Normalcy?

Well, I'm back in my own shoes, wearing regular socks, and requiring nothing more drastic than an occasional slathering of lotion to keep the skin on my legs and feet supple. The edema finally responded to slow, steady use of a diuretic, and I'm pleased to put my ugly shoes away for the next time. It's such a relief to abandon yet more medicine, and to see results that require only patience and time.

Actually, I so seldom "see" results that I hardly know what to think. We in the Renal Cell group always kid one another: If you've got side effects, your meds must be working, unless the side effects get out of control to the extent that one must stop taking the medication! But side effects are generally the only outward sign of a medication's "presence" in the body. I have to rely on scans and test results to know how things are going, and even then I'm at the mercy of someone else's interpretation of those results - I can't make any judgement for myself by looking at the test results, or viewing the scans. Fortunately we have tools at our disposal.

I mentioned long ago a great resource, Netwellness, which is a service of 3 major universities in Ohio for composite medical information that's unbiased and definitive. One of the most useful components of that service is the Medline Plus Medical Encyclopedia, where one can look up test names to see what the test is measuring, what's "normal" and what the test results indicate. All of the Medline Plus content is available without charge to anyone with an internet connection; there are lots of ways to get to the Medline Plus site but I like to recommend Netwellness because of the other resources available there.

Saint H got a nasty surprise yesterday. After suffering all weekend with a mild toothache that gradually worsened, he ended up in the dentist's office yesterday afternoon, getting a crown. Further, he's scheduled for another appointment tomorrow morning for a crown on the tooth next to the one treated yesterday. Ah, the wonder of growing older - I know it's worth keeping one's own teeth as long as possible, but egads it can be costly! Guess we'll cross that bridge when we come to it.

Snake Oil by Chanel

Last week a well-meaning friend sent me a "Johns Hopkins Cancer Update". As the email requested, she sent it to everyone in her address book. It sounds good: a clear-cut enumerated list of statements about cancer that identifies what causes it, and states definitively how to combat it. The only problem is that it's not true - it's an urban legend, and never came from Johns Hopkins to start with.

My first thought was to just hit the delete button; then I thought, no, I'd better give a response because it's not good to spread this stuff further. Before I could do so, though, I got another message from her: One of her correspondents is a physician, who repudiated the content. My friend sent out a message to everyone apologizing and quoting his comments, "The information in the email is irresponsible and innacurate [sic] and may well cause harm or even death to those who choose to ignore appropriate medical advice. I do not suggest passing this email on to others."

Since my diagnosis, I've gotten lots of suggestions for cures and treatments from friends. Some constitute advice about dealing with side effects (fatigue, generally); others are claims for nutritional cures; still others advocate alternative medicines. Some of these suggestions are reasonable, sound advice, while others are way outside the fringes of reality.

There may be a grain of truth behind all of these suggestions, but I'm pretty skeptical. There are many distinct types of cancer, but most of the "cures" talk in general terms of "cancer" as if all cancer cells behave identically, and that what will work for one will work for another. Yet accepted wisdom says that renal cell almost never responds to radiation or standard chemotheraphy, so these methods of treatment are almost never tried. Likewise, every person responds differently to medications - I need look no further than myself for the truth behind that. What works for one person may not work for the next.

People want to believe that there's a solution to cancer, and that this solution can be codified and passed along to someone they care about. And it can be a great comfort to see a list, or a diet, or another scheme, headed up with a recognizable name - would you rather get advice from an unnamed source, or from, say, Mother Teresa?

I really have a problem with these indiscriminate, false attributions - as a former librarian, I know how to track things down and can evaluate sources pretty easily. But others may not know where to go to validate a statement, and sometimes taking these things on face value can be risky.

Perhaps Alan Alda puts it best, in his recent book Things I Overheard While Talking To Myself. He discusses the mythical but comforting "wear sunscreen" address supposedly delivered to MIT graduates by Kurt Vonnegut. Alda writes,

"It's a delightful piece of writing. But if it's presented as if it were by someone other than the person who wrote it, it steals that person's good name and gives a certain credibility before it has a chance to earn it honestly. So, as good as it is, it's a cheat. At least in the way it's offered to us."

I hope we can think critically about what's presented us in all arenas, but there's so much at stake in terms of one's health - it's doubly important to be careful.

Yum, Yum - Part 2

During the time that I was struggling with food on the Sutent trial, I kept a barebones food diary. I recorded everything that I ate, in what quantity, at what time, and whether or not I had any reaction. By reviewing the food diary, I learned that I was better off to eat small "meals" during the day, and I could easily identify foods that triggered nausea and vomiting. "Meals" could be a pretty broad term, and depended in part on what foods I reacted to. I set up a pattern that made sense to me and have stuck to it pretty well since - small helpings at "normal" mealtimes plus a couple of snacks during the day. I'm not always good about sticking to healthy snacks but for the most part I'm pretty conscious of what I'm putting in my mouth (except for anything from Andrew's!)

I have one kink in my requirements: two medications must be taken on an empty stomach (Nexavar and Levothyroxine). "Empty stomach" means no food for two hours before, and one hour after, taking the medication. I've gotten around that by scheduling those medications in mid-afternoon, between 2:00 and 4:00 p.m. Those taking Nexavar on the normal schedule (that is, 4 times more than I'm taking) have the additional burden of scheduling that medication twice. My buddy Bruce sets an alarm for 4:00 a.m., takes his Nexavar, and goes back to bed.

Lest you think that the "empty stomach" requirement isn't a big deal, ignoring it can alter how the drug is taken up by the body. If Nexavar is taken with food, for example, its effectiveness is reduced by 60-75%. Why go through all those side effects for nothing? Yet the "empty stomach" recommendation, the standard for clinical trials and oncologists' advice, may not be universal. A recent study suggests that, in some cases, drug efficacy may in fact be improved by taking it with food.

It's become a controversial subject in oncological circles, and more research will be required. Ohio State University is seeking grants to study the relationship between nutrition and cancer therapies; I suspect others will be delving into this too. The more they find out, the better off we are.

The Cost of War

Some months ago, the New York Times published a cost breakdown of the Iraq war, with details on "what this money would buy." I am always skeptical of such "what-if" proposals; one must accept on face that the funds expended for one cause would be appropriated equally enthusiastically for other causes. Given the legislative paralysis exhibited recently in our fair capitol, I doubt that the yammerers would be happy to provide money, say, for education or healthcare or disaster relief or poverty; all laudable social issues, all fraught with emotions and subject to hot button responses on too many levels. Can you imagine the "my Preznit right or wrong" supporters voting to spend money on social issues? Not bloody likely, I'd say.

However unlikely the tit-for-tat spending scenario might be, it is certain that we're facing a real squeeze on budgets coming up. It will take a long time for us to see how definitively this will affect life as we know it. But the hints are there.

For example, the budget for the National Institutes of Health will be affected as will all others. The NIH budget provides for the National Cancer Institute. The NCI budget for 2009 will be frozen at 2004 levels. We can start expecting cutbacks in research and program support. For some people, I don't suppose this is earth-shattering news. But just try to name an acquaintance whose life hasn't been touched by cancer in some way - I haven't been able to think of anyone.

"Heck of a job, Bushie."