Blogging in B Minor

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

I haven’t posted for a bit as I have been busy with work - putting in a lot of time lately.  This too will have to be quick but I’m going to go in this week and most likely adjust my meds again. 

 Yesterday I had a focal seizure that just wouldn’t go away.  I ended up taking 450mg more of one of my meds than I typically do in the AM (this occurred in the morning) and it still hadn’t subsided after 1 hour.  This one was in my left leg as opposed to upper left extremities so it’s in a different location.  Anyway, I took an Ativan which is pretty powerful so work for the day was done!  My co-worker agreed to drive me home which was so nice of him.   Even on the way home this just kept going so at this point it had been nearly an hour and a half.  When I got home I took one more Ativan, went and laid down and didn’t wake up until 3pm - everything was fine.  I think I mentioned that my Neurologist sees no correlation between these episodes and changes in the brain tumor.  I’ve done my own research and there are mixed theories.  It’s hard to know.  So, we’ll just follow up.  I have a functional MRI set up for the beginning of October which will I’m sure be very revealing.  Until then, all I can do is deal with things as they come.  It’s hard not to let your mind wander but as much as possible you just have to take it a day at a time…

 More later….

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Tags:  Brain Tumor , Brain Tumor Research , MRI , My Story , 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

This last Sunday we were so happy to have Nick Vujicic at Bayside Church in Granite Bay, California.  For those of you who don’t know his story, I posted about Nick back in April and you should check it out.  Briefly, Nick was born without arms and legs - a quadriplegic.  He of course was ridiculed as a child and asked many questions - why are you the this way and he didn’t know.  He was asked why he didn’t know and he’d respond “I don’t know”.  No one knew.  It just was.  Fast forward and instead of living a life of depression and giving up, he has taken the opportunity to find God, realize His plan was to use him and his testimony as an example for others and to inspire people around the world that regardless of your circumstances, God will take you through anything and what matters is what is on the inside.  His web site is amazing.  He has DVDs and other materials that are inspiring.  I had a chance to briefly meet him afterwards and tell him a bit about my my situation.  He identified as he said during his message - why was this happening to him?  Why did God choose to do this to him?  If God can do anything, give me arms and legs!  He said he prayed about this over and over until he accepted this as his circumstance.  He still prays but he also realizes that life goes on.  I told him that I was in the same place, just a different situation.What a great guy.  Check out his web site.  He is truly inspiring.  He has traveled the world over and will soon be on Oprah.  Cheers 

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Tags:  Brain Tumor , God , hope , inspiration