Blogging in B Minor

I should hear back from my Neurosurgeon and Neuro-Oncologist today.  I left a message with both.  I thought more about the seizures and I think that because I’m becoming more symptomatic pretty quickly (3 focal seizures in a week), waiting until the end of May for an MRI is a little too long for my comfort level and perhaps we should do one now.  This is obviously an aggressive tumor and in spite of the fact we folded in gamma knife in March and may assume this took care of growth at that time, the fact is we don’t know whether the seizures are being brought on by growth, brain swelling, damage to the motor strip from the gamma knife process (not surprising if so), etc.  I think we need to do it though.  With the recurrence that happened 4 months after my resection in October and “most” recurrences after the first becoming sooner and sooner in elapsed time, I want to stay totally on top of this.   

I’ve been thinking over the last few days about how the so-called “economic down-turn” (which is government speak for recession) has brought some families closer together and taken us back to some core values.  I know for us, it’s built on what naturally happens when fighting a brain tumor and what existed before. 

Most families come together after the diagnosis and are more judicious about how, where and with whom they spend their time.  I think coupling that with the economy is creating more closeness – or it creates the opportunity.  More people are spending time at home – not eating out as much or shopping.  I don’t think there is anyone I know who hasn’t made some type of change to their financial matters.  We refinanced our home.  We found a better deal on cable TV.  But this tightening of the belt as it were is something that can be a positive.  It’s the media that creates so much fear and hysteria about things.  Yes, everyone has to be careful right now and some are in very hard times – and I pray daily about the problem but God will prevail.  In the media, however, the world is going end, right?  The same message was sent a few weeks ago with the swine flu – pandemic!  Remember SARs?  Who can forget the bird flu – the list goes on.   I’m not suggesting at all that these didn’t  effect anyone – they did and it was awful – just like brain tumors and other diseases they are of earthly creation.  The point is the media drives fear and panic.

I find that us the most difficult issue is when I’m not feeling great – it puts a lot of pressure on Rachael and she feels the burden of the evening or weekend day upon her.  Lately I’ve felt pretty good with the exception of the seizures which can put me out of condition for awhile.  I think it’s hard to support each other sometimes when two people are in survival mode at certain times.  We honestly struggle with this.  But, on the other side of the coin (the shiny side!), I’ve been outside with my kids in our backyard playing catch with my older son.  I’ve been able to play with our youngest and I’ve been spending a lot of time with Aidan at night reading books and just talking.

On a funny note, the other night Aidan needed to get out of the bath.  He had his hair and shoulders so lathered up it looked like shaving cream!  But nowhere else – just on his head and shoulders.  Rach asked, “Aidan, why do you have so much so soap in your hair and on your shoulders?”.  Aidan said “Well, the bottle over there says Head AND Shoulders so I want to make sure I do it right.”  Kids can make you laugh – you just can’t do it in front of them sometimes.

Random post.  Don’t forget Mother’s Day on Sunday!!

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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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Ok, it’s been a year now. 1 year since brain tumor surgery. It was 1 year ago this morning I was packing into the car after getting virtually zero sleep and heading down to the hospital with my wife to undergo my craniotomy in an attempt to resect what we now know to be a grade 3 mixed glioma. Wow – 1 year! Since then, I’ve undergone 6 weeks of radiation, 8 rounds of chemotherapy using Temodar, 2 PET scans, and countless MRIs. After all of this – I have stability. I still may have 100% of the tumor in my brain but I have no growth and have have achieved stability through radiation and chemo. For that I am grateful to God.

What I am also grateful for is that we had the ability and foresight to jump on this. If you go all the way back in my blog (if you haven’t been a reader), I was on a “watch and wait” recommended strategy and the short of it is I probably would have been watching and waiting, perhaps all the way up until now had it not been for the opinions of two other outstanding neurosurgeons who indicated this was a far more serious situation in their view.  Therefore, it could have been a scenario in which I had a grade 3 malignant glioma that would have been percolating in my brain as I stood by on this “watch and wait” strategy, assuming I remained asymptomatic and MRI scans were stable.  However, 2nd and 3rd opinions avoided that.  And, there were no wrongs done here. My medical care is the best I can get. My neurosurgeon, Dr. Edie Zusman is amazing.   This was a neuro-radiologist call and they simply felt it was a low-grade tumor.  It wasn’t.   Bouncing my case off of others like Dr. Mitchel Berger at UCSF and Dr. Peter Black at Mass General has been a Godsend and was a key tenet of my strategy.

I am just grateful to everyone in my life that has been there for me and for my family over the past year. This has been the most difficult year of my entire life, hands down. And, for everyone that has supported me, my family in any way at all – thank you.

As you know I’m off chemo for now – we’ll find out what’s next up this week. Again, thank you so much for all of your support.

Ok, in closing, turn up your speakers a touch and check this guy out! Hey, I’m a year out from this so I had to include some comedy in this post. For those of you who are not familiar with the band U2 and Bono, you won’t get it but most of you are. Hilarious.

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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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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.

 http://video.google.com/videoplay?docid=3738959408302608292

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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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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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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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