Home » 2009 » November

Quote of the Day:

The price of anything is the amount of life you exchange for it.
- Henry David Thoreau
Nov 27

Thanksgiving and Goodnight Bug

My Story 1 Comment »

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. 

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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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Nov 25

Fun with Video

My Story 1 Comment »

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:

YouTube Preview Image

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Nov 22

Cognitive Endurance Tools

Recovery 1 Comment »

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. 

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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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Nov 15

Acceptance

My Story 2 Comments »

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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Nov 07

Follow Up – Flu & MRI

Complications 1 Comment »

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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Nov 03

Neutropenic – Hospital Stay

Chemotherapy, My Story 4 Comments »

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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