2009 March | Blogging in B Minor

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Quote of the Day:

I still find each day too short for all the thoughts I want to think, all the walks I want to take, all the books I want to read, and all the friends I want to see.

- John Burroughs

Mar 31

Vaccine Delivered!

Brain Tumor Vaccines, DCVax No Comments »

Things are moving fast but I received confirmation that my vaccine (DCVax-Brain) has been delivered to the infusion center at Sutter where I will have my vaccine treatments performed. Can you believe it?! I’d ask for a picture if I could but I trust them!

5 months post-op I have the vaccine so now we’ll implement this treatment tomorrow afternoon and see how I do. Now I can be excited! I also had an MRI yesterday – I’ll review results tomorrow afternoon.

Everything happens in God’s time, not our time. In spite of having a recurrence while waiting, I still have faith in God’s plan. I believe I was supposed to have Gamma Knife and this (receiving the vaccine this late) was to come on the heels of that, for whatever reason I don’t know. I may never know just like we may never know many details of what my family has been facing over the past few years. But, as long as we trust in God, pray for His will, not our will, we will continue to be ok and not live in fear.

There as a great speaker at church a few weeks ago and he really got through to me. The theme was “Living in Fear”. He mentioned that there are 365 references in the bible related to expelling fear. What struck me is that this man’s father died when he was just 4 years old – of cancer. He said that in spite of his home being a Christian home and his Father being a Christian man, he had a difficult time letting anyone close to him for a long time because he didn’t want to get hurt again – he expected the worst. Afterall, your dad as a boy is the center of your universe and then he’s gone.

I had a chance to speak with him after the service and he gave me some great advice moving forward because my sons will be in the same place as he was when he was one day. Too much to go into but the conversation was very helpful.

For him, and I couldn’t agree more – it boils down to faith and what God wants for us:

2 Timothy 1:7

For God has not given us a spirit of fear but of power and of life and of a sound mind

He doesn’t want us to live in fear of anything. He wants us to face life. If we have cancer, a brain tumor, a year to live – He wants us to trust in HIS plan, not muddle it up with our own version of a plan. So it’s about praying for His will and realizing that fear is a waste of time – everything will happen and work out the way it’s supposed to. We’ll get some important cues on the way – so I have to be attentive and not miss those but He’s driving.

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Mar 30

Big Week

Brain Tumor Vaccines 3 Comments »

Quick Post – I have a lot going this week. We haven’t heard anything different – so the vaccine should be here tomorrow.

Updated – MRI done today at 2pm. We are going to set up an MRI as soon as possible – could be today or tomorrow. The MRI is used as a baseline of course prior to starting the vaccine.
I will likely start the vaccine on Thursday. This will be administered at the infusion center here at Sutter.
Our plan is to use the vaccine concurrently with Thalidomide (yes, the same “morning sickness” drug from the 70’s). More recently, however, Thalidomide has proven to be a solid treatment for GBMs – it cuts off the blood supply to the tumor.
I also have an appointment with my Oncologist through all of this to see where we are with the plan.
I have been taking Valcyte as well. Still debating if that is in the mix. We may take that out so we can understand the efficacy of this treatment combo.

A lot going. Will post what I can here.

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Mar 27

Truth or Fiction?

Brain Tumor Vaccines, DCVax 2 Comments »

I would call this a cautiously optimistic update on the vaccine. To many this is a lot more exciting news but I received a call from my Neuro-Oncologist today and with a lot of confidence she told me that the saga involving my vaccine, DCVax-Brain, is finally over. The release of the vaccine was confirmed, it will be here on Tuesday and treatment will start on Thursday of next week. They had so much tissue that they were able to manufacture enough vaccine for 3 years. This is a significant quantity – many people unfortunately don’t have enough viable tumor and are left with smaller quantities. So, I am blessed by the news here and I could use some good news! I will also be starting Thalidomide next week as well.

If I sound a bit subdued about it – I am and for good reason. I’m excited about this but will hold off on really being happy about it until it’s truly at the infusion center here in Sac. As I mentioned before, this has been surrendered on my part. I’m starting Thalidomide which is a treatment whether I use the vaccine or not. Whatever the grand plan is – that is the map I’m traveling on. If it includes the vaccine, then it will show up when it’s supposed to. If not, there will be other things, or not, on the road. Either way, it’s all going to happen the way it should.

Praying for God’s will is the simplest concept on paper but the most difficult to understand and truly internalize in my humble opinion.

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Mar 23

Memories for Later

My Story 1 Comment »

This was a great weekend with Aidan in particular, our 6 year-old son. First, he loves to color as you might know if you are a regular reader. I put this slideshow together last July showing some of the drawings he made – just looking at life through a 6 year-old’s eyes. Anyway, he made the most thoughtful and tear-jerking card for me this weekend. Just click on the thumbnail to load the card:

On Sunday, I took Aidan to his first NBA Game – the Sixers vs. the Sacramento Kings. We are LA Laker fans all the way! I have been since I was a kid so I’m making sure he will be! But we didn’t care much - he’s never been and it was a total suprise – he didn’t know where we were going until we got there. My company has season tickets and I was able to to get a pair for this game – and the seats are amazing so this will be a great memory for us:

Aidan – So happy to be at his first NBA game

View from our seats:

And finally here’s the tickets, just so they are archived here always:

What a great weekend! I was actually feeling better too – no seizures and I had more energy. My weight is still an issue though. I just don’t feel like eating so I’m doing a lot of protein shakes and smoothies (berries and so forth). I’ve gone from 175 or so to 160/165 or so. I’ll be talking to my doctor about this soon.

That’s all for now…

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Mar 20

Seizure Control

Medications, Seizures No Comments »

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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Mar 18

Strength – Let’s Keep Going…

Christianity, Inspiration, My Story No Comments »

Isiah 40:28-31 ²⁸ Have you never heard or understood? Don’t you know that the Lord is the everlasting God, the Creator of all the earth? He never grows faint or weary. No one can measure the depths of his understanding. ²⁹ He gives power to those who are tired and worn out; he offers strength to the weak. ³⁰ Even youths will become exhausted, and young men will give up. ³¹ But those who wait on the LORD will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint.

Amen

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Mar 17

Treatment Plan?

Brain Tumor Vaccines 2 Comments »

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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Mar 13

Gamma Knife Completed

Gamma Knife 4 Comments »

The gamma knife surgery is behind us and was successful – at least based on the plan that was established. The MRI that was conducted first thing in the morning showed no growth which was great news! That of course allowed us to proceed with the plan.

This is the only pic I could get (a cell phone pic at that). This is the frame that was screwed into my head that stays on through the entire process – from MRI through the end of the Gamma Knife procedure. It not only serves to keep your head perfectly still and provide the surgeons with precise measurements for the procedure, but it also allows you to feel like you have voluntarily placed your head into some type of crude torture device, or vice, which is truly awesome.

Not to scare anyone, they provide a nice dose of local anaesthetic (my head is still numb as I write this) and give you ativan before they break out the Allen Wrench set. They have a great tool kit there. But, as with any other procedure, infusion, surgery, etc. I have been through during this trial, I try to never lose sight of why I am doing these things.

So, I have quite a nice headache, some holes that will heal but the results will not truly be known for 1-2 months. Based on the plan, however, it looks good. There are some risks moving forward – increased risk of seizure, radiation necrosis, and some other issues but this is the best course. The vaccine will be started next week and finally we will be on the plan I have been chasing for months.

I will continue to put updates out here of course. Time for rest…

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Blogging in B Minor

Quote of the Day:

Vaccine Delivered!

Big Week

Truth or Fiction?

Memories for Later

Seizure Control

Strength – Let’s Keep Going…

Treatment Plan?

Gamma Knife Completed

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