Blogging in B Minor

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. 

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 don’t have a lot of time to write right now but we had a great time this weekend on her trip with Aidan. Here is a good series of pictures that is representative of what we experienced.   It was a great memory for us.  Our cabin was perched on a hill so my legs were worked hard.  PT this morning.

We hope you enjoy the pics.  Added a few more.

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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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I’ve now completed my second week of using VP-16.  I’m now starting to feel the cumulative effects of this chemotherapy. It’s somewhat like temodar but for some reason the side effects are felt more consistently.  With temodar I would feel nauseous in the morning but it would subside by about 8 AM. With VP 16, I’m beginning to feel nauseous most of the day. My routine has been the same as it was with temodar but I am folding in more zofran to address the nausea.  I wake up just not feeling good but it goes on into the afternoon.

I’ve always stated that this blog is real meaning it’s not candy-coated. I do my best to share with you as honestly as I can - the good and the bad. The last two days have not been so good for me. I’ve been feeling sick, fatigued and a a bit down primarily because of my loss of function in my left arm. This morning in particular was a little bit of a breaking point for me. For the first time I was not able to reach my right under arm with my left hand to bathe.  I wasn’t feeling sorry for myself. I know there is a lot more to come that will be even more difficult  It was more about the physical limitations I have now and the dependency on others compared to how I used to be and it was so incredibly frustrating to me. I hit the shower wall a few times to be quite honest and because of my frame of mind started wondering what’s next.  My left shoulder is just very weak and it can’t support the weight of my arm. The tendons from my scapula to my shoulder are separating and most of the pain is felt in the AM after sleeping overnight.  I’ve been trying to use a towel lying on my left side to support my arm and shoulder arent pulling as much but it doesn’t seem to help much.   The result is if I bend over during the day to pick something up I hear pops and cracks in my left shoulder and it further stretches out that tendon.  I’m stooping as best I can but it’s just a problem I have to work as with the others.

If anyone has experience with shoulder injuries and support systems for sleeping at night I would greatly appreciate any input you have!  I think I’ll have some good information from PT tomorrow afternoon.

As I well know, this type of thinking – getting caught up in the problem – accomplishes nothing but at the same time I think it’s important to walk through whatever you’re going to feel. The reality is the same. I’m only human and it is frustrating.

It took me a while to get back into today which is where I belong and what I preach all the time. This certainly addresses the future and anything that is to come. That’s all part of God’s plan. What I find difficult is when I’m going through something like this, I’m frustrated and it IS happening today.  There’s no other way than prayer and turning it over and I’ve done that over the last three hours. Enough said

With regard to IV chemo, I will be at the infusion center tomorrow for avastin treatment.   I’ve been doing this every other week for quite a long while. On February 1, I will have another MRI. At that point will see where we are and I know that we will be guided in the right correction.

Lastly, I have upgraded the blog’s core software to the latest version. What this means for everyone else as I will be able to build in new functionality that is really exciting. Already I have put in a mobile edition of the blog that you can access with an iPhone, Blackberry and most of the major smart phones. Basically it’s a stand down version of the blog that allows you to see recent posts, comments and allows you to respond to posts on the go.  For me, upgrading the blog opens a lot of possibilities in terms of some projects I’d like to tackle when I’m not working. After all I I still have that brainy side that needs to be exercised

I will provide updates as usual. Friday is my last day of work.

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After spending a lot of time looking at all of the various aspects of leaving my career, whether temporarily or permanently, we have made a decision that it’s time to walk away — at least for now.  At this point, the notion of returning doesn’t seem like an option.

When I look at what’s really important in life it boils down to several things, the core of which are God and my family, it’s a pretty simple decision. It was long ago that I had spreadsheets put together that estimated the impact of not working. We pored over information and did the due diligence required to understand how this would affect us back in 2007 (of course you all know by now how freaking organized I am!). Now that I’m using dictation software it is a lot easier to post to my blog but my deficits have increased. The essence of my decision is balancing my condition against how long I work. 

Basically, there is no way I’m going to grind this out and have no energy left to spend quality time with my family.  There are trips to take, memories to cherish and a lot more to do. I know that God is not done with me yet but no one sits at the end of their life and wishes that they would’ve worked more (as a good friend of mine put it).  It’s a hard concept to absorb if you aren’t in my position.  I never thought this way before I was faced with this but I do now.  It takes me an additional 30 to 45 minutes in the morning to get ready, driving to work with a bad left arm is concerning and not fun and generally it all makes sense.  I’m just at a jumping off point.

Don’t get me wrong. It is bittersweet. I have been very blessed in that I love what I do and gain a lot of satisfaction through my job. I wake up every morning looking forward to going to work and thrive in that environment but as much as I love it I have to walk away. Some of the guys that have relocated to work for me I have worked with for 20 years. No, it’s not that I won’t see them anymore but I just won’t be working with them on a professional level and that is what is bittersweet. Everyone that I work with.  My friends and I will still be having plenty of football parties and other get-togethers though!  Driving an organization, creating strategies, managing large projects, the politics of it all (yes, even the politics!) – I’ll miss it but I’m 110% sure that this is the right decision. I’m actually looking forward to this. I can now focus on my health and most importantly my family and treatment. At the core of all this is of course our relationship with God.

If there is one thing I’ve learned through all of this it’s that we all have trials in life. Call them problems if you’d like. If you aren’t in the middle of a problem now you are than other one to solve soon or you just came out of the problem.  They build endurance and character.   No one knows why trials of this magnitude occur. Why do young children have cancer? I don’t think any of us can answer those questions but what I do know is that the next life in eternity is a great place. There is no sorrow or grief. No worries but getting to a perfect place requires living in an imperfect place that is essentially a long lesson in humlity. I don’t know about you, but humility is something that is a lifelong piece of work!

So January 31 it is! We are now brainstorming on things we want to do sooner as opposed to later. We’d like to take some trips with the kids but certainly some without.

In terms of treatment I started  VP-16. I’m using this in conjunction with all of the other treatments that I’ve mentioned including the experimental vaccine that I started last April. Because the last MRIs showed increased enhancement we have collapsed the window of time between each MRI to 30 days from 60 days. I’ll be due for another MRI at the beginning of February and will see where we sit. I want to stay with anyone drugs for too long.  Additionally, I want to start pulling the vaccine off the shelf and use it.  The hope is that we can stabilize the growth that has taken place which at this point is small but I’ve become symptomatic, the most conspicuous of which is in my left arm.

Lastly, one request from all the readers. Because I’m having to dictate now due to my inability to type fast it’s increasingly difficult to respond to e-mails that come in rather than comments that are posted to the blog and attached to each post. Therefore, please know that I appreciate every e-mail that comes in and will certainly try to respond but well wishes, prayers and additional information that all of you wonderful people have been supporting me with are much easier to manage if they can be posted to the blog and the comments area. I hope this doesn’t sound selfish because I am so blessed to have so many who care and support me it’s just that I don’t like to receive such supportive e-mails and not respond. If they are posted in comments that are attached to a post in the blog I can respond to all of them at once in the form of a comment attached to the end.

I will provide more information once I have some changes in treatment.

God bless,

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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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I hope that everyone in the US had a great Thanksgiving holiday.  For those of you that decided to brave “Black Friday”, I’m sorry.  I was in bed until 8:30am!  Plenty of deals and plenty of time.  It’s amazing to me to see people in front of Best Buy with coolers and tents, yes tents, at 4pm on Wednesday so they could pick up material possessions for a big price break.  My own perspective is that this obviously means that on Thanksgiving Day, these folks are spending time away from their families.  Of course it’s a personal decision but it’s hard to understand sleeping in a tent on concrete for two nights over a family holiday to buy a playstation 3 or whatever it might be!

I’d like to thank everyone who has supported me over the past three years as I’ve walked through this.  I could never have endured this without God and all of the support of family, friends and all of the brain tumor survivors I have met along the way.  Support through surgeries, chemo, radiation, physical therapy from a wheel chair to walking again, gamma knife, experimental therapy using DCVax, focal seizures throughout and other challenges has been invaluable  In short, this blog has been a blessing for me.  I know it has helped many based on all of the emails I have received – and if it only helped one person I’d be more than satisfied.  However, what some of you may not realize is how instrumental this has been in my own journey.

Writing is a great way to think things through, release stress and helps one cope.  Originally, this was a place to distribute my music.  Now it’s more about my journey.  It was then meant to update friends and family on my condition and store my research.  Then I found that sharing my experience and my own testimony also gives me a sense of purpose in the middle of a storm.  Traffic built and now it’s a popular site for primary brain tumor info and assistance based on one person’s view. 

Today, it’s not such of a storm every day and that is a result of, in large part, everyone I have met along the way and many of those that I have met have come through my blog.  Your responses to my posts, emails of encouragement or emails just telling me that you’ve found research and testimony that has really helped you on a given day is very uplifting to me.  So to all of you, I give thanks for support, emails, phone calls, comments to my posts and help you are giving to others. 

As I mentioned in my last post, I’m taking video now with a Flip video.  So easy to use.  Here is a clip from this week.  Keegan received one of those wind-up toys – it’s a caterpillar.  This is one of those clips of a child that makes being a parent fun!   

This is called “Good Night Bug”.  It’s short so keep watching. 

I had a treatment using DCVax on Wednesday.  I will update over the weekend.  We are changing the protocol and using a cream called Aldera cream over the injection site.  I’ll provide details later.

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We purchased a Flip Video HD – they are so great.  HD quality, fits in your hand like a cell phone and just hooks up to the pc via USB.

With our new camera, I was luckily able to catch a secret rehearsal taking place – Keegan Miller preparing for his would tour with Elmo.  Check it out:

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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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Many of you may be wondering why I’ve been MIA for the last few weeks.  Well, I’ve been in the hospital.  What began as a serious flu for several days resulted in a week’s long hospital stay with my white blood cell count plunging to a low of 0.8 – considered without a doubt neutropenic.  As a point of reference, the normal range is 4.0 to 12.0.  I was isolated and a good 25 bags of IV antibiotics were pumped into my system via IV.  It was NOT fun!  It’s all flu related.  The flu this year is harsh to say the least.  I’m taking a bit more time off so my body can catch up but wanted to put up a post so everyone isn’t in the dark.  I have others that will stand in in the future if necessary if something comes up and time gets away too much.

I’m planning to get back to normal life next week if the counts are there.  Sitting around is not fun! 

More to come when I have more energy… 

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