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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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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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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Just a quick update.  I am continuing with my bi-weekly avastin infusions and they are going fine.  I will have an MRI coming up in the middle of October – yet to be scheduled.  Walking into the infusion center every two weeks is always a bit sad on several fronts.  I typically pray for many people in there.  I’m blessed to be in the position that I am with a GBM.  So many people in there are just at the end of the road.  It’s their time but I take comfort in knowing that this is God’s plan for them.  Many of them smile and have joy in their eyes, still.  Others are just very tired.  I pray for all of them though.  The team there is very good – they really know how to take care of their patients.

I am noticing over the past month or so that my memory is slipping a bit.  It’s all short-term memory.  I use my iPhone constantly.  Examples – I’ll set a meeting for a Thursday and someone will tell me they can make it on Thursday (this will be on a Wednesday for sake of discussion).  I’ll reply “oh, the meeting I set up is on Friday, not tomorrow?”.  With confusion showing on their face, they’ll say no, it was Thursday.  I’ll say ok, you’re probably right and I’ll double check my calendar.  Or, I’ll ask someone on Tuesday who’s playing on Monday Night Football and of course if was “last night” because I’m asking on Tuesday!  Dumb stuff!  People say that they themselves do that all the time but I know radiation is catching up to me.  My neuro-oncologist has noticed – and I’ve missed some appointments with a therapist I use for support as a result.

The positive?  This doesn’t affect my professional life.  I am laser-focused at work.  I may let a few meeting times slip, but I have audible alarms and other means to stay on top of everything.  I’ve also found some great brain teaser type of game for the eye phone that build up cognitive endurance.  Between that and my professional life, I’m getting along just fine.  It’s something that is evident to me now is all.  It is what it is and I am taking steps to work on it.  Just like physical therapy that I have every week, I have to work on this, too.  Sometimes it feels a bit overwhelming – so much to do!  However, this thinking goes back to living in today and, sometimes, just in the moment.  I can choose not to fill myself with everything at once.  Right now, I’m just posting this to my blog, period.  That’s it.  And I’m enjoying it!

Next week is an off week for treatment.  I’m still having seizures – had one over the weekend last weekend but they are very minor.  I’ve had so many minor seizures that I can walk through those just fine.  I will say that the first few seizures after the large seizure back 4-6 weeks ago concerned me in the beginning.  I wasn’t sure if they would evolve into something more significant but they haven’t.

Kids are great and Rachael is doing well.

I had to put this pic in here.  Rachael took this of Keegan at a park and he looked so happy!  She told me that 5 seconds before this a little girl was looking through the same window and he bonked her on the head so he could get in there.  Bully.  He apologized after the picture.

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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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I haven’t posted for a bit.  I’ve been trying to balance out my seizure meds.  The second medication I was prescribed raised the levels of another medication I was taking so we had to back off the dosing of the new med.  I started having some double vision – this is the same condition that led to the 911 call some time ago.  So far, backing down the med has helped and I haven’t had a seizure and my vision seems ok.

I will be folding Avastin back into the mix.  I will have labs today and start tomorrow with an infusion.  You may recall this is not a drug that will pull down my immune system.  We are just throwing whatever we can at this. The vaccine seems to be helping fatigue for sure.  My current issue, however deals with walking and weakness on the left side.  I’ve regressed in this area so I am going back to physical therapy for conditioning.  It’s just something that has to be done.  My heel striking is ok but I’ve started having a roll in my foot when walking and I’m hyper-extending my left leg when walking.

Aidan and I have been having a good time playing bball.  He loves to play horse.  I can jump about as high as Keegan!  But, I can get out there and shoot and do pretty well.  I’m just spending time with him and at night reading and talking is great.  Keegan and I have some fun but at 7, Aidan can really whip a football and it’s really fun!

More to come…

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I went in for my third vaccination series yesterday.  I obviously can’t say for sure what is helping, but I have more energy than I’ve had in a long time – think I mentioned this.  I’m taking valcyte, thalidomide, the vaccine (DCVax-Brain) and will still be seeing results from the gamma knife (both positive as well as swelling which could result in swelling and certainly explain the seizures).  One thing is for sure – I haven’t felt this good in a long time. 

 I have completed day 0, day 10 and day 20.  My next vaccination is 8 weeks from now on May 27th.  The schedule wasn’t laid out for me very clearly at first but this is when it starts spreading out.  I will be having an MRI here in the next 3 weeks or so and I should have some good information at that point because the aftermath of the gamma knife surgery will have cleared up much moreso than when we had the last MRI.  Interpreting the images will be much easier.

It is so great to be in a routine for now.  There was so much up in the air.  So, this side is ok but now I have to tackle the seizure issue and talk strategy with my Neurologist.  I’m about maxed on the Keppra so we may need to look elsewhere.  I have two other meds that also control this so perhaps another combo is in order.  It’s somewhat of a constant job staying on everything but if I do these things and pay attention to everything – and act on what I need to do – I can ensure that the time I have with my kids and family can be fulfilling.

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Just a quick post here tonight.  I had my infusion on Wednesday – my lymphocytes were up around 1500 (they only need to be above 400 to use the vaccine) and my absolute neutrophil count was up at 1400 which is great.  So my counts are doing great.  As far as how I’m doing – ok but the nausea this time around is worse and I’ve had a pretty severe headache.  The fatigue, interestingly enough, hasn’t been quite as bad as it was after the last infusion.  Infusion – isn’t that a strange term?!  I just came back from the kitchen after brewing a cup of loose leaf green tea using a great self-contained, all in one cup and infuser.  This particular tea, called Green Tea Heaven (you should get some from Teavana if you like green tea – it’s really good!) can be used over three infusions.  Nice!  I’d much rather deal with tea infusions than infusions of Irinotecan.  Anyway – random tangent there…

The headache has been pretty constant.  I spoke to my doc about it and she said she’s not really worried about it.  Headaches are always a concern with these drugs though – particularly Avastin.  A really severe headache can signal a bleed so you just need to keep an eye on things. Nausea of course is par for the course with most chemo – some Zofran helps with that.  The fatigue isn’t as bad because I decided to follow orders (and took my wife’s advice) and just rest.  I contemplated working for “just a few hours” today but I couldn’t do it.  I sat down at the keys at around 10am to play just to relax - I have a song started, the acoustic guitar is layed down on a track and I have tracks set up and loaded with full string sections of Cellos, Violins, Violas and Basses that I put together last night but I couldn’t move on it at all.  Songwriting on chemotherapy doesn’t work.  So far, songwriting with a brain tumor has worked so well.  I burned out the last CD in 5 months in terms of writing but I can’t get things going.  Oh well – it will come.  I guess I’m being hard on myself considering all that is going on.

So, the day has been mostly filled with sleep.  The headache is a bit better – I decided to take a pain med after it was really pounding away.  But, this will pass.  It’s temporary.

That’s it for now.  This should be the last Avastin + Irinotecan infusion as we are tentatively to begin the vaccine on the 16th.  We will see…

Cheers,

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My current (new) chemotherapy cocktail as it were which is all IV-based and consists of Irinotecan and Avastin is definitely much harsher than Temodar.  As you might know, Irinotecan (also known as CPT-11) was folded into the mix on Wednesday.  At first my side effects were ok well into Thursday and I exhibited none of the gastrointestinal issues.  The fatigue was the most significant sympton and was really on par with Temodar – at first.  Remember, everyone is different so this is just my personal experience. 

On Thursday night, I slept hard after going to bed at around 7pm.  I did get up at 8:30pm because of the situation with Dakota and after that was in bed at 10pm I think.  On Friday, however, I was really tired and left the office around 12:30pm.  I got home and went to sleep around 1:30pm and slept to 3:30, was up briefly then back to sleep until 8, up and ate something then slept for 12 hours.  I was up on Saturday morning briefly and had an egg and toast then slept again until Noon.  Had lunch, back to sleep until 5pm.  I got up again to eat, then back to sleep around 7pm for the night and got up this morning at 8am.  You get the picture.  Geez. 

So, I feel like I’m on the other side of the fatigue.  I did also have some of the other side effects starting late Friday but those are also passing.  My next infusion is two weeks from last Wednesday then we’ll cut the Irinotecan which is what has caused these side effects and start the vaccine.  That will be the end of the first week of February or so.  I’ll have blood work done to ensure I don’t end up lymphopenic. 

No cakewalk at all but another mountain to climb.  It’s always hard on the family too when you are down and out for 3 days or more.  Carrying the entire load isn’t easy so there is that added component. 

More later – just going to rest up and take time so I can work – want to keep that rolling.  I’ll post as usual so those of you heading down this road no at least what all of this is about.  Again, this is just my first experience with this chemo.  Most have fatigue but it varies.

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