Blogging in B Minor

I sure need to remember this. The last four or five days I have allowed myself to stray from stable ground into the unknown and dangerous territory called tomorrow. In addition, and equally dangerous, I’ve been thinking about the past, most notably my job, “how it used to be” and other aspects of life before brain cancer.

I have written a lot about how difficult different points of this journey can be. Those of you on this plight know from your own experience. I knew that this juncture would be difficult (leaving my career and adjusting to home full-time) but I admittedly under-estimated just how difficult it would be to leave my career in the past, keep my feet firmly planted in today and make a smooth transition.

To give you a view of some of what’s going on and what I’m praying about, I just really mourn the fact that all the work to reach that certain “position in life” is over or has seemingly culminated – at least in the environment I have enjoyed for so many years. If we are to reach our goals, all of your drive, perseverence, goal-setting and ability to capitalize on opportunities must come into sync and so much more. Only then will we reach various milestones. Moving to Sacramento was a significant milestone for us. Being close to family being our first objective, securing a position that was perfect for me and being blessed with the lifestyle we have been able to enjoy has been amazing. We were blessed in Orange County but being in Sacramento w/family is all we wanted for the kids. About nine months after we moved was when I was diagnosed and we wondered why. We all wonder why, don’t we? And then I accepted it and faced it and thought “why not?”

I slipped back into it. Over the last three days I once again wondered why. This is old ground! Why on earth am I churning through this again? These are the trappings of yesterday. If you’ve read my posts, you know why I can’t work just as much as I do and the reasons that I’m doing this – my aim is 100% correct – God and my family all know this. Yes, I was passionate about my career and this is a huge adjustment for me but it’s the road that God has placed me upon. But leaving it behind is…..hard.

You see, I know that living in the past veils today. It’s akin to putting on one of those old movies that has lines and squiggles and out of focus scenes in it that blur today’s experiences. This such a difficult concept in practice. Yesterday holds many wonderful memories and also trials and adversity. They are what shape us and how God has planned our lives. Worrying about tomorrow chips away at my trust in God and also veils today but in a very different way. If I’m in a vulnerable place, worrying about things like finances, my children and their education, their financial future, all realistic given my circumstances – I have placed it on my shoulders, not in God’s capable hands . God’s big enough for all of this. Don’t get me wrong. There is a very human component here. For me there is nothing wrong with mourning or grieving my career that I am forced to walk away from because of my health. However, when I begin to lean into those feelings and they seem to overtake my day, that is when I know I have been knocked off-center. I’m sure the barometer is different for everyone.

So where does this take me? It takes me full circle back to today. Living in today because it’s the day He has made and it’s what we have. It’s all any of us have whether we have leukemia, brain tumors, or perfectly healthy lives. After praying a lot one verse stood out:

Romans 8:5 says: For those who live according to the flesh have their outlook shaped by the things of the flesh, but those who live according to the Spirit have their outlook shaped by the things of the Spirit

This is about faith, hope, strength and continuing to push the best I can. The disease may be beating me physically but it can never take who I am, what I have accomplished and will accomplish together with God and the undying love I have for my wife, children, family and friends. It will never do that and cannot ever do that – to any of us.

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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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A very quick post and some pics regarding today’s Gamma Knife surgery.  First, everthing went perfectly and it was successfully completed today.  A long day it was.  We were there at 7:30am and left at 2:00pm. I will get into more details later about the process (this is #2 for me) I thought it would be helpful for some to see pictures of the actual prep involved in Gamma Knife - the prep consumes most of time. 

Warning for the squeamish – some of these pics may not be for you.  After all, they are screwing a device to my head to render it immobile while receiving high dose precision radiation from the machine:

More to come later but wanted to quickly thank everyone for all the prayers.

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Yesterday I had an MRI in the morning that was scheduled as a 30 day follow-up to my last MRI. The image to the left is the result. The yellow arrow represents the existing tumor cavity left over from my second surgery. The red arrow represents a new tumor that was found during the study. There’s no way to understand the grade of the second tumor based solely on MRI but presumably it’s also GBM and originated from the initial tumor. These tumors are infiltrative by nature and grow like weeds so you can stamp one area out but they have fingers and can pop up somewhere else. So much for my first day of being retired!

I always remember, there is nothing that can happen at this point that we can’t handle and there is always a solution that we can pursue. It’s never easy but we find our way. So once again, the wheels of medicine are often running. The first thought here is Gamma Knife and that is what we are going to do. It’s scheduled for Thursday morning. I have a meeting with my neurosurgeon tomorrow just to discuss the game plan and any deficits/risks of the process. The second tumor appears to be on the motor strip as well but in the specific area that controls my left hand. I had a seizure on Sunday morning and it was a little different than previous seizures in that my left hand was pulled into a fist and I started pumping my fist repeatedly. This correlates with the location of the new lesion.  I had Gamma Knife in 3/08 so this will be #2

As I have more information I’ll post it here. Thanks for all the prayers and support.

God bless,

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I have had a lot going on lately in the middle of the holidays regarding medical tests and treatment options. As I’ve written lately, I’ve continued to lose function in my left arm and hand.  This has been concerning to me considering that the decline has been fairly rapid meaning over the last 90 days.  Since I got out of the hospital when I was treated for the cold I had, I started back on avastin and two weeks ago Thursday I had a DC VAX injection.  I came off of Valcyte for a period of time since my blood counts were very low and I’ve started back on that as well. 

Yesterday morning I had an MRI.  This MRI showed increased enhancement around the tumor. It’s unclear at this point whether or not this is tumor growth, a stroke that has occurred, Gamma Knife continuing to kill cancer cells in the area of the motor strip which is resulting in neurological deficits or edema. Regardless, I will start on a new chemotherapy next week called carboplatin.  This is an IV-based chemo that has similar side effects as temodar.  I will continue with DC VAX, Valcyte, and now carboplatin.  Today, I am meeting with my neurosurgeon and we will discuss if there any options at all surgically. My guess is there are no options at this point but there could be later. Any surgical resection well further involved the motor strip and the likely result will be a complete loss of the left side of my body.  If that becomes necessary later in the choice when faced with this paralysis on the left side versus succumbing to this disease obviously the decision is simple.  However at this point if there are other treatment modalities that can keep the tumor at bay than that is the obvious and preferred course to take.  I will have input from neurosurgical point of view later and we will start putting the picture together.

It is somewhat like being at the beginning again. If you’ve kept up with the blog from the beginning you might recall that I had a decision to make between watching and waiting or performing surgery. After obtaining three opinions I went forward with surgery. In this instance I will likely reach out and obtain a second opinion from the University of California San Francisco. For anyone embarking on this journey I highly recommend that you do the same. It’s not a pot shot at your neurosurgeon. You’re just being your own advocate and ensuring that you’re making the most educated decision that you can.  After all if you are facing the prospect of being paralyzed, you best be as well-informed as possible. I believe I am far from a scenario however we are prepared for anything as we have been all along. We have had enough ups and downs over the last three years to know that anything can change on a dime.  Honestly, avoiding surgery is the goal and every neurosurgeon’s goal is to increase neurological function, not decrease it. That is what’s difficult about my case and other people’s cases. As is the case with many brain tumor survivors, I came from a position of being a high functioning individual.  I operated in a high functioning professional environment, lived a good life, could run, throw a ball to my son, etc. and I’m losing function (I can still hammer a soccer ball to Aidan).  Some people come from having minimal functionality because of their deficits and surgery actually improves their situation.

I will update my blog when I have more information but it may take a day or two. Typing is the challenge and I’m experimenting with some dictation software which is a huge help.

Best to all of you.

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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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Before I left for Tahoe, I had an MRI as a recheck just to ensure I wasn’t experiencing any growth.  Sometimes an MRI is a result of a patient being symptomatic of course.  As you may have read, I had a fairly significant seizure so it was necessary.  My last MRI was July 12th which showed a reduction in size when compared to the May scan.  This MRI came back showing further shrinkage and it was done a little more than 30 days later.  The tumor cavity has further collapsed, showing that cancer cells are being killed off.  This is great news!

Several theories.  One is certainly my use of DCVax.  I started this in April and it may be moving in a very positive direction.  I’ve discontinued my use of thalamid – this was 45 days ago.  I want to see if that’s necessary.  I’ll know in the not-too-distant future.  The second is Gamma Knife.  This was done in March.  A third – use of Avastin every several weeks via IV.   We can also look at combinations of each.

My own sense.  It’s a combination of all three.  How’s that.  There is a theory with GBMs and perhaps many brain other primary brain tumors that you keep the tumor guessing to keep it simple.  The Gamma Knife blew away, as much as possible, a small nodule of growth.  The Avastin typically keeps it in check.  In spite of past failures using Avastin + CPT-11 (Irinotecan), we decided to use DCVax with Avastin.  I believe most of our success comes from DCVax.  I’m sure I put data here.  You can do a search on the site and find info.

We are very happy that we have had 2 scans showing a reduction in size.  We’ve only ever managed “stable”, never some positive success.  We’ve of course had failure along the way, such as last Octiber when my tumor was an Oligoastrocytoma 3 and went through an anaplastic transformation to a GBM that resulted in surgery.

A great weekend…

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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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