Blogging in B Minor

I sure need to remember this. The last four or five days I have allowed myself to stray from stable ground into the unknown and dangerous territory called tomorrow. In addition, and equally dangerous, I’ve been thinking about the past, most notably my job, “how it used to be” and other aspects of life before brain cancer.

I have written a lot about how difficult different points of this journey can be. Those of you on this plight know from your own experience. I knew that this juncture would be difficult (leaving my career and adjusting to home full-time) but I admittedly under-estimated just how difficult it would be to leave my career in the past, keep my feet firmly planted in today and make a smooth transition.

To give you a view of some of what’s going on and what I’m praying about, I just really mourn the fact that all the work to reach that certain “position in life” is over or has seemingly culminated – at least in the environment I have enjoyed for so many years. If we are to reach our goals, all of your drive, perseverence, goal-setting and ability to capitalize on opportunities must come into sync and so much more. Only then will we reach various milestones. Moving to Sacramento was a significant milestone for us. Being close to family being our first objective, securing a position that was perfect for me and being blessed with the lifestyle we have been able to enjoy has been amazing. We were blessed in Orange County but being in Sacramento w/family is all we wanted for the kids. About nine months after we moved was when I was diagnosed and we wondered why. We all wonder why, don’t we? And then I accepted it and faced it and thought “why not?”

I slipped back into it. Over the last three days I once again wondered why. This is old ground! Why on earth am I churning through this again? These are the trappings of yesterday. If you’ve read my posts, you know why I can’t work just as much as I do and the reasons that I’m doing this – my aim is 100% correct – God and my family all know this. Yes, I was passionate about my career and this is a huge adjustment for me but it’s the road that God has placed me upon. But leaving it behind is…..hard.

You see, I know that living in the past veils today. It’s akin to putting on one of those old movies that has lines and squiggles and out of focus scenes in it that blur today’s experiences. This such a difficult concept in practice. Yesterday holds many wonderful memories and also trials and adversity. They are what shape us and how God has planned our lives. Worrying about tomorrow chips away at my trust in God and also veils today but in a very different way. If I’m in a vulnerable place, worrying about things like finances, my children and their education, their financial future, all realistic given my circumstances – I have placed it on my shoulders, not in God’s capable hands . God’s big enough for all of this. Don’t get me wrong. There is a very human component here. For me there is nothing wrong with mourning or grieving my career that I am forced to walk away from because of my health. However, when I begin to lean into those feelings and they seem to overtake my day, that is when I know I have been knocked off-center. I’m sure the barometer is different for everyone.

So where does this take me? It takes me full circle back to today. Living in today because it’s the day He has made and it’s what we have. It’s all any of us have whether we have leukemia, brain tumors, or perfectly healthy lives. After praying a lot one verse stood out:

Romans 8:5 says: For those who live according to the flesh have their outlook shaped by the things of the flesh, but those who live according to the Spirit have their outlook shaped by the things of the Spirit

This is about faith, hope, strength and continuing to push the best I can. The disease may be beating me physically but it can never take who I am, what I have accomplished and will accomplish together with God and the undying love I have for my wife, children, family and friends. It will never do that and cannot ever do that – to any of us.

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All the days ordained for me were written in your book before one of them came to be. (Psalm 139:16)

How many days does anyone have left?? I don’t know and no one does, except God. As many of us have learned through the Bible, He knows the exact number of years, days, hours and seconds that we will be here on earth.

This may not seem like a very uplifting topic. In fact, most people find the topic frightening. As the brain tumor survivor, I have grown to adapt to this thought and find a lot of comfort in knowing that God has a perfect plan for me.  I will not die a day sooner or live a day longer than what has already been planned by him from the start.  In knowing this, I am relieved of the fear of death and I can fully live the life that God has planned for me. This does not mean it’s easy.  After all we are only human.  However, I can move through this trial with the One who is intimately involved in my life.

God knows me! He knows everything about me. He watches over me and my family and has proven time and time again this all to be true. Right now, we are cautiously discussing the notion of my not working so that I can spend time with my children and family — time that I might not have later at least in higher functioning state. This is not a situation where I’m being negative. This is a situation where I’m talking to God and looking to God to provide answers. My wife and I are praying and I’m seeing a pastor who are talking about it. At work, I have started discussing some options but not a serious level. This is for later. But, God always has an interesting way of communicating. My boss at work told me that he really thought that time with my family would be important. I agree with him it is only the timing of it is key. I love what I do and I garner significant satisfaction from my career. My oncologist and physical therapist both said the same thing yesterday. Then, this morning when I went outside to leave, my neighbor across the street mentioned that he saw me leaving a little bit later in the morning. I just told him I was slowing down just a little bit. He told me “don’t work too hard” and I said I know and he said again don’t work too hard. This is how it always happens. Certain cues present themselves in over a period of time they stack up one way or another this will all be sorted out and the answers will come.

In praying about surgery versus chemotherapy, we are beginning to feel that surgery is not the right direction. They hit we would take in terms of quality of life would be significant. Not only for me but for my wife and my family. I’m a pretty independent person and don’t like to be dependent on other people and this would change all of that if I’m a hemiplegic. So why not spend this time as a higher functioning father and husband. Anyway a lot more to pray about and this decision is down the road but it’s something that needs to be thought about giving my symptoms.

“Such knowledge is too wonderful for me, too great for me to understand” (Psalm 139:6, NLT), but it won’t keep me from enjoying this day and praising the One who is in charge of it.

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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 believe I forgot to mention this.  Our son Aidan’s class is sponsoring a child in Mexico who is in need.  So, all of the students are encouraged to bring in some money once a month – a dollar or so.  Aidan works for his allowance and he has a number of chores and positive behaviors that he focuses on to earn a weekly sum. 

About a week ago, one morning he came out and told me he wanted to give some money to his teacher for this child.  I said ok bud, what do you want to give?  Mind you he’s been saving for months and he’s accumulated about $90 at this point.  He looked at me and said “this”.  In his hand was a 10 dollar bill.  I smiled and said are you sure pal?  How about 2-3 dollars?  He said no.  I said “how about 5 dollars?”  No again.  He said he wanted to contribute (tithe) $10.00 because we have lots of things that he doesn’t.  For him, that was more than 10% of what he had saved over months.  It really made me think about things.  We send Aidan to private school but on top of that, I can’t say we tithe 10%.  Of course there are many other circumstances including our medical situation – but to see a child unselfishly give $10 to another child who he doesn’t know – only that he is in need was amazing and it really made me feel good.  He never once changed his mind nor regretted his decision afterward.

Aidan is a real inspiration…

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In the United States, today of course is the anniversary of the worst terrorist attack in our history.  I first want to send out a tribute to those who lost their lives, family members who lost their loved ones and the courageous fire fighters and other civil servants who gave everything to try and save everyone they possible could.

We always imagine that we would be all right if a big crisis arose; but the big crisis will only reveal the stuff we are made of, it will not put anything into us. “If God gives the call, of course I will rise to the occasion.” You will not unless you have risen to the occasion in the workshop, unless you have been the real thing before a crisis. If you are not doing the thing that lies nearest, because God has engineered it; when the crisis comes instead of being revealed as fit, you will be revealed as unfit. Crises always reveals character.

I have mentioned many times how difficult, too, it is for all of us to have a brain tumor diagnosis.  We all ask why?  “Why is this happening to me, us, our family?”  It’s difficult to answer this question.  Perhaps it will never be answered.  For me as a believer, I know that I have a purpose in life and always have.  My purpose has just taken a turn post-diagnosis.  Not only does this build endurance, but that endurance and the way I approach this, in every way, is in plain view of my children.  I want them all to see that no matter what lies ahead, big or small, you can still face it.  I take steps backwards – we all do, but I’m certainly not curling up in a dark room without a window and shutting down.  What kind of role model is that?  It demonstrates how easily you can be defeated and as they get older they will remember that.  Rather, facing trials are a fact of life.  Without trials in our lives, even of this magnitude, we have a purpose.  We have the opportunity to share our testimony with others.

I’m not wanting to be an inspiration.  For me, it’s not about that.  It’s about my family.  And, one purpose I have found is helping people who are also afflicted with this disease.  I have received so many emails from people who just don’t know where to start.  I remember feeling that way – life changing on a dime.  Doctors telling you to do this and that.  The clock is ticking.  You don’t have time for this or that.  Well, I followed the path that I was placed upon.  If something goes in a direction I’m not happy with, I will adjust.  Do I have a choice?  No – adapt and formulate a new strategy and know that things are exactly as they should be.  Change the things I can control and accept those things I cannot change.

9/11 was a trial of an enourmous magnitude that affected hundreds of thousands of people.  Lots of healing was necessary.  The healing may never end.  However, they are all an example to us.

Finally, check this out – it will leave you amazed:

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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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Over the past several years, I’ve been in touch with a countless number of survivors, caregivers, friends and family who have had prayer requests.  I wanted to provide an area here where you could make  prayer requests.  There is also a tab at the top of the site.  It’s set up as a running “comments” section. 

Regards,

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Isiah 40:28-31   ²⁸ Have you never heard or understood?  Don’t you know that the Lord is the everlasting God, the Creator of all the earth?  He never grows faint or weary. No one can measure the depths of his understanding.  ²⁹ He gives power to those who are tired and worn out; he offers strength to the weak.  ³⁰ Even youths will become exhausted, and young men will give up.  ³¹ But those who wait on the LORD will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint.

Amen

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Just a quick post – I am in a much better place today.  I woke up during the night looking forward to work!  And, I do know that God is in the middle of this.  I appreciate the comments and emails very much.  I do know it’s normal and human to feel this way.  I screamed in the car after church on Sunday!  It actually felt good.  But, today I feel better.  It felt good to put on a suit and tie, dress shoes and head into my office – a great prank someone set up upon my arrival, etc. 

I have two appointments today – one with my neurologist to discuss my medication levels going back to the issue with Lamictal and the vertigo incident and the other with my neuro-oncologist to discuss to possibility of undergoing an Avastin infusion between now and when I start the vaccine which should be in the next week to two weeks.  However, this could be prudent given the wait time so that is our topic.

Again, thanks for all of the support.  It’s much appreciated…

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This last Sunday we were so happy to have Nick Vujicic at Bayside Church in Granite Bay, California.  For those of you who don’t know his story, I posted about Nick back in April and you should check it out.  Briefly, Nick was born without arms and legs – a quadriplegic.  He of course was ridiculed as a child and asked many questions – why are you the this way and he didn’t know.  He was asked why he didn’t know and he’d respond “I don’t know”.  No one knew.  It just was.  Fast forward and instead of living a life of depression and giving up, he has taken the opportunity to find God, realize His plan was to use him and his testimony as an example for others and to inspire people around the world that regardless of your circumstances, God will take you through anything and what matters is what is on the inside.  His web site is amazing.  He has DVDs and other materials that are inspiring.  I had a chance to briefly meet him afterwards and tell him a bit about my my situation.  He identified as he said during his message – why was this happening to him?  Why did God choose to do this to him?  If God can do anything, give me arms and legs!  He said he prayed about this over and over until he accepted this as his circumstance.  He still prays but he also realizes that life goes on.  I told him that I was in the same place, just a different situation.What a great guy.  Check out his web site.  He is truly inspiring.  He has traveled the world over and will soon be on Oprah.  Cheers

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