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Quote of the Day:

I don't care much about music. What I like is sounds.
- Dizzy Gillespie
Sep 22

Treatment Update and Concerts

Chemotherapy 1 Comment »

I haven’t posted for a bit – just continuing treatment and spending time with family.  Things are good.  On the medical front, I had my bi-weekly infusion last Thursday and met with my neuro-oncologist.  I’m continuing with physical therapy every Wednesday and working hard to strengthen my left leg.  It’s still weak but working it is helping a lot.  I had a new brace made and that is also helping.  I wear the brace every other day as to not rely upon it too much. 

When talking to my neuro-oncologist, I learned that I do not have 3 years of my experimental vaccine left, only enough for 4 more “boosters” which are 16 weeks apart.  16 week intervals are a bit long for someone with a GBM.  This was a huge delta.  Turns out the initial 3 year estimate was not from Cognate, the company that actually controls and manufactures the vaccine.  Anyway, since I’m not in a trial per se, we can use it as we see fit, so if I need to tighten this up we can.  I can pull it off the shelf I can.  Again, not much I can do about it so I can’t and won’t get stuck here.  It’s up to God.

Our son Aidan is playing soccer and I’m doing some assistant coaching again.  I stumble around a bit but can still kick with the right leg if I plant my left just right.  It’s awkward but being on the field with all the kids is rewarding!  Our son is doing great – he scored his first goal of the year on Saturday.  He was thrilled!

On another topic, I went last night and saw George Winston play live.  Talk about feeling inferior as a musician!  For those that are unfamiliar, he is an amazing pianist.  I have embedded one of his pieces below called Blossom in Meadow.  It was an absolutely amazing experience seeing him live in a small venue.  We were 10 rows back stage left (looking at the stage) so his hands were in plain view.  How wonderful.

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Also, over the weekend there was an equally amazing guitarist at Bayside Church, our home church.  His name is Josh Wilson.  His acoustic guitar playing using delayed effects is so unique – nothing like it.  This is his rendition of Amazing Grace.  This one you have to head to YouTube to see.

http://www.youtube.com/watch?v=kd4PBZgxCB4&feature=related

I hope you enjoy all of this and I pray that all of you are doing well.

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Sep 11

9/11 and Trials

Christianity, Inspiration No Comments »

911tribute.jpgIn the United States, today of course is the anniversary of the worst terrorist attack in our history.  I first want to send out a tribute to those who lost their lives, family members who lost their loved ones and the courageous fire fighters and other civil servants who gave everything to try and save everyone they possible could.

We always imagine that we would be all right if a big crisis arose; but the big crisis will only reveal the stuff we are made of, it will not put anything into us. “If God gives the call, of course I will rise to the occasion.” You will not unless you have risen to the occasion in the workshop, unless you have been the real thing before a crisis. If you are not doing the thing that lies nearest, because God has engineered it; when the crisis comes instead of being revealed as fit, you will be revealed as unfit. Crises always reveals character.

I have mentioned many times how difficult, too, it is for all of us to have a brain tumor diagnosis.  We all ask why?  “Why is this happening to me, us, our family?”  It’s difficult to answer this question.  Perhaps it will never be answered.  For me as a believer, I know that I have a purpose in life and always have.  My purpose has just taken a turn post-diagnosis.  Not only does this build endurance, but that endurance and the way I approach this, in every way, is in plain view of my children.  I want them all to see that no matter what lies ahead, big or small, you can still face it.  I take steps backwards – we all do, but I’m certainly not curling up in a dark room without a window and shutting down.  What kind of role model is that?  It demonstrates how easily you can be defeated and as they get older they will remember that.  Rather, facing trials are a fact of life.  Without trials in our lives, even of this magnitude, we have a purpose.  We have the opportunity to share our testimony with others.

I’m not wanting to be an inspiration.  For me, it’s not about that.  It’s about my family.  And, one purpose I have found is helping people who are also afflicted with this disease.  I have received so many emails from people who just don’t know where to start.  I remember feeling that way – life changing on a dime.  Doctors telling you to do this and that.  The clock is ticking.  You don’t have time for this or that.  Well, I followed the path that I was placed upon.  If something goes in a direction I’m not happy with, I will adjust.  Do I have a choice?  No – adapt and formulate a new strategy and know that things are exactly as they should be.  Change the things I can control and accept those things I cannot change.

9/11 was a trial of an enourmous magnitude that affected hundreds of thousands of people.  Lots of healing was necessary.  The healing may never end.  However, they are all an example to us.

Finally, check this out – it will leave you amazed:

YouTube Preview Image

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Sep 04

Radio Interview Re: DCVax

Brain Tumor Vaccines, DCVax No Comments »

This is a great radio interview with Dr. Linda Liau, the creator and chief investigator/neurosurgeon at UCLA regarding DCVax.  Joining her is the chair of the UCLA Department of Neurosurgery at UCLA.  It’s about 20 minutes long but is very interesting, particulary if you are interested at all in immunotherapy.

I again am so blessed to have been given this opportunity and I seem to be responding to this well.  It is hard to tell thus far but my GBM is shrinking.  Here is the interview:

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Sep 03

Faith and Update

Christianity 2 Comments »

I hope all is well with everyone.  I’ve been doing ok.  A few seizures here and there but not anything I can’t handle.  I had one at work on Monday and had to head home but it wasn’t too bad.  Once you have experienced enough of them, you can face them with little fear.

I was reading a devotional a few nights ago and it was about faith.  As brain tumor survivors, family members, friends etc – we pray.  We pray for healing, comfort, miracles, hope, strength – the list is long.  As I continued to read, I thought about my family, all of you, myself and many other people.  The piece compared the differences and altogether contradiction between faith and common-sense – that faith is not common-sense.  Can you have faith in God where your common-sense cannot place trust?

In our situations, we put our faith and prayers in God’s hands – at least many of us do.  For most of us, this diagnosis has pushed us down into a valley, run us dry, and given us no outlook in the beginning or at certain stages.  As such, we will see whether we can go through a trial that tests faith, or whether we will sink back to something lower. 

Our faith is tested.  The devotional asks the question, “What is testing your faith right now?”  That test will either prove that your faith and hope for the future is right, or it will kill it.  The gist is that it’s easy to stand on the mountain top and pray, have faith, etc.  Our faith really isn’t tested.  It’s when we have trials in our lives that our faith is tested – and we either succeed or fail and to failing is not an option for me.  We have no choice but to face it in my view.  Curling up and shutting out the world is not an option.  This is not to say it’s easy – not at all.  If you’ve been reading, I’ve had 2 surgeries (one of which was 2 weeks prior to my second son being born), IMRT radiation, gamma knife, 8 rounds of chemotherapy, was unable to walk and now I can, etc.  It’s been hard – and there will be more but living in today and having faith are key.  No one is perfect.  I’m flawed in so many ways it’s laughable.  But one thing I do know is God isn’t done with me yet – there’s a plan, and I have guidance here.  I trust in that and have faith.

It doesn’t matter if you believe, don’t believe, etc.  I think the key is faith – whatever you put that faith into.  For me it’s just different.

I have an Avastin treatment today.  I’m still using only avastin and the experimental vaccine.  More to come…

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