Blogging in B Minor

I’ve been quite sick over the last several weeks.  I came down with a terrible cold that started as a virus and then was bacterial.  I waited it out in the beginning but it hung on for a week so I went in and at that point antibiotics seemed to have taken care of it.  Still pretty fatigued but that’s just because of a suppressed immune system.  It takes a lot longer to get over these than others.  Those of you who are survivors understand.

I’m going in tomorrow for an Avastin infusion as long as all of my lab work comes back fine.  My vaccine injections are now 16 weeks apart so I have plenty of time to fit this in before the July 22nd injections. 

I seem to have found the right combination of meds to control seizures.  I haven’t had one for a week now and was having one every 2 days so this is a good sign.   MRI due end of this more than likely.  Again, don’t pay too much attention anymore.  Just focus on today as much as possible – but it is difficult to do sometimes as we all can attest to.

Happy Father’s Day to all the fathers out there – hope the weekend is good!

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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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Time to unload some frustration…

Until this vaccine comes through, things are somewhat up in the air.  I’m doing Avastin.  I’m taking Valcyte.  But the vaccine – the topic I’m sick of talking about?  I’ve now officially run out of patience.  I’m hearing about yet another so-called “glitch”.  Apparently not even UCLA is being allowed to enroll new patients into the trial.  Do I care about UCLA.  Not really.  And, I’m far from being new – my brain tumor tissue was harvested on October 15th, 2008 and sent overnight.  Yes, that has been nearly 5 months.  I sat in a chair for 2-3 hours and had white blood cells separated and collected a few months ago and sent.  Do I have anything back – yes – a lot of talk, emails, excuses, glitches – you name it as I move along with a grade 4 brain tumor in my head.

So, I’ve asked for the FINAL answer.  Is it happening or not – period.  I’m not hanging my hat on this thing any longer.  This has nothing to do with God in my opinion.  I have 100% faith in God – not necessarily in these people and certain man-made science although the world has taken huge steps forward no doubt – a result of God working through highly gifted people who share a passion for battling these earthly diseases. 

I need to remember that God is bigger than all of this but I’ve been made a yoyo for too long so I’ll move on to other trials and treatment modalities if I need to – God has a plan for me and my family and if this is not His will, so be it.  I’m not going to allow false hope to permeate my psyche any longer.  It was supposed to be here today but now we don’t know….again.  So, I’m done.  I want a yes or a no.  Period.  Over the past 3 months I have been treating my condition – with the gold standard but I don’t know how much time I have – a month could be significant and this vaccine represented some hope but it’s hard for me to hold on to it any longer.  So, I’m done.  Felt good to get that out!

On the post-Gamma front, I did have a seizure on Saturday afternoon.  My neurosurgeon said it was coincidental with respect to the Gamma Knife procedure but I question that to some extent.  I haven’t been having any seizures, particulary anything that is a 5-6 on a scale of 1-10 – but I’m not a doc.  I just took an Ativan and after 5 minutes or so I was resting comfortably.  I am still having headaches and am fatigued but the fatigue is slowing getting better over the last day or  two.  I spent 30 mins or so last night in the yard throwing bombs to Aidan who caught quite a few for touchdowns!  Keegan ran around like he always does.  He showed a bit of a temper!  He fell in a rockbed and proceeded to pick up a handful of rocks in each hand, standup and throw them down simultaneously in frustration.  Funny boy.

I’m going to see my Neurologist next Monday.  Spoke to my Neurosurgeon yesterday afternoon and she’s concerned about increasing seizures over the coming weeks and months so she thinks we really need to talk about increasing / changing meds before any of that happens so we can stay on top of it – in the interest of driving, working etc.   So, we’ll get that handled.  Other than that, things are ok – just praying about all of the other things going on but really trying to stay in today as I always say.  It’s even more important at times like this.  I’m trying to do some estate planning (yes, a necessary evil) but stay in today.  Be strategic but be here.  It’s a balance but this stuff won’t take long. 

That’s it.  Perhaps by my next post I’ll have more figured out with treatment!

Addendum:   I had another seizure – at work (in my office) so the assumption that Saturday’s was a coincidence, at least for me, is called into question.  It was a 5 minute event, perhaps a 5 on the scale.  So I did talk to my Neurologist prior to my appointment next Monday and we’re increassing my Keppra – we’ll give that a whirl and see how things go!  Again, this is just all part of the process.  I was fully ready.  I had an ativan sitting to the left of my keyboard from the time I arrived nad have since the Gamma Knife.  Not preoccupied but I don’t want to be fumbling around – and I didn’t have to today. 

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I went to my GP and based on everything we believe I have bronchitis or pneumonia.  Who would have thought?  NO idea about the headaches.  My blood pressure has been fine so that’s still a mystery at this point given the MRA was fine. 

To address the bronchitis I started a regimen of Zithromax on Thursday and have been down and out since then but slowly feeling better.  Today is actually the best day I’ve had in a long while and I’ll say I’m at 50% or so.   I made a decision that I just can’t keep getting up and going to work – I had to take some time to let my body rest so I took Friday, today and may also take tomorrow.  I just always keep going as I did during radiation and after my second surgery – I was back at work six weeks post-op.  I can’t keep doing it though.  My body is telling me to slow down so that’s what I’m doing.  I guess I’m stubborn – it took thinking and feeling the effects of a recurring grade 4 tumor, headaches, bronchitis and the aftermath of having a wisdom tooth extracted on top of trying to continue working for me to admit that I had to slow down!  So, some time off is good.

I have an appointment with my Neuro-Oncologist on Wednesday morning and we will determine the course of action which should be an Avastin infusion – WEDNESDAY.  I have to get back on treatment.  The clock is ticking and time is not my friend.  I am taking Valcyte but I need to be doing more – a lot more.  Also, the vaccine is there but we are working through very frustrating red tape.  Hopefully that is finished soon.

That’s it for now.  Thank you so much for all the prayers.  Everyone has been so supportive.  I think I just hit a streak of multiple issues here. 

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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…

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