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I think a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles.
- Christopher Reeve

7/28 MRI Results

MRI, Brain Tumor No Comments »

My MRI was on Tuesday and I had an appointment yesterday with my Neuro-oncologist.  Overall the news was good.  The size of the tumor has not changed which is great news, again.  There has been an increase in what is called T1 shortening and mild enhancement associated with the lesion.  In layman’s terms, this means the blood-brain barrier of the cell walls have broken down somewhat - it’s a vascular change in the tumor is all.  A change - it’s irritated for some reason.  The cause?  It could be from all of the treatment over the last year.  It’s been hit with a heavy course of radiation with concurrent chemotherapy over 5 weeks.  The was preceeded by surgery which resulted in a biopsy and finally I completed 8 1/2 rounds of chemotherapy.  So this is really my first post-treatment scan.  The report indicates that this “could” be related to post-treatment changes and of course recommends continued follow-up imaging.  We are doing that anyway.

This is the first scan that they haven’t used the term stability but my doctors also didn’t say this is anything to cause major concerns - we just need to keep watching it.  And they all know me very well!  I’m the straight shooter.  Reality is all I want to hear so no holding back ever happens here. 

I’ve said it before and I will say it all the way down the road.  It’s all in God’s hands here.  We are all human and I have my own times when I can sit and reflect on what is happening in my life, our lives - think about my two kids, my wife and what all of this means to us.  But in the end, we all know that a lot of analysis and worrying isn’t very helpful to our daily lives.  So we are human - there is not some kind of power we can employ to feel “ok” about everything all the time, but you accept it - you accept your circumstances because you have to and I have learned to live with it - and so has Rachael but around the time of my scans we feel vulnerable and it’s hard not to think about it because it’s put front and center.

In a week Aidan starts soccer - every Wednesday and Friday we’ll be going to practice from 6:30 to 7:30pm.  That will be a lot of fun for us - a great Father/Son time.  He loves to get out there and kick the ball, run around and just have a great time and I think he really loves to kick the ball further than his dad.  Games every Saturday until November.  He is a competitive little boy - we’ll see how this goes but I know it will be a lot of fun - probably more for me!

That’s it for now… 

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A Survivor From Day 1

My Story, Brain Tumor 2 Comments »

I was out on a few internet boards this morning and found an interesting post that posed the question “what constitutes a brain tumor survivor?” The discussion centered around whether or not a “survivor” was dependent upon having met some type of milestone in recovery, whether that be measured in time since surgery, clean MRI scans, completion of chemo, a certain quality of life, etc. Without passing any judgement, because I really don’t - everyone is entitled to ask questions, but I was a little bit surprised to see that post. It could be just me, but I firmly believe (and I said so in my reply to this post) that a brain tumor survivor is a survivor from the day they are diagnosed. If that person wants to make the choice to view themselves as such is of course up to them, but the premise is simple to justify and completely appropriate in my humble opinion.

Put it this way. If you are living with something that threatens your life, you are surviving. If you are employing treatment modalities to fight (survive) for your life and, as we all are trying to do as suvivors, maintain the highest quality of life that we can, you are surviving. In many cases we are thriving and this is a blessing. Let’s put it another way. Suppose you are shipwrecked and you are the only one on the beach. You feel completely alone (as many of us do the day we are diagnosed). Are we dead on the beach? Let’s say that being shipwrecked is being told we have a tumor and sitting on the beach is our circumstances. We could choose to view this whole situation as the end, just as we could our brain tumor diagnosis. Again, are we dead? No. We can go climb trees, find coconuts, food, shelter (i.e. treatments) and survive - right from day #1. My point is we ARE survivors, from the beginning. There is no magic milestone. There is no graduation ceremony at a year or six months that we attend where we get a diploma that says we now have a Masters Degree in Brain Tumor Survivorology. So you walk with a cane? Ok. So your vision is impaired? You have major neurological deficits. We are survivors. Period. It’s all in God’s hands anyway and as survivors, we can be examples for others. There may be people in your very family that will have the fight of their life 10 or 20 years from now and when they do, they will remember - yes, they will know how you are facing your adversity, with courage, strength and hope. And that may be the very thing - and could be the only thing, that pulls them through. Think about that.

We live with brain tumors and we live with zest - we try to live each day, for each day. The past doesn’t matter. It’s gone. The future doesn’t matter either. I had to plan out some things, and I’ve talked about that in posts. As a husband with children, I have everything lined up correctly so if something does happen to me things are handled. Other than that, we live in today and we are survivors and in many cases we thrive…

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The Median Isn’t the Message

My Story, Brain Tumor 1 Comment »

I’ve spent a number of posts speaking of statistics and attitude. I think every brain tumor survivor - and cancer survivor for that matter should give “The Median Isn’t the Message” a good read. The prefatory note by Steve Dunn says a lot about this piece of writing in one sentence: “It is the antidote both to those who say that, “the statistics don’t matter,” and to those who have the unfortunate habit of pronouncing death sentences on patients who face a difficult prognosis.”

The Median Isn’t the Message

Prefatory Note by Steve Dunn

Stephen Jay Gould was an influential evolutionary biologist who taught at Harvard University. He was the author of at least ten popular books on evolution, and science, including, among others, The Flamingo’s Smile, The Mismeasure of Man, Wonderful Life, and Full House.

As far as I’m concerned, Gould’s The Median Isn’t the Message is the wisest, most humane thing ever written about cancer and statistics. It is the antidote both to those who say that, “the statistics don’t matter,” and to those who have the unfortunate habit of pronouncing death sentences on patients who face a difficult prognosis. Anyone who researches the medical literature will confront the statistics for their disease. Anyone who reads this will be armed with reason and with hope. The Median Isn’t the Message is reproduced here by permission of the author.


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.


Postscript By Steve Dunn

Many people have written me to ask what became of Stephen Jay Gould. Sadly, Dr. Gould died in May of 2002 at the age of 60. Dr. Gould lived for 20 very productive years after his diagnosis, thus exceeding his 8 month median survival by a factor of thirty! Although he did die of cancer, it apparently wasn’t mesothelioma, but a second and unrelated cancer.

In March 2002, Dr. Gould published his 1342 page “Magnum Opus”, The Structure of Evolutionary Theory. It is fitting that Gould, one of the world’s most prolific scientists and writers, was able to complete the definitive statement of his scientific work and philosophy just in time. That text is far too long and dense for almost any layman - but the works of Stephen Jay Gould will live on. Especially I hope, The Median Isn’t The Message .

© Stephen Jay Gould

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5-Day Chemo Regimen

My Story, Chemotherapy, Brain Tumor 2 Comments »

Well, I have decided that when I am finished with cycle #5, I am going to try the 5-day chemo regimen. With this schedule, I will take Temodar for 5 days and then be off of the drug for effectively 23 days each month. I mentioned in a number of posts back in the October time-frame or so that the reason I was on this 7-day alternating week schedule was due to the improved survival rate. There are studies that indicate this is true, particularly when taking the drug every day at a lower dose as I did concurrently with radiation therapy post-surgery. However, I opted for a 7-day alternating schedule because I just couldn’t deal with being on the drug 24/7/365 so-to-speak. As the cumulative effect has developed, however, it’s become more difficult to recover each week on the 7-day.

It’s a difficult, strange new land to navigate - full of decisions to make and everyone has a different opinion. There is no doubt that the radiation and Temodar as the chemo of choice and used concurrently were right on target. The questions are the regimen and secondly how long. Some people take this drug for 2 years. The “standard of care” is 6 months. My oncologist is probably going to recommend 1 year. So, if you have stable MRIs through a year, obviously coming off of the drug is a little bit unnerving. However, there are long term side effects to taking this drug - such as Leukemia. One thing is for certain, based on research and discussions I have had, it doesn’t appear there is any benefit to using Temodar beyond 24 months.

In 2 weeks I will sit down with my Oncologist and discuss this but I’m definitely going to try the 5-day. It will be about 100mg more per day - 400mg instead of 300mg. I’ve tolerated it well so we’ll see how it goes but the goal is to have more quality time each month with my family. It’s not terrible and I make it through ok but if I can improve it, particularly given the little data re: survival rates and the significant data backing up the 5-day, that would be great. Additionally, I have done the alternating regimen for nearly 6-months so I feel good about that.

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Next Steps & Enjoying Life

My Story, Chemotherapy, Brain Tumor 2 Comments »

In discussing my scans with my oncologist, there were no revelations of course. However, I did get into a lengthy discussion about the 6-month decision point. I also talked with her about my fatigue and we discussed some options. At the 6-month mark, I will likely stick with Temodar for another 6 months. At one year, I would come off of chemotherapy altogether and then just watch it and see what happens. This is all assuming there is no growth detected and that I continue to be asymptomatic. If there is growth, then other options would be brought to bear. After a year of Temodar, the effectiveness of the drug is really called into question when balanced against the effects it has on one’s body. There are people that are on there 20th, 25th or even 30 some odd cycle of Temodar but my oncologist really believes this is far beyond the drug’s ability to be effective.

In terms of fatigue, she suggested I could try the 5-day a month chemo - it does fly in the face of what I’ve been doing in terms of studies that have shown increased survival rates when taking the drug every day (I opted every other week due to my lifestyle and families’ needs) but nonetheless, it was placed on the table. There is also a regimen of 21 days on - she said most don’t even realize you are on it. I can try both but I’m in a routine and am not sure I want to. The 21 day is definitely not something I want to do. The 5 day increases the dose from 295mg to 400mg - not sure how that would be. Fellow survivors that I know who are on that regimen have varied success - some are just fine with it, some have some issues with stomach aches/tightness and others have very bad nausea. I have done fine with Temodar so I may be ok but I might stick it out.

Today was a good day - we packed a picnic and went to the park. Keegan was happy on the blanket and Aidan enjoyed himself. For Rachael and I it was good to get out and enjoy some time - the weather here is unseasonably warm - in the high 60s so that makes it perfect for an outing like this. Seeing Aidan grow is amazing. He has no fear. He’s going down steep hills on his Razor and picks up such high speeds that it makes me nervous! He starts wobbling and correcting his steering and I’m just ready for a major wreck but he pulls it off every time. He’s fallen but he always gets up and dusts off his pants and keeps going

It was a good day.

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