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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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 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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I’m back on track this week after the great MRI I had showing low or no bloodflow in and around the tumor as well as some shrinkage.  I’ll have appointments on Wednesday to resume Avastin infusions every other week.  The avastin really agrees with me well so I typically don’t have any problems.

An area I have been working on lately is my gratitude list.  It’s condensed – there are so many items but I have gone over this multiple times on my own and with my son, Aidan.  Simple things – a house to live in, food on the table, cars to drive, clothes to wear – private school for Aidan.  Some of these items we just take for granted but when you step back and look at the world, many of these are luxuries.  I can recall when we attended Saddleback Church in Southern California and Rick Warren would say that if you have a bank account, food in the refrigerator and a roof over your head, you are wealthier than 95% of the world’s population.  Hard to believe hut true.  But many people just cruise through with this luxuries in place and don’t realize how fortunate they are.  My son, only 7, is learning this.

I pray for all of the people out there who are walking through the journey.  I have a friend in Wisconsin that I spoke to today and he has a recurrence.  A small area of enhancement but he’s done well.  I believe he will continue to do well.  To Daphne and her husband – Robin, Stacey – many others.  Keep your heads up and have faith.  A lot of immediate concerns and needs and challenges.

I hope everyone is doing well.  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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In a word, WOW.  If you’ve been reading my blog for some time, you know that we’ve had our share of not so positve news over the past few years.  We’ve learned to live each day (and are still learning) in the face of this disease.  However, this scan shows that the power of prayer, advances in experimental treatments and the tenacity of researchers, doctors and others in the medical field can yield results.

 I will cut to the chase first.  Here is a shot of what was on the monitor in clinic when we talked. 

From left to right, we have the March 30th scan (2 weeks post Gamma Knife), the May 7th scan and then Monday’s scan, July 20th.  Look at all of the enhancement in the first and second scans.  The second, however, does show some evidence that some cells are dying in the center of the tumor.  Monday’s scan, however, is amazing.  No edema, no mass effect, enhancement has significantly decreased and the profusion portion of the test which I will get to is equally telling.  Needless to say, I’m VERY pleased with this result.  We have not had a report showing a decrease at all since this started – only stable or further enhancement.  What we have done here is hammered this tumor with an army.  There is nothing more satisfying in this setting than to see this tumor get pummeled!

Now for some additional details:

Again, March, May then Monday’s scan.  What a blessing.  This tumor, a grade 4 GBM is dying off at this point in time.  That is the situation TODAY – but see my previous post.  Let’s stay grounded here.

Finally – a test that is very telling is called a Profusion Test.  In basic terms, it shows the blood flow in and out of a tumor.  It looks like a heat map.  High blood flow is shown by yellow/orange and red colors – the closer to red the higher the blood flow.  The more blood flow a tumor receives, the more it can grow.  Tumors depend on high blood flow.  If the blood flow is low or cut off, this can help kill a tumor.  Many chemotherapies for primary brain tumors focus on cutting off the blood supply.    The vaccine as you’ve attacks the malignant cells and kills them.

Check out the profusion image:

The circle on the left side surrounds my GBM.  Take note of the color and the legend on the left.  The profusion test shows DARK blue in the area of the tumor.  Another sign that my treatment is effective.

Finally, I decided this time I would just put the report up here so a) readers could see what an MRI report looks like if you haven’t seen one before and b) it’s easier to lay it out rather than repeat everything.  I just blocked out personal info.  What you should pay attention to is the “Findings” and particularly the “IMPRESSION” portion of the report.

It may be a little hard to read so my apoligies.  In summary this is great.  There is also no evidence of any grade 4 cells moving into any other areas of my brain.  I can’t pray or ask for anything better than this.  And, as always, I’m prepared for whatever comes my way.  It’s about today and I do the best I can to stay here.  I slip up – but TODAY is a good day and I have to thank God for this gift of healing.

 I will be taking 2 weeks off from Avastin.  I have been taking Avastin alone along with Thalamid.  I failed Avastin in the past – it just kept it stable but I had a recurrence in February that led to the vaccine and gamma knife in March.  I also failed Avastin + CPT-11.  Again, stability but no real progress.  I then started vaccine therapy (DCVax).  I believe these results are / can be attributed to DCVax.  I am also going to back off of Thalamid.  It makes me very tired and “loopy”.  It’s a slight risk but the next scan will tells us whether it’s been any factor at all in my treatment.  At the next scan we will have more info.  I had another series of vaccine shots yesterday so I will keep moving on.

I want to thank everyone who is praying.  This blog is my way of giving back and I can’t thank everyone enough for your continued prayers.  I’ve said that before and I hope everyone realizes that by praying for each other and creating a community of survivors, caregivers and friends who have this in common, we can find some sense of peace in sharing our stories.

I continue to urge you to use the comments section of posts to relate your experiences for everyone to see/read.  It’s helpful for everyone.

More to come….

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How many times do we focus on the future and worry about the future.  As a brain tumor survivor, I struggle with this all the time.  I know many other survivors do.  Caregivers and family members alike have the same problem.  Much of this is human nature.  A great example is when an MRI scan is approaching.  It’s nerve wracking!  It’s difficult not to look at that date on the calendar and start wondering about the outcome of the scan.  Starting a new therapy – chemo.  How do you cope?  Seeking out people who have gone through it.  How will I do this?  Surgeries?  For me, my tumor is on the motor strip.  I was told I wouldn’t walk again.  I walk.  The goal, however, is not to catapult myself into tomorrow – nor is it to dwell on yesterday.  It’s staying in TODAY.  The moment.  The power of today.  I can’t change yesterday nor can I change what will happen tomorrow.  Yes, I can learn as much as possible about treatments but when I move into worry, anxiety and other negative thinking that is not helpful then I need to adjust and be present.

Let’s face it, whether you have a brain tumor or any other problem in life, all any of us have is today.  I can second guess what’s happened in the past but it’s gone and done.  I can also worry about the future but all that will accomplish is taking me out of the moment – I’m not present for my wife and children, my friends, God – even myself.

Steven Curtis Chapman wrote an amazing song called “The Miracle of the Moment”.  It’s worth placing the first two verses and chorus here in this post:

—–

It’s time for letting go
All of our “if onlies”
Cause we don’t have a time machine

And even if we did
Would we really want to use it
Would we really want to go change everything

Cause we are who and where and what we are for now
And this is the only moment we can do anything about

So breathe it in and breathe it out
And listen to your heartbeat
There’s a wonder in the here and now
It’s right there in front of you
And I don’t want you to miss the miracle of the moment

There’s only One who knows
What’s really out there waiting
And all the moments yet to be
And all we need to know
Is He’s out there waiting
To Him the future’s history

And He has given us a treasure called right now
And this is the only moment we can do anything about

So breathe it in and breathe it out
And listen to your heartbeat
There’s a wonder in the here and now
It’s right there in front of you
And I don’t want you to miss the miracle of the moment

—–

Pretty powerful, relevant and so on point.  Should’ve.  Could’ve.  Would’ve.  How unproductive but I find myself doing it.  And I pray.  The other question I ask myself is “Is this helpful?”  If it isn’t, I stop.  Sometimes it isn’t easy.  Having a relationship with God certainly helps – I pray for His will for me.  He’s the author of life.  He knows where this is going.  And as this song describes, it is about letting go – not just the “if onlies” but everything.  Living freely.  Living for today and sometimes, when the road is rough, living for the moment – the miracle of the moment.

I pray that we all can take life as it comes and not worry so much about our future.  It will play out as God has planned it to be.  If you are not a believer, that’s ok too.  Staying in today is for you, too.  I want to be there.  My youngest son Keegan turns 2 on Monday.  What if I’m all worried about my upcoming MRI?  I’m not going to allow that to happen.  Today is Friday.  I’m enjoying Friday.  I hope you are enjoying / have enjoyed Friday as well.

Peace

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