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Quote of the Day:

Music happens to be an art form that transcends language.
- Herbie Hancock

Chemo Strategy

Chemotherapy, UCSF No Comments »

At this point I’m in full research mode on chemo.  The conservative recommendation is to continue on my alternative 7-day regimen through the 1 year milestone.  However, there are no studies or hard data to suggest that it improves survival rate.  The problem so far as I can see is that all of the research centers around and has resulted in the “standard of care” which is 6 months of “pulse therapy” post-surgery and radiation.  Once you get there, it’s up to your Neuro-Oncologist to set you on the right course.  Stop chemo altogether, switch to something else such as Tarceva, keep going with Temodar or if you have growth take more aggressive action obviously including surgery – both traditional and stereo-tactic radiosurgery.  So, no one of course can predict. 

My conversations have gone sort of like this:  So if I were to continue therapy, what has your experience shown in terms of liklihood of tumor growth vs. management for a grade 3 mixed glioma?  Well, it depends.  Sometimes they grow, sometimes they don’t.  And if I don’t continue?  Same result.  And I continue to the year marker and stop?  It could grow after that or not.  There are patients that stop and it’s stable for years and then some patients have aggressive tumors that grow quite quickly.

The bottom line for me?  It is a) in God’s hands at the end of the day but b) I have to research this just as I did with my decision to have surgery to make sure that I am making the best decision for me and for my family.  I am going to UCSF and having the look at my film again.  I am also having their Department Head of Neuro-Oncology look at my case and provide a second opinion (the conservative recommendation I have is to continue).  I am also digging around at Harvard for another opinion.  In concert with all of this, I am performing my own independent research.  As I have always maintained, you must be your own advocate – no one will do it for you.  I can go to my doctor and sit in a room and just shake my head yes or I can go out there and get good, solid info from some of the most imminent sources in the field.  The latter is what I want.  This is my life on the line.

That’s it for now.  For now, though, I have been off for a week and as a special present I am taking a second week off of chemo – yeah!  This is not a big deal since I have been by the book for 6 months.  Back on it a week from Monday but this is a welcome break.

Thanks again for all of your thoughts and prayers regarding my MRI.  They are SO appreciated.  The comments and all the emails I received mean so much to me.  You have no idea.  Thank you.

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Stable MRI!

MRI 5 Comments »

My MRI came back as stable disease again!  Needless to say I am so happy.  My Neuro-Oncologist has indicated that to have stable MRIs like this is a great sign.   Considering I have been tracking this since 12/2006 and I intervened in 6/2007 by choice with surgery, IMRT radiation and now 6 months of chemo and a very deliberate, well thought out set of supplements, I feel very good about the plan and path I am on.  A grade 3 tumor is an aggressive tumor and that coupled with a 0% resection – well, I felt that my odds were stacked out of the gate but I didn’t hold on to thought for long.  I’m here and by the grace of God we’ll continue on one day at a time.  And I’ve said it before – the tasks ahead of me are never greater than the power behind me.

 It’s getter late for me given my fatigue lately (who would think that 8:30pm is late!) but I’ve been sleeping a lot for the last 3-4 days.  But thank you SO much for all of the emails and the several comments posted here – your thoughts and prayers mean everything and they absolutely make a difference.  Thank you Thank you!!!

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MRI Today – 6 Months of Chemo Completed

MRI 3 Comments »

As of last night, I took the last of my Temodar to reach the 6-month mark which is the official “standard of care” if you will.  I guess it’s a meaningful milestone in that most of the brain tumor centers including UCSF will recommend this regimen because patients have had the highest degree of success addressing their brain tumors by first having surgery if possible, then b) utilizing IMRT radiation or some other form as appropriate and then c) chemotherapy.  For me as you might have read in previous posts, I had surgery which resulted in only a biopsy due to the location of the tumor (straddling the primary motor strip) and then followed that up with 5 weeks of concurrent IMRT radiation and chemotherapy using Temodar.  I then took 4 weeks off and subsequently started pulse therapy using Temodar on an alternating weekly schedule (7-days on / 7-days off). 

I have another MRI today so could again use your prayers.  I have continued to be asymptomatic.  I had a strange episode about a week again with my vision – an object (my dress shirt hanging in the bathroom) seemed to suddenly “zoom in” although I was 5-6 feet away from it.  I had to grab on to the wall to maintain my balance.  It was a little bit strange but I’m not sure I can really attribute it to anything.  Taking the Temodar and also anti-convulants, etc. – it’s hard to say.  But this is why I have MRIs so close together.  We need to track everything.  It’s been stable all along so we’ll continue to look at it. 

I will likely continue on Temodar for another 6 months.  On one side of the coin, it seems difficult to take chemo for the same amount of time in front of me that I’ve already been taking it.  However, this is what is going to help me manage this for now so I look at it positively.  The only drawback is it does take its toll.  I believe there is a cumulative effect that builds up over time and you become increasingly more fatigued.  What can you do though!  You accept it, you keep going.  But, you have listen to your body.  I was very tired this weekend.  I needed some time to just rest.  I slept a lot at night – like a full 10-11 hours and sometimes that is just what you need.  I’m pretty tired today too.  I kind of go through phases like this.

We’ll see how everything goes later today – it’s in God’s hands – all of it has been and will be.  I have an appointment with my Neuro-Oncologist tomorrow and will review the MRI in detail but I typically get a prelim before that. 

More to follow!  I hope all of you had a great Easter.

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Brain Tumor Advocacy – NABTC

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The North American Brain Tumor Coalition (NABTC) is an advocacy group dedicated to educating policy makers and lobbying for increased research into brain tumor treatments. The overarching strategy of the coalition is to improve the quality of life and overall prognosis of brain tumor patients.

I mentioned in a recent post that there are various ways I have found to “give back” and get involved. I have found that by giving back and getting involved it not only helps other people who are heading down the same road I have been walking but helps me tremendously. Likewise, I have found people who are further down the road than I and they help me. This fellowship is important and it applies to caregivers as well.

The ways in which I get involved have different ways of impacting me which of course makes total sense. Some of the relationships I have formed have been life changing. I have email-only relationships with people that I pray for and keep in touch with that are special to me. I have other contact with people that may be brief but significant. Obviously one of the ways I have been involved and tried to give is with this blog. Blogging about my journey, based on emails I have received, has given some people hope and strength. It also helps me tremendously. My album River of Faith, although a piece of songwriting about the beginnings of my journey/trial as a brain tumor survivor, has touched other people which humbles me. Volunteering and connecting with brain tumor survivors seeking support through the National Brain Tumor Foundation is another way I am involving myself.

I know that for all us – I mean ALL of us – brain tumor survivors and everyone touched by the diagnosis of a brain tumor, this is frightening. It’s a dark world in the beginning but people shine light over it. You are not alone and I feel that God has been with me through this and He’s in the middle of this. For me, he has placed me in this place for a reason and perhaps my testimony is being used to help others. Whatever the case, I’m involved. I took care and continue to take care of my business. God is #1, my family is #2 and everything else falls someplace down below that. I am my own advocate and you have to be. I did my research and continue to do my research as necessary. Am I missing things.? No doubt about it. However, I feel I have done a thorough job. I have enough binders of material full of my independent research and have read enough books to feel very well versed on the subject of primary brain tumors. My point is that once I got past the learning curve (which I crammed by the way because I was so fearful regarding my cognitive abilities and mental acuity after the surgery) I moved on. I wanted to be involved – which takes me to the NABTC.

This coalition is the only of its kind so far as I can tell. There are a number of ways to be involved. You can become an advocate which really requires the most effort but it boils down to how much you want to put into it – an understanding of the issues, writing letters and getting involved with your Representative and Senator to help shape health care and advocate brain tumor research funding. Or, you can just be informed – just understand and help by spreading the word – attend webcasts, sign up for the newsletters from the NABTC, etc. Advocacy is important in the world. For us, it started when we were diagnosed with a brain tumor. We all immediately had to start being our own advocate – striving for the best care medical science has to offer. Once you know that you have that and if you are in a position to do so, helping further the cause is a great way to help us collectively as well as future generations, children and adults alike, ultimately overcome this disease.

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What a Brain Tumor Can’t Do…

Inspiration, My Story 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 4 Comments »

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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Learning to be a Survivor

My Story, Support No Comments »

Anyone who is brain tumor survivor has been on a winding, bumpy road – and this putting it mildly for many of us. I was reflecting on what I have learned so far after having a seizure followed by the discovery of an abnormality in my brain. This led to a diagnosis followed by my craniotomy, a grade 3 oligoastrocytoma, IMRT radiation and concurrent chemotherapy followed by monthly cycles of chemotherapy.

I have learned a number of very important lessons and principles:

  1. Purpose - There is a reason this is happening. It’s not about “why me”. It’s about “why not me” and that this is an opportunity for me to turn this into a positive. I look at life ever so slightly different today. This blog helps me give back to other survivors who are on this journey. My kids and my wife – I cherish the small things in life – the simple things. I ratcheted down my expectations and for me this was wonderful. My career and everything else that sometimes took center-stage is not center-stage. I am a lot more judicious in terms of how and where I spend my time.
  2. Paralysis of Analysis - I don’t over-analyize my condition. In the beginning, I did a ton of research and it was absolutely necessary. I encourage everyone – and I mean everyone to do research. There are several books that I read that changed me. One is by Dr. Peter Black at Harvard. I was fortunate enough to have him review my case – along with Dr. Mitchel Berger at UCSF who both agreed with surgery followed by Temodar. His book Living with a Brain Tumor is excellent. There are other books I think everyone should avail themselves to. There is a post on my blog that lists the books I read from cover to cover if you wish to look. My personal recommendation though, at least for me, was not to order so many books that I was innundated with material. I was already innundated with professional opinions. The natural tendency, particulary for those of us who are problem-solvers, is to dive in and learn as much as possible. I did. I think you need to know enough to be your own advocate and have intelligent discussions with all of the professionals and if put something on the table that is questionable – you can ask the questions.
  3. Get Organized – It was extremely important for me to get organized. I created a binder. The front of the binder has CD holders – the plastic pages that hold 6 CDs to a page (to hold MRI CDs), a few sheets of business card holders (and a page for family contacts in case health care professionals had the binder) and tabs for the following: surgical history, prescription history/information, pathology reports, MRI reports, dictations (ask your doctor for these – they are usually available 5-7 days after your visits!), seizure logs, chemo/radiation calendar & schedule, diet documentation and research docs. I ended up moving all the research docs to a separate binder (printouts from internet research) as it got to be a lot. The point here is you are organized and have everything in one place. I had to go to the ER once for a significant seizure. I had my wife bring the binder. Instead of her having to recall everything, she just handed them the binder. Nice! Same thing later – it’s all up date, all of MRI scans are in there, medication I’m taking, surgery reports – it’s all there. Get organized. This is more important than any college class, a thesis – anything that we’ve ever done in our lives so it obviously deserves the hours or days it takes to make spin like a top.
  4. Address the Feelings / Get Professional Help - For me, I went and saw someone (a PhD) to just talk about what I was/am going through. This was key. It’s not that anyone is going crazy here. This is a heap of trauma to be thrown on anyone’s lap. Do what you need to do to deal with it! I went through the emotions. It’s not easy but it’s necessary to deal with that component. I had hard days and hard nights in the beginning. Having all of this laid out for you is difficult and for me, if I just stuffed it down, played the tough guy – whatever you want to call it or whatever tactic you want to employ, it would just come back later. So, I dealt with it. Do I still have some difficult times – sure – but I am equipped to deal with them because I’ve addressed this and those times are fewer and further between and I still have this outlet.  I’m living life.
  5. Don’t Turn Down Help! I think all of us, at some level, don’t like to “burden” people. People offer help and many of us say we’re “ok” and “don’t worry about it.” I know my wife and I are like that. Well, when this was all going on and friends and family wanted to help out, we started taking them up on it! It’s important and it really really helped. We were actually in a position where we couldn’t say no. For those of you who have read the blog back in late June and July of 2007, my craniotomy was followed by Rachael’s emergency c-section delivery of Keegan 2 weeks later. Yes, we needed help!
  6. Stay in Today – I’ve posted about this and this is key for me. As a brain tumor survivor it’s so easy to become mired in tomorrow. This is dangerous ground for me because then I start clouding my head with the uncertainty of my condition, etc. The fact is, for every one of us in the world, we don’t know what tomorrow holds. I could pass away from something besides my brain tumor for all I know! So, it makes no sense to worry about tomorrow. Someone once told me that if I’m living in yesterday I’m regretful, if I’m living in tomorrow I’m anxious but if I’m living in today life must be ok and certainly I’m present to experience life in the moment. Sounds good to me!
  7. Statistics are Meaningless – Anyone who shoves stats in my face – well, I don’t pay attention to them. As I mentioned in a post or two, I looked at stats purely from the standpoint of doing some estate planning which is the responsible thing for any father of two / husband to do. Other than that – who cares. Living life today – that’s the name of the game.
  8. Get Involved! Build a blog and share your story (CarePages is a place you can do this and you don’t have to know anything about web design), get in touch with the National Brain Tumor Foundation – they have ways to get involved. There are a series of walks scheduled – one is in San Francisco. Volunteer. Giving back makes you feel good and takes the focus off of yourself.

There is a lot more that I have learned and I am sure you have learned a lot as well. I just thought I would throw some things up here that have really helped me since this all started for me back in December of 2006.

Best,

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NBTF Brain Tumor Community Survey

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The National Brain Tumor Foundation and the Brain Tumor Society are launching a survey into the needs of the brain tumor community. From what I have read it’s one of the largest surveys attempted. I’m obviously going to participate and I’m getting the word out. So, please visit the NBTF web site news area and follow the link(s). As of the date of this post there is a link to a form to be “notified” when the survey is available (early March) – so that is any day now. If you are reading this later it may very well already be out there.

This type of information/data gathering is invaluable and will help serve not only our needs as brain tumor survivors but also those that will walk in our shoes in the future. Participate!

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The Little Things In Life

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I receive a lot of emails every day from people – a lot of brain tumor survivors, family members, friends of survivors and of course from fellow musicians. Every once in awhile an email comes through that really grabs my attention. Today was one of those days. Several days ago I received an email from a woman who explained that her father has colon cancer and that he was going to be leaving on a trip to receive some specialized treatment. She said that she really liked my song River of Faith which is the title track of my CD and that she had searched the internet high and low for the lyrics. She continued by saying that her family was getting together to see him off that she wanted to make a family circle at this get together, play my song and give everyone there a copy of the lyrics to take with them – as a reminder to hold on to strength and hope. I sent her the lyrics and told her that my thoughts and prayers were firmly with her father and her family.

Today she sent me an email just to thank me and said that listening to the song really touched her and her family’s emotions. What an amazing compliment and how humbling indeed. As a songwriter, certainly this is what we strive – to connect with people through our music.  For me, this song was really something that came in the middle of my trial and was my way of keeping the faith – not swimming against it but letting it flow.  What I was happy to hear is that someone else was able to garner the same strength, hope and faith from the song as I did. Of all of the songs on my CD, this song has also enjoyed some radio success. For me, this song along with The Messenger and Angels of the Night are closest to me for my own reasons.

Many times in life it’s the little things that make life worth living.

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The Complex World of Brain Tumor Treatment

Brain Tumor Treatment, My Story 2 Comments »

One of the most difficult aspects I have faced as a brain tumor survivor is making decisions around how to treat my tumor. In the beginning, there are a million different alternatives thrown in your face. I empathize with people starting this journey because it’s difficult. What do you believe? Who do you believe? Everyone has an opinion and most all of them come from extremely intelligent, highly educated professionals. Do you opt for a clinical trial right off the bat? You could, and it could be the one that makes the difference. It could also be a trial that fails. Or, do you opt for a treatment that has proven success – even if that success doesn’t sound appealing?

With any brain tumor you want to CURE this thing right off the bat. You want to knock it out. You want to employ a treatment modality that has the highest likelihood of doing the job. At the same time, you don’t want to kill yourself in the process! Tough situation. For me, it came down to a simple decision. There is a ton of research taking place – new discoveries are happening each year. I decided this was about utilizing a modality that would extend my life out as long as possible so trials that are now in Phase I or even Phase II could be proven out. If my tumor shows ANY growth, I will avail myself to these treatments but for now, I am adhering to the tried and true treatment that UCSF, Harvard, Duke, MD Anderson and many other experts have recommended in my case – and that was IMRT radiation for 5 weeks with concurrent Temodar and then 6 months of Temodar on an alternating weekly schedule. I am finishing my 6th cycle now. I will continue until 1 year and then stop, unless there is shrinkage in which case I will continue. If there is growth, then it’s time to look at trials and other “cocktails” and go off the beaten path. There is a Neurosurgeon at MD Anderson in Houston, Texas that found himself with a grade 4 GBM – he was faced with all of this. Guess what he chose to do? Radiation and Temodar. He has a wife, children and everything to live for just like anyone else.

We can all over-analyze this. I did. But in the end, for me, it was about going with tried and true methods that had the best percentages of extending my life out, increasing my survival rate and attempting to ensure that I’m here when even better treatments are available. The problem with clinical trials is that many of them require that you’ve had no prior treatment – if you’ve already been on Temodar, for example, you aren’t eligible for the trial. However, if you have recurrent growth, then you can jump back on. That’s my own personal strategy. But initially, I’m driving the car that has been manufactured for 40 years and has an engine that I know won’t die for awhile.  Of course this is a terrible analogy with regard to Temodar, because it, too, was a clinical trial just a few years ago and was found to be extremely effective fighting grade 4 astrocytomas (aka GBMs).  Researchers subsequently determined that this chemotherapy was effective fighting grade 3 astrocytomas and oligoastrocytomas.  This is just one man’s opinion, of course!

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