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Quote of the Day:

In music the passions enjoy themselves.
- Friedrich Nietzsche
Dec 31

Happy New Year

My Story 1 Comment »

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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Dec 22

Happy Holidays / Progress

Brain Tumor Treatment 1 Comment »

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

======

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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Dec 14

Left-Side Weakness

Brain Tumor Treatment, Neurological Deficits 4 Comments »

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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Dec 04

Prayer

Christianity No Comments »

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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