Blogging in B Minor

My brother Shawn came into town and has been here over the past 5 days.  It was so good to see him.  As planned, now that I’m off work, I’m trying to spend a lot more time with family and friends.  I was really sad to see him go but we will be having more visits.  I wish we lived closer.   

Here are a few great pics of Napa. 

Medical

I have an MRI this Thursday.  I’ll begin to see some Gamma Knife results (albeit difficult to see because of swelling) and we’ll be checking on the first tumor resection site and anything new of course.  I’m continuing to have a CBC done each week at the lab just to make sure my counts are good.

I’m also talking with my neuro-oncologist about starting up the vaccine in about 2 weeks.  I have 3 doses left (a dose consists of one injection into each arm) and we’ll use them in a booster fashion – every 2 weeks.  Pulling out the stops on the rest of the DCVax.   Avastin and VP-16 are the other two players in the plan along with valcyte.  Yeah!  How’s that for a brain tumor cocktail….post-gamma knife!  The positive is I’m more used to VP-16 so side effects are spread apart.  We’ll settle on everything after the MRI.

I’ll post info about my MRI later this week. 

I’m feeling at peace with things.  Getting away helps but a lot of prayer lately has helped tremendously. I was meditating on Proverbs 23:7 today.   ”For as he thinks in his heart, so is he (Proverbs 23:7, NK).  I sometimes read the devotionals on Joel O’Steen’s site and this piece asked the question, “do you ever stop to think about what you’re thinking about?”  The Bible tells us that what happens on the inside of us - our thoughts, attitudes, and motives are more important than what happens on the outside in our actions.  Jeremiah 29 tells us that His thoughts are for our good. His thoughts are for our peace. His thoughts are for our victory! 

The entire goal of course is to align our thoughts with His thoughts by meditating on His word. 

Cheers,

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First off, here’s a freaky image!  I want to be this next Halloween!  This look at brain anatomy  is somewhere on my blog but I thought it would be worthwhile to include it in another post.

This really explains the delicacy of the primary motor cortex which is exactly where the two tumors I have are located. The original tumor that was first discovered in January 2007 has primarily affected the area at the top – functions such as the arm, trunk and foot. The second tumor that was just discovered several weeks ago has significantly affected my hand and arm which makes sense if you look at this on MRI.

This diagram is blown out into other diagrams. For example you can find a diagram that just focuses on the face. It’s amazing.

In terms of Gamma knife, the swelling in my forehead has subsided.  It basically drops down from your forehead to your eyes and then into your cheeks.  At one point it was just above my eyebrows and Rachael said I looked like a Vulcan!  I did! It was like a huge ridge that went from one side of my face to the other.  My good looks were just starting though. Next, it dropped into my eyes and I look like I got punched out in a bar. Woo hoo! A cancer patient brawing in bars.  I walked out into the family room one morning and my son Aidan looked at me and said “you look different dad – have you looked in the mirror?”  Nice.    Alas, it’s gone

I’ve had the normal nausea associated with taking VP 16 but Zofran really helps with that. Still a bit fatigued but that is much better. Over the weekend I was pretty tired but I expected to be.  Tomorrow I’ll be going in to me with my neuro oncologist followed by another Avastin infusion.  I’ll go in for physical therapy.

With the fun stuff, we are looking at a number of options for get-aways. A few local options such as Carmel, Monterey, and other destinations on California’s central coast are convenient. We’re planning a trip right now with Aidan but were not sure where. It’s a trip that will be just for the three of us since Keegan is two and Rachael, Aidan and I have never done this before. There’s a cool safari trip that we can do overnight - you take a jeep trip through a large open area – giraffes bow down and you can touch them and there are a lot of other animals.  Then you can stay overnight in a cabin that has netting and canvas so you can hear the animals at night.  I will take lots of pictures.

God bless

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I’ve now completed my second week of using VP-16.  I’m now starting to feel the cumulative effects of this chemotherapy. It’s somewhat like temodar but for some reason the side effects are felt more consistently.  With temodar I would feel nauseous in the morning but it would subside by about 8 AM. With VP 16, I’m beginning to feel nauseous most of the day. My routine has been the same as it was with temodar but I am folding in more zofran to address the nausea.  I wake up just not feeling good but it goes on into the afternoon.

I’ve always stated that this blog is real meaning it’s not candy-coated. I do my best to share with you as honestly as I can - the good and the bad. The last two days have not been so good for me. I’ve been feeling sick, fatigued and a a bit down primarily because of my loss of function in my left arm. This morning in particular was a little bit of a breaking point for me. For the first time I was not able to reach my right under arm with my left hand to bathe.  I wasn’t feeling sorry for myself. I know there is a lot more to come that will be even more difficult  It was more about the physical limitations I have now and the dependency on others compared to how I used to be and it was so incredibly frustrating to me. I hit the shower wall a few times to be quite honest and because of my frame of mind started wondering what’s next.  My left shoulder is just very weak and it can’t support the weight of my arm. The tendons from my scapula to my shoulder are separating and most of the pain is felt in the AM after sleeping overnight.  I’ve been trying to use a towel lying on my left side to support my arm and shoulder arent pulling as much but it doesn’t seem to help much.   The result is if I bend over during the day to pick something up I hear pops and cracks in my left shoulder and it further stretches out that tendon.  I’m stooping as best I can but it’s just a problem I have to work as with the others.

If anyone has experience with shoulder injuries and support systems for sleeping at night I would greatly appreciate any input you have!  I think I’ll have some good information from PT tomorrow afternoon.

As I well know, this type of thinking – getting caught up in the problem – accomplishes nothing but at the same time I think it’s important to walk through whatever you’re going to feel. The reality is the same. I’m only human and it is frustrating.

It took me a while to get back into today which is where I belong and what I preach all the time. This certainly addresses the future and anything that is to come. That’s all part of God’s plan. What I find difficult is when I’m going through something like this, I’m frustrated and it IS happening today.  There’s no other way than prayer and turning it over and I’ve done that over the last three hours. Enough said

With regard to IV chemo, I will be at the infusion center tomorrow for avastin treatment.   I’ve been doing this every other week for quite a long while. On February 1, I will have another MRI. At that point will see where we are and I know that we will be guided in the right correction.

Lastly, I have upgraded the blog’s core software to the latest version. What this means for everyone else as I will be able to build in new functionality that is really exciting. Already I have put in a mobile edition of the blog that you can access with an iPhone, Blackberry and most of the major smart phones. Basically it’s a stand down version of the blog that allows you to see recent posts, comments and allows you to respond to posts on the go.  For me, upgrading the blog opens a lot of possibilities in terms of some projects I’d like to tackle when I’m not working. After all I I still have that brainy side that needs to be exercised

I will provide updates as usual. Friday is my last day of work.

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It’s hard to believe that an entire year has passed again. 2010. It seems like yesterday that it was 2009 and we are celebrating the new millennium.  For us, this year has been a year of challenges and frustrations but more importantly it has been a year that we have had many good times that we really try to focus on. Living for today every day throughout the year can be challenging as you know that it’s the right way to live for us.

Having a GBM is not the end of the world. In the beginning you do feel that there is so many other people in the world that have their own issues and you realize that you are not unique as the brain tumor survivor nor are your family and friends. A good case in point is my coworker who was just diagnosed with a brain tumor about a month ago. Yesterday when I was at the oncologist’s office very nice receptionist who I’ve gotten to know told me that she’s been diagnosed with MS. I feel for both of them she told me that she wanted her old self back I completely understand this feeling. But in time you realize you have to go on. And we do.

In February of this year I had a recurrence. This was 4 Months after my second surgery in October, 2008.  That led to gamma knife surgery in March. Typically, when you have a recurrence, the next recurrence (if it occurs) becomes even shorter from the last.  Oh no!  Statistics!  Well, put those to rest by reading this post.   I had Gamma Knife in March and then started an experimental treatment called DCVax Brain in April.  Read the Sacramento Bee article to learn more.   I continued with Avastin and a drug called Valcyte.  The only time I came off of this regimen is when I was hospitalized for a bad respiratory infection called Haemophilus influenzae.  I was very neutropenic.  Since then I’ve contined back on the same drugs.  Seizures?  Rattling for sure but part of the territory and God walks beside us through all of this. 

So guess what?!  10 months since the recurrence in February, more than twice what our so-called stats indicate.  I’m ready for anything because we have God.  It’s not about me.  This disease and all others are of an earthly nature.  Our God is a loving God who doesnt wish harm on anyone but in the beginning we sure were angry with Him – and let Him know it.  He’s big enough to handle that though.  

Our prayer for the New Year is to live day by day and remember that this is not our plan.  We are doing everything possible to address the problem.  And, as God guides us down this road that He didn’t create, He is putting opportunities for treatment options,  people in our lives, support frameworks and so much more.  Nothing is by accident.  I’ve seen it in my life and others.

I hope everyone has a safe and happy new year and here’s to a healthy 2010…

Cheers

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As usual it’s the last minute shopping and wrapping for Christmas.  This is a great time of year but it’s also so busy.  In addition,  I started back on treatment using avastin and and valcyte.  As you know, I had to take some time and stop chemo treatment after my bout with the flu to give my marrow time to generate white blood cells.  The week before last I had a DCVax injection and last Friday I went in for an avastin infusion since my counts are back up.  I feel a lot better now that I’m back on treatment using multiple agents.  I have an MRI scheduled for January 8th.  At that point we will be able to more info regarding the small area of enhancement that was seen on the MRI taken while I was in the hospital.  You may recall that MRI report indicated that there was a small area subacute ischemia.  Put simply, this is conjecture on the part of the neuroradiologist but it could be either a small TIA  that occurred in the hospital or it could be tumor.

I have spent time in physical therapy focusing on both my leg and my left arm.   Slow progress but getting there  The same holds true with my left leg.  So, I’m doing as much as I can at this point in time.

A friend of mine pointed me to this interview with Ben Stein on CBS Sunday morning.  The interview actually took place in 2005 with Charles Osgood.   He had some very thought-provoking things to say that I think are very true.  I’m going to  paste majority of this below.  When you think about it what he says is so true.  I won’t provide any commentary because it’s really not necessary.   It speaks for itself.

Also, I wanted to let all of you know that I really appreciate all of the e-mails and comments that you have left on the blog that have encouraged me through this setback.  Even though I can’t respond to all of you know that I really appreciate the encouragement and prayers.

Wishing you all happy holidays

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Herewith at this happy time of year,
a few confessions from my beating heart:

I have no freaking clue who Nick and Jessica are. I see them on the cover of People and Us constantly when I am buying my dog biscuits and kitty litter. I often ask the checkers at the grocery stores. They never know who Nick and Jessica are either. Who are they? Will it change my life if I know who they are and why they have broken up? Why are they so important? I don’t know who Lindsay Lohan is, either, and I do not care at all about Tom Cruise’s wife.

Am I going to be called before a Senate committee and asked if I am a subversive? Maybe, but I just have no clue who Nick and Jessica are. Is this what it means to be no longer young. It’s not so bad.

Next confession: I am a Jew, and every single one of my ancestors was Jewish. And it does not bother me even a little bit when people call those beautiful lit up, bejeweled trees Christmas trees. I don’t feel threatened. I don’t feel discriminated against. That’s what they are: Christmas trees. It doesn’t bother me a bit when people say, “Merry Christmas” to me. I don’t think they are slighting me or getting ready to put me in a ghetto. In fact, I kind of like it. It shows that we are all brothers and sisters celebrating this happy time of year. It doesn’t bother me at all that there is a manger scene on display at a key intersection near my beach house in Malibu. If people want a creche, it’s just as fine with me as is the Menorah a few hundred yards away.

I don’t like getting pushed around for being a Jew and I don’t think Christians like getting pushed around for being Christians. I think people who believe in God are sick and tired of getting pushed around, period. I have no idea where the concept came from that America is an explicitly atheist country. I can’t find it in the Constitution and I don’t like it being shoved down my throat.

Or maybe I can put it another way: where did the idea come from that we should worship Nick and Jessica and we aren’t allowed to worship God as we understand Him?

I guess that’s a sign that I’m getting old, too. But there are a lot of us who are wondering where Nick and Jessica came from and where the America we knew went to.

.

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I hope that everyone in the US had a great Thanksgiving holiday.  For those of you that decided to brave “Black Friday”, I’m sorry.  I was in bed until 8:30am!  Plenty of deals and plenty of time.  It’s amazing to me to see people in front of Best Buy with coolers and tents, yes tents, at 4pm on Wednesday so they could pick up material possessions for a big price break.  My own perspective is that this obviously means that on Thanksgiving Day, these folks are spending time away from their families.  Of course it’s a personal decision but it’s hard to understand sleeping in a tent on concrete for two nights over a family holiday to buy a playstation 3 or whatever it might be!

I’d like to thank everyone who has supported me over the past three years as I’ve walked through this.  I could never have endured this without God and all of the support of family, friends and all of the brain tumor survivors I have met along the way.  Support through surgeries, chemo, radiation, physical therapy from a wheel chair to walking again, gamma knife, experimental therapy using DCVax, focal seizures throughout and other challenges has been invaluable  In short, this blog has been a blessing for me.  I know it has helped many based on all of the emails I have received – and if it only helped one person I’d be more than satisfied.  However, what some of you may not realize is how instrumental this has been in my own journey.

Writing is a great way to think things through, release stress and helps one cope.  Originally, this was a place to distribute my music.  Now it’s more about my journey.  It was then meant to update friends and family on my condition and store my research.  Then I found that sharing my experience and my own testimony also gives me a sense of purpose in the middle of a storm.  Traffic built and now it’s a popular site for primary brain tumor info and assistance based on one person’s view. 

Today, it’s not such of a storm every day and that is a result of, in large part, everyone I have met along the way and many of those that I have met have come through my blog.  Your responses to my posts, emails of encouragement or emails just telling me that you’ve found research and testimony that has really helped you on a given day is very uplifting to me.  So to all of you, I give thanks for support, emails, phone calls, comments to my posts and help you are giving to others. 

As I mentioned in my last post, I’m taking video now with a Flip video.  So easy to use.  Here is a clip from this week.  Keegan received one of those wind-up toys – it’s a caterpillar.  This is one of those clips of a child that makes being a parent fun!   

This is called “Good Night Bug”.  It’s short so keep watching. 

I had a treatment using DCVax on Wednesday.  I will update over the weekend.  We are changing the protocol and using a cream called Aldera cream over the injection site.  I’ll provide details later.

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I’ve been looking around for some “brain exercise” or fitness apps/tools to just exercise it for sharpening.  I believe that it’s important, particularly with short-term memory lapses ocurring from time to time.  Looking at it as a muscle, it needs work.  For me and my various areas of focus, mental fitness is something that must be maintained as much as possible.  Just as going to PT, I have to exercise my brain.  I am fortunate to have the ability to work and do well but I need to stay ahead of the curve.

Ideally, I was searching for an iPhone-based app(s) so I could use them anywhere.  I targeted apps that would work on my cognitive training/endurance through various methods whether it be spatial recall, logical reasoning, etc.  I searched in the appstore and finally came across a great set of tools from Lumosity. 

The first, Memory Matrix is great. It’s simple but at 9-10 squares it’s challenging and definitely pushes mental fitness.  There are other features of the lumosity web site that I haven’t explored as I was mainly after these mobile apps but it appears you can track much of what you do, leverage online tools, etc.  Speedmatch is another one that is worth downloading or using online.

I’m getting ready to plan my next DCVax injections.  I’ll be doing this next week hopefully.  I’m feeling better – counts are better.  Still working against fatigue and having to work harder on PT.  I’m feeling additional weakness on the left.  These are all things that I can’t change although this run has been a bit tougher.  I certainly can’t deny that!  At the end of the day, however, it’s in God’s hands.  I’m following the path but it’s really not about me – He’s not done with me and I just keep seeing examples of that.

I’ll post about this later, but a gentleman at work just learned he has a brain tumor – a primary and based on what I see it’s a mixed glioma.  I’ve spent some time with him and he’s found some information here that has helped him.  I know I didn’t have someone, or many, to talk to in-depth about what’s next, how did this go, etc.  I feel that if he has to go through it, I certainly am there to help.  I’ve walked down the road.

Pray that all are well,

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Just a quick update.  I am continuing with my bi-weekly avastin infusions and they are going fine.  I will have an MRI coming up in the middle of October – yet to be scheduled.  Walking into the infusion center every two weeks is always a bit sad on several fronts.  I typically pray for many people in there.  I’m blessed to be in the position that I am with a GBM.  So many people in there are just at the end of the road.  It’s their time but I take comfort in knowing that this is God’s plan for them.  Many of them smile and have joy in their eyes, still.  Others are just very tired.  I pray for all of them though.  The team there is very good – they really know how to take care of their patients.

I am noticing over the past month or so that my memory is slipping a bit.  It’s all short-term memory.  I use my iPhone constantly.  Examples – I’ll set a meeting for a Thursday and someone will tell me they can make it on Thursday (this will be on a Wednesday for sake of discussion).  I’ll reply “oh, the meeting I set up is on Friday, not tomorrow?”.  With confusion showing on their face, they’ll say no, it was Thursday.  I’ll say ok, you’re probably right and I’ll double check my calendar.  Or, I’ll ask someone on Tuesday who’s playing on Monday Night Football and of course if was “last night” because I’m asking on Tuesday!  Dumb stuff!  People say that they themselves do that all the time but I know radiation is catching up to me.  My neuro-oncologist has noticed – and I’ve missed some appointments with a therapist I use for support as a result.

The positive?  This doesn’t affect my professional life.  I am laser-focused at work.  I may let a few meeting times slip, but I have audible alarms and other means to stay on top of everything.  I’ve also found some great brain teaser type of game for the eye phone that build up cognitive endurance.  Between that and my professional life, I’m getting along just fine.  It’s something that is evident to me now is all.  It is what it is and I am taking steps to work on it.  Just like physical therapy that I have every week, I have to work on this, too.  Sometimes it feels a bit overwhelming – so much to do!  However, this thinking goes back to living in today and, sometimes, just in the moment.  I can choose not to fill myself with everything at once.  Right now, I’m just posting this to my blog, period.  That’s it.  And I’m enjoying it!

Next week is an off week for treatment.  I’m still having seizures – had one over the weekend last weekend but they are very minor.  I’ve had so many minor seizures that I can walk through those just fine.  I will say that the first few seizures after the large seizure back 4-6 weeks ago concerned me in the beginning.  I wasn’t sure if they would evolve into something more significant but they haven’t.

Kids are great and Rachael is doing well.

I had to put this pic in here.  Rachael took this of Keegan at a park and he looked so happy!  She told me that 5 seconds before this a little girl was looking through the same window and he bonked her on the head so he could get in there.  Bully.  He apologized after the picture.

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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.

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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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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