Blogging in B Minor

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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Over the next week or so I will be performing an upgrade on the blog. If the blog is inaccessible, seems to lose some of its features or is sluggish just know that it’s because there is work being done behind the scenes. I am also pondering changing the entire look and feel of the blog and making it much simpler. Making it more simplistic I’ll allow me to have an easier time with it moving forward which I think is going to be a better situation for me.

I wanted all of you know.

God bless

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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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Every once in a while I take a look at where my blog visitors come from.  The internet is truly amazing.  Of course the majority of readers are in the US but there are percentages of users from other areas of the world, many of which use the translator.  I have received so many emails and for me, it’s encouraging to me to know that I am at a minimum helping others to some extent.

 Here is a breakdown just in the last week:

Pretty amazing and shows all of us with brain tumors that we are not alone!

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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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Yesterday afternoon I met with my neurosurgeon. This meeting was designed to just get an opinion as to whether or not any surgical options existed to get ahead of the growth. First off I was able to confirm that the area of enhancement and the MRI is in fact tumor. Therefore I know we have to do something to address the problem. In speaking with her there is no way surgery can be performed without the result being hemiplegia. This obviously creates a huge dilemma. One of the prognosticators in terms of long-term survival is the extent of resection of the tumor. The less tumor that exists the more treatable it is in terms of chemotherapy and other treatment modalities. However, in my case I’d be dealing with a huge hit in terms of quality of life. I would be very dependent upon others, be confined to a wheelchair and likely unable to work or it least it would be difficult. Suffice it to say it’s a huge change in life. The million dollar question is how much time does this really add my life if I were to go forward with surgery versus stick with chemotherapy only. Additionally do I want my children and their last memories of me to be in a wheelchair unable to walk, play soccer, throw footballs, get around the house, etc. I really don’t know and that’s what we are discussing right now. It may happen anyway but should I roll the dice and make that happen overnight?

For those that have been following my blog, you know that I am an advocate of staying in today but when it comes to decisions like this you have to look at tomorrow and unfortunately you also have to delve into statistics to some degree. What is the success rate of chemotherapy? What is the success rate of operating on a recurrent glioblastoma in terms of longevity. All of that has to be balanced against quality-of-life. So we are praying about it, leaning on her support network and thinking all of this through. Through prayer, we are certainly hoping that we are not confronted with this situation and that in the first 30 days of chemotherapy I respond to it. The near-term strategy is to start a new chemotherapy which could be carboplatin or a new drug that I have not researched yet called VP 16. I need to speak to my neuro-oncologist more about this. In addition, I have three doses a DC VAX left. I will likely start using those. I’m also continuing to use Valcyte. After I’ve been on this cocktail of chemotherapy and other drugs for 30 days, I will have an MRI and we will see what the tumor looks like. If it’s shrinking that is great news obviously. Even if it’s status quo that’s a good result. If it continues to go in the wrong direction then we start getting down to the difficult decision. I will likely continue to chemotherapy for an additional 30 days after that then we will take another MRI. If I continue to respond to the chemotherapy and I will just continue that regimen, thus avoiding the decision regarding surgery. If it’s moving in the wrong direction then I have a big decision. We’ll cross that bridge if we get there.

In the end, it is about living in today but we have to be thoughtful about tomorrow and make sure that we are mentally and spiritually prepared for such decisions. Sometimes we can’t even imagine how we ended up in this position. It’s surreal. But we are and we have no choice but to accept or circumstances, trust in God and put 1 foot in front of the other. This is not easy at all. Again, I would be lying through my teeth if I told you this is in our worst nightmare. But we try to take it day by day, enjoy our kids, deal with the issues and live our lives. As we formulate more of our plans I will post as I can. I’m using some great dictation software now so I can basically just speak in the text is just laid out on the screen for me with very little corrections to make.

I humbly ask for prayer at this time. This is probably one of the most difficult periods for us. Yes, we’ve been through a lot but if it weren’t for the endurance we have developed as we’ve gone through this trial this would be like a ton of bricks falling on us but we have persevered and done the best we can and we will continue to do so.

Thanks again for all the support and all the prayers. I also appreciate all the e-mails I receive from so many people. They are so encouraging and mean a lot.

Here is my MRI report. What’s important to note is under impression. The observation of increasing enhancement that likely represents neoplasm is what I needed to know. Neoplasm in layman’s terms means tumor.

More soon…

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I have had a lot going on lately in the middle of the holidays regarding medical tests and treatment options. As I’ve written lately, I’ve continued to lose function in my left arm and hand.  This has been concerning to me considering that the decline has been fairly rapid meaning over the last 90 days.  Since I got out of the hospital when I was treated for the cold I had, I started back on avastin and two weeks ago Thursday I had a DC VAX injection.  I came off of Valcyte for a period of time since my blood counts were very low and I’ve started back on that as well. 

Yesterday morning I had an MRI.  This MRI showed increased enhancement around the tumor. It’s unclear at this point whether or not this is tumor growth, a stroke that has occurred, Gamma Knife continuing to kill cancer cells in the area of the motor strip which is resulting in neurological deficits or edema. Regardless, I will start on a new chemotherapy next week called carboplatin.  This is an IV-based chemo that has similar side effects as temodar.  I will continue with DC VAX, Valcyte, and now carboplatin.  Today, I am meeting with my neurosurgeon and we will discuss if there any options at all surgically. My guess is there are no options at this point but there could be later. Any surgical resection well further involved the motor strip and the likely result will be a complete loss of the left side of my body.  If that becomes necessary later in the choice when faced with this paralysis on the left side versus succumbing to this disease obviously the decision is simple.  However at this point if there are other treatment modalities that can keep the tumor at bay than that is the obvious and preferred course to take.  I will have input from neurosurgical point of view later and we will start putting the picture together.

It is somewhat like being at the beginning again. If you’ve kept up with the blog from the beginning you might recall that I had a decision to make between watching and waiting or performing surgery. After obtaining three opinions I went forward with surgery. In this instance I will likely reach out and obtain a second opinion from the University of California San Francisco. For anyone embarking on this journey I highly recommend that you do the same. It’s not a pot shot at your neurosurgeon. You’re just being your own advocate and ensuring that you’re making the most educated decision that you can.  After all if you are facing the prospect of being paralyzed, you best be as well-informed as possible. I believe I am far from a scenario however we are prepared for anything as we have been all along. We have had enough ups and downs over the last three years to know that anything can change on a dime.  Honestly, avoiding surgery is the goal and every neurosurgeon’s goal is to increase neurological function, not decrease it. That is what’s difficult about my case and other people’s cases. As is the case with many brain tumor survivors, I came from a position of being a high functioning individual.  I operated in a high functioning professional environment, lived a good life, could run, throw a ball to my son, etc. and I’m losing function (I can still hammer a soccer ball to Aidan).  Some people come from having minimal functionality because of their deficits and surgery actually improves their situation.

I will update my blog when I have more information but it may take a day or two. Typing is the challenge and I’m experimenting with some dictation software which is a huge help.

Best to all of you.

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