Blogging in B Minor

On a lighter note, Keegan and I snuck into a State Dinner a few nights ago. He told me that between “Monkey” and “Lion” he’d have no problem lobbying against some of the hard-core special interests represented in the room. He was right. Monkey did a good job with healthcare and we should be seeing some changes that the people want.

Here we are:

Keegan and Dad at State Dinner

Sorry I haven’t posted for awhile! The last two weeks of our lives have just been extremely busy and heavy. I’m having a hard time getting back with close friends, let alone emailing, etc. I had a lunch yesterday with a very good friend of mine, Jake Larson, and I really just forced myself (Jake, great to see you – it was a chemo morning!) because we had been playing phone tag for 3 weeks.

My life has become much more focused on treatment since I started declining more – mainly the progressive pain, weakness and loss of use of my left left side. This is an area of a cancer survivor’s life that needs constant adjustment I have learned. How to balance being in appts all the time vs time for me, my kids and family, etc. Right now I’ve had so much treatment and appts it’s out of whack.

Tomorrow I will have an Avastin infusion and then I’m meeting a neurologist about the boyox injections in my arm/shoulder. I also started round 2 (volume 2 since I did this before for a year?!) of Temodar on Monday night.

More later,

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My brother Shawn came into town and has been here over the past 5 days.  It was so good to see him.  As planned, now that I’m off work, I’m trying to spend a lot more time with family and friends.  I was really sad to see him go but we will be having more visits.  I wish we lived closer.   

Here are a few great pics of Napa. 

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Medical

I have an MRI this Thursday.  I’ll begin to see some Gamma Knife results (albeit difficult to see because of swelling) and we’ll be checking on the first tumor resection site and anything new of course.  I’m continuing to have a CBC done each week at the lab just to make sure my counts are good.

I’m also talking with my neuro-oncologist about starting up the vaccine in about 2 weeks.  I have 3 doses left (a dose consists of one injection into each arm) and we’ll use them in a booster fashion – every 2 weeks.  Pulling out the stops on the rest of the DCVax.   Avastin and VP-16 are the other two players in the plan along with valcyte.  Yeah!  How’s that for a brain tumor cocktail….post-gamma knife!  The positive is I’m more used to VP-16 so side effects are spread apart.  We’ll settle on everything after the MRI.

I’ll post info about my MRI later this week. 

I’m feeling at peace with things.  Getting away helps but a lot of prayer lately has helped tremendously. I was meditating on Proverbs 23:7 today.   ”For as he thinks in his heart, so is he (Proverbs 23:7, NK).  I sometimes read the devotionals on Joel O’Steen’s site and this piece asked the question, “do you ever stop to think about what you’re thinking about?”  The Bible tells us that what happens on the inside of us - our thoughts, attitudes, and motives are more important than what happens on the outside in our actions.  Jeremiah 29 tells us that His thoughts are for our good. His thoughts are for our peace. His thoughts are for our victory! 

The entire goal of course is to align our thoughts with His thoughts by meditating on His word. 

Cheers,

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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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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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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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I have posted for a few days as I’ve been doing pretty well!  I’m still trying to figure out the right balance of meds to manage my seizures – I had one on Wednesday – same type in terms of serverity, duration, etc. but we’ll need to find another combo of meds.  They don’t really concern me much.  If I were to be driving, I do have a warning so I feel ok but that is the only area that concerns me.  I found myself alone the other day when I experienced the seizure which is atypical.  I think it took me a bit longer to break out of it being alone but other than that things were ok. 

Something is definitely going right because my energy level is up and I’m feeling a lot better.  As a result, I’ve been busy just enjoying a productive day at work and coming home, playing with the kids and getting some respite from everything – the gamma knife, chemo and everything that’s been going on as of late.  I have a few projects I’ve started and am slowly getting back into the swings of things in different ways that have been difficult up until now.  Perhaps it’s the vaccine – we don’t know but I will have an MRI in a few weeks or so and we’ll really see what is going on.

That’s all for now…

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Update

I continue to become more symptomatic which is actually good believe it or not! I had a focal seizure yesterday afternoon and although not as long as the seizure on Thursday, it was fairly intense.  I was able to work myself out of this in 5 mins and used an Ativan to bring it down.  The reason, however, it’s helpful is it’s confirming the brain mapping we have performed.  The seizures have been confined to my left leg and have not extended up into my upper body.  The tumor growth and area that has been mapped via fMRI and brain lab imaging indicates that it’s right on top of the area of the motor cortex that controls that very function – left leg.  So, it’s actually easier for the neurosurgical team and as a patient to know that we are going into a surgery a) solving a problem that has started and isn’t going away and b) having solid, symptomatic confirmation of the mapping. 

On to other news….I was up early today – no particular reason, I haven’t been worried about anything.  I think the Ativan just made me sleep a lot yesterday so I’ve had enough.

Tumor Vaccines

As for the DCVax vaccine, my team is working so hard on this.  We have some costs on some of this.  Some trials are not exactly “free”.  So far we understand some of the costs but not all.  We also need to understand a little bit more about the research protocol but my neurosurgeon, Dr. Edie Zusman at the Sutter Neuroscience Institute has been amazing in doing everything in her power to maximize my length of life. If you are ever faced with a primary brain tumor, she is who you want in your corner.  She has the fight and tenacity that I need in my situation and her entire team has an arsenal that they are bringing to bear.  She has spent hours of her time so far on this vaccine issue and will be spending a lot time this weekend dealing with it.  Monday will be critical as we will be getting final details.  I can’t say enough about the Neurosurgical team at Sutter though.  They are a brain tumor center and a vast majority have been trained at UCSF, Stanford and other elite institutions.  They have gamma knife, fMRI capabilities and so much that you find at any other top shelf brain tumor center ala Duke, MD Anderson, UCSF, etc.    

That’s it for now.  Today is a nice family day.  Rachael, Aidan, Keegan and I are going out at some point for just a family picnic.  I wanted to play some soccer with Aidan – we’ll see how that goes.  May just push it a bit – who cares.    Bring a kite.  Note sure.  My parents got in last night so we’ll see them today as well.  Tomorrow church and I don’t know after that.  Just going to focus on today…

God bless, 

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