Blogging in B Minor

I should hear back from my Neurosurgeon and Neuro-Oncologist today.  I left a message with both.  I thought more about the seizures and I think that because I’m becoming more symptomatic pretty quickly (3 focal seizures in a week), waiting until the end of May for an MRI is a little too long for my comfort level and perhaps we should do one now.  This is obviously an aggressive tumor and in spite of the fact we folded in gamma knife in March and may assume this took care of growth at that time, the fact is we don’t know whether the seizures are being brought on by growth, brain swelling, damage to the motor strip from the gamma knife process (not surprising if so), etc.  I think we need to do it though.  With the recurrence that happened 4 months after my resection in October and “most” recurrences after the first becoming sooner and sooner in elapsed time, I want to stay totally on top of this.   

I’ve been thinking over the last few days about how the so-called “economic down-turn” (which is government speak for recession) has brought some families closer together and taken us back to some core values.  I know for us, it’s built on what naturally happens when fighting a brain tumor and what existed before. 

Most families come together after the diagnosis and are more judicious about how, where and with whom they spend their time.  I think coupling that with the economy is creating more closeness – or it creates the opportunity.  More people are spending time at home – not eating out as much or shopping.  I don’t think there is anyone I know who hasn’t made some type of change to their financial matters.  We refinanced our home.  We found a better deal on cable TV.  But this tightening of the belt as it were is something that can be a positive.  It’s the media that creates so much fear and hysteria about things.  Yes, everyone has to be careful right now and some are in very hard times – and I pray daily about the problem but God will prevail.  In the media, however, the world is going end, right?  The same message was sent a few weeks ago with the swine flu – pandemic!  Remember SARs?  Who can forget the bird flu – the list goes on.   I’m not suggesting at all that these didn’t  effect anyone – they did and it was awful – just like brain tumors and other diseases they are of earthly creation.  The point is the media drives fear and panic.

I find that us the most difficult issue is when I’m not feeling great – it puts a lot of pressure on Rachael and she feels the burden of the evening or weekend day upon her.  Lately I’ve felt pretty good with the exception of the seizures which can put me out of condition for awhile.  I think it’s hard to support each other sometimes when two people are in survival mode at certain times.  We honestly struggle with this.  But, on the other side of the coin (the shiny side!), I’ve been outside with my kids in our backyard playing catch with my older son.  I’ve been able to play with our youngest and I’ve been spending a lot of time with Aidan at night reading books and just talking.

On a funny note, the other night Aidan needed to get out of the bath.  He had his hair and shoulders so lathered up it looked like shaving cream!  But nowhere else – just on his head and shoulders.  Rach asked, “Aidan, why do you have so much so soap in your hair and on your shoulders?”.  Aidan said “Well, the bottle over there says Head AND Shoulders so I want to make sure I do it right.”  Kids can make you laugh – you just can’t do it in front of them sometimes.

Random post.  Don’t forget Mother’s Day on Sunday!!

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I think the effects of the Gamma Knife surgery are really beginning to come to the surface now.  You might recall from the past (review for regular readers) that my brain tumor is right on the motor strip in the right frontal lobe.  Therefore, the targeted area involved the motor strip and seizures was one of the likely effects of this type of procedure.  My surgeon told me that they would likely become more frequent and increase in frequency.  When you think about it, I received 60Gy (Gy is pronounced “grey” which is the unit of measurement for radiation) of IMRT radiation over 5 weeks.  Gamma knife was about 24Gy in one shot.  It’s not difficult to understand how this might create some trauma.

I’ve had focal seizures (seizures confined to the left side of my body – typically in my left shoulder and arm) here and there but there seems to be some regularity developing in spite of increasing meds and folding in a new drug.  I’ve only been on the new drug for a little while so I need to give that time but the only way to describe the feeling in my left arm is it feels like there is a seizure right under the surface that could break through at any time.

I’ve had seizures on 4/28, 5/1 and 5/4.  Yesterday was laughable!  We are refinancing our 1st mortgage – hey if you haven’t do it.  It’s a good time!  Anyway, we were getting some final paperwork notarized and sent out in a fedex store and just as everything was laid out, I felt it coming on.  Perfect timing!  We needed to get this stuff out but what am I supposed to do?  I told Rach that I need to take a quick walk.  So I walked down the strip mall where it looked nice and quiet so I could go finish my seizure and return to sign the paperwork!  How lame is that?!  Luckily it was a normal 5 minute deal and Rach had all the signature lines all organized for me.  I was also glad that my oldest son didn’t follow out – he hasn’t seen that side of this and I’d still like to keep it that way.

I need to find out another answer here.  I’ll keep tracking it with log.  I haven’t had to log these since my 1st surgery really but this is when logging is important.  You simply can’t remember details like when it occured, the duration, if you took medication to stop it and any other info you need to document that may be important.

Other than this issue, I’m still feeling good – plenty of energy.  Something is working but I’m concerned mostly about brain swelling and want to avoid steroids which is where they would go if we can’t control it with standard anti-convulsants.  I’ll get it figured out though.

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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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Today I will receive my second DCVax treatment – everything is moving forward according to plan!  I’m very obviously very happy about that.  I meet with my Neuro-Oncologist in about an hour and we’ll cover my labs from this morning and then I’ll have the treatment.  My labs from Monday were great.  My ANC (absolute neutrophil count) has been great – my white cell count has been higher than it has since I’ve been on treatment so everything looks good there.

I did have a seizure on Wednesday here at work.  I was in a small meeting with just my management team so that was good.  I’ve coached all of them on how to handle that – they really didn’t need to do anything other than “take a break”!  I took an ativan, did my breathing to relax and in about 5 minutes it was gone.  This is all the Gamma Knife.  So, this is about 5 since that procedure.  This was confined to my left shoulder again but that results in my left arm being involved.  I just got a ride home and then slept.  I find when I push myself I’m more susceptible.  I”m still working just 5-7 hours depending on the day.  I increased my meds based on previous discussions with my Neurologist and will continue to if anything else happens.  None of this is unexpected though and the positive here is that I have a good 30 second or so warning.  I know when it’s coming so when I drive I’m either in the right lane or the far left – and it’s my left side so even if my left leg became involved, which it hasn’t, I feel pretty safe driving.

I put up a new area in the blog that contains life pictures.  You can find it under the photos tab.   I have put pictures from pretty much my entire life – childhood, growing up, Rachael and I, my children, etc.  I wanted to have a place where we could go and see all the fun times we have had and continue to have as I add to it.  Also, I want people to know that just because you have a brain tumor you can still have fun.  Don’t get me wrong, there are days when I am irritable and not in a great place (or let things get to me a bit) but there are also days when I am in the backyard, playing soccer with my son (I just can’t kick the ball with my left foot!) or trying to beat him in a game of horse.  We still enjoy life.  We’ve had some good getaways.  Rachael and I are going to getaway for our wedding anniversary too.  We are going to…..Sacramento!!!!  Woo Hoo!  We didn’t want anything other than a few days alone so we are staying local in a nice hotel, going out for a few dinners and will just enjoy time away by ourselves.

The Sacramento Bee writer and photograher were over to our house on Wednesday night to talk with Rachael to finish up the piece that will likely run in this weekends paper.  I wrote about this several posts ago so you can read that if you haven’t to know what it’s about it.  I will also post a link to the online version of the article once I know when it’s published.  It could slip into next week too – not even sure.

 That’s it for now.  Have to run.

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As I wrote earlier, I had a seizure on Saturday, March 14th.  My doctors indicated it was likely a coincidence.  I wasn’t so sure but I received sound advice from Sutter, as always, that I should discuss my medication levels with my Neurologist because she was concerned – my seizures will likely increase as I move forward in time.  I called on Monday and have an appointment this next Monday.

In all of the hoopla regarding the vaccine, I didn’t mention that I had another seizure on Tuesday – about the same severity.  This one was at work – but at least I was in my office and not attending a meeting.  Of course I’m concerned about this occurring and I’m concerned about not being able to work because of this.  It’s frustrating.  I got through it though and went home and was able to reach my Neurologist and we came up with a plan to increase Keppra incrementally over several days.  So far that is holding.  Seizure control is a fine balance and not an exact science as I have learned first-hand from my Neurologist.  He is very good at what he does, as is everyone that has been treating me.  I have truly been blessed.  I am taking three different meds to control this and he adjusted all of them up/down at some point during my treatment.

We knew this would happen but not this soon.  I haven’t spoken to my Neurosurgeon but I am curious whether she still thinks this is coincidental or not – I haven’t had seizures like this until now – post Gamma Knife.  So, we’ll see.  For now, things are ok!  It’s really just part of the process here.  I have been told they will increase but we will be praying that they don’t.  I feel comfortable that we have been proactive to deal with it at the advice of my Neurosurgeon and if I do have issues, there will be more adjustments.

On the treatment front, my Neuro-Oncologist is really in a waiting pattern with treatments such as Avastin purely due to the Gamma Knife surgery.  Anyone has to wait 4 weeks to allow healing before resuming chemo or chemo-like treatment.  So I’m doing the best I can.  Yesterday was a good day – I had some good strength after work and threw the ball around with Aidan in the backyard which was great and then made a cardboard butterfly with his photo on it that he then decorated for school.  It was good for us.

More to come

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I failed to mention through all of my updates that the “driving test” went fine.  She said she couldn’t tell me the final decision as it wasn’t in her hands but that as far as she was concerned I had a “great drive”.  She said out of 25 I missed 4 and they sounded very petty – 2 of them were for not properly “scanning” the intersection and another was a limited line in a residential area (I rounded a corner and came to a stop).  Since I saw elderly folks with O2 tanks and walkers coming to Window 13 to take their tests, I think I’ll be ok.  I felt bad for some of of those folks.  I was talking to the DMV agent and asked if they just pull licenses on the spot and she said absolutely!  Most of time – with elderly people.  So, at some point I will be notified by mail as to the disposition of my driver’s license.  Hopefully this is the end of the saga.

Today is better than yesterday.  No seizures.  I do wonder about the seizures.  They are contradictory to my progress in physical therapy.  Physical therapy improvements indicate Avastin is reducing swelling, resolving tumor evolution and otherwise improving the situation.  Seizures could be an indication otherwise.  But, they can also happen regardless.  The only real proof is in imaging studies and I have an MRI w/wo set up for a week from today.  This one is being requested by the Hematology office that I have been referred to that will be handling the vaccine and other facets of that end of the treatment so it may take me more time to get the results as I don’t have solid connections in that office yet.  I will probably be able to go through my Neurosurgeon’s office though – unless it’s negative in which case the case manager won’t want to say anything outside the presence of a doctor.

The MRI is being ordered to ensure there is no growth prior to moving on the vaccine (we’re making the assumption we will be doing that).  If there is, the vaccine is out.  There is no reason to go through the whole process if there is growth based on all of our information.

Other than that, back to work Monday for a short week with New Year’s Day coming.

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I hope all of you are having a great time over the holidays.  We celebrated Christmas today and it was good for the kids. - no that I have much control.  Rachael and I had a great time with Keegan and Aidan later in the day but for me, my timing is not so good with health – not that it can helped.  Yesterday was whirlwind with so much to do and I started feeling a bad cold coming on (harsh sore throat, etc).  When I got up this morning at 6:30am, I was up for no more than about 10 minutes and a focal seizure started and when I could see where it was going, I chewed up an Ativan.  I really didn’t want to take the pill  as I knew this would put me out of commission later but I really had no choice.  Well, it took care of the seizure.

I was up for 1/2 hour and we needed to cook all kinds of items for breakfast.  So Rachael called her parents and they just came early and helped out.  I ended up sleeping fom 7-10:30am (we do presents after breakfast anyway) and then I had breakfast, we exchanged presents then I slept again from Noon until 3:30pm so I’m having to pass on the Christmas dinner tonight which is unfortuntate but there is not much I can do about it.

Things can always be so much worse.  I am truly grateful for what I have today.  I hope you are all having a good holiday.  I have updates on the vaccine (things are lined up) and I have an MRI all set up for the first week of Jan.  More later.

Cheers,

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You guys are great!!  I can’t tell you how touched we are with your overwhelming support.  I have received so many emails from friends, blog readers, other brain tumor survivors and people who are just believers and want to let me and my family know that they have faith and hope in our future and this surgery.  How amazing people are. 

I have a group of friends from my childhood, guys that I have literally known since I was 3-4 years old and we have stayed in touch over the years.  All of them are behind me.  People in the Church.  A friend of mine, Jake Larson, who is the Senior Pastor at Arcade Church here in Sacramento – wrote such a nice piece on their site about my trial and asked the church to pray about this.  We have friends that are offering up meals, assistance – it is amazing and we are truly grateful to everyone.   Just a prayer is great, really.

 As of now, I’m done with work.  Yesterday in my office I had a very intense focal seizure.  My left leg was involved and it got really out of hand.  A co-worker, who happens to be a great friend of mine for many years was in the office and I called him in.  I took a few Ativan and did some deep breathing and after 10 or so minutes I got myself out but I was oh so close to dialing 911.  I could not have walked out of that place myself.  I was close to the seizure I had after my 2007 surgery.

So, the impact?  I am weak in my left leg – have a bit of a limp is all.  Well, we’ll take care of that on Wednesday!  One way or the other.  If it’s all worse, then I’ll rehab it back.

So, I’m just going to hang at home, spend some time with some friends having coffee, lunch.  My family is in town this weekend and I’ll basically just rest up for the surgery.

Thank you again for all of your support.  It all means more than you know…

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