Blogging in B Minor

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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It’s been a bit difficult to write lately.  My left side is much weaker now and has now moved into my arm, hands and shoulder.  As I may have mentioned before, when I had the 8-day stint in the hospital, I felt a lot more weakness coming out. That was in October and it’s declined from there.  Simple tasks such as buttoning a dress shirt, tying shoes, getting my left arm into a jacket – things we don’t think about can be frustrating now!  Playing piano is more difficult which is hard for me to accept.  Carrying a glass in my left hand without spilling it is very challenging.  I’ll be doing another occupational therapy assessment soon.

In the hospial, the MRI indicated ischemia (minor stroke) so it’s either that or tumor growth,  I have an MRI scheduled for Jan 8th so that will be telling. 

I’ve received a number of emails and I’m sorry I haven’t been able to respond.  It’s just a bit hard at the moment.  I am working on my arm really hard right now, lifting light weights in therapy and still focused on walking of course.  It’s going to take time however…but God is on my side.  Whatever His plan might be is where I will go. There isn’t much choice.  I’m taking all of the worldly steps I can.

I hope all is well.  I pray I can ramble on longer in posts soon!

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Sending out a prayer for Steve, a co-worker who underwent a craniotomy this morning.  I do not know his condition at this point but am praying.  If everyone who sees this post can pray it would be appreciated.

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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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We purchased a Flip Video HD – they are so great.  HD quality, fits in your hand like a cell phone and just hooks up to the pc via USB.

With our new camera, I was luckily able to catch a secret rehearsal taking place – Keegan Miller preparing for his would tour with Elmo.  Check it out:

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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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Do any of us want to accept this diagnosis?  I didn’t and there are still times, such as this period of being sick that I find hard to accept.  But if there are a few principles – a few truths that God has taught me through this so far they are: 

1. I’m not in control.  My purpose in life isn’t and wasn’t defined by me.  I’m following a road that I have accepted – not accepting it would be like swimming upstream.  The fact is, I can’t change my circumstances other than the steps I am already taking, within my means.  This notion is tested, repeatedly sometimes, but it’s the approach and belief that is the cornerstone of the way I live today
2. Family and a strong network is vitally important.  This diagnosis can create pain and strife in the home mainly due to the fact that everyone is trying to come to grips with the same reality.  I can’t know exactly what it’s like for my wife and vice versa to accept and walk through this new world.  The same applies to my family but at home, being sick like this is hard.  Rachael is so supportive picking up most everything.  For anyone, that network is vital.
3. Stay in Today – This has really underscored the need to stay in today, positive or negative.   I felt this after my two surgeries but being in the hospital a few times plus this stay for 8 days, knowing each day what was happening was all I needed to look at.  Today.  And today wasn’t so bad.

I started this post a few days ago so I’m just getting back to it to finish.  My counts still aren’t up!  This is frustrating but at least I’m not sick – no fever, chills, etc.  My marrow just took a hit and it’s going to take a little bit more time to increase counts.  So, I have to be a bubble boy and just be very careful.   It’s sounds crazy – to me too – but this flu had the ability to evolve into meningitis and of course pneunomia.  Maybe I should wear a mask when I go to the lab - or maybe a WWII full on gas mask or a darth vadar helmet to really freak people out.  A darth vadar mask, hospital gown and a black cape.  Awesome.

CBC tomorrow and I will find out where my WBC and ANC are sitting.

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I’m slowly pulling out of this and have some time to ellaborate on my fun with the flu.  This flu is hard for anyone let alone those with a suppressed immune issue. 

First off, the strain of influenza I had been dealing with is called Haemophilus influenzae.  This is not to be confused with H1N1.  Most strains of H. influenzae are opportunistic pathogens – that is, they usually live in people without causing disease, but cause problems only when other factors (such as a viral infection or reduced immune function) create an opportunity.  As brain tumor survivors, we have inherently suppressed immune systems.   As I mentioned, my white blood cell count was 0.9 going in to the hospital and my absolute neutrophil count (ANC) was at 400.  Normal ANC is above 1,500 cells per microliter. An ANC less than 500 cells/µL is defined as neutropenia and significantly increases the risk of infection.  Neutropenia is the condition of a low ANC, and the most common condition where an ANC would be measured is in the setting of chemotherapy for cancer.  Neutropenia increases the risk of infection. 

So, I was a prime candidate which is why it’s important to have regular CBCs, which I do.  When the flu started my counts took a dive fairly quickly.  I have been on Avastin every other week The CBCs confirmed this.  The CBC on Thusday showed my ANC is at 1,200 now so I’m getting there but the week and a half of being down like this has taken its toll.

The MRI that we conducted in the hospital showed that everything is stable.  The one interesting detail is that there was an observation showing an infarct resulting from subacute ischemia.  Brain ischemia, also known as cerebral ischemia, is a condition in which there is insufficient blood flow to the brain to meet metabolic demand.  This leads to poor oxygen supply and thus to the death of brain tissue or cerebral infarction / ischemic stroke.  It is a sub-type of stroke.  This is viewed as a positive in my case because it shows that the blood supply to the area of the tumor is being cut off.  I’d venture to guess perfusion test would reveal this.  I am weaker on the left side and I have more issues with equalibrium.  I can’t be sure if this is a result of just having the flu,  an episode of radiation recall, or ischemia.  Regardless, I can’t do anything more than we are doing/have done.

Being in hospitals is not too fun obviously.  I don’t know how many bags of antibiotics were pumped through my body.  I ran a high body temp for awhile and that can make one more vulnerable to seizures (and ischemic attacks).  I had one seizure in the hospital.  Ativan handled it.  To add a bit more detail for those interested, the main symptoms of ischemia involve impairments in vision, body movement, and speaking.  The primary symptoms of brain ischemia that apply to me include problems with coordination and weakness in the body.   What is amazing is that all of this was a chain reaction that began with the flu.  My immune system is compromised and the dominos fall.

That’s it for now.   GLAD to be out of the hospital.  A prayer out to Michael who will be going in for a second craniotomy in the next week or so.  Please pray for him

 Cheers

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Many of you may be wondering why I’ve been MIA for the last few weeks.  Well, I’ve been in the hospital.  What began as a serious flu for several days resulted in a week’s long hospital stay with my white blood cell count plunging to a low of 0.8 – considered without a doubt neutropenic.  As a point of reference, the normal range is 4.0 to 12.0.  I was isolated and a good 25 bags of IV antibiotics were pumped into my system via IV.  It was NOT fun!  It’s all flu related.  The flu this year is harsh to say the least.  I’m taking a bit more time off so my body can catch up but wanted to put up a post so everyone isn’t in the dark.  I have others that will stand in in the future if necessary if something comes up and time gets away too much.

I’m planning to get back to normal life next week if the counts are there.  Sitting around is not fun! 

More to come when I have more energy… 

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