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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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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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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I’ve been a bit out of touch but for good reason.  I’ve been extremely busy, both for pleasure and tending to medical responsibilities. 

It was a very busy week last week.  On Wednesday, I had lab work to complete in prep for Avastin on Thursday but have had vision issues due to meds.  I had a co-worker take me.  I have to lower a dose of one med I believe.  Today isn’t so bad.  I’ll be discussing that today and likely lower this dose starting tonight.  I continued with physical therapy in the afternoon.  My left side (primarily my left leg) is weak so I’m continuing to work on this.  I was far too tired to work out so I opted to receive functional electrical stiumaltion which sends electrical charges into the muscle in my lower leg and down into the arch of foot – an area I cannot move at this point. 

Also on Wedneday, Aidan and I had a 7pm event at the church.  Aidan spent the previous week called Breakaway at the church.  Waterslides, arts and crafts, etc.  This was an opportunity for the kids to show parents what they did for the week.  It was great!

On Thursday, I had an Avastin infusion in the afternoon preceeded by an appointment with my oncologist.  I had another appointment after that at 4pm.  Talk about being whipped!  It doesn’t sound like much to most people but those of you who deal with living life with a GBM can relate.  I’m still working and managing all of this plus of course trying to just lead a normal life but it’s at times.  By the end of most days, I’m pretty tired.

I hope all of you in the States had a great holiday.  We had a great time although I still struggle with seizures from time to time.  I had several this weekend but hadn’t had any for a week or so which is still much better than the every other day roadblocks I ran into in the past.  I’m still on the upward climb to the 6 month peak of the post-gamma knife bell curve related to seizure activity.  It is not unexpected for the seizure activity to increase in frequency and severity so keeping them at bay the way we have is a victory in my book.

So what is next?

• Avastin Infusion on July 16th
• MRI to be scheduled prior to July 22nd
• DCVax on July 22nd

However, as I’ve mentioned so many times – the key for me is to stay in today as much as possible.  It’s not always easy but is something that I strive to do.  It’s all we have and is the only way to be present.  If I live in yesterday or tomorrow I’m no use to myself or anyone else.  Sure, I have be strategic with regard to my direction but I don’t have to stay there.  Likewise, the past is the past.  I can’t dwell on any past decisions.  The outcome of those decisions are done and they are exactly as they should’ve been.  I feel comfort in knowing this.  God knows where this is going and He is in control, not me – the doctors – no one.  This fact alone helps me each and every day.  I pray for His will for me and my family and although I may not understand it, I know that there is a higher purpose here.  Perhaps it is simply my testimony and it will help others.

I have told this story before but it’s worth repeating.  When I went through the “why me / why us” stage in the beginning of my diagnosis, there was a day that changed everything for me.  I was in the cancer center one day waiting for the elevator.  There was a little boy standing next to me with his mother waiting too.  The boy was about the same age as my son, Aidan.  I looked down at him and smiled – he smiled back with a big smile – joy in his eyes.  The absence of eye brows, eye lashes and hair made it clear that he had undergone significant chemotherapy and was battling cancer at the age of 5 or 6.  But how could a boy this age still be happy?  And how could life shuffle the deck and deal this card to him?  He hasn’t experienced anything in his life yet.  I thought to myself, “how many seasons this boy has in front of him that he may never live to see.  This is fair.  Why him?”  Well, needless to say, when applying this to my own, selfish thoughts of “why me” it changed my perspective.  “Why not me?” I thought.  What makes me immune to this?  Nothing.  Why are entire families taken out in car accidents?  Why do bad things happen to good people?  It’s hard to understand but there is a higher purpose.  It’s hard to wrap your head around and it still is for me, however, it’s easier for me to just turn it all over to God – He is in control, not me.  And, I do as much as I can to keep myself in TODAY.

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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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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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My MRI was on Tuesday and I had an appointment yesterday with my Neuro-oncologist.  Overall the news was good.  The size of the tumor has not changed which is great news, again.  There has been an increase in what is called T1 shortening and mild enhancement associated with the lesion.  In layman’s terms, this means the blood-brain barrier of the cell walls have broken down somewhat – it’s a vascular change in the tumor is all.  A change – it’s irritated for some reason.  The cause?  It could be from all of the treatment over the last year.  It’s been hit with a heavy course of radiation with concurrent chemotherapy over 5 weeks.  The was preceeded by surgery which resulted in a biopsy and finally I completed 8 1/2 rounds of chemotherapy.  So this is really my first post-treatment scan.  The report indicates that this “could” be related to post-treatment changes and of course recommends continued follow-up imaging.  We are doing that anyway.

This is the first scan that they haven’t used the term stability but my doctors also didn’t say this is anything to cause major concerns – we just need to keep watching it.  And they all know me very well!  I’m the straight shooter.  Reality is all I want to hear so no holding back ever happens here. 

I’ve said it before and I will say it all the way down the road.  It’s all in God’s hands here.  We are all human and I have my own times when I can sit and reflect on what is happening in my life, our lives – think about my two kids, my wife and what all of this means to us.  But in the end, we all know that a lot of analysis and worrying isn’t very helpful to our daily lives.  So we are human – there is not some kind of power we can employ to feel “ok” about everything all the time, but you accept it – you accept your circumstances because you have to and I have learned to live with it – and so has Rachael but around the time of my scans we feel vulnerable and it’s hard not to think about it because it’s put front and center.

In a week Aidan starts soccer – every Wednesday and Friday we’ll be going to practice from 6:30 to 7:30pm.  That will be a lot of fun for us – a great Father/Son time.  He loves to get out there and kick the ball, run around and just have a great time and I think he really loves to kick the ball further than his dad.  Games every Saturday until November.  He is a competitive little boy – we’ll see how this goes but I know it will be a lot of fun – probably more for me!

That’s it for now… 

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As luck (or a hashed immune system!) would have it, I ended up with a cold.  Who cares at this point – it’s par for the course and I’m working on bringing myself back out of this over time.  It will take about 6 months and I will take antibiotics the entire time which will help me.  Now I’m not sure if this was caused by me, but my son woke up on Wednesday morning with a terrible cold – running a temperature and the whole nine yards.  I’m watching out from all sides!  He’s worse than I am for some odd reason.  I feel bad for him – he’s been in camp all week and had to miss yesterday and today.  I’m hoping he can finish out tomorrow at least.

Also on Wednesday I had some strange sensations in my left bicep – just slight contractions on and off in the afternoon.  They started again in the evening and at that point I knew it was my long lost friend – focal seizures.  So, after a period of time I became annoyed with it (I was trying to watch Dateline or something) and took an additional 200mg of Lamictil and they said goodbye.  For those of you that can’t envision this – this time it was like having a strong twitch in an area of your body – you try to turn it off but you can’t.  You see, a focal seizure can be as simple as that or a marching numbness in your hand or arm.  So many people have this classic vision of a seizure – someone flopping around on the ground.  That’s just not what they are all about.  There are a lot of different types.  I spoke to my neurologist about it – there’s nothing you can read into this.  It means nothing.  People can have clean scans for years and have seizures throughout – I actually never have them since 7 months ago or so.  People can have tumor growth and no seizure activity.  It’s just not an indicator of anything.  So you deal with it which is why when it happened I took a pill, talked to my wife about it and went about my business (back to the Dateline thriller!). 

You just can’t get all caught up in this stuff – you have to have faith in God and turn it all over to Him – period.  Could you imagine if I took every issue – a seizure, an upcoming MRI scan (I have one next Tuesday), some weakness I feel on the left side of my body, statistical survival rates, etc. and worried about them and placed it all on my shoulders?  I’d be an anxiety-ridden mess!  I remember when I came back to work and had 2 weeks of radiation left.  I was worried about how I’d get through that and still work but I turned it over to God.  And?  And I worked, left at lunch and went to the Institute and had radiation treatments, came back to work and finished my day – and I was on chemotherapy at the same time.  I got through it but not because of me – I had some help there.  The task ahead of you is never greater than the power behind you, right?  It’s true.

I have my 60-day MRI check on Tuesday – see my Neuro-Oncologist on Wednesday to discuss and then I’ll be done for a few months.  Things are good! 

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