Blogging in B Minor

This is a little late but I was reminded of this today and meant to post it when I first read it.

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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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A very quick post and some pics regarding today’s Gamma Knife surgery.  First, everthing went perfectly and it was successfully completed today.  A long day it was.  We were there at 7:30am and left at 2:00pm. I will get into more details later about the process (this is #2 for me) I thought it would be helpful for some to see pictures of the actual prep involved in Gamma Knife - the prep consumes most of time. 

Warning for the squeamish – some of these pics may not be for you.  After all, they are screwing a device to my head to render it immobile while receiving high dose precision radiation from the machine:

More to come later but wanted to quickly thank everyone for all the prayers.

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Yesterday I had an MRI in the morning that was scheduled as a 30 day follow-up to my last MRI. The image to the left is the result. The yellow arrow represents the existing tumor cavity left over from my second surgery. The red arrow represents a new tumor that was found during the study. There’s no way to understand the grade of the second tumor based solely on MRI but presumably it’s also GBM and originated from the initial tumor. These tumors are infiltrative by nature and grow like weeds so you can stamp one area out but they have fingers and can pop up somewhere else. So much for my first day of being retired!

I always remember, there is nothing that can happen at this point that we can’t handle and there is always a solution that we can pursue. It’s never easy but we find our way. So once again, the wheels of medicine are often running. The first thought here is Gamma Knife and that is what we are going to do. It’s scheduled for Thursday morning. I have a meeting with my neurosurgeon tomorrow just to discuss the game plan and any deficits/risks of the process. The second tumor appears to be on the motor strip as well but in the specific area that controls my left hand. I had a seizure on Sunday morning and it was a little different than previous seizures in that my left hand was pulled into a fist and I started pumping my fist repeatedly. This correlates with the location of the new lesion.  I had Gamma Knife in 3/08 so this will be #2

As I have more information I’ll post it here. Thanks for all the prayers and support.

God bless,

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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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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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Before I left for Tahoe, I had an MRI as a recheck just to ensure I wasn’t experiencing any growth.  Sometimes an MRI is a result of a patient being symptomatic of course.  As you may have read, I had a fairly significant seizure so it was necessary.  My last MRI was July 12th which showed a reduction in size when compared to the May scan.  This MRI came back showing further shrinkage and it was done a little more than 30 days later.  The tumor cavity has further collapsed, showing that cancer cells are being killed off.  This is great news!

Several theories.  One is certainly my use of DCVax.  I started this in April and it may be moving in a very positive direction.  I’ve discontinued my use of thalamid – this was 45 days ago.  I want to see if that’s necessary.  I’ll know in the not-too-distant future.  The second is Gamma Knife.  This was done in March.  A third – use of Avastin every several weeks via IV.   We can also look at combinations of each.

My own sense.  It’s a combination of all three.  How’s that.  There is a theory with GBMs and perhaps many brain other primary brain tumors that you keep the tumor guessing to keep it simple.  The Gamma Knife blew away, as much as possible, a small nodule of growth.  The Avastin typically keeps it in check.  In spite of past failures using Avastin + CPT-11 (Irinotecan), we decided to use DCVax with Avastin.  I believe most of our success comes from DCVax.  I’m sure I put data here.  You can do a search on the site and find info.

We are very happy that we have had 2 scans showing a reduction in size.  We’ve only ever managed “stable”, never some positive success.  We’ve of course had failure along the way, such as last Octiber when my tumor was an Oligoastrocytoma 3 and went through an anaplastic transformation to a GBM that resulted in surgery.

A great weekend…

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