Blogging in B Minor

This is a little late but I was reminded of this today and meant to post it when I first read it.

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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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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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As usual it’s the last minute shopping and wrapping for Christmas.  This is a great time of year but it’s also so busy.  In addition,  I started back on treatment using avastin and and valcyte.  As you know, I had to take some time and stop chemo treatment after my bout with the flu to give my marrow time to generate white blood cells.  The week before last I had a DCVax injection and last Friday I went in for an avastin infusion since my counts are back up.  I feel a lot better now that I’m back on treatment using multiple agents.  I have an MRI scheduled for January 8th.  At that point we will be able to more info regarding the small area of enhancement that was seen on the MRI taken while I was in the hospital.  You may recall that MRI report indicated that there was a small area subacute ischemia.  Put simply, this is conjecture on the part of the neuroradiologist but it could be either a small TIA  that occurred in the hospital or it could be tumor.

I have spent time in physical therapy focusing on both my leg and my left arm.   Slow progress but getting there  The same holds true with my left leg.  So, I’m doing as much as I can at this point in time.

A friend of mine pointed me to this interview with Ben Stein on CBS Sunday morning.  The interview actually took place in 2005 with Charles Osgood.   He had some very thought-provoking things to say that I think are very true.  I’m going to  paste majority of this below.  When you think about it what he says is so true.  I won’t provide any commentary because it’s really not necessary.   It speaks for itself.

Also, I wanted to let all of you know that I really appreciate all of the e-mails and comments that you have left on the blog that have encouraged me through this setback.  Even though I can’t respond to all of you know that I really appreciate the encouragement and prayers.

Wishing you all happy holidays

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Herewith at this happy time of year,
a few confessions from my beating heart:

I have no freaking clue who Nick and Jessica are. I see them on the cover of People and Us constantly when I am buying my dog biscuits and kitty litter. I often ask the checkers at the grocery stores. They never know who Nick and Jessica are either. Who are they? Will it change my life if I know who they are and why they have broken up? Why are they so important? I don’t know who Lindsay Lohan is, either, and I do not care at all about Tom Cruise’s wife.

Am I going to be called before a Senate committee and asked if I am a subversive? Maybe, but I just have no clue who Nick and Jessica are. Is this what it means to be no longer young. It’s not so bad.

Next confession: I am a Jew, and every single one of my ancestors was Jewish. And it does not bother me even a little bit when people call those beautiful lit up, bejeweled trees Christmas trees. I don’t feel threatened. I don’t feel discriminated against. That’s what they are: Christmas trees. It doesn’t bother me a bit when people say, “Merry Christmas” to me. I don’t think they are slighting me or getting ready to put me in a ghetto. In fact, I kind of like it. It shows that we are all brothers and sisters celebrating this happy time of year. It doesn’t bother me at all that there is a manger scene on display at a key intersection near my beach house in Malibu. If people want a creche, it’s just as fine with me as is the Menorah a few hundred yards away.

I don’t like getting pushed around for being a Jew and I don’t think Christians like getting pushed around for being Christians. I think people who believe in God are sick and tired of getting pushed around, period. I have no idea where the concept came from that America is an explicitly atheist country. I can’t find it in the Constitution and I don’t like it being shoved down my throat.

Or maybe I can put it another way: where did the idea come from that we should worship Nick and Jessica and we aren’t allowed to worship God as we understand Him?

I guess that’s a sign that I’m getting old, too. But there are a lot of us who are wondering where Nick and Jessica came from and where the America we knew went to.

.

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I haven’t posted for a bit – just continuing treatment and spending time with family.  Things are good.  On the medical front, I had my bi-weekly infusion last Thursday and met with my neuro-oncologist.  I’m continuing with physical therapy every Wednesday and working hard to strengthen my left leg.  It’s still weak but working it is helping a lot.  I had a new brace made and that is also helping.  I wear the brace every other day as to not rely upon it too much. 

When talking to my neuro-oncologist, I learned that I do not have 3 years of my experimental vaccine left, only enough for 4 more “boosters” which are 16 weeks apart.  16 week intervals are a bit long for someone with a GBM.  This was a huge delta.  Turns out the initial 3 year estimate was not from Cognate, the company that actually controls and manufactures the vaccine.  Anyway, since I’m not in a trial per se, we can use it as we see fit, so if I need to tighten this up we can.  I can pull it off the shelf I can.  Again, not much I can do about it so I can’t and won’t get stuck here.  It’s up to God.

Our son Aidan is playing soccer and I’m doing some assistant coaching again.  I stumble around a bit but can still kick with the right leg if I plant my left just right.  It’s awkward but being on the field with all the kids is rewarding!  Our son is doing great – he scored his first goal of the year on Saturday.  He was thrilled!

On another topic, I went last night and saw George Winston play live.  Talk about feeling inferior as a musician!  For those that are unfamiliar, he is an amazing pianist.  I have embedded one of his pieces below called Blossom in Meadow.  It was an absolutely amazing experience seeing him live in a small venue.  We were 10 rows back stage left (looking at the stage) so his hands were in plain view.  How wonderful.

Also, over the weekend there was an equally amazing guitarist at Bayside Church, our home church.  His name is Josh Wilson.  His acoustic guitar playing using delayed effects is so unique – nothing like it.  This is his rendition of Amazing Grace.  This one you have to head to YouTube to see.

http://www.youtube.com/watch?v=kd4PBZgxCB4&feature=related

I hope you enjoy all of this and I pray that all of you are doing well.

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

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

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

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

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

So what is next?

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

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

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

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There are other vaccines being researched and developed and perhaps one day a vaccine may be the answer to prevention.  The answer of course is what so many are seeking.  Take a look at this story on MSNBC regarding a vaccine,  for melanoma when you have time – the concept is similar to DCVax but of course DCVax is not harsh as this apparently is given it has to be administered in the hospital.

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Our 2 year old son Keegan had his second set of tubes put into his ears this morning.  If any of you have ever had your children go through the tube surgery, it’s rough when they come out of it – confused, sleepy, etc.  He did fine and is at home.  We set him with an Elmo video and he was a happy boy.  We’re hoping this is the last surgery!

I have another vaccination tomorrow.  I’m so thankful that we were able to make 3 years worth of vaccine from the tumor tissue and white blood cells taken back in October and January respectively.  So far so good.

I am still struggling with seizures.  Recently they have become slightly stronger and longer in duration – at least 5 minutes and it concerns me.  I might be pushing too hard – not sure.  Actually it’s a combination of several factors.  Sometimes it’s easy to find myself wanting to tackle so much .  I’m used to making long lists and blowing through them.  I think when I let everything in – combining my profession with my medical needs – appointments, a mix of meds to keep straight and track, treatment options, and most importantly my family and time with my kids can just get to be overwhelming sometimes and I’m in that place today – at least at the moment.   I’ve spent the better part of the last week trying to sort this out with my neurologist and neuro-oncologist.

We’ve increased doses, lowered some, added a med, etc.  I’ve run into some vision issues after changing some so we’ve made other changes and the seizures start again – every few days perhaps.  It’s a matter of finding a balance but it’s a fine line.  What complicates the seizure control is I have been told that because of the location of my tumore (on the motor strip), seizures are likely to increase in frequency/severity post-gamma knife up to about 6 months.  I can only chase the problem to a point but it’s hard to get out in front of them.  I don’t want to go on decadron or any other steriod to reduce swelling because I’d have to stop treatment at that point.

More to come – this to me is really a small issue in spite of dedicating a post to it!  The good news is the tumor was stable as of the last MRI – and I just need to stay in today as I always say.  Sometimes the frustration boils over this morning was one of those mornings.

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