Blogging in B Minor

As I mentioned I had an MRA to try and find out why I’m having these headaches.  The test was negative – everything looks perfect.  One of the images that the MRA produced is shown here – pretty fascinating.  We were just looking to seem if we could find a blood clot, embolism or some other reason why I would be having such awful headaches but everything looks fine.  The imaging is amazing though. 

It’s too bad that everyone can’t just get scanned.  Not this type but just an MRI.  There is a program in NYC – a mobile MRI unit that drives around and allows volunteers to take advantage of technology.  I can’t remember the stats that I read, but it was staggering to learn that just normal people going about their daily business were walking around with brain tumors

Anyway, now that these tests have swiped away this theory, I spoke to my doctors after getting lab work done and we believe there has to be an infectious process going on somewhere.  My cell counts are ok.  I don’t have a temperature at all but I’ve had the chills and the fatigue has been terrible.  Another observation is my blood pressure (diastolic) has steadily increased since I’ve been on Avastin.  THe last time it was taken it was around 90.  So, the headaches could be due to hypertension.  Lots of moving parts here.

I have an appointment with my general practioner today – perhaps some antibiotics and a review of everything will take care of this.  For now, though, I have to wait on more treatment.  ANother reason is my creatine levels are off the chart – 330, the highest they’ve ever been so my kidneys are screaming at me!!  I can solve this by drinking a lot more which is what I will do.  I usually drink a 32oz bottle of water at work and then a few glasses at home but it’s just not enough, particularly on Avastin.

More later.

Subscribe by Email RSS Subscription

Well, we were able to sneak away this weekend to Napa Vally here in California, some of the best wine country in the world.  Stopping at some wineries was fun – they are typically beautiful and surrounded by acres of grape vines, and at this time of year mustard blooms.  The real benefit was just getting away.  I was great on Friday – drove out, stopped off at some wineries, had lunch, checked in to our hotel around 2:30, took a quick nap and then dinner at 6.  By the time we were back at the room it was 9pm – that is a long day for me.

I woke with a pounding headache unfortunately – we had a nice breakfast and I was good until Noon but then I slept in the room until 6, ordered room service (we went with a group so Rach joined the group for dinner) and back to sleep.  Sounds familiar.  Sunday morning I had a hard time going and pushed it almost to checkout.  It was a nice getaway but I wasn’t the best travelmate!

My significant issues right now are extreme fatigue and headaches that seem to be focused mostly in the rear part of my head.  I have a few other strange anamolies such as chills but other than that things are ok.  The fatigue is the most difficult to battle as most of you with brain tumors can attest to.  When you think about it, your body is spending 100% of it’s energy fighting a tumor – and in many cases including mine, an extremely aggressive brain tumor.  On top of that, I am attempting to maintain my life – work, run errands, play with the kids, etc.  My doctor keeps telling me “most people don’t do what you’re doing at this point”.  Well, what should I be doing?  Stop working.  That doesn’t seem right at this point – at all.  Way too early.  I’m not banging out 12 hour days but I am far from being incapable of doing my job.

So, the next step is a few tests:  an MRA (magnetic resonance angiography), an MRV (magnetic resonance venography) and a standard MRI to see if we can figure out why I’m having headaches.  It could be as simple as swelling or as serious as growth or other malformations.

More to come…

Subscribe by Email RSS Subscription

First off I want to thank everyone for the kind emails and comments on my blog.  I sincerely wish that I could reply to each and every email but I simply cannot.  But know that I do take time to read them – I print them and read them before I go to bed when I have time and can sometimes read them when I have spare time on the weekend.  I received a nice email from Leslie Sellars – THANK YOU.  Another from a friend of a gifted artist named Kimo who is struggling with a GBM and is interested in the DCVax Vaccine – I wish I could help!  What I Can tell you is that it involved a lot of FDA paperwork/approval (a stack of paperwork and hospital board approval) but Dr. Linda Liau (sp?) at UCLA is running trials and he may get help there – so many emails I won’t drone on but I just can’t possibly respond to them all.  And I have so much going on at the moment.  So here is the latest just to keep friends, family and blog readers up to speed:

As you know the end of last week wasn’t so fun.  Tumor recurrence news swept those dark rain clouds from October right back over our lives again.  After talking about it Thusday night, trying to just get over the shock that this is just not going away (which we of course knew but now it was reality), we started our weekend with a nice night out on Friday, trying to just get back to life as best we could.  The proverbial rain was still pouring down though and we really didn’t have an umbrella – shelter is hard to find when you receive this news, particularly when the recurrence happens in 30 days.  Very similar to the scenario in October.  Surgery isn’t really the first option here because a solid cheomo plan needs to back it up.  I failed Temodar and Irinotecan.  Perhaps Avastin.  Headaches continue.

Moving on to Saturday night (oh yes, it gets better!!), I started to feel some pain in my upper-right wisdom tooth.  I never had them pulled – never had to because they didn’t cause any issues.  Well, come 9pm I am in utter pain!  God, can I get a break here?!  More clouds, thunder – it’s a full-on storm now.  What else can really happen??  I guess you can visit the blog posts around July of 2007 and see what can be worse – having a newborn and brain surgery 2 weeks apart?  I don’t know anymore!  Where is the umbrella please!!  An old wives tail is soak cotton balls in vanilla extract and put it up in there and it will numb it up – some relief.  Finally I fell asleep.  Strangely enough it would subside during the day then start at night. 

Luckily my mother-in-law works for a great dentist so I had it extracted on Monday but I have to skip my Avastin infusion today because it would interfere with the healing – not so good.  It’s just more drama.  We’re used to it!  The tooth problem is nothing.  Now it’s the chemo plan. 

So, I am not just sitting idle in spite of all this.  For now, I started a drug called Valcyte. There is a belief that GBMs may be caused or at least spurred on by cytomegalovirus (CMV), a common herpes virus. An interesting suspicion, which is supported by several studies.  A two-year trial with Valcyte of Glioblastoma diagnosed patients was recently completed. These results have not been published yet. It would be a breakthrough if the treatment with an anti-CMV drug prolonged the five-year actuarial survival rate significantly.  So why not?  I will also probably use Thalidomide.  Remember Thalidomide babies?  The premise is it cuts off the blood supply to the tumor.  It’s used mainly for multiple meyloma but it seems to have some efficacy against GBMs.  There are none of the bizzare issues in adults because we are obviously done growing.  

I have a meeting tomorrow to chart out more of the strategy.

Subscribe by Email RSS Subscription

The words you never want to hear.  Particularly for me since in just a matter of days I was to start the vaccine I have been waiting for for nearly 4 months.  But, this is exactly what has happened.  It’s small progressive tumor measuring about 1cm x 1cm but measurements really don’t matter when you’re dealing with a GBM - this progression took place in 30 days time while I was receiving Avastin and Irinotecan infusions so I’ve failed both Temodar and Iriontecan.  Back to the drawing board – we need to identify and use other options.

I didn’t feel good going into this one.  I have had headaches since my last infusion a week ago Wednesday and also over the past 24 to 48 hours I have experienced a few dizzy spells.  I tried to correlate this to chemo but it didn’t add up.  Of course I’m not a doctor but I have performed a lot of research so going into this MRI I was thinking two things:  1 – there could be edema – some brain swelling associated with the chemotherapy and that is creating some intra-cranial pressure resulting in the headaches and now perhaps some dizziness or 2 – there has been recurrence resulting in the same.  Rachael was worried about the scan mainly because I was – I’m usually ok with them. 

So here is a comparison of the two scans - last night’s and a month ago.  These are just two coronal flair images but basically tell the story.  The image numbers are different but the total number of images in the set are also different.  They generally correlate:

01/03/09 MRI

02/12/09 MRI

It’s pretty easy to see greater enhancement at the bottom area of what is the tumor cavity left by the October 2008 surgery.  A lot of that is edema but within this area is where new progressive tumor has been identified.  I haven’t been told yet where this is in relationship to the motor strip – it could also be right on it but it explains the headaches and also may explain the dizzy spells.

Needless to say last night was not a good night here.  Rachael and I are tremendously frustrated with all of this.  I know a lot of you going through this feel the same way with your own situations when receive news like this.  You run the gamut of solutions and it’s one step forward, two back.  However, you have to keep going.  We stop, get angry, get angry at God, wonder where He is, etc. etc. but then we do settle back down into the solution and this is no different.  I will be talking to my doctors today quite a bit.

So again, two surgeries, radiation to 60Gy, failed Temodar, failed Irinotecan (obviously) – what are the options and more importantly what is the strategy.  The strategy is to shrink this or remove this so I can use the vaccine – period.  How do I do that – one option is gamma knife surgery.  For a small area such as this, gamma may be a great method but the experts will tell us.  The other is using different chemo options until we find one that my body / tumor responds to.  So far, it hasn’t happened.  The third is traditional surgery but I’m not keen on this idea nor do I think my Neurosurgeon will recommend it.  And, as far as chemo goes, I also don’t want to use chemo that wastes me away.  If my days are ever numbered, I’m not going to spend them withering away in front of wife, children and family.  I know there is a time when some of that happens but the point is I’m not going to make a choice to ’save my life” at the expense of having a very low quality of life.  If possible, Gamma is the best option – nip it and then start the vaccine.

So more decisions.  For anyone just reading this – don’t let this post overwhelm you.  Start reading my blog back somewhere in 2007 or something.  There are lots of things that go on and when you go through all of them, you are equipped to handle these situations – for the most part.  It’s still not easy.  I had some tears yesterday for sure – my wife did too – it’s very upsetting.  The point is, if you are newly diagnosed, even with a higher grade tumor and are reading here, you have opened a book in the middle that you should start at the foreward and at least read the first few chapters. 

I’d appreciate your prayers at this point.  We just have decisions to make.  Please pray for guidance, strength, wisdom, perseverance and faith.  We know that God transcends all of this – He is bigger than science, so-called statistics and anything else that is a part of this.  Prayers are key though.  Thank you!!

I’ll keep this updated as we move forward. 

Subscribe by Email RSS Subscription

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,

Subscribe by Email RSS Subscription

Alright, the party is on again!  Yea.  No seriously, the cocktail deluxe called Avastin + Irinotecan will be served up at the Sutter Cancer Center tomorrow at 2:30pm as I listen to some tunes on my iPhone.  I’m thinking about taking in Jeremy Camp if I go for CCM but perhaps some old Jazz like Sarah Vaughn might do the trick.  Should I put a poll question up?  HA!  What is the best music to listen to while undergoing a chemotherapy infusion – we’ll go by genre.

Ok, back to the serious business (but I do listen to music – it’s better that way).  I will go in for this tomorrow and instead of pushing it like I always do with everything, and did last time, by working on Thursday and Friday, I am going to schedule myself off the books on Thursday.  If you recall from several posts down, I slept 18 hours a day or so on Sat/Sun two weeks ago.  That wasn’t really so much fun so the strategy here is to avoid it.  I’m thinking that if I take the next day and just relax, sleep – whatever, it might even things out.  Then on Friday, see how I’m feeling.  Perhaps telecommute a bit or schedule out again.  The point is to just not have this total crash and burn.

For some reason, I just push it when it comes to this stuff and my professional life.  When I was recovering from my first surgery, I went back to work I still had 2 weeks of radiation left and did those treatments over lunch, M-F.  Everyone said I was crazy.  I told them I was climbing the walls.  Same with my last surgery – 6 weeks and back to it but I underestimated the potency of irinotecan I guess.  I dragged me down the block!  So, if you can’t get it right the first time, we have to do something different and that’s what we’ll do.   I will post here and let everyone know what’s going on.

Secondly, I just wanted to say a few words about a good friend Ben (no last name out of respect for his anonymity) who I met over the internet via a Brain Tumor Support Group.  He’s a few months behind me, same tumor type (when mine was an AO3), similar symptoms – seizures, etc. and went through a craniotomy.  We’ve exchanged a lot of emails and he’s just a great guy, strong believer and the model of the types of people you can meet while you are going through this trial in your life – other people going through the same exact problem.  You might think that you’re alone, that no one is there for you and you can’t possibly find help.  But there is help – there are people out there, like Ben and many others that are willing to stand by you, talk to you, hear you and be there for you – and most importantly to me, PRAY for you.  His recent email made me feel good – he just shared this verse from Hebrews with me:

So take a new grip with your tired hands and stand firm on your shaky legs. Mark out a straight path for your feet. Then those who follow you, though they are weak and lame, will not stumble and fall but will become strong.

He said I was a great encouragement to him in the beginning when he was starting radiation and chemo.  What he didn’t know is that he was just as much an encouragement to me.

We all grow together my friends.  We aren’t all so unique as we may think we are.  Out in the world, we see people define themselves in many different ways but when you get down to what is at the core of all of us is that we need each other, we need love and support and when you find yourself in a situation such as this, that need is magnified 100x.  People like Ben and others, whether it be through the National Brain Tumor Society or other support groups in your community, give you this support in terms that you’ll understand from people or a person that is walking in your shoes, either as a caregiver, survivor, family member, etc.

Ok, enough of the soapbox!  Time for bed, up for some work and then cocktail time.

God bless,

Subscribe by Email RSS Subscription