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Music, in performance, is a type of sculpture. The air in the performance is sculpted into something.

- Frank Zappa

Jun 15

Hospitalized

Complications, Medications, Nutrition 4 Comments »

Beginning last Thursday, I started experiencing flu-like symptoms. I did the best I could to get myself on my feet again io until last night (Sunday) but ended up going to Sutter Roseville Medical Center and was admitted. After being unable to ingest oral meds, let alone the limited food and fluid intake, this was the right call. Among other concerns I had was my inability to keep down oral anti-convulsants and the risk of seizures.

I was finally in a room at midnight. The good news – CT scan appears stable!! I would have ordered an MRI because there are no other comparison CT scans but it gave us a sufficient look.

My aim is suppotive care here. This is likely a virus. So, hydration, get food back into my system, meds back on-boardand basically get the car running again are all part of the plan

More to come. This will come to pass. Have to solve the ptoblem

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Apr 26

Starting Temodar Chemo Tonight

Chemotherapy 3 Comments »

A quick update – heading downtown shortly for my first avastin infusion in about 6 weeks. We waited until we finished the 6 weeks of vaccine injections. Tonight I will start on temodar for 21 days straight then a 7 day break. Then I’ll go back on for 21 days and so on.

Please pray that this treatment slows growth and that it doesn’t impact my immune system too much. You might recall that I did 8 rounds in 2007 and finally came off because my WBC was too low and wouldn’t recover. Strength in numbers. I sincerely appreciate it!

A dear friend gave this to Rachael and I. I wanted to share it with everyone. A great reminder!

Are you passing through a testing.
Is your pillow wet with tears?
Do you wonder what the reason,
Why it seems God never hears?

Why it is you have no answer
To your oft-repeated plea,
Why the heaven still is leaden
As you wait on bended knee?

Do you wonder as you suffer,
Whether God does understand,
And if so, why He ignores you,
Fails to hold you in His Hand?

Do black doubts creep in, assail you,
Fears without, and fears within,
Till your brave heart almost falters
And gives way to deadly sin?

All God’s testings have a purpose-
Someday you will see the light.
All He asks is that you trust Him,
Walk by faith and not by sight.

Do not fear when doubts beset you,
Just remember-He is near;
He will never, never leave you,
He will always, always hear.

Faithful is He who has promised,
He will never let you fall,
Daily will the strength be given
Strength for each and strength for all.

He will gladly share pain with you,
He will gladly give you peace.
Till your tired and weary body
Finds its blessed, glad release.

When the darkened veil is lifted,
Then, dear heart, you’ll understand
Why it is you had to suffer,
Why you could not feel His hand

Giving strength when it was needed,
Giving power and peace within
Giving joy thru tears and trial,
Giving victory over sin.

So till then just keep on trusting,
Thru the sunshine and the rain,
Thru the tears and thru the heartaches,
Thru the smiles and thru the pain

Knowing that our Father watches,
Knowing daily strength He’ll give,
Victory for each passing hour,
This is life, so let us live!

- John E. Zoller

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Apr 22

Treatment Plan

Brain Tumor Treatment, Chemotherapy 1 Comment »

After a long discussion at the Neuroscience Institute this morning, we have decided to go back to Avastin as the staple and use a rotating system of an additional drug month to month that will be switched out potentially – depending upon how I’m doing. For starters I will go back on Temodar. 21 days on, 7 days off with IV Avastin every other week. Temodar can be switched out for VP-16, Carboplatin or a host of other drugs. These are viable options that we think a) strike a good balance between quality of life and length of life, b) provide freedom in making choices to fold in other medications and c) hopefully provides us with a window of time to research and find a trial/treatment that is worthwhile pursuing. Even trials have drawbacks – the most significant of which to as a patient is the acceptance criteria. For me that would mean the trial would have to accept patients who have had:

Recurrent GBM
Previous use of Chemo agents (Temodar, vp-16, etc
Previous Surgeries (including stereotactic radio-surgery such as Gamma Knife)
KPI score +or> X

The problem with some trials is that you lose a lot of your lattitude, meaning you are locked into their guidelines so it’s not exactly all rosey there in the land of drug trials. Some only allow newly diagnosed, or that you cannot augment the trial with other drugs of your choosing for example.

I’ve been through 8 rounds of Temodar but I was on a 7 days on, 7 off regimen. I posted about this back in October, 2007 when I described how those first five days on Temodar went and the routine I developed. Because I’ll be on it a week longer each month, I will only be taking about half the dose. That will help in reducing side effects, mainly upset stomach. I should be able to handle this just fine. It wll be interesting to see if the cumulative effects of treatment come into play at all.

For now that’s it.

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Mar 24

Brain Tumor Vaccine

Brain Tumor Vaccines, DCVax, Medical Updates 1 Comment »

As most know that follow my blog, I am continuing now with my vaccine therapy. I have 2 doses left after using one of them on Friday. We’ve also been trying something interesting. Each dose consists of 2 injections , one in each arm. For the last two sets we have been using Aldara cream. I’m placing the cream at the injection sites 48 hours in advance under tagaderm bandages changing them once. The theory is that this will pull more dendritic cells to the surface of the skin thus allowing for more “scouts” to carry the vaccine to existing tumor. Call it super-charging the process if the hypothesis is correct. I’m using the cream for two days post-injection. Only a few seizures since gamma-knife – focal and localized in my left hand.

I continue to be amazed at the power and blessings that God has given us. I’m not working but so far my most important accomplishment is how much more I have fallen in love and bonded with my son Keegan. He’s almost 3 (July) and I have never spent this much time with either of the boys. Of course with Aidan being older I have spent a lot of time on weekends coaching him in soccer and doing other things but I didn’t do what I’m doing with Keegan with Aidan. It’s been great except yesterday when he decided to play mountaineer and apparently lost his footing and fell! He’s fine.

I’m back in touck with some near and dear friends which is really nice. What a gift to have the opportunity to thank people, tell them how they influenced your life or just that you love and care about them. I don’t know that everyone who leaves this place is able to really do that or at least to the extent wanted. It’s great!

I’ll have the vaccine again a week from Friday, and another MRI here in a few weeks but it’s about today. Later Avastin will be folded back in along with VP-16 and Valcyte. We’ll likely have to move rapidly to other treatment modalities

I’m going to speak at UC Davis at a Brain Tumor Survivors Meeting in May. The topic? How to use technology to effectively support treatment. I’ll save details on this for another post.

Spring is beautiful here so far. The days have been nice. Slight breeze and sunny.

Cheers,

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Mar 02

Napa Wine Country

My Story 2 Comments »

My brother Shawn came into town and has been here over the past 5 days. It was so good to see him. As planned, now that I’m off work, I’m trying to spend a lot more time with family and friends. I was really sad to see him go but we will be having more visits. I wish we lived closer.

Here are a few great pics of Napa.

Medical

I have an MRI this Thursday. I’ll begin to see some Gamma Knife results (albeit difficult to see because of swelling) and we’ll be checking on the first tumor resection site and anything new of course. I’m continuing to have a CBC done each week at the lab just to make sure my counts are good.

I’m also talking with my neuro-oncologist about starting up the vaccine in about 2 weeks. I have 3 doses left (a dose consists of one injection into each arm) and we’ll use them in a booster fashion – every 2 weeks. Pulling out the stops on the rest of the DCVax. Avastin and VP-16 are the other two players in the plan along with valcyte. Yeah! How’s that for a brain tumor cocktail….post-gamma knife! The positive is I’m more used to VP-16 so side effects are spread apart. We’ll settle on everything after the MRI.

I’ll post info about my MRI later this week.

I’m feeling at peace with things. Getting away helps but a lot of prayer lately has helped tremendously. I was meditating on Proverbs 23:7 today. ”For as he thinks in his heart, so is he (Proverbs 23:7, NK). I sometimes read the devotionals on Joel O’Steen’s site and this piece asked the question, “do you ever stop to think about what you’re thinking about?” The Bible tells us that what happens on the inside of us - our thoughts, attitudes, and motives are more important than what happens on the outside in our actions. Jeremiah 29 tells us that His thoughts are for our good. His thoughts are for our peace. His thoughts are for our victory!

The entire goal of course is to align our thoughts with His thoughts by meditating on His word.

Cheers,

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Feb 09

Gamma Knife After-Effects

Gamma Knife 2 Comments »

First off, here’s a freaky image! I want to be this next Halloween! This look at brain anatomy is somewhere on my blog but I thought it would be worthwhile to include it in another post.

This really explains the delicacy of the primary motor cortex which is exactly where the two tumors I have are located. The original tumor that was first discovered in January 2007 has primarily affected the area at the top – functions such as the arm, trunk and foot. The second tumor that was just discovered several weeks ago has significantly affected my hand and arm which makes sense if you look at this on MRI.

This diagram is blown out into other diagrams. For example you can find a diagram that just focuses on the face. It’s amazing.

In terms of Gamma knife, the swelling in my forehead has subsided. It basically drops down from your forehead to your eyes and then into your cheeks. At one point it was just above my eyebrows and Rachael said I looked like a Vulcan! I did! It was like a huge ridge that went from one side of my face to the other. My good looks were just starting though. Next, it dropped into my eyes and I look like I got punched out in a bar. Woo hoo! A cancer patient brawing in bars. I walked out into the family room one morning and my son Aidan looked at me and said “you look different dad – have you looked in the mirror?” Nice. Alas, it’s gone

I’ve had the normal nausea associated with taking VP 16 but Zofran really helps with that. Still a bit fatigued but that is much better. Over the weekend I was pretty tired but I expected to be. Tomorrow I’ll be going in to me with my neuro oncologist followed by another Avastin infusion. I’ll go in for physical therapy.

With the fun stuff, we are looking at a number of options for get-aways. A few local options such as Carmel, Monterey, and other destinations on California’s central coast are convenient. We’re planning a trip right now with Aidan but were not sure where. It’s a trip that will be just for the three of us since Keegan is two and Rachael, Aidan and I have never done this before. There’s a cool safari trip that we can do overnight - you take a jeep trip through a large open area – giraffes bow down and you can touch them and there are a lot of other animals. Then you can stay overnight in a cabin that has netting and canvas so you can hear the animals at night. I will take lots of pictures.

God bless

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Jan 26

Medical Update

Brain Tumor Treatment, Chemotherapy, My Story 5 Comments »

I’ve now completed my second week of using VP-16. I’m now starting to feel the cumulative effects of this chemotherapy. It’s somewhat like temodar but for some reason the side effects are felt more consistently. With temodar I would feel nauseous in the morning but it would subside by about 8 AM. With VP 16, I’m beginning to feel nauseous most of the day. My routine has been the same as it was with temodar but I am folding in more zofran to address the nausea. I wake up just not feeling good but it goes on into the afternoon.

I’ve always stated that this blog is real meaning it’s not candy-coated. I do my best to share with you as honestly as I can - the good and the bad. The last two days have not been so good for me. I’ve been feeling sick, fatigued and a a bit down primarily because of my loss of function in my left arm. This morning in particular was a little bit of a breaking point for me. For the first time I was not able to reach my right under arm with my left hand to bathe. I wasn’t feeling sorry for myself. I know there is a lot more to come that will be even more difficult It was more about the physical limitations I have now and the dependency on others compared to how I used to be and it was so incredibly frustrating to me. I hit the shower wall a few times to be quite honest and because of my frame of mind started wondering what’s next. My left shoulder is just very weak and it can’t support the weight of my arm. The tendons from my scapula to my shoulder are separating and most of the pain is felt in the AM after sleeping overnight. I’ve been trying to use a towel lying on my left side to support my arm and shoulder arent pulling as much but it doesn’t seem to help much. The result is if I bend over during the day to pick something up I hear pops and cracks in my left shoulder and it further stretches out that tendon. I’m stooping as best I can but it’s just a problem I have to work as with the others.

If anyone has experience with shoulder injuries and support systems for sleeping at night I would greatly appreciate any input you have! I think I’ll have some good information from PT tomorrow afternoon.

As I well know, this type of thinking – getting caught up in the problem – accomplishes nothing but at the same time I think it’s important to walk through whatever you’re going to feel. The reality is the same. I’m only human and it is frustrating.

It took me a while to get back into today which is where I belong and what I preach all the time. This certainly addresses the future and anything that is to come. That’s all part of God’s plan. What I find difficult is when I’m going through something like this, I’m frustrated and it IS happening today. There’s no other way than prayer and turning it over and I’ve done that over the last three hours. Enough said

With regard to IV chemo, I will be at the infusion center tomorrow for avastin treatment. I’ve been doing this every other week for quite a long while. On February 1, I will have another MRI. At that point will see where we are and I know that we will be guided in the right correction.

Lastly, I have upgraded the blog’s core software to the latest version. What this means for everyone else as I will be able to build in new functionality that is really exciting. Already I have put in a mobile edition of the blog that you can access with an iPhone, Blackberry and most of the major smart phones. Basically it’s a stand down version of the blog that allows you to see recent posts, comments and allows you to respond to posts on the go. For me, upgrading the blog opens a lot of possibilities in terms of some projects I’d like to tackle when I’m not working. After all I I still have that brainy side that needs to be exercised

I will provide updates as usual. Friday is my last day of work.

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Dec 31

Happy New Year

My Story 1 Comment »

It’s hard to believe that an entire year has passed again. 2010. It seems like yesterday that it was 2009 and we are celebrating the new millennium. For us, this year has been a year of challenges and frustrations but more importantly it has been a year that we have had many good times that we really try to focus on. Living for today every day throughout the year can be challenging as you know that it’s the right way to live for us.

Having a GBM is not the end of the world. In the beginning you do feel that there is so many other people in the world that have their own issues and you realize that you are not unique as the brain tumor survivor nor are your family and friends. A good case in point is my coworker who was just diagnosed with a brain tumor about a month ago. Yesterday when I was at the oncologist’s office very nice receptionist who I’ve gotten to know told me that she’s been diagnosed with MS. I feel for both of them she told me that she wanted her old self back I completely understand this feeling. But in time you realize you have to go on. And we do.

In February of this year I had a recurrence. This was 4 Months after my second surgery in October, 2008. That led to gamma knife surgery in March. Typically, when you have a recurrence, the next recurrence (if it occurs) becomes even shorter from the last. Oh no! Statistics! Well, put those to rest by reading this post. I had Gamma Knife in March and then started an experimental treatment called DCVax Brain in April. Read the Sacramento Bee article to learn more. I continued with Avastin and a drug called Valcyte. The only time I came off of this regimen is when I was hospitalized for a bad respiratory infection called Haemophilus influenzae. I was very neutropenic. Since then I’ve contined back on the same drugs. Seizures? Rattling for sure but part of the territory and God walks beside us through all of this.

So guess what?! 10 months since the recurrence in February, more than twice what our so-called stats indicate. I’m ready for anything because we have God. It’s not about me. This disease and all others are of an earthly nature. Our God is a loving God who doesnt wish harm on anyone but in the beginning we sure were angry with Him – and let Him know it. He’s big enough to handle that though.

Our prayer for the New Year is to live day by day and remember that this is not our plan. We are doing everything possible to address the problem. And, as God guides us down this road that He didn’t create, He is putting opportunities for treatment options, people in our lives, support frameworks and so much more. Nothing is by accident. I’ve seen it in my life and others.

I hope everyone has a safe and happy new year and here’s to a healthy 2010…

Cheers

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