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

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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Tags:  Brain Tumor , brain tumor survivor , glioma , inspiration , My Story , oligoastrocytoma , survivor

I think I typically keep things pretty well in perspective considering what I have happening in my life. I’m speaking of just my health, prognosis and these aspects of my life. I had some pretty dark days and nights in the beginning but I came to accept my circumstances and I really try to use this trial in my life in positive ways - as a testimony to others that we can get through anything, even if we are facing a prognosis as what most view as bleak as a malignant brain tumor. I volunteer through the NBTF, am active with the NABTC and of course field a significant amount of email through my site here. I think it’s important to channel all of this into positive energy - there is a plan behind all of this. However, it’s easy to get caught up in flawed thinking.

I found myself doing exactly that over the past few days - dwelling on yesterday and worrying about tomorrow. Anytime I’m not in today, I know I’m on a slippery slope. I have posts on this blog about how I cope, about how I avoid this! But how did I learn how not to do this? By finding myself in this rut and getting myself out of it, over and over - mostly at the onset of this journey. I think what triggered a lot of this over the past days certainly was Senator Kennedy’s diagnosis. I know better. The press just lays everything out in the bleakest of terms and they are so uneducated (to no fault of their own) regarding brain tumors and other subjects that are suddenly thrust into the spotlight. The story comes out of nowhere and they start boning up on the subject, contacting experts, interviewing everyone. Immediately, he’s facing a death sentence and gliomas are all grade 4 tumors! In all fairness, it wasn’t quite this bad but it pretty much was the press painting a picture of “you have malignant brain tumor, you will die in a few years tops”. I will say that with Senator Kennedy, I could pretty much ascertain that he was facing a GBM (glioblastoma multiforme or grade 4 glioma) when I heard certain statements such as “extremely aggressive” and other give aways. A grade 4 is much different than what I have, a grade 3 although some will certainly argue that all grade 3 tumors will eventually evolve into a grade 4. Who really knows! However, all of this stirred the pot for me and I started throwing all of the thoughts I have had, factual but water under the bridge, about my case back on to my shoulders all over again.

I have a grade 3 - a craniotomy was performed and 0% was resected because of location. I have not had any shrinkage - stable is good but no shrinkage. 3-5 years median survival rate. What about my wife, my kids. Are the assets I have built over time enough - life insurance, pension plans I have, equity in our property and other assets - what if I have to stop working? Disability? My health insurance - conversion to COBRA - then what? And the list goes on. I hammered myself again! I have been through this. And then, I came back down to earth and said, “Mark, you have been through this and not only that, you have a binder in your firesafe that goes through all of this - it covers every scenario from active treatment to advanced illness, walking away from work to my death and what my family would do - it lays out steps - it has a “document locator” that spells out where where everything is”. I reminded myself that my financial advisor has a copy of all of this in his possession. I have a will. I have an advance health care directive.  I also have the entire world of statistics in perspective, thus my post some time ago about the amazing piece called The Median Isn’t The Message.  I have all of the other legal snafus tied up. And most of all, I have God. I have my maker who is in FULL control of what happens to me. This is not my fight, this is his but I need to stand and deliver.

So here I am, back down to earth and back to where I typically am - living in today, not yesterday or tomorrow and enjoying my family and my life. You see, as I have posted before, if I am not here today and I am mired in the mess above, I am missing out on everything - and I am missing out on what I believe God wants me to enjoy while I am here! Will I do this again - find myself wandering? I am sure I will! However, I have learned how unproductive this is. I also know we are all human - and I know that anyone facing a terminal illness - who has had a “number” waved in front of their face (which I have chosen to ignore!) will have times of dispair. It’s up to us to fight back, to realize that all any of have is today, right now, this moment. My brain tumor may not even be the cause of my demise. Any of us could walk out the front door today and have any number of circumstances alter our lives forever. That is why it’s important to live every moment to the fullest.

Yesterday? It’s gone. Tomorrow - it’ll come but today is what we have. I will enjoy it and if I fall into this thinking, I know what I need to do - and each time it does happen, I learn a little bit more about myself and I get a little bit better at avoiding it.

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Tags:  Brain Tumor , GBM , God , My Story , oligoastrocytoma

I’ve talked quite a bit about supplements in the past so I thought I would post a nice picture of the supplements I take on a daily basis. These have changed since I have completed radiation of course but the documentation in the resource library will give you a run-down of everything I have done. The previous links will show you the pics. Here is a quick list - obviously these are on top of lamitil, topomax, pepcid and a few other prescriptions that I take. Suffice it to say that my daily intake of pills is ridiculous!

Starting from left to right in the picture:

1. Peppermint Complex (digestive)
2. Boswellia (frankencense - anti-inflammatory)
3. Super Antioxidants - click the link for the supplement facts on the type of Antioxindant that I take. The essentials here, among others, are selenium, zinc, N-Acetyl Cysteine, CoQ10, Grape Seed Extract.
4. One-a-Day Multi-Vitamin
5. Aloe Vera Gel - Digestive Tract
6. Temodar 140mg - Chemotherapy. For my dosing it’s 280mg a night - I’m doing 1 week on / 1 week off. I’ll continue through 12 cycles.
7. Probiotics - Acidopholis
8. Fish Oil - 1000mg - Omegas - Important for brain tumor treatment, breaking down blood brain barrier.
9. CoQ10 - additional dosing

For me and based on my research, this is what I’m doing. I’m not a doctor nor a nutritionist so I don’t advocate “copying” what I do. This is what I have been doing since I’ve gone straight on to just chemo. I have had stable scans. Can I attribut them to this regimen and the chemo? I have no idea. For all I know I could be doing none of this, including chemo and still have stable scans. However, I’m going to do eveything I can, based on my research, to make things right and fight the fight!

As an addendum, here is video called Nutritional and Herbal Strategies to Complement Conventional Brain Tumor Treatments by Jeanne Wallace, PhD, CNC. It’s about 40 minutes long and focused on diet and supplements

That’s my supplement post - been meaning to do it.

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Tags:  blood brain barrier , Brain Tumor , chemotherapy , My Story , nutrition , oligoastrocytoma , supplements

I had two appointments this week - one on Tuesday which was a final follow up with my neuro-radiologist and another yesterday with my neuro-oncologist.  On Tuesday, we covered any issues I may be having related to the partial brain radiation that I underwent after surgery.  I haven’t had any issues of course as reported in my blog.  The interesting observation he had based on the string of MRIs that have indicated stablility and no growth is that he has fairly strong level of comfort at this point that there are no grade 4 cells that are part of this tumor.  He also indicated that it is entirely possible that the tumor could be made up of both grade 2 and grade 3 cells but that is purely speculation on his part - only a more invasive biopsy or resection followed by pathology would reveal such a finding.  Typically, grade 3 tumors, or anaplasic gliomas don’t recur or progressive until around year 2 so we’ll just continue the plan.  And again, this is only based on statistics and anyone who has read my blog for any length of time knows exactly where I stand with regard to statistics!  They mean nothing.  I view all of this discussion as extremely positive though.

As far as my appointment with my neuro-oncologist, we mostly talked about a recent issue I have been having with bleeding in my mouth and nose bleeds.  This would all point to a low platelet count, however, my blood work has always been right on target with all levels.  We are doing more blood work early next week that will include additional tests on platelets.  Other than that, I”m doing fine with cycle #7 coming to an end.  5 cycles to go - seems like a long time but when you take in a day at a time it’s really not
bad at all. 

As far as fatigue, I’m feeling that still but not as much.  I’m putting in a bit more time at the office and find that my energy overall is increasing over time. I started a soccer clinic with Aidan on Tuesday nights which is great!  We get out there and practice together and it’s teaching him the fundamentals.  He already had much of this down so far (I used to play competitively) but this is a good primer for the fall when he will start playing in his first organized soccer league.  Keegan is doing great.  He’s 9 months now and growing.  Not quite crawling but he’s flipping open and very vocal.  A fun age for sure. 

Next MRI scheduled for the last week in May and will include a metabolic-type of study.  This will provide some more data than a standard MRI.  If need be, we’ll follow that with a PET scan which I had in March of 2007 that is a very detailed metabolic study of the brain/tumor.

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Tags:  Brain Tumor , Brain Tumor Research , brain tumor survivor , fatigue , My Story , neuro oncologist; neuro radiologist , oligoastrocytoma , Oncologist

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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Tags:  Brain Tumor , brain tumor survivor , chemotherapy , fatigue , God , IMRT , MRI , oligoastrocytoma , prayer , Radiation Therapy , Temodar

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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Tags:  astrocytoma , Brain Tumor , Brain Tumor Research , Brain Tumor Resources , brain tumor survivor , GBM , glioma , oligoastrocytoma

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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Tags:  astrocytoma , Brain Tumor , Brain Tumor Research , brain tumor survivor , cancer , chemotherapy , GBM , glioma , IMRT , My Story , oligoastrocytoma , radiation , Temodar