Blogging in B Minor

A very quick post and some pics regarding today’s Gamma Knife surgery.  First, everthing went perfectly and it was successfully completed today.  A long day it was.  We were there at 7:30am and left at 2:00pm. I will get into more details later about the process (this is #2 for me) I thought it would be helpful for some to see pictures of the actual prep involved in Gamma Knife - the prep consumes most of time. 

Warning for the squeamish – some of these pics may not be for you.  After all, they are screwing a device to my head to render it immobile while receiving high dose precision radiation from the machine:

More to come later but wanted to quickly thank everyone for all the prayers.

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Just a quick update.  I am continuing with my bi-weekly avastin infusions and they are going fine.  I will have an MRI coming up in the middle of October – yet to be scheduled.  Walking into the infusion center every two weeks is always a bit sad on several fronts.  I typically pray for many people in there.  I’m blessed to be in the position that I am with a GBM.  So many people in there are just at the end of the road.  It’s their time but I take comfort in knowing that this is God’s plan for them.  Many of them smile and have joy in their eyes, still.  Others are just very tired.  I pray for all of them though.  The team there is very good – they really know how to take care of their patients.

I am noticing over the past month or so that my memory is slipping a bit.  It’s all short-term memory.  I use my iPhone constantly.  Examples – I’ll set a meeting for a Thursday and someone will tell me they can make it on Thursday (this will be on a Wednesday for sake of discussion).  I’ll reply “oh, the meeting I set up is on Friday, not tomorrow?”.  With confusion showing on their face, they’ll say no, it was Thursday.  I’ll say ok, you’re probably right and I’ll double check my calendar.  Or, I’ll ask someone on Tuesday who’s playing on Monday Night Football and of course if was “last night” because I’m asking on Tuesday!  Dumb stuff!  People say that they themselves do that all the time but I know radiation is catching up to me.  My neuro-oncologist has noticed – and I’ve missed some appointments with a therapist I use for support as a result.

The positive?  This doesn’t affect my professional life.  I am laser-focused at work.  I may let a few meeting times slip, but I have audible alarms and other means to stay on top of everything.  I’ve also found some great brain teaser type of game for the eye phone that build up cognitive endurance.  Between that and my professional life, I’m getting along just fine.  It’s something that is evident to me now is all.  It is what it is and I am taking steps to work on it.  Just like physical therapy that I have every week, I have to work on this, too.  Sometimes it feels a bit overwhelming – so much to do!  However, this thinking goes back to living in today and, sometimes, just in the moment.  I can choose not to fill myself with everything at once.  Right now, I’m just posting this to my blog, period.  That’s it.  And I’m enjoying it!

Next week is an off week for treatment.  I’m still having seizures – had one over the weekend last weekend but they are very minor.  I’ve had so many minor seizures that I can walk through those just fine.  I will say that the first few seizures after the large seizure back 4-6 weeks ago concerned me in the beginning.  I wasn’t sure if they would evolve into something more significant but they haven’t.

Kids are great and Rachael is doing well.

I had to put this pic in here.  Rachael took this of Keegan at a park and he looked so happy!  She told me that 5 seconds before this a little girl was looking through the same window and he bonked her on the head so he could get in there.  Bully.  He apologized after the picture.

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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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I think the effects of the Gamma Knife surgery are really beginning to come to the surface now.  You might recall from the past (review for regular readers) that my brain tumor is right on the motor strip in the right frontal lobe.  Therefore, the targeted area involved the motor strip and seizures was one of the likely effects of this type of procedure.  My surgeon told me that they would likely become more frequent and increase in frequency.  When you think about it, I received 60Gy (Gy is pronounced “grey” which is the unit of measurement for radiation) of IMRT radiation over 5 weeks.  Gamma knife was about 24Gy in one shot.  It’s not difficult to understand how this might create some trauma.

I’ve had focal seizures (seizures confined to the left side of my body – typically in my left shoulder and arm) here and there but there seems to be some regularity developing in spite of increasing meds and folding in a new drug.  I’ve only been on the new drug for a little while so I need to give that time but the only way to describe the feeling in my left arm is it feels like there is a seizure right under the surface that could break through at any time.

I’ve had seizures on 4/28, 5/1 and 5/4.  Yesterday was laughable!  We are refinancing our 1st mortgage – hey if you haven’t do it.  It’s a good time!  Anyway, we were getting some final paperwork notarized and sent out in a fedex store and just as everything was laid out, I felt it coming on.  Perfect timing!  We needed to get this stuff out but what am I supposed to do?  I told Rach that I need to take a quick walk.  So I walked down the strip mall where it looked nice and quiet so I could go finish my seizure and return to sign the paperwork!  How lame is that?!  Luckily it was a normal 5 minute deal and Rach had all the signature lines all organized for me.  I was also glad that my oldest son didn’t follow out – he hasn’t seen that side of this and I’d still like to keep it that way.

I need to find out another answer here.  I’ll keep tracking it with log.  I haven’t had to log these since my 1st surgery really but this is when logging is important.  You simply can’t remember details like when it occured, the duration, if you took medication to stop it and any other info you need to document that may be important.

Other than this issue, I’m still feeling good – plenty of energy.  Something is working but I’m concerned mostly about brain swelling and want to avoid steroids which is where they would go if we can’t control it with standard anti-convulsants.  I’ll get it figured out though.

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Quick Post:  This is very preliminary but the Tumor Board met and approved me as a candidate for Gamma Knife surgery.  This is pretty cutting edge technology.  There are a lot of risks associated with this given the location of my tumor/recurrence including motor deficits and other deficits but there are also pros, the primary being in simple terms sterilizing the cancer tissue so it hopefully doesn’t grow so we can use other treatment modalities.  I’ll have this done at Sutter as I have all of my treatment.  The Sutter Neuroscience Institute is a top notch brain tumor center and I would recommend it to anyone seeking treatment for a primary brain tumor.

It looks like something out of science fiction but here is a great photo showing the convergence of 201 beams of computer-guided radiation on a tumor through a specialized “helmet” that keeps the patients head stationary.  Here are a few photos:

And here is a cross-section diagram that depicts the process graphically:

We’ll learn a lot more in the coming days.  I’m a bit tired of discussing the vaccine.  It’s there – the goal would be to use Gamma Knife then perhaps the vaccine but most likely we’d start with Avastin after Gamma Knife after some time passes to assess the surgery.  What’s great about the Gamma Knife process is it’s nearly an out-patient endeavor.

More to come.  Lots to discuss, absorb and decisions to make.

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

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

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

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