Blogging in B Minor

Update

I continue to become more symptomatic which is actually good believe it or not! I had a focal seizure yesterday afternoon and although not as long as the seizure on Thursday, it was fairly intense.  I was able to work myself out of this in 5 mins and used an Ativan to bring it down.  The reason, however, it’s helpful is it’s confirming the brain mapping we have performed.  The seizures have been confined to my left leg and have not extended up into my upper body.  The tumor growth and area that has been mapped via fMRI and brain lab imaging indicates that it’s right on top of the area of the motor cortex that controls that very function - left leg.  So, it’s actually easier for the neurosurgical team and as a patient to know that we are going into a surgery a) solving a problem that has started and isn’t going away and b) having solid, symptomatic confirmation of the mapping. 

On to other news….I was up early today - no particular reason, I haven’t been worried about anything.  I think the Ativan just made me sleep a lot yesterday so I’ve had enough.

Tumor Vaccines

As for the DCVax vaccine, my team is working so hard on this.  We have some costs on some of this.  Some trials are not exactly “free”.  So far we understand some of the costs but not all.  We also need to understand a little bit more about the research protocol but my neurosurgeon, Dr. Edie
Zusman
at the
Sutter Neuroscience Institute has
been amazing in
doing everything in
her power to maximize
my length of life.Dr. Edie Zusman at the Sutter Neuroscience Institute has been amazing in doing everything in her power to maximize my length of life. If you are ever faced with a primary brain tumor, she is who you want in your corner.  She has the fight and tenacity that I need in my situation and her entire team has an arsenal that they are bringing to bear.  She has spent hours of her time so far on this vaccine issue and will be spending a lot time this weekend dealing with it.  Monday will be critical as we will be getting final details.  I can’t say enough about the Neurosurgical team at Sutter though.  They are a brain tumor center and a vast majority have been trained at UCSF, Stanford and other elite institutions.  They have gamma knife, fMRI capabilities and so much that you find at any other top shelf brain tumor center ala Duke, MD Anderson, UCSF, etc.    

That’s it for now.  Today is a nice family day.  Rachael, Aidan, Keegan and I are going out at some point for just a family picnic.  I wanted to play some soccer with Aidan - we’ll see how that goes.  May just push it a bit - who cares.  :-)  Bring a kite.  Note sure.  My parents got in last night so we’ll see them today as well.  Tomorrow church and I don’t know after that.  Just going to focus on today…

God bless, 

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Tags:  Brain Tumor , Brain Tumor Research , brain tumor survivor , brain tumor vaccine , clinical trial , fMRI , My Story , Neurosurgery , sutter neuroscience

Yesterday I went in again for another series of MRI studies.  These scans are designed to accomplish a number of objectives:

1. MRI w/o Contrast - this type of MRI is a simple MRI without the contrast agent.  They wanted another series because the first series didn’t include a set without contrast, only with.
2. MRI Spect - this is what is called a perfusion test.  It is the best way to try and determine the grade of the tumor via imaging.  If we can determine, based on this study, that we believe with some certainty this tumor has gone through malignant transformation then we’ll come up with a strategy right off the bat (and we’ll be armed with the info today for consideration) as to how aggressive we want to be in terms of resection of the tumor.  My guess is this has moved toward or is now a grade 4 tumor.  Therefore, we will be more inclined to sacrafice neurological function on my left side than the last surgery (when it was stable, not growing and a grade 3), in spite of the fact I am neurologically in tact for the most part.  Up-front info however is that I will experience weakness on the left with a pretty good resection.  Some rehab will make me stronger so this is great news.  I will know more this afternoon after my 2:30 with my Neurosurgeon - a big meeting indeed.
3. Brainlab - this is a mapping scan that will be loaded into the neuronavigation system and will the surgery to operate with extreme precision.  Since we now have the functional MRI capability available (explained below and I didn’t know this at the time I wrote the other post), they will fuse the brainlab data with the fMRI scans to create a complete map of the motor strip, tumor location and the relationship with motor function on my left side.  Amazing.  So, we have the best technology on our side.

Finally, here are scans.  I realized coincidentally that I had a scan exactly one year ago on October 2nd, 2007.  So here are two one year apart - the first scan is from yesterday and the second is from October 2007 as a comparison:

The primary differences here are the tumor is a) larger although it’s difficult to really tell and b) you can really see that the wall of the tumor is more defined.  The report puts all of this in more perspective and I really don’t have time to get into the details - too much going on.

 Finally, the sagital (profile) view is also interesting in that the tumor never has appeared in these slices of the scans and now it is, another indication that it has grown in size.  Here is the sagital view:

 That’s all.  We’re doing ok.  As I said - only human, ups and downs but for the most part working the problem - that is the focus.  I’m not sure that I’ll post again before the surgery but as I said, my good friend Glen will post an update out here.

Marching on….

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Tags:  Anaplastic , Brain Surgery , Brain Tumor , brain tumor survivor , GBM , grade 4 , Hemiplegia , Neurosurgery , resection

Well, here we go.  Surgery number two.  When I looked at that MRI yesterday, I have researched this long enough and looked at enough scans to know one from another in terms of grade.  I knew this tumor was going through malignant transformation.  It just didn’t look good period.  I had a long discussion at home last night with my Neuro-oncologist who had spoken to both of my Neurosurgeons (who had both looked at the film and report).  Both said surgery.  One said surgery and that he felt we could get a really good resection that would likely not result in paralysis on the left side.   His partner, who is my neurosurgeon and lead said that this changes the ballgame completely and asked the coordinator to book an OR at the surgery suite over at Sutter Memorial.   

A tumor that doubles in 60 days doesn’t give you the luxury of time.  12.5% a week - you can’t wait.  Of course you are assuming it continues at that growth rate but what else can you assume?  The worst case scenario.  Rachael and I thought about it last night - not for long though - and we will go forward and have surgery next Wednesday October 8th.  I will have to be more aggressive this time.  They believe they can be successful without paralysis, just weakness - to what degree is unknown.  May need some rehab to build strength back.  I know it’s so cliche’ but it is what it is.  I can’t change this.  We are praying of course.  We are praying for healing, for strength, for hope and a clean surgery.  But this is one of those circumstances in life that cannot be chanced - you have no control and it’s frustrating.

Don’t get me wrong - this SUCKS!.  I’m angry.  I’m pissed off.  I was angry at God last night.  If He can do anything, why is all of this happening??  Well, those feelings come and then they are fleeting.  There are things that happen in the world, to many people - to young children that their whole future in front of them and it can’t be explained.  You wonder why?  Well, why not.  You just have to accept it all and move on.  So, Wednesday we will move on and pray about it all.

That’s it for now.  I have a friend that may make some posts here.  His name is Glen so if you see some other posts you’ll know.  Your prayers and support are appreciated

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Tags:  Anaplastic , Brain Surgery , Brain Tumor , brain tumor survivor , GBM , grade 4 , Hemiplegia , My Story , Neurosurgery , resection

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

It’s been awhile since I have posted - I have really been enjoying this time.  As I have said, being off of chemotherapy is great.  We don’t know what the future holds but we pray for the best and complete healing, have faith in that but also pray for strength, peace and God’s plan for us, whatever that may be.

One of the many blog readers contacted me about 3 weeks ago and she shared with me that her church is having a women’s conference in October.  She had purchased my CD at some point and it really inspired her which always shows me that the way He has used me and worked through me for this album continues to touch people which is amazing to me.  Anyway, she told me that she wanted the conference is entitled “A River of Faith” and wanted to inquire about how we could work together to provide all attendees (100+ or so) a copy of the CD.   I’ve worked with her and I’m going to do a special run and we are going to get this done.  She’d like to include the lyrics for the title cut (River of Faith) in the program which is great and of course fine with me.  I’m sure she’ll let me know how the conference goes and again, it’s amazing how my ministry is touching people.

How time flies.  Keegan is crawling all over the place and is pulling himself in the crib.  Of course cabinet locks are installed everywhere al over again (new house when we moved here in 2006) so he’ll be walking soon.

Next MRI will be October 6th.  This will be an FMRI - Functional MRI - a bit different.   When I had surgery last year this technology did not exist - only something called BrainLab.  This technology is much precise.  It will show, down to a millimeter or less, how involved the tumor is with the motor strip.  And, since I will be asked to move specific areas of my body during the scan (shoulder, arm, hand, fingers, etc), it will show what areas of the tumor (again, down to a millimeter) are involved in the motor strip, thus showing what could potentially be debulked and possibly be removed utilizing GammaKnife which typically requires a 3-4 absence from normal activities.One more note - my ANC is still low - not sure if I mentioned this.  It’s around 1200.  It will take 6 months for my immune system to fully recover.  You might recall that it got down to 900 so it’s only increased but 300 points.  A normal persons ANC is 3000 or so I’m still getting sinus issues from time to time. This next scan will be interesting.  

That’s it for now! 

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Tags:  Album , anc , blood count , Brain Tumor , brain tumor survivor , CD , CDBaby.com , Christian Music , Church , My Story

As luck (or a hashed immune system!) would have it, I ended up with a cold.  Who cares at this point - it’s par for the course and I’m working on bringing myself back out of this over time.  It will take about 6 months and I will take antibiotics the entire time which will help me.  Now I’m not sure if this was caused by me, but my son woke up on Wednesday morning with a terrible cold - running a temperature and the whole nine yards.  I’m watching out from all sides!  He’s worse than I am for some odd reason.  I feel bad for him - he’s been in camp all week and had to miss yesterday and today.  I’m hoping he can finish out tomorrow at least.

Also on Wednesday I had some strange sensations in my left bicep - just slight contractions on and off in the afternoon.  They started again in the evening and at that point I knew it was my long lost friend - focal seizures.  So, after a period of time I became annoyed with it (I was trying to watch Dateline or something) and took an additional 200mg of Lamictil and they said goodbye.  For those of you that can’t envision this - this time it was like having a strong twitch in an area of your body - you try to turn it off but you can’t.  You see, a focal seizure can be as simple as that or a marching numbness in your hand or arm.  So many people have this classic vision of a seizure - someone flopping around on the ground.  That’s just not what they are all about.  There are a lot of different types.  I spoke to my neurologist about it - there’s nothing you can read into this.  It means nothing.  People can have clean scans for years and have seizures throughout - I actually never have them since 7 months ago or so.  People can have tumor growth and no seizure activity.  It’s just not an indicator of anything.  So you deal with it which is why when it happened I took a pill, talked to my wife about it and went about my business (back to the Dateline thriller!). 

You just can’t get all caught up in this stuff - you have to have faith in God and turn it all over to Him - period.  Could you imagine if I took every issue - a seizure, an upcoming MRI scan (I have one next Tuesday), some weakness I feel on the left side of my body, statistical survival rates, etc. and worried about them and placed it all on my shoulders?  I’d be an anxiety-ridden mess!  I remember when I came back to work and had 2 weeks of radiation left.  I was worried about how I’d get through that and still work but I turned it over to God.  And?  And I worked, left at lunch and went to the Institute and had radiation treatments, came back to work and finished my day - and I was on chemotherapy at the same time.  I got through it but not because of me - I had some help there.  The task ahead of you is never greater than the power behind you, right?  It’s true.

I have my 60-day MRI check on Tuesday - see my Neuro-Oncologist on Wednesday to discuss and then I’ll be done for a few months.  Things are good! 

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Tags:  Brain Tumor , brain tumor survivor , chemotherapy , Faith , God , MRI , My Story , Radiation Therapy

I finished up the first week back on chemotherapy last night and overall it went very well.  As I mentioned, I think my body wasn’t ready for it on the first night but by night 2 and 3 I was pretty well in sync with my system again - nothing to eat after 7pm, zofran at 8:30 or 9pm and then chemo treatement starts at 9:30pm as I go to sleep.  So overall I’m really happy with the way it went coming off of a 5-week layoff.  I’m also feeling good energy-wise.  I have some of the typical chemo-related fatigue but I don’t feel like I did before when my counts were so low - it was more or less just walking around feeling like I had a bad cold constantly and wanting to sleep! 

So another week on after taking a one week break and round 8 will be history.  If all goes well and I don’t have to pause my therapy for any other reasons, I will be completely done by November.  I will be taking a break for a week or so at the end of August for a vacation up to Victoria, British Columbia.  No, I’m not such a die-hard that I plan to be popping chemo pills as I gaze out of the hotel window taking in a nice view of the Empress hotel and Victoria harbor!  Speaking of vacations, that will be nice and we also have some friends who have a place at Northstar in Lake Tahoe.  She’s great and has been consistently “reminding me” to get up there so that is something that is in the plans too.  After last year and being tied to the house with a 2-mile rubber-band, it’s nice to think about these things and actually plan them out.

I’ll post again over the weekend - I hope everyone is having a good week and again, thank you for all of your continued support…

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Tags:  Brain Tumor , brain tumor survivor , chemotherapy , Oncologist , Temodar , tumor , zofran

I’ve posted info about Dr. Friedman at Duke before. He’s a Neuro-Oncologist who is known to be aggressive and advocates the use of therapies in addition to the “standard of care”. I recently posted a link to his slides that were presented in December at a NBTF teleconference (available in my resource library) and several posts down from here you can find a single slide embedded in a post that diagrams the Duke “standard of care” for a malignant glioma.

I came across the article below by Rebecca Tuhus-Dubrow that is focused not only on Friedman and the state of brain tumor treatment approaches but also, most poignantly, on her brother who was diagnosed with a GBM. I think the article is a worthwhile read - it’s well-balanced and if you take a look at the slides Friedman presented in December and can slog through the technical aspects of the content, you’ll see that there is a lot of value to what is being discussed here.

I have said before it’s overwhelming for anyone newly diagnosed to wade through this strange new land - you are whisked into this overwhelming tidal wave of choices. However, with some strong guidance and a steady course, the right path can be achieved and I truly believe that.

For me personally, I’m at a point where I have stability and with a grade III oligoastrocytoma I’m going to maintain status quo with my week on/week off Temodar regimen and 60 day scans. However, if we see any enhancement, any changes whatsoever, there are options including avastin, tarceva and other clinical trials that I could have access to that I have discussed with my team here at the Sutter Neuroscience Institute and have also discussed with the team at the UCSF Brain Tumor Center. I stay plugged in.

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Tags:  Brain Tumor , Brain Tumor Research , Brain Tumor Resources , brain tumor survivor , chemotherapy , Duke University , Oncologist , Resources (Brain Tumor) , Uncategorized

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 just read a story on MSNBC regarding the treatment plan for Senator Kennedy. It really just underscores the standard of care today with regard to malignant gliomas. As you know if you are a consistent reader, I have a grade 3 oligoastrocytoma. Although not publicly stated, most believe due to age and other statements that have been made that the Senator is dealing with a grade 4 glioma or a glioblastoma multiforme. Either way, the standard of care is mostly the same - surgery followed by concurrent radiation/chemo using Temodar followed by chemo (Temodar) and perhaps another chemotherapy drug such as Avastin. However, for grade 4 tumors, there are a lot of other options because of the sense of urgency.

Dr. Allan Friedman at Duke is performing the surgery and he is one of the imminent Neurosurgeons in the country if not the world and a giant in the world of research. I put up a post back in Janurary about a colleague of his, Dr. Henry Friedman (no relation) and a research slideset that he presented at the National Brain Tumor Fall Teleconference - Treatment Update for Brain Tumors. It’s highly technical in areas but it is worth going through. This slide set is also posted in my Resource Library along with many other resources that you might find valuable.  Dr. Allan Friedman heads up Neurosurgery at Duke while Dr. Henry Friedman is a Duke neuro-oncologist.

As of December, the Duke “Standard of Care” was described in this slide by Dr. Friedman - it includes a variety of options that you’ll find in the slideset including Gliadel wafers (embedded in a tumor cavity during surgery), the use of Avastin, Temodar, another chemo drug called Tarceva, CCNU and some clinical trials such as a vaccine they are working on:

I would recommend that you download the slides and go through them just to see what treatments are available and to see how deep these options can get. There is so much more to this than just going to your doctor and hearing a few things. I know many of you don’t do this so I am not inferring that - but I think we all need to be our own advocates and I would venture to guess that this material and the sheer volume of options can be intimidating to anyone - it is to me. Therefore, we need to keep going and stay on top of these options, even when we are well, just to know where the research is heading.

The take-away for me from today’s news? There is a standard of care and the absolute best that the world has to offer indicates that surgery followed by radiation (for me it was IMRT) and concurrent Temodar followed by 6 months to a year of Temodar (6 months is the general standard). Of course, this is different/tailored based on the case. As I stated, grade 4 tumors are an entirely different ball game because the survival rate is not very far out - so lots of options exist as shown above. But, the general decision tree and staples remain the same.

The bottom line is we are blessed to live in a world where so much exists to help us.

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Tags:  Brain Tumor , Brain Tumor Research , Brain Tumor Resources , brain tumor survivor , chemotherapy , Dr. Allan Friedman , Duke University , GBM , Neurosurgery , Radiation Therapy , Temodar