Blogging in B Minor

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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Tags:  blood brain barrier , Brain Tumor , Faith , MRI , MRI enhancement , My Story , oligoastrocytoma , primary motor cortex , seizure

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.

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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Tags:  Brain Tumor , brain tumor survivor , Faith , fMRI , MRI , MRI enhancement , oligoastrocytoma , Oncologist , seizure

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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Tags:  blood brain barrier , Brain Tumor , chemotherapy , glioma , God , MRI , MRI enhancement , oligoastrocytoma , radiation oncologist , Radiation Therapy , survivor , Temodar

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:

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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Tags:  Brain Tumor , Brain Tumor Research , Faith , gadolinium , MRI , MRI enhancement , PET Scan , prayer , Resources (Brain Tumor) , supplements

Stable disease! I feel so blessed to have had multiple imaging studies now showing a stable tumor. Needless to say we are very happy. I don’t know why but I was a bit more anxious about this one. I prayed about it and turned it over but I must have held on to it more than I typically do. So, all is well and I have entered cycle #5 of 6 as of last night. The first few days make me tired and the first several days afterward are the same - in between is alright. As I have mentioned, the end of cycle 6 (the six month mark) is key and I will have some big decisions to make.

If you have ever wondered what an MRI report looks like, I have posted it below - just click on the “See photo in full size” and it will pull the report up in a new window. I have cut out all of the personal info for obvious reasons but for those of you who are starting on the journey, it will give you an idea of what to expect. All of the reports provide a history, the type of examination conducted, what the current study is compared to (if you have had previous studies - this is to gauge any growth or change), the techniques used as part of the study, the findings and the final impression (basically a summary). The technique used and the findings are highly technical. The technique really refers to the types of scans used (e.g. sagittal (also known as median) plane is an X-Z plane, perpendicular to the ground, which separates left from right) and if a contrast agent is used such as Gadolinum (Gadolinium-enhanced tissues and fluids appear extremely bright on what are called “T1-weighted images”). This provides high sensitivity for detection of vascular tissues in tumors and permits assessment of brain perfusion. Finally, the impression is really the most important part of the report. In my case with this report - “stable right posterior frontal abnormality consistent with cerebral tumor.” Stable. After reading reports like this for over a year I know how to read them!

So, my next MRI will be at the beginning of April and this will be the same time I will finish the 6-month regimen of Temodar - “the standard of care”. Decision time. That’s all for now. Thanks to all for your prayers, well wishes and good thoughts - we know they all help so much!

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Tags:  astrocytoma , Brain Tumor , brain tumor survivor , chemotherapy , Faith , gadolinium , GBM , glioma , MRI , MRI enhancement , My Story , oligoastrocytoma , Oncologist , prayer , radiation oncologist , radiologist , Temodar

It’s been a bit more difficult to get to the blog with so much going on. Work has been really busy for me which is a good thing! I’ve been really busy - in fact, this is busier than things have been for quite a long while. I’m just about finished with a song. I know I have said this for awhile now! I have a few that are in the bag musically but I just didn’t feel it. I think I’ve talked about my digital graveyard before? It’s a place where songs go that just don’t seem to go anywhere. Sometimes they are just chord progressions and other times, as in two cases here, they were fully produced pieces with drums, bass, strings, guitars, grand piano, etc. etc. and I just didn’t feel like they were going anywhere for me. Perhaps it was going through treatment? It doesn’t exactly put you in a hugely creative mood, however, songwriting isn’t something you can force - either a song comes or it doesn’t.

Well, I do really like the sound and feel of the one I’m chipping away at now. The music is nearly finished so the grinding part will start with lyrics and vocals. For many songwriters and me included, it’s the hardest part. A songwriter once said “my favorite part of writing a song is the beginning and the end” and it’s so true! You are inspired in the beginning and once you are done it’s a great feeling to sit back and listen to a finished piece (providing you didn’t cut corners and slam it out), but the grind can be tough. Anyway, when it’s done I will post it here.

So I’m still dragging with fatigue. Seems that each week I come off chemo it takes 3-4 days to feel sort of normal again. It’s just the cumulative effect I think. Not much that can be done that I already am not doing with regard to diet, supplements and the like. I finished cycle 4 as of the end of this week (I’m off chemo this week which is the last week in this cycle) so I’ll begin cycle 5/6 on Monday. Once I get done with 6 I’ll have decisions to make. It will be a difficult proposition for sure. Many of the other drugs are as or even more harsh than Temodar - and discussion centers around adding one in addition to Temodar possibly. Of course one option going off of chemo completely and seeing where we go. Lots of options and we will deal with that when the day comes.

My next MRI is this coming Monday so I could use your prayers. So far, all of them have come back stable - praying for the same or better results here as well. I am tracking this serially every 60 days and my last MRI was at the beginning of December.

Our small group is going through a GREAT study right now on living the life you always dreamed of living. The book that we are reading is amazing. I was reading it last night and the author was telling a story about giving his kids a bath and how his daugther is just filled with joy for no reason at all - she’s a little kid and every moment of the day, for the most part, is joyous. He said that when she is filled with so much joy that words cannot express how much joy she feels, she just dances around in circles. They call it the dee dah day dance because she is so filled with joy that she has had a dee dah day. He goes on to say that one night he gave her a bath and when she got out of the bath she was doing this dance and he’s asking her to come over to dry her off and she’s laughing, dancing and he’s saying come over here - hurry, I need to get you dry - and he starts getting frustrated because she’s twirling, running away and doing this dance and finally with a more stern voice he says “please come over here, we need to hurry and I need to dry you off”. Then he said that she asked the most profound question: “Why?” The point he made and what struck me is that our lives are lived by timetables, when is the next meeting, where do we have to be, what is next, what happened last, etc. and as a result, we miss out on the joy of now. He said that after she asked that question, he got up and did the dee dah day dance with her and they just took their time. What a concept huh? For me, I have done this exact thing with my son in the bath - we need to hurry, it’s time for bed, gotta get out, blah blah blah.

Anyway, this is a great study for us. Again, I could use your prayers for Monday and by all means please continue to email any requests you have.

Best,

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Tags:  astrocytoma , Brain Tumor , brain tumor survivor , chemotherapy , Christian , Church , gadolinium , glioma , MRI , MRI enhancement , Music , My Music , My Story , oligoastrocytoma , Recording Studio , Resources (Christian) , songs , songwriting , Temodar , tumor