourself unconsciously picking up terms from the doctors and nurse practitioners who patiently explain things to you. There is or is not lymph node “involvement.” You don’t ponder surgery to take out all the breast tissue on both sides and replace them with fakes, you consider a “radical double mastectomy with reconstructive implants.” Very quickly, these terms become second nature.

With breast cancer specifically, but also cancer in general, there seems to be a profusion of flower decorations, icons, and imagery. Always white, delicate, and peaceful, possibly in an attempt to balance the certainty that many of the patients around you are facing a terminal illness while others are fighting fear that theirs will be. Still, I find the profusion of white lilies disturbingly funereal.

On the positive side, everyone in those parts of the hospital or office go out of their way to be nice. Perhaps it’s because there is no malingering in Cancer World: it is a disease best detected by blood tests and tissue samples, not subjective patient reports. There is that element, too, but it’s always better when it’s detected without any symptoms on your part. I’ve read that in emergency departments and primary care physician offices, the term “GOMER” is used (Get Out of My Emergency Room) for hypochondriacs (and not only them, but that’s a darker side). There are no GOMERs in Cancer World, either. It’s sufficiently scary and the treatments sufficiently unpleasant that nobody there wants to remain any longer than they absolutely must.

In Cancer World, certain things are understood: food is something to be managed as much as enjoyed, because nausea is a constant part of most treatments. When there isn’t nausea, there are taste changes: things that used to taste good don’t anymore. Certain treatments dry out the mouth and promote sores, so eating acidic things is discouraged. And since anti-nausea meds are going into you constantly, you don’t want to do anything that might further upset your system, so spicy foods are also out. And even if they were in, they might not taste good. Planning activities is a very tentative thing: fatigue builds up through treatment, and recovery from surgery is variable.

Emerging from treatment to walk around the outside world when you know the person beside you has just undergone chemotherapy is an odd experience. No one can tell just looking at her that she’s undergone this: there’s no cast, your hair does not instantly fall out, and the effects take a couple of days to set in. Explaining the cancer to people means educating them on the nuances you’ve just spent a few weeks mastering. And often, people are more devastated than you are, as they don’t know the statistics as well as you. Or in other cases they think it’s less of a deal than it is…because they don’t know the statistics as well as you. Comforting others about your loved one’s cancer is a surprisingly common occurrence.

I don’t doubt that a similar transition happens for transplant patients or members of any other group of people who share a life-changing characteristic and visit a series of institutions designed to deal with that characteristic. It’s just remarkable that there’s so little communication between Cancer World and this world given the number of people it affects. When you announce a diagnosis of cancer, people come out of the woodwork with family members, friends, and colleagues who have had or, worse, died from some cancer, frequently even the cancer you’re dealing with. Yet these don’t come up the way car crashes or even heart conditions do. Maybe it’s that there are no dramatic events around cancer after the initial diagnosis, delivered in an office or over the phone. No one rushes in to give chemotherapy just in time to revive the patient.

Hopefully this gives you a glimpse into Cancer World so you better understand what friends with cancer or who have loved ones with cancer are experiencing when they’re off dealing with it. There’s one last thing that’s surprising about Cancer World that you should know, but that warrants its own post.

In Case You Thought Nationalities Weren’t Made Up

If you ever thought that nationalities existed as a point of fact like species, created by genetics, instead of made up from whole cloth (that would be “constructed” in modern cargo-cult scientistic lingo…), I give you this headline from BBC News: Stalin comes third in poll to find greatest Russian.

Stalin was Georgian. They don’t even use the same alphabet. And arguably he was trying to create a new nationality called “Soviet.” It doesn’t even fit their conception of being “Russian” very well…it isn’t like “American,” something you can become by subscribing to a set of ideas (unless you’re Sarah Palin or her supporters, in which case it means you’re a white person from a town where books are frowned upon).

“On” Line? When did that happen?

When did liberals decide that “on line” replaced “in line” for “standing on line”?

A liberal coworker insisted on using it, as if it was a time-honored American English prhase, and NPR was filled with people trying to use it as much as possible.

Did Noam Chomsky send out a memo or something? And what disadvantaged minority does this make everything better for, like when we solved the abortion question by adopting “pro life” instead of “anti-abortion” and “pro choice” instead of “for abortion rights”?

The Web Causes Toilet Economics to Flow Backwards?

Have you seen the ad where a guy with tiger stripe tattoos attempts to get a tattoo shop to take them off, and they tell him it’s impossible, just like they told him before? The guy objects saying, “well, now I’m on my digital phone, so…the call should go better.” He expects swapping out one technology will make everything behave differently than it did previously.

Pets.comSomething similar happened back in the days of the Dot Com boom–and subsequent bust. People imagined that a flawed business model + The Internet would mean the laws of economics could be reversed. It didn’t matter if you had a company providing a service no one was willing to pay for. This was on the Internet, dammit! Hell, a centralized pet food delivery service + The Internet = a good idea! Well, we all know how that turned out.

I suspect, based on a former colleague’s report of a Thailand conference of “social entrepreneurs”, that we’ve achieved, or in this case,

As targeted by the Millenium Development Goals, over two billion people suffer disease, water pollution, and economic woes because of inadequate sanitation. And promising solutions in some cultures and economies are inhibited from scaling larger because producing appropriate toilets takes time. Especially if we’re talking millions and millions of locally appropriate toilets!

But this group of entrepreneurs gathered in Thailand this week, sponsored by Ashoka, has a new idea: Start producing the toilet components centrally at a huge scale rather than in scattered places around the world. Then use the web to give local groups in any country access to this single global source, through a single portal or marketplace. The massive global demand channeled through a single web marketplace will justify entrepreneurial investment in the huge volume, high quality, low cost supply side to begin with., the above-mentioned poster puppet for Dot Com failure, was trying to solve the wrong problem. It assumed that the problem with pet food was that it was too hard to get, so aggregating demand would allow personalized delivery. It turns out there was a perfectly good existing model for delivering dog food. You ship them in a truck to the local grocery store, and people buy them along with their own food. The problem wasn’t on the demand side. As it turns out, there wasn’t really a problem until production was outsourced to countries with insufficient quality control to eke out a few percentage points more efficiency.

Could It Work?

So, let’s consider the problem of toilets. The first question I ask when given a new proposal is, “if this works, will it really solve anything?” There’s a reason to doubt that. Water-borne diseases arise from inadequate clean water supplies, and toilets don’t directly address this problem. Segway inventor Dean Kamen, whose entrepreneurship is of the plain vanilla variety, unmodified by the adjective “social”, does have an innovation that directly addresses this problem.

Now I’m not a water quality expert, and certainly one thing that affects water quality is keeping sewage out of it, and one component of that is to make sure that human waste goes into the sewage system in the first place, so we’ll grant that toilet availability could address one part of the problem. Though as a veteran of the concrete hole-in-the-floor style toilet in Russia, a country not known for water-borne diseases at the time, I’m not sure it’s the largest factor in disease prevention.

That’s a Lotta Water

Another question I ask is, “Is this going to create another, even bigger problem if implemented as specified?” As anyone who tried to get an old-style, flushes-for-sure toilet in recent years in this country knows, the amount of water used to flush toilets is considered a problem. With experts warning of a growing fresh water shortage and developing world water systems already not as robust as their developed counterparts, I wonder if first increasing toilet ownership won’t cause supply issues that outstrip the problems toilets solve.

So, let’s look at the proposal itself.

How Do We Make Money? VOLUME!

Remember, the problem is that “producing [locally] appropriate toilets takes time.” OK. So we have local variations on the toilet. So each culture will demand its own toilet design. That means there is a limited opportunity for standardization. When Henry Ford made the automobile affordable, he did it by standardizing the designs so they could be mass produced on an assembly line, what economists call taking advantage of economies of scale. And as far back as Adam Smith, economists have realized that by doing the same thing over and over in bigger batches, you can produce things more cheaply, be they Smith’s infamous pin factory, Henry Ford’s Model A, or the Standard company’s, well, toilets.

Yet the solution is to “start producing the toilet components centrally at a huge scale rather than in scattered places around the world.” But these toilets aren’t standard, at least not above the cultural level. So where do the economies of scale come from? There are potentially some savings in sharing common supplies (the base components for ceramic or plastics), but again, these savings are limited if there is no standardization.

If the idea is that multiple factories create redundancy, and by eliminating wasteful competition we’ll create savings, then I have to say, that idea has been tried. It was not as successful as initially hoped.

Additionally, by placing the point of production further from the point of consumption, you’re going to increase shipping costs. Now, modern shipping is very efficient from factory to customer port. Where many developing countries have problems, however, are horrific import tariffs, out and out bribery and corruption, theft, and a bad infrastructure once the goods leave the port. All of these serve to make (in some cases, by design) foreign goods vastly more expensive than domestic products. If you’re living on a few dollars a day, a foreign toilet may be simply out of reach.

This all assumes that production goes off without a hitch. But if you centralize production to one facility, you also create a single point of failure. As I indirectly referred to above, the Soviet system was noted for shortages, while basic goods are rarely in shortage in capitalist economies. The price mechanism has something to do with it, but the “wasteful competition” also creates redundancy so a work stoppage, natural disaster, or supply problem in one factory doesn’t mean production of that good completely stops. But in this case many more eggs would be in one, er, toilet bowl.

Now With More Web!

So what’s the magic incantation in this proposal? “The massive global demand channeled through a single web marketplace will justify entrepreneurial investment in the huge volume, high quality, low cost supply side to begin with.” Someone hasn’t been following the story of the One Laptop Per Child (OLPC) project very closely. It turns out, access to computing power is not the primary stumbling block or most pressing need in developing countries. First, they need reliable infrastructure, including, well, clean water supplies. The OLPC has been tough to even give away.

I’m not sure people in developing countries sit around thinking, “You know, buying a toilet is so time consuming, taking away from my busy day of walking several miles for buckets of clean water. If only there were some kind of web site I could log onto, order the toilet, and then be on my way to the next town for my turn at the water pump.”

Disintermediation was a neologism bandied about during the Dot Com boom. The idea was, you could cut out the middle man–the distributor, the guy who used to aggregate demand for certain items–and cut the cost of an item. But no one in this exercise has suggested middlemen are the problem–at least, not the kind of middlemen you can disintermediate via a website. Governments, as always, want their cut, and corrupt governments want even more. And they don’t even aggregate demand!

But as proved, even in low-tarrif, low-corruption countries, aggregating demand through a web site only achieves disintermediation savings if distributors cost more than individualized shipping. So unless Lenny at DogFoodRUs adds on more than $10 per bag of dog food, shipping direct to your door isn’t going to be a savings.

Aggregating demand, by itself, is only important if that demand is too diffuse for a distributor to be in business. Dog food demand is ubiquitous. Demands for, say Swedish progressive rock is just a little more spread out. There are professional Swedish progressive rock bands now because the Internet has given them a market for CDs and a vehicle to distribute samples to people who might come a great distance to see them play at a festival in the US.

But toilets–well, as the Japanese say, everyone poops. Demand for it isn’t scattered among a few nerdy white guys. It’s even more ubiquitous than dog food. So a website really is a solution to a problem that doesn’t exist.

Down the Drain

So, what are we left with? We’re left with an idea that may or may not address the problem it purports to solve, that may create problems as bad or worse than the problem it purports to solve, that ignores basic microeconomics, and that even gets its web strategy wrong.

I’m all for innovative solution to developing country problems, but I think this one has a potential to rival in the world of misapplied technology.

On Brain Tumors

I’m very sad to hear about Senator Kennedy’s malignant glioma, because I’ve unfortunately watched a man go through it before. The most common type, unfortunately, is also the worst, and it’s not a pretty process.

When I was in high school, I was interested in a jazz and media program at the local university. My piano teacher, who didn’t have any experience playing or teaching jazz, arranged for me to get private lessons with the jazz piano prof, John Emche. John was a sweet guy, very friendly and generous with his time.

After a few months of lessons, I knocked on his door as usual and he opened it, clearly woozy and with the lights out. He was sorry, he said, he had been sleeping because of some muscle relaxants the doctor had given him for a sudden series of debilitating headaches. The next time he had forgotten to cancel the lesson and was somewhat confused.

Then I learned he had a brain tumor and was getting surgery. The next time I saw him he was bald with scars on his head from the surgery. He was clearly much better, though his eyesight had been affected. But in a couple of months he was confused again and would drift back and forth. After that he quit teaching while he got radiation treatment.

It looked hopeful for a while, but I never had another lesson with him. Apparently the doctors determined, as is usual, that it had spread and there was little else they could do. So they quit treating him, let him regain his strength, and he and his wife went on a cruise together while he was still functional enough. Apparently it was good for both of them to relax and enjoy something together.

Very soon thereafter, he passed away. The whole process took about a year from what I recall (bear in mind this was 22 years ago). Now fortunately for Senator Kennedy, he has more resources and, more importantly in the world of medicine, more influence to ensure he’s not in the control group of an experimental study. But  depending on the severity and type of tumor, he could be gone very soon.

Whatever you may think of someone or their politics, it’s a frightening prospect, hard on them and their loved ones, and I really hope the outcome is better for him. But the odds are not good, and I don’t wish that on anybody. One small consolation is that Senator Kennedy had a good long life until this point. John Emche was in his thirties–this disease doesn’t really care who you are or what you’re like. And John Emche was a great guy who deserved more time with us.