Blogging in B Minor

I’ve had a strange 24 hours. I had a very odd seizure yesterday that was localized to my left hand as usual. What was odd is that it took my hand hours to recover (from the numbness and tingling). I’m having a harder time opening and closing my left hand today. I also felt a lot of numbness in the area of my left torso (in the area of where your kidneys are located). This is new. I am requesting an MRI which we planned to do anyway but I want it asap. I had another this morning but my hand recovered fine and there were no signs of numbness anywhere else.

I want to rule out certain things other than the tumor such as small stroke. Ultimately, I believe this is all related to gamma knife, aggravation of the tumor site(s) and/or growth or shrinkage but an MRI will tell for sure. At the cancer center now for vaccine injections.

More to come.

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I took a week or so off here.  Lots going on.  On Wednesday, I went to attend Rachael’s great Aunt’s funeral and literally, when I sat down in the pew and it started, a seizure began.  Most of my seizures haven’t amounted to much since July of 2007 after my first craniotomy.  They are pretty small in intensity.  As we stood to sing Amazing Grace, it came on stronger and I had to sit.  I took an ativan and waited about 5 mins.  No relief.  I took another – still wasn’t subsiding.  So, my Father-In-Law helped out of the service.  I wanted to be in the car with the air running.

 Rachael came out and after a total of 45 mins elapsed, I made the call to go to the ER.  I was there from about Noon to 6pm.  They IV’d ativan and morphine since my left arm had smacked the gurney so many times.  Not much else to say.  It was brought under control and that is what I knew would happen by making the trip but it’s not too fun. 

I feel pretty good now.  I have had 3-4 since – small ones, which is common after a large seizure like this.  We are opting to look at this as a one-time event and not be reactive and start changing the meds around.  This could be gamma knife related.  I’m still in the 6 month post period when seizures can ramp up.   More to come on all of this.

 Just to be safe, I’m having an MRI later next week, then leaving for Lake Tahoe as planned for a nice getaway on Friday morning – regardless. 

 Cheers – stay in today…

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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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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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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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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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Update

I continue to become more symptomatic which is actually good believe it or not! I had a focal seizure yesterday afternoon and although not as long as the seizure on Thursday, it was fairly intense.  I was able to work myself out of this in 5 mins and used an Ativan to bring it down.  The reason, however, it’s helpful is it’s confirming the brain mapping we have performed.  The seizures have been confined to my left leg and have not extended up into my upper body.  The tumor growth and area that has been mapped via fMRI and brain lab imaging indicates that it’s right on top of the area of the motor cortex that controls that very function – left leg.  So, it’s actually easier for the neurosurgical team and as a patient to know that we are going into a surgery a) solving a problem that has started and isn’t going away and b) having solid, symptomatic confirmation of the mapping. 

On to other news….I was up early today – no particular reason, I haven’t been worried about anything.  I think the Ativan just made me sleep a lot yesterday so I’ve had enough.

Tumor Vaccines

As for the DCVax vaccine, my team is working so hard on this.  We have some costs on some of this.  Some trials are not exactly “free”.  So far we understand some of the costs but not all.  We also need to understand a little bit more about the research protocol but my neurosurgeon, Dr. Edie Zusman at the Sutter Neuroscience Institute has been amazing in doing everything in her power to maximize my length of life. If you are ever faced with a primary brain tumor, she is who you want in your corner.  She has the fight and tenacity that I need in my situation and her entire team has an arsenal that they are bringing to bear.  She has spent hours of her time so far on this vaccine issue and will be spending a lot time this weekend dealing with it.  Monday will be critical as we will be getting final details.  I can’t say enough about the Neurosurgical team at Sutter though.  They are a brain tumor center and a vast majority have been trained at UCSF, Stanford and other elite institutions.  They have gamma knife, fMRI capabilities and so much that you find at any other top shelf brain tumor center ala Duke, MD Anderson, UCSF, etc.    

That’s it for now.  Today is a nice family day.  Rachael, Aidan, Keegan and I are going out at some point for just a family picnic.  I wanted to play some soccer with Aidan – we’ll see how that goes.  May just push it a bit – who cares.    Bring a kite.  Note sure.  My parents got in last night so we’ll see them today as well.  Tomorrow church and I don’t know after that.  Just going to focus on today…

God bless, 

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Well, just a quick note because I am crashing on two ativan tablets but I had the longest focal seizure tonight that I have had since the severe seizure I had 6 days after surgery. It was confined to my left leg as the mild one I had at the office back 4 weeks ago was but this one spanned 30 minutes. I took an ativan about 10 mins into it and then another 10 minutes later. I spoke with my neurologist and we could have taken the commando approach and gone to the hospital but it wasn’t severe enough in my estimation to do that.

It is frustrating! Your brain is sending signals to your leg to stop the movement and its ignored. Of course there is the anxiety with regard to what this could all mean.  I didn’t have any for several months and now two within a month.  You turn it over.  We prayed about it. We didn’t pray for strength – for courage or faith in Him. We prayed that God reign down upon us, that He was here that He surrounded us and comforted us – that He was with us and wrapped his arms around us – boldly moved forward with us in resolving this and as a result, gave us comfort and strength.

John 16:33 Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.

Will write more tomorrow. No word today from UCSF. I’m sure I will talk w/them tomorrow. Time to crash!

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