Monday, August 31, 2009

JT

Isabel and I had a great weekend. We went to the Berkshires for a couple of days -- our first time away, alone, in a long time. The weekend culminated with our seeing James Taylor perform with the Boston Pops at Tanglewood.

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We drove up Saturday morning and stopped in Stockbridge for lunch. Some very nice little shops in downtown Stockbridge, including one that sells all kinds of lunch boxes, novelty ties, Star Wars figures, posters, obscure CDs, etc. The kids would have loved it -- something for each of them there. (That was a theme for the weekend -- "The kids would have loved it." They were jealous enough before we even left.)

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Two observations about the good people of Westewrn Massachusetts:

First, the drivers are insane. There are few traffic lights in the Berkshires, and the stop signs are more or less optional. Or people do stop, but they don't bother with the second part of the stop sign rule, "Wait until traffic is clear and then go." I was amazed at the people who pulled out into traffic and let those-who-actually-have-the-right-of-way just deal with it. My theory: displaced New Yorkers and Bostonians who came to the Berkshires for the peace and quiet, and who now were competing with one another for space on the country roads.

Second: I've visited about 30 states and 7 foreign countries, and I've never seen any group of people so devoted to wearing hats that are walking that fine line between Really Cool and Really Ridiculous Looking (and I'm including Louisville during Derby season). I wore a boring baseball cap for the weekend, and I kept telling Isabel I really needed a better hat. James Taylor himself embodied this Cool/Ridiculous gray zone of hats in all of the advertisements for his Tanglewood performance, taken from the cover of his latest album:




John thought he was wearing a nightcap and asked if we would bring one back for him.

That, too, sums up the whole Cool/Ridiculous hat thing pretty well, come to think of it.



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After lunch and some shopping, we went to The Mount, the summer home of Edith Wharton, the famous American Writer -- one of Isabel's favorites, and I like her, too. Very cool home, and our tour guide was fantastic.

We walked through the gardens after the tour, and then stuck around for the Evening Cafe and listened to a folk guitar duo on the deck overlooking the gardens. Very nice.

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There was a brew pub across the street from our hotel, and we had dinner there. We were asked to move our table a minute after we were seated so they could fit a high chair in, and we gladly agreed. The man next to us said, "I would have held out for a beer." I laughed and mentioned that to the hostess, who promptly brought us two free beers. Good deal. I wasn't expecting to be rewarded for moving.

Our waitress came over after a while and said, "I would have been here sooner, but I saw your shirt." I was wearing my Red Sox shirt (Number 31, Jon Lester, NHL survivor.) She was sassy, and gave me guff about the Red Sox all night. I gave it back to her of course: when she dropped our check, I asked her if she was doing her A-Rod imitation. (She laughed, and agreed that it was unfortunately accurate.)

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On Sunday, the weather was beautiful -- sun and clouds, high 70's. We checked out of the hotel and stopped at Catherine's Chocolates (how could we not, given our daughter Catherine's obsession with chocolate?), had a quick lunch, and headed to Tanglewood. It was pretty obvious that we weren't going to be able to see the stage wherever we were able to set up (we had lawn seats, and the decent spaces were all taken), so we went for comfort and set up our chairs under a tree, near the bathroom. A bottle of wine, some cheese and crackers, fruit and good chocolate -- the only thing better would have been being serenaded by James Taylor himself, and we got that, too.

But first came John Williams conducting the Boston Pops, doing some of Williams' pieces from Superman, Harry Potter, and Star Wars. This was another of those moments when we thought the kids would have loved being there, especially John with his love of Star Wars. (The kids all love this video tribute.)

James Taylor came out after the intermission, and led off with "Sweet Baby James," which I predicted. I also predicted the predictable cheers when he sand about Stockbridge, ten minutes away. He was great. He sang most of the songs I had hoped he would sing, and we did walk up the front so we could actually see him for a few minutes.

I think this was the fourth time I'd seen him play. The kids (John and Catherine, more than Peter) really like him, and when we travel, I like to listen to him so I can sing along and stay awake while I drive. So, again, they were jealous.

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An excellent weekend all around, and a great way to celebrate Isabel's upcoming birthday and the beginning of my sabbatical.

Thanks Mom and Dad for taking such good care of the kids.

Friday, August 28, 2009

Antioxidants = Bad?

Really interesting (but very early) research from Harvard Med School. Antioxidants, which we know of as ways to neutralize free radicals and possibly prevent cancer, might actually encourage pre-cancerous cells to become cancerous. The research press release is here, but I'll give a summary.


Antioxidants work by stopping a process called oxidation, which is part of a chain of events that can result in cell damage. Basically, when our cells need to create energy to keep going, they use oxygen, and part of what results from that process are "free radicals," which are molecules that can cause damage. Lots of substances (like, say vitamin C) act as antioxidants, sucking in free radicals so they aren't free to...be radical. And, you know, you eat your 5 servings of fruits and vegetables and drink your green tea every day and your wife calls you "The Antioxidant King," and you get cancer anyway.


(And when I say "you," I of course mean "me.")


So these researchers at Harvard were interested in why cancer cells don't die off on their own, which is what usually happens to abnormal cells. It's kind of a key question in cancer research -- what makes some abnormal cells take off and grow into tumors, while others just die off?


They knew that some cells have a particular gene that keeps them from dying a natural death. But these researchers discovered that, even when they have this cancer-allowing gene, they can still die, if they are dislodged from their natural environment. Sometimes that happens -- a cancer cell grows too big and gets pushed out of the place it was growing. So the researchers wanted to know what caused the mutated cell to die off anyway, even though it has this gene that should keep it alive. What was it about being out of their natural environment that caused these abnormal cells to die?


What they found was that when they left their natural environment, the cells had a hard time taking up glucose -- the simple sugar that all cells need to survive (and the sugar that gets measured in a PET scan -- more cells eating sugar quickly means possible cancer). But they also found that the cells had an accumulation of something called Reactive Oxygen Species. Together, these two things (not enough sugar and too much ROS) caused the cells to stop producing ATP, which is the "lifeblood that transports energy" in the cells. The cells were starving to death.


So the researchers decided to work backwards, asking What would allow the sugar to be taken in and the ROS to not accumulate? So they tried two things: giving the cells a gene that would allow sugar to be taken in, and giving antioxidants that would stop the ROS from accumulating.


Both of those things worked. In other words, both of them allowed the cancer cells to grow. The gene allowed the sugar to be taken in. But giving the antioxiodants allowed something else altogether: it allowed the cells to use fatty acids instead of sugar to get enough energy to grow.

It's kind of complicated science, but the point is, the antioxidants allowed cells that would have otherwise died off on their own to continue to grow into cancer cells.


The researchers warned that this was a different type of antioxidant than is normally taken in with food, but it certainly does raise some interesting questions for further research.


I will remain the Antioxidant King until further notice. Pass the green tea.

Wednesday, August 26, 2009

Poverty and Survival

Really interesting article in the most recent issue of the Journal of Clinical Oncology, described in this piece from Medical News Today. A recent study by the Northern California Cancer Center found that those patients who live in poorer neighborhoods have a significantly lower survival rate for follicular NHL. Chances of dying from the disease is about 37% higher, regardless of race or ethnicity, or stage of the disease. Speculation by the researchers is that they can't afford treatments, which makes a whole lot of sense.

And which is pretty sad, given all of the treatments that are out there for fNHL. I'm not going to pretend I understand the intricacies of the health care reform debate, and that I know what the best solution is, but I do know that a few people in the support group have lost their battles with cancer, and problems with adequate care are often a factor. It hits home. (Which isn't to say that everyone in the support group agrees on the solution for health care reform. Very contentious issue, even among people who otherwise have a pretty significant thing in common.)

I hope something gets done soon.

Sunday, August 23, 2009

Stephen Jay Gould

The last post, describing the radio program about cancer, mentioned a couple of points that I've been thinking about, particularly regarding statistics and numbers. We're a kind of number-obsessed culture, something I tell my students all the time: if you can give people a number, you're more likely to persuade them of what you want them to believe. There's a difference between saying "Lots of people will be hurt by this decision" and "75.89% of people will be hurt by this decision." We like numbers. It makes things seem certain.

But I avoid numbers, at least those related to cancer (especially MY cancer) because of that false certainty. With that in mind, I'm posting below an essay by Stephen Jay Gould called "The Median Isn't the Message." It's kind of long, and a little difficult, but worth reading, especially if numbers depress you in the way they sometimes depress me.

Gould was a scientist (his expertise was evolutionary science) and writer -- a really, really excellent writer about science. He had a way of making hard things very easy to understand.

In 1982, as the article explains, he was diagnosed with abdominal mesothelioma, a rare and aggressive cancer. His doctor discouraged him from learning more about it, but, being an academic, he couldn't help but look it up (which I totally understand). She discouraged him because the median survival rate after diagnosis for this cancer was 8 months.

He was able to step back and think more clearly about what that number meant. If you have some background with statistics, it's a little easier, but basically, here's the gist:

The "median" is the exact middle of a bunch of numbers. So for people with his cancer, half would live for less than 8 months. But that means half would live for MORE than 8 months. If you put those numbers on a graph, you'd see that it's "right skewed," as he says. What that means is, starting at the 8 month median, the numbers going to the left (those wo will live for less than 8 months) have only a limited space to go: to zero. The numbers going to right -- those that represent the number of people who live more than 8 months -- don't have a limit. Those numbers can theoretically go on forever. It's not like they have between 8 and 16 months to live (that would be the 8 month "average," not the 8 month "median"). They might have between 8 months and, say, 20 years.

(Which is how long Gould lived after he was diagnosed: 20 years. His death was unrelated to the abdominal cancer.)

The whole thing gave Gould a very different perspective on his illness. It gave him hope, and made him enroll in a clinical trial that saved his life (and the lives of many others afterwards). Too many people with that kind of prognosis would give up. He wasn't ready for that, as he says.

Statistics do matter, but they shouldn't dominate our lives. They should give us some perspective, maybe, but they need to be looked at in more realistic, broader ways.

"The Median Isn't the Message" was first published in Discover magazine in June 1985. The website CancerGuide.com has a copy of the article, published there with Gould's permission. I'm putting here, too, as a convenience. By the way, CancerGuide has a really nice section on statistics, why they're important, and how to read them with hope.

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"The Median Isn't the Message" by Stephen Jay Gould

My life has recently intersected, in a most personal way, two of Mark Twain's famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before - lies, damned lies, and statistics.

Consider the standard example of stretching the truth with numbers - a case quite relevant to my story. Statistics recognizes different measures of an "average," or central tendency. The mean is our usual concept of an overall average - add up the items and divide them by the number of sharers (100 candy bars collected for five kids next Halloween will yield 20 for each in a just world). The median, a different measure of central tendency, is the half-way point. If I line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, "The mean income of our citizens is $15,000 per year." The leader of the opposition might retort, "But half our citizens make less than $10,000 per year." Both are right, but neither cites a statistic with impassive objectivity. The first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean; but he can balance only one mendicant in calculating a median).

The larger issue that creates a common distrust or contempt for statistics is more troubling. Many people make an unfortunate and invalid separation between heart and mind, or feeling and intellect. In some contemporary traditions, abetted by attitudes stereotypically centered on Southern California, feelings are exalted as more "real" and the only proper basis for action - if it feels good, do it - while intellect gets short shrift as a hang-up of outmoded elitism. Statistics, in this absurd dichotomy, often become the symbol of the enemy. As Hilaire Belloc wrote, "Statistics are the triumph of the quantitative method, and the quantitative method is the victory of sterility and death."

This is a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving. It declares holy war on the downgrading of intellect by telling a small story about the utility of dry, academic knowledge about science. Heart and head are focal points of one body, one personality.

In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When I revived after surgery, I asked my first question of my doctor and chemotherapist: "What is the best technical literature about mesothelioma?" She replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading.

Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard's Countway medical library and punched mesothelioma into the computer's bibliographic search program. An hour later, surrounded by the latest literature on abdominal mesothelioma, I realized with a gulp why my doctor had offered that humane advice. The literature couldn't have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery. I sat stunned for about fifteen minutes, then smiled and said to myself: so that's why they didn't give me anything to read. Then my mind started to work again, thank goodness.

If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer. We don't know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. "A sanguine personality," he replied. Fortunately (since one can't reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.

Hence the dilemma for humane doctors: since attitude matters so critically, should such a sombre conclusion be advertised, especially since few people have sufficient understanding of statistics to evaluate what the statements really mean? From years of experience with the small-scale evolution of Bahamian land snails treated quantitatively, I have developed this technical knowledge - and I am convinced that it played a major role in saving my life. Knowledge is indeed power, in Bacon's proverb.

The problem may be briefly stated: What does "median mortality of eight months" signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as "I will probably be dead in eight months" - the very conclusion that must be avoided, since it isn't so, and since attitude matters so much.

I was not, of course, overjoyed, but I didn't read the statement in this vernacular way either. My technical training enjoined a different perspective on "eight months median mortality." The point is a subtle one, but profound - for it embodies the distinctive way of thinking in my own field of evolutionary biology and natural history.

We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous "beginning of life" or "definition of death," although nature often comes to us as irreducible continua.) This Platonic heritage, with its emphasis in clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua. In short, we view means and medians as the hard "realities," and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for its calculation, the "I will probably be dead in eight months" may pass as a reasonable interpretation.

But all evolutionary biologists know that variation itself is nature's only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently - and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation.

When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation's best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.

Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call "right skewed." (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out - left skewed if extended to the left, right skewed if stretched out to the right.) The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower boundary of zero (since mesothelioma can only be identified at death or before). Thus, there isn't much room for the distribution's lower (or left) half - it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran - for I had already concluded that my favorable profile made me a good candidate for that part of the curve.The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn't be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances - substantial time. I didn't have to stop and immediately follow Isaiah's injunction to Hezekiah - set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight.

One final point about statistical distributions. They apply only to a prescribed set of circumstances - in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age.

It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die - and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy - and I find nothing reproachable in those who rage mightily against the dying of the light.

The swords of battle are numerous, and none more effective than humor. My death was announced at a meeting of my colleagues in Scotland, and I almost experienced the delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn't expect to find me so far out on the right tail). Still, the incident provided my first good laugh after the diagnosis. Just think, I almost got to repeat Mark Twain's most famous line of all: the reports of my death are greatly exaggerated.

Friday, August 21, 2009

Radio Broadcast

Monday's broadcast of "The Faith Middleton Show" featured a segment on cancer.


"Faith Middleton" is a local radio show in New Haven on National Public Radio. I have mixed feelings about the show, something like my mixed feelings for John Updike, but much less intense. Faith Middleton has some really engaging guests and topics occasionally, but sometimes the shows are just really bad. (I remember once someone calling in to say she didn't have a question, didn't even know the subject of the episode, and couldn't even get the station on her radio anymore, but was wondering if the show was still on the air, and so called in. I think they do a better job of screening calls these days.)


Anyway, this particular episode is about cancer. There are two guests. The first is Dr. David LeFell, a dermatologist from Yale, who talks about skin cancer. About 10 minutes into it, he gets into the whole vitamin D issue, which I mention because I know it's come up lately with some people who read the blog. If your own doctor hasn't mentioned it to you, the latest advice is to get a little unprotected sun every day, since the sun helps the body develop vitamin D. Also, if your doctor hasn't mentioned it to you because you haven't sen your doctor in a while, then go see your doctor. Regular check ups are important.

The second segment of the show, which begins about 14 minutes in, is an interview with Dr. Richard Frank, author of Fighting Cancer With Knowledge And Hope, and an oncologist/hematologist in Connecticut.


He says some interesting things. The book is about how understanding cancer in general, and your specific cancer in particular, is a way of gaining some hope -- the cancer becomes less scary when you know what you're dealing with. Obviously, I'm an advocate of that approach.


Some other issues he discusses:
  • what survival rate percentages mean, and how to emotionally handle statistics like that (a number means nothing, and everyone is different). It's good advice. Almost every time I get down about having cancer, it's because I've looked at some kind of statistics and let it get to me

  • how exercise and diet can help with cancer prevention and prevention of recurrence, though once the cancer hits, he says, sometimes it's OK to eat pizza or McDonald's. I'm not sure why that's OK, because instead of listening, I started thinking about the white clam pizza at Pepe's in New Haven

  • not dwelling on why you got cancer, but focusing on treating it and preventing a recurrence

  • how quickly new treatments are being developed (the list of treatments in his book, which is a year old, is no longer up-to-date)

  • what "hope" means for cancer patients, and the importance of support groups.

The last segment of the radio show is on Notre Dame football, which doesn't have much to do with cancer, and as much as I'd like to make a joke relating the two, I'm going to hold off.

Anyway, Dr. Frank's book sounds great. He really seems to understand the need for patients to know what's going on with their bodies, and the reasons why we sometimes don't know, and why it's hard for us to know.

Tuesday, August 18, 2009

Stem Cell Transplants

There have been some interesting items in the NHL universe lately about Stem Cell Transplants. There's a nice article from CNN on the Stem Cell/Bone Marrow donation, and another one this week on the same subject in our local paper (but the link is broken so I can't post it for you). All of which comes on the heels of an interesting article about Stem Cell Transplants for Follicular NHL patients.

It's from the most recent issue of The Oncologist, and is titled "Role of Hematopoietic Stem Cell Transplant in the Management of Follicular Lymphoma." The abstract gives an overview of the past and future for SCT in fNHL. According to the article, Auto SCT, in which the patient's own stem cells are harvested prior to chemo, was first developed before Rituxin came about, so there's some question now as to whether an Auto SCT is worth the risk, given the other treatment options available. Allo SCT, in which a donor's cells are used, can be more effective (since the donated cells are guaranteed to be cancer-free), but also comes with the kinds of rejection issues that come with any transplant, and can be especially dangerous for patients with very weak immune systems to begin with.

The authors seem to be advocating a Reduced Intensity SCT, also called a "mini-Allo" transplant. With a "regular" Allo SCT, the patient receives heavy chemo to essentially wipe out the immune system, which is then replaced and regenerated by the donated cells. But that heavy chemo can still be present when the donated cells are introduced, and the chemo can damage those new cells, causing the transplant to fail. The "mini Allo" takes care of that by using less-intensive chemo (or even RadioImmunoTherapy) before introducing the donated cells. The theory is that any cancer cells that haven't been wiped out by the treatment will be taken care of by the donated cells, which will do their job in a normal way -- killing invaders (including cancer cells).

There has been some success with mini Allos. It's often used in patients who are over 70, or who are weakened by multiple chemo treatments, and couldn't handle a full Allo SCT. The authors of the article are encouraging more participation in clinical trials for the procedure (which is what everyone is encouraging, really).

Friday, August 14, 2009

I'm Back

Hope no one panicked that I was gone for almost a week. (Of course, those most likely to panic knew where I was....)

We went up to Massachusetts to hang with the family for a few days. It was nice to see people up there, as always, and we did some fun things.

  • We spent a morning a the Patriots Training Camp, watching Tom Brady and his buddies practice for last night's game against the Eagles. After the practice, some players came over to the stands for autographs. Peter got one from Lawrence Murony, running back, often injured but pretty good when he's healthy. That was pretty cool. The kids enjoyed "The Patriots Experience" afterwards.
  • We did a little fishing, not catching anything, but enjoying some time with Papa.
  • We did a little swimming, enjoying some time with my brother and family.
  • We went to Canobie Lake Park, glad that it didn't rain. (Thanks for the tickets, Karen!) I'm too old for fast or bumpy rides, but the kids enjoyed themselves. Peter won a soccer ball for John by guessing how fast he would throw a pitch, and then won a stuffed mouse for Catherine playing Wac-a-Mole.

Mostly, we spent some nice time with my family. Thanks, everyone, for giving us a good time.

Saturday, August 8, 2009

Another Race (Finally)

I ran a 5k this morning -- first time I've run one since last March. It felt good, and I was pleased with my time: 29:49. I wish I could say I was as pleased with the management of the race...


That's me looking awesome at the finish.

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This race was called the Hope is Coming 5k, and proceeds will benefit the new cancer hospital being built in downtown New Haven. How could I not support this race? I've been looking forward to it for months. I figure they're going to get my money anyway; I might as well get a t-shirt out of it.

I was a little concerned with this race before it even began. The website was pretty sparse with its information. No directions to the race (easy enough to look them up yourself, but it's kind of an expected courtesy). The site listed a start time, but no time when registration would open or close. No map of the route. Little things, but it made me kind of wary about how the race would be managed. I was, unfortunately, justified in my wariness.

I got there nice and early, about an hour before the race began. My foot has still been hurting lately, so I didn't register beforehand, thinking if I was still hobbling that I'd skip it. But it felt good yesterday, so I gave it a shot today. There were t-shirts for the first 100 people to sign up, so I knew that I had a chance of not getting one by not pre-registering. Unfortunately, I missed out. Which was probably fine, since the t-shirt didn't really mention "cancer" much. In fact, the whole race was kind of cancer-free. I was kind of expecting the whole cancer thing to be a little more prominent.

So, no t-shirt, but I did get a "goody bag" from Runner's World magazine, one of the race sponsors. The "goodies" consisted of one ad from Adidas and another one for sunglasses. I guess no one told the race managers that they were supposed to add stuff to the bags from the other sponsors.

I'd been trying to think, over the last few days, of why I've been having foot problems lately. I decided that it might be my shoes -- the only other time I had a nagging injury, it came just after I changed to a different type of running shoe. When I got new running shoes a couple of months ago, I got the same style, but a half size larger. I know one of the things I'm supposed to do for my foot problem is lace up my shoes tighter, so I figured maybe my problem came from wearing bigger (and thus looser) shoes. So at the last minute, I decided to wear my old, half-size-smaller shoes to this race. Unfortunately, I realized as I was warming up that I had forgotten to switch the extra padded stability inserts from my bigger shoes to my smaller ones. So I was running with less padding. I thought of (lymphoma survivor) Mr. T's response in Rocky III when he was asked to give a prediction for the fight: "Pain." That's what I was predicting for my feet afterwards. (I was unfortunately right about that, too.)

I was actually feeling pretty good before the race, and I though I had a shot at a decent time. The race started at West Haven High School and then ran along a beach road, which was beautiful, but a little busy. There were no real safety measures taken for us. One police officer stopped traffic at the first intersection on the route, but other than that, we were basically running in the road with the beach traffic. Not fun.

I was running about 9:13 at the first mile -- a time I was very pleased about. At a mile and a half, the course veered off to the right, and there came another big problem with the race: the water table was immediately around the corner, at the base of a hill. I did manage to see the table (not everyone did), but spilled my water going uphill. Poor placement. I didn't mind the hill, though; I do well with hills, and passed a bunch of people who were getting tired at that point.

But here's the worst part of things: at the top of the hill, we turned left. A couple of blocks away, we were (apparently) supposed to turn left again, back on to the busy beach road. But I saw a whole bunch of people doubling back, having missed that left turn. As we got closer to the turn, we could see a sign with an arrow pointing to the right, which is where those people who had missed the turn had gone. The sign had been attached to a telephone pole with tape, and the tape had come off the top of the sign, so when it fell, it flipped directions, so the left arrow was now a right arrow. When I saw the problem, I ran across the street and tried to fix the sign, thinking that the people behind me really didn't need to run any longer than necessary. I think it fell again after I ran off.

That detour cost me a few seconds, and a lot of momentum. The people I had passed on the hill were back in front of me now. At the two mile mark, I was running at 9:30 per mile.

I was getting tired by now, and a little disappointed that I was slowing down. The two mile mark is usually when I'm hitting a good stride. I gutted it out, though. I came back to the high school at the three mile mark, running at about 27:55. I knew I had a good shot at breaking 30 minutes, but I'd need to pick it up a little.

I was slowed slightly by a woman in front of me, who tripped over one of the speed bumps on the course. She was OK.

When the clock came into view, I knew I could break 30 easily. I sprinted (or sped up to something approximatinga sprint) as hard as I could and made 29:49, which comes to 9:36 per mile. I haven't seen any results posted online yet. Don't know if I will.

The kids came up to me immediately and asked if I had run the wrong way. Apparently, one of the early finishers said she had a GPS on and it said she had run 3.5 miles, not 3.1. I'd be pretty darn angry if I had a chance at winning and it had been messed up so badly.

I hate to trash the management of a race, but this was legitimately bad. I left pretty soon after I finished, but I heard that the race director apologized to everyone for the problems and promised to do better next year. Still, I think I'm especially disappointed because I felt such a connection to the beneficiary. I have little doubt that I will be at this new cancer hospital at some point, for some reason, and I wanted the race to be more special. Other than a woman wearing a red breast cancer ribbon, I didn't see any sign that this was connected to cancer at all.

But I ran a good race, the weather was great, and the cause was worthwhile. I hope they'll get it right next time. I'm sure they'll get plenty of feedback.

Late addition: Results are in. I came in 78 of 142. Not bad.

Friday, August 7, 2009

Follicular NHL Q & A

Interesting piece from CancerWise Blogger, who blogs for M.D. Anderson Hospital in Houston (possibly the premier hospital for NHL -- lots of folks from the support group go there when they just don't know what else to do). The piece is called "Follicular Lymphoma Q & A," and it's basically an interview with Dr. Fredrick Hagemeister, an NHL specialist at Anderson. The entry includes some text questions and answers, plus an 8 minute video where Hagemeister elaborates on some of his answers.

It doesn't really present anything new about fNHL, at least not if you're steeped in the research (and I assume regular readers of Lympho Bob pretty much are), but it's a nice summary of the disease, and there are a few highlights. (Plus a lot of plugs for M.D. Anderson, which is fine, since it's from their blog.)

A few things Hagemeister says that struck me:

  • He thinks that agents that will come to market in the next 2-3 years will have a big impact on fNHL patients' management of the disease and their overall survival. He didn't mention specific treatments, but he seemed to lump them with Rituxin, so I assume he's talking about other monoclonal antibodies, some humanized and/or targeting proteins other than CD20.
  • He implies that there is so much new stuff coming out about treatments for NHL, especially for indolent lymphomas like fNHL, that some oncologists can't keep up with it. I found that fascinating, given what the lymphoma specialist at Yale told me when I saw him a few days after diagnosis: "Everything you read online is already out of date." I can see how a generalist oncologist would have a hard time keeping up. (They need one of those nice academic jobs like I have. That, and a little less sleep.)
  • He talks some about the Tissue Bank at M.D. Anderson, where researchers are trying to keep samples of biopsies from lymphoma patients, plus blood and bone marrow samples. They plan to use it for future research. Sounds great to me.

It's a nice video, though not nearly as funny as the "The Money Mobile"....

Wednesday, August 5, 2009

A Video from the Kids

It rained on Sunday, so the kids (and I) spent the afternoon making a video. It's called "The Money Mobile," and it's a spoof of the TV show "Cash Cab." (Check this link if you've never seen the show. It's kind of a "Who Wants to be a Millionaire" that takes place in a NYC taxi.)

The music that you hear in the video is called "Dancing Feet Set" by the band MacTalla Mor, a very cool Celtic Rock fusion band we've seen a few times locally with the kids. Peter, our 12 year old intellectual property lawyer, wanted to be sure I gave them credit here, since I forgot to do so on the video. Plus, I'm happy to throw some love their way.

The children welcome your feedback. Enjoy.


video

Tuesday, August 4, 2009

Leukemia

I was going to call this "The Other Blood Cancer," but that made leukemia sound a little too much like pork.

A couple of leukemia-themed items that are related to lymphoma (in good ways).

First, Dr. Janet Rowley is going to receive the Presidential Medal of Freedom. Rowley is a leukemia researcher, and is best known for showing that there is a genetic basis for cancer (particularly blood cancers). In other words, she showed there are abnormalities in genes that may result in cancer. This is the kind of research that leads to "personalization therapy" -- figuring out whether a particular treatment will work on an individual patient before it is administered. Her more recent research looks at chromosomal abnormalities in both leukemias and lymphomas. Her research "revolutionalized how cancer is understood and treated." Always nice to have someone in The Family be recognized with the nation's highest civilian honor.

And in other news: last week, an article was published in the journal Cell that described research on how leukemia cells (and possibly those of other cancers) can go undetected by the body. Usually, an abnormal cell (the kind that can cause cancer if it gets out of hand) is detected by the body and is basically eaten by a cell called a macrophage. Researchers have discovered that certain leukemia cells have a protein called CD47 on their surface. This protein acts as an "invisibility cloak," telling the macrophages "Don't eat me!" (Those were the terms used in the article I linked to. I love it.) The invisibility cloak allows the cancer cells to move through the spleen, liver, and bone marrow -- the places where macrophages would normally eat them. Instead, the cells attach themselves to those places. CD47 is usually present on normal blood stem cells, which is what allows them to travel through the body as they develop. The researchers found that using an anti-CD47 antibody (like the way Rituxin targets CD20), they were able to remove the cloak and allow the macrophages to kill off the cancer cells, based on the level of CD47 on the cell (cancer cells have higher levels, so the normal tem cells were left alone).

The CD47 discovery may end up helping us understand more cancers than the one that was researched (acute myeloid leukemia). Indeed, CD47 was first discovered on ovarian cancer cells. So this could be another step for lymphoma.

Sunday, August 2, 2009

Yes, I am tenured. Why do you ask?


Sometimes a comic just speaks to you, ya know?



Saturday, August 1, 2009

Two Follow-Ups

First of all, good luck to my brother as he rides in the Pan Mass Challenge this weekend, raising money for cancer research by riding his bike at ungodly speeds for insane distances.

If you donated to the cause, I thank you. And so do other cancer patients, and the good folks at Dana Farber.


Ride on, Mike.


********************

Soon after I posted my last entry, in which I included a throwaway comment about people under 40 having cancer, there appeared on Newsweek's website an article called "A Malignant Melanoma Walks into a Bar...." It's about how young people in their 20's and 30's are using humor to cope with cancer. They have blogs with names like "Cancer Is Hilarious," and "My Blood Hates Me" amd "What's Up You Butt?" Plus some others that I can't mention in a family blog. As the article says, "Virtually all of them are written by cancer patients younger than 40. The blogs are just one way younger patients are addressing the absurdity of life with cancer with humor, rather than pink-ribboned, glassy-eyed earnestness."

Again, I say, where's the love for the barely-over-40 crowd? Haven't I been advocating the use of humor for a year and a half now?

Seriously, though, it' a nice article. I'll warn you -- it's an honest one, with some adult subject matter and some very open and clear language. But that makes a lot of sense, since it's written by a young cancer patient: support for older folks is about turning inward, being positive and spiritual. Younger people are no less positive and spiritual, but they're much more "outward," in my experience: they share every little detail of their lives on Facebook. It makes sense for them to write blogs and not keep it all inside. They don't shrink away from cancer. I've said that before, too -- shrinking away is an old way of thinking. Young people don't whisper the word "cancer" or call it "The C Word."

So maybe my attitude puts me in the "I'm Too Young For This!" crowd. I missed the official age cutoff by only 6 months and week.