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The memory of things gone is important to a jazz musician. Things like old folks singing in the moonlight in the back yard on a hot night or something said long ago.
- Louis Armstrong

Neurosurgeon Appointment

vaccine, Brain Tumor 3 Comments »

I mentioned that Rachael and I had an appointment with my neurosurgeon to go through our strategy moving forward.  Rather than go into a lot of detail regardint the hour-long discussion, here is what came out of it:

  1. We knew I had been “accepted and approved” into the DCVax-Brain program.  The final hurdles were a) did they have enough tumor to manufacture the vaccine and b) did I have the genetic markers necessary for this to work.  The answer to boh questions is YES!
  2. We were asked about treatment options.  First is conventional.  You perform surgery then use standard chemo.  The second is a clinical trial that has been established.  The third is experimental (the vaccine)
  3. We have opted for the vaccine, however, we have also decided to do a consult at UCSF to see what other phase I/II trials they have so we aren’t putting all of our eggs in one basket.

As with anything, experimental is just that - it could yield amazing results but there could also be side effects.  Regardless, we have to be aggressive so that is why we are going with the vaccine

More to come on all of this.  It will take 4 weeks to manufacture the vaccine so in the meantime I’ll rehab my left side and spend time with my family…

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DCVax-Brain Vaccine Trial

Surgery, Prayer, Resources (Brain Tumor), Christian, Brain Tumor Research, Brain Tumor 6 Comments »

I mentioned that we pushed the surgery one week to give us more time to seek a trial that allows me to take advantage of a new vaccine that is showing amazing results in GBM patients (GBM = Grade 4 brain tumors which is what my tumor have now become based on our impressions of MRI).  The vaccine that is our focus is called DCVax-Brain. 

DCVax uses a patient’s own dendritic cells, the starter engine of the immune system. The dendritic cells are extracted from the body, loaded with tumor biomarkers or ‘‘antigens’’, thereby creating a personalized therapeutic vaccine. Injection of these cells back into the patient initiates a potent immune response against cancer cells, resulting in delayed time to progression and prolonged survival.  DCVax-Brain is designed to specifically target Glioblastoma Multiforme (‘‘GBM’’), the most lethal form of brain cancer. DCVax-Brain has entered a Phase II FDA-allowed clinical trial, which is designed and powered as a pivotal trial (i.e. a trial from which the antigen developer may go directly to product approval). Following this trial, the maker anticipates filing a biologic license application (or ‘‘BLA’’) with the FDA for DCVax-Brain.  

Based on trials covering calendar year 2007, the long-term follow-up data are now as follows.  Look, if you have been reading my blog for any length of time at all, you know I’m not someone that holds on to stats but if your journey in fighting a primary brain tumor moves into this territory, you have to look at this data if you are choosing alternative treatments.  Fortunately for me, I have God working in my life so incredibly that my Neuro-oncologist is on top of the world of brain tumor trials, alternative treatments, etc. and we are pulling out all of the stops.  So, go for a 100% resection next Wednesday and follow that up with the DCVax vaccine.

Data so far:

  •  8 of 19 patients are still alive (ranging from 24.5 months to 92 months), with median overall survival in all patients of 33.8 months (p < 0.0079) (the “p value” measures the likelihood that the observed clinical effect is due to chance:  a ‘p’ value of 0.0079 means that there is a less than 1% possibility that the longer survival time of DCVax(R)-Brain-treated patients is due to chance);
  • 5 of the 8 patients who are still alive show no signs of cancer recurrence, with follow-up time ranging from 41 months to 92 months;
  • The median time to progression (i.e. tumor recurrence) is 18.1 months,  compared to 8.1 months for patients treated at UCLA during the same time period (p = 0.00001);
  • 90% of patients have surpassed the Standard of Care median time to progression of 8.1 months;
  • 84% of patients have surpassed the Standard of Care median overall survival time of 17.0 months;
  • To date, 68% of patients receiving DCVax(R)-Brain in addition to Standard of Care have lived longer than 2 years, 42% have lived longer than 3 years, and 26% have lived longer than 4 years (48, 54, 57, 62 and 92 months so far);

So, my humble request?  Please pray that I can be enrolled in this trial.  This trial will yield so many benefits for me and my family.  It will extend my life, allowing perhaps other treatment modalities to come along and further extend my life.  26% of patients living longer than 4 years.  That’s amazing.  And some out 62 and even 92 months - with a GBM?  Unheard of.  So please pray for this and my second request is if you could pray for my surgery and my family - just that everything goes well, that my family has comfort and peace, can garner strength in the Lord and they do not forget He is there - that my young sons are protected and safe, are encouraged.

Thanks to everyone….

God bless

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fMRI - Prelim Results

MRI, My Story, Brain Tumor 1 Comment »

Well, the preliminary results came in last night as I met with my Neuro-oncologist.  Not so good.  My last MRI showed a slight bit of contrast as you may recall but no growth which was good news.  However, in the 60 days or so since then, it’s doubled in size.   It’s still small compared to many malignant brain tumors but it’s now behaving more aggressively.  60 days ago it was 1.2 cm x 0.7 cm.  Per this scan, it’s now 2.1 cm x 1.6cm.  There is more contrast and it’s looking higher grade than before.  We’ll perform what’s called a perfusion MRI very soon which is the best way aside from biopsy to try and determine grade.  Grade 3 tumors can behave this way - it doesn’t mean it’s higher grade. 

On the positive side of it all, there are a lot of options on the shelf.  The only option that isn’t available is partial brain radiation.  My brain has already been treated with 60Gy which is the maximum so we can’t go there.  There are other modalities of treatment however that can be used to attack the problem.  Certainly surgery is one and if that is the choice, it would be less complicated from a recovery standpoint because last time I followed the surgery with 5 weeks of radiation w/concurrent chemotherapy.  Radiation won’t be part of it if that is the option taken. 

The fMRI from yesterday also mapped what areas of motor strip in my brain control certain motor functions in relationship to the location of the brain tumor.  This technology, which the Neuroscience Institute didn’t have a year ago (they had something called “brain lab” which was sort of step down, less precise method of mapping) provides for much more precision when resecting a tumor in ensuring that neurological function is preserved.  Of course it’s brain surgery so it’s always risky but the fRMI is a huge help and a risk mitigator.  Secondly, there is Gamma Knife.  I don’t know if this is an option or not.  If traditional surgery is, this might also be an option in lieu of survery.  It’s a preferable option if it can be just as effective because it’s a non-evasive, walk-in/walk-out, same day treatment.  Most rest for a few days then get back to normal actives in a few days - slowly.

Chemotherapy will be something I’ll have to resume at some point but not now.  I have to stop the growth so that’s the first order of business.  As I said though, the previous surgery set up future surgeries.  My neurosurgeon did a few things to provide easy access to the area of the tumor so getting to the area is much easier and quicker.  The fMRI will be of great assistance.  The fact that it has grown and I have been leading a normal life the last 60 days (1 mild focal seizure) seems to tell me this growth isn’t pushing up against the motor strip (theoretically anyway) so it’s a matter of sitting down with the team and making some decisions. 

More later but we need to figure some things out.  Is it hard?  ABSOLUTELY!.  This sucks.  But we can’t do anything about it.  I worry about finances, going on leave, impact on my family and all kinds of things.  I worry about everything else more than I do myself but we have to put all of that on the side and just focus on what we can for now.  You see, we can’t have it double again.  It can’t evolve into a grade IV.  So we fight - we hammer on it in the best way possible within whatever constraints we have in life.

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fMRI - Moved Up to Tomorrow - 9/29/08

MRI, Brain Tumor No Comments »

My next scan was originally scheduled for October 6th but I have experienced a few focal seizures over the past several weeks that have made us decide to move this up and take a look now.  The last seizure wasn’t real severe but was enough that I took some additional meds to put it away.  This time we are doing something different, too. 

The type of imaging study that is being performed this time is an fMRI, or Functional MRI.  Subjects participating in a fMRI study are asked to lie still and are usually restrained with soft pads to prevent small motions from disturbing measurements. This really isn’t any different from a standard MRI - you’re always given pads around your head and arms.  Anyway, the primary difference with an fMRI study as compared to a standard MRI (both can last 1-2 hours - how fun to be in a “tube” that long, huh!) is subjects may view movies, hear sounds, smell odors, perform cognitive tasks such as memorization or imagination or in my case, press a few buttons and perform other motor function tasks using my left-side (recall I have a right-frontal brain tumor - deficits are contralateral so we want to see impact to the left side).

So, put simply without getting into a lot of scientific jargon, the goal of this is to “map” more or less the areas in and around the tumor that are directly affecting certain motor functions (the movement of my left shoulder, or knee, or fingers for example).  When we know that, we can determine what areas of the tumor could be relatively safe to debulk with limited neurological deficits - at least in theory.  Nothing is without risk.  After all, this is brain surgery.  So, we’re aren’t preparing for surgery here at all but given the seizures we need to see what is going on.  We’ve been watching it every 60 days so this time we just moved it up a bit - no big deal.   

Here is a picture of an fMRI machine to give you an idea of the environment.  Again, getting tubed an hour or two (and sitting absolutley still) is a chore, but I have done ok with it so the technicians have said.

 fmri.jpg

And guess what?  I can’t do anything about what is going on, can I?  Nope.  I pray for the best outcome.  We know that God is in the middle of our lives - Rachael, Aidan (6) and Keegan (1).  It’s certainly hard not to let physical symptoms get to you - I won’t lie.  But when they do, you just have to keep rolling along.

I’ll post results here when I can.  As I mentioned before - the lack of posts means I’m doing good!  I’m enjoying life.  Soccer has been a blast with Aidan.  Being involved, running around a field in soccer clothes (I used to play competitively) and playing with him and all of his team, helping with the coaching and teaching the kids - what a great experience and just a few months ago I was on chemotherapy. 

More in a day or two….

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Feeling Great!

My Story, Brain Tumor 1 Comment »

I’m really getting back to a pretty normal life now.  My son Aidan is starting in on his first year on a soccer team, I’m coaching so I’m out there on Wednesdays and  Fridays with games on Saturdays that start in September and all in all being off of chemotherapy for 6 weeks or so (can’t really remember how long now!) has been great.  I certainly remember what it’s like - and when I was on it I just accepted life as it was - you have to.  But I’ll take this.

The only issue I’m dealing with is I’ve had some small focal seizures in my left bicep that are more like muscle spasms but my neurologist and I both agree they are not.  I could chase them with meds or just take an extra pill when they occur which is exactly what I’m doing.  They occur every once in awhile and are more of an annoyance than anything.  They don’t happen too often.  I had a period about a week ago where I had them over a 5 day period every day for awhile, some lasting for 30-45 minutes.  However, the instructions here are not like before.  Before, if they lasted more than 15 minutes it was “go to the ER” but because these are so mild I just ride it out.  One day I did take an Ativan and went to sleep.  Other than that, all is good.

We are going on vacation for the first time in a long time!  Heading to Victoria BC.  We’ll be gone for 5 days, just the two of us.  We haven’t gone away since we went to Paris and that’s been over 2 years.  Well, the last 2 years we’ve had a job change and major move, a high risk pregnancy w/bed rest, a brain tumor diagnosis with surgery, radiation, chemo, emergency c-section and first year with a newborn.  Kind of prevents you from taking a vacation!  So, I’ll post some pictures when we get back.  Victoria is beautiful.  I went there a very long time ago but remember it well.

That’s it for now but I’m feeling about as good as I did in May of last year before my surgery in June.  I’m playing some music when I have time.  It’s a bit more difficult with Keegan.  My studio isn’t as sound-proofed as I would like.  I’d like to move the whole thing into a walled off area in the garage which is a three car but it’s a big job and with what’s going on, I’m not sure it’s a good idea.

Cheers,

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A Cold And An Old Foe

My Story, Brain Tumor No Comments »

As luck (or a hashed immune system!) would have it, I ended up with a cold.  Who cares at this point - it’s par for the course and I’m working on bringing myself back out of this over time.  It will take about 6 months and I will take antibiotics the entire time which will help me.  Now I’m not sure if this was caused by me, but my son woke up on Wednesday morning with a terrible cold - running a temperature and the whole nine yards.  I’m watching out from all sides!  He’s worse than I am for some odd reason.  I feel bad for him - he’s been in camp all week and had to miss yesterday and today.  I’m hoping he can finish out tomorrow at least.

Also on Wednesday I had some strange sensations in my left bicep - just slight contractions on and off in the afternoon.  They started again in the evening and at that point I knew it was my long lost friend - focal seizures.  So, after a period of time I became annoyed with it (I was trying to watch Dateline or something) and took an additional 200mg of Lamictil and they said goodbye.  For those of you that can’t envision this - this time it was like having a strong twitch in an area of your body - you try to turn it off but you can’t.  You see, a focal seizure can be as simple as that or a marching numbness in your hand or arm.  So many people have this classic vision of a seizure - someone flopping around on the ground.  That’s just not what they are all about.  There are a lot of different types.  I spoke to my neurologist about it - there’s nothing you can read into this.  It means nothing.  People can have clean scans for years and have seizures throughout - I actually never have them since 7 months ago or so.  People can have tumor growth and no seizure activity.  It’s just not an indicator of anything.  So you deal with it which is why when it happened I took a pill, talked to my wife about it and went about my business (back to the Dateline thriller!). 

You just can’t get all caught up in this stuff - you have to have faith in God and turn it all over to Him - period.  Could you imagine if I took every issue - a seizure, an upcoming MRI scan (I have one next Tuesday), some weakness I feel on the left side of my body, statistical survival rates, etc. and worried about them and placed it all on my shoulders?  I’d be an anxiety-ridden mess!  I remember when I came back to work and had 2 weeks of radiation left.  I was worried about how I’d get through that and still work but I turned it over to God.  And?  And I worked, left at lunch and went to the Institute and had radiation treatments, came back to work and finished my day - and I was on chemotherapy at the same time.  I got through it but not because of me - I had some help there.  The task ahead of you is never greater than the power behind you, right?  It’s true.

I have my 60-day MRI check on Tuesday - see my Neuro-Oncologist on Wednesday to discuss and then I’ll be done for a few months.  Things are good! 

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Survivor Stories

Brain Tumor, Resources (Brain Tumor) 1 Comment »

Here is a 50 minute video presented by the Central New Jersey Brain Tumor Support Group.  These are brain tumor survivors who deal with the same circumstances we do if you too are facing a brain tumor diagnosis.  They share their stories and these are very positive stories - people who are facing grade 3 and 4 brain tumors who are getting along well.  I would encourage you to watch this.

It is amazing if you haven’t ever been around other survivors or formed relationships with others how there is this common zeal for life.  We have a different perspective, now.  I have talked about this before.  It’s not that I didn’t appreciate life before - I just look at life differently and I live every day more fully.  Put simply, when your life is placed in jeapardy and could be taken from you, your perspective is rearranged for you a little bit.  And, in my view, that’s not exactly a bad thing.  There is positive in all of this.

It’s about looking forward.  You can’t get stuck and stay in one place - be stagnant and dwell on the diagnosis for example.  Ever try to sit on a bike without going forward?  Doesn’t work - it falls over.  We have to move forward.  The survivors on this video are all moving forward.  Check it out.

 

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Test Results

MRI, Brain Tumor 1 Comment »

Thank you all for your thoughts and prayers this week - they are so appreciated. To cut to the chase, my studies came back and showed stability with no growth! Needless to say we are so happy. There are some interesting observations to be made regarding the results that I will get into but the real take away here is that everything is stable and either my treatment is effective or the tumor itself is just not growing. I have discussed before that there is really no way to prove that ongoing chemotherapy is the reason for stability, however, given I had experienced tumor growth between January 2007 and May 2007, had surgery in June and then from that point forward I have had stability we have to assume the radiation and chemotherapy are doing the job along with supplements and other steps I have taken in my life.

Now to the results. I will spare all of you the report details and just paste in the impression section from each study which is the most important.

5/27/08 MRI Brain w/wo and Perfusion MRI

IMPRESSION: NO SIGNIFICANT CHANGE SINCE PREVIOUS EXAMINATION. THE PERFUSION STUDY DOES NOT SUGGEST A HIGH-GRADE LESION. THERE IS A SLIGHT DEGREE OF GADOLINIUM ENHANCEMENT SIMILAR TO PREVIOUS STUDY SUPERIMPOSED ON AREAS OF INTRINSIC HIGH T1 SIGNAL.

This test included essentially two parts - a standard MRI that looks at the tumor anatomically - I always have this every 60 days and that has been coming back stable. A second study was run that I have never had before that is called a Perfusion MRI. This is a special technique for evaluation of microscopic blood flow in cerebral capillaries and venules. It basically creates what is called an MRI perfusion “map” of a high grade brain tumor and demonstrates areas of increased capillary blood volume in the tumor. This technique is used quite frequently to demonstrate areas of a tumor with highest malignancy potential to aid biopsy planning (a biopsy should target the highest malignancy areas because the WHO grade of a tumor is based on the highest grade cells found in the tumor).

Ok, out of breath now but I think it’s good to understand this stuff. You can always blow by all of this stuff if you want of course. So what does this impression above mean - it says that it doesn’t suggest I have a high-grade lesion? Huh?! Well, we know I do. Pathology resulting in a grade 3 oligoastrocytoma dx trumps any imaging studies. However, to put this in simple terms - when a tumor is growing or becoming more aggressive, it requires more blood. To acquire more blood, it needs to increase vascularity (growing more veins basically) which allows more “throughput”. This study says that this isn’t happening. GOOD NEWS! On to the PET scan.

5/28/08 Brain Imaging PET Metabolic

IMPRESSION: THE PET SCAN HAS REMAINED UNCHANGED COMPARED TO THE PREVIOUS EXAMINATION DONE ON 03/15/07. THE LESION IN THE RIGHT POSTERIOR PARASAGITTAL FRONTAL LOBE IS RELATIVELY HYPOMETABOLIC SHOWING UPTAKE APPROXIMATELY EQUAL TO NORMAL WHITE MATTER AND SUBSTANTIALLY LESS THAN GRAY MATTER. THIS WOULD ARGUE AGAINST A HIGH-GRADE NEOPLASTIC PROCESS BUT DOES NO RULE OUT A PERSISTENT LOW GRADE NEOPLASM.

PET stands for Positron emission tomography and is an imaging technique which produces a three-dimensional image or map of functional processes in the body - in this case the brain. Without getting into major details, like the perfusion test above, it will look to see if there is metabolic activity - we want this test to come back showing that my tumor is hypometabolic, not hypermetabolic. Also, what is typically done is the PET “map” that is generated is typically overlayed on top of the MRI scan so the Neuroradiologist can look at anatomic and metabolic views (what the structure is and what it is doing biochemically).

Ok, having said that, no change since my PET scan in March of 2007. This is great news. Also, like the perfusion study, they concluded that this would argue against a high-grade neoplastic process (high grade tumor). Again, we know it is so the take-away here is it’s not growing, it’s stable and metabolically it’s not changing. This is all great news!!

For those interested, here is an image of a Brain PET/MRI fusion:

Brain Pet Fusion

When first looking at these results, it would be easy to think I have a lower grade tumor but that simply isn’t the case. I saw the results and it created confusion at first. I thought “this is odd - this completely contradicts the pathology?” However, I remembered, too, that mixed gliomas can behave like low-grade tumors on film as well - and they can fool many neuroradiologists into thinking they are in fact low grade or even infarcts related to strokes if being discovered for the first time. This is why it was so important that I had everything looked at by UCSF and Mass General back in May of last year.

And speaking of that, it has been a year since I was “officially” diagnosed. We knew well before that time what we were dealing with but the official diagnosis came down in May and here at the end of June it will be 1 year since my craniotomy - and 2 weeks after my craniotomy my 2nd son, Keegan, was born so he will be having his first birthday. Needless to say, we will be having a much calmer June this year than we did at this time last year. It’s hard to even keep things straight when thinking back to last year - it was surreal. But I will say this, we know that we can walk through anything. Our family has endured. And we know that with God’s guidance, we aren’t alone in any of this. This type of trial tests every ounce of your character. It pushed us to what we thought was the brink only to find that it was going to get harder. But we knew that it was temporary as hard as it was - one day at a time we could walk through it. Life is hard sometimes which is why we have to enjoy every day. Are blue birds singing at my window or yours every day?! Nah. But, some days they are! And the more I can focus on the positive in my life, what I have today - my family, my two wonderful boys, a renewed appreciation for the gift of life (really, I think human nature just does this if you are faced with a diagnosis such as mine) and so many other luxuries that many in the world don’t have.

Thank you again for your thoughts and prayers. A big week indeed. I will continue on chemo - we talked about that. It is harder as time goes on - your marrow keeps getting hammered and after awhile it basically says “I keep getting up and then I get hammered again so why should even try recovering anymore!”. Therefore, the fatigue sets in more consistently. But, I’m finishing cycle #8. I want to make it to 12 - 1 year. Then I will finish. Both UCSF and the Neuroscience Institute agree that if I can tolerate the treatment it’s the best course.

Keep on going….

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What a Brain Tumor Can’t Do…

My Story, Brain Tumor No Comments »

A brain tumor is so limited that:

It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit…

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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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