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My heart, which is so full to overflowing, has often been solaced and refreshed by music when sick and weary.
- Martin Luther
Feb 02

MRI Shows New Tumor

Gamma Knife, MRI, Medical Updates 8 Comments »

Second Lesion - 2-1-10

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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Jan 06

January 5th Neurosurgeon Meeting

Chemotherapy 2 Comments »

Yesterday afternoon I met with my neurosurgeon. This meeting was designed to just get an opinion as to whether or not any surgical options existed to get ahead of the growth. First off I was able to confirm that the area of enhancement and the MRI is in fact tumor. Therefore I know we have to do something to address the problem. In speaking with her there is no way surgery can be performed without the result being hemiplegia. This obviously creates a huge dilemma. One of the prognosticators in terms of long-term survival is the extent of resection of the tumor. The less tumor that exists the more treatable it is in terms of chemotherapy and other treatment modalities. However, in my case I’d be dealing with a huge hit in terms of quality of life. I would be very dependent upon others, be confined to a wheelchair and likely unable to work or it least it would be difficult. Suffice it to say it’s a huge change in life. The million dollar question is how much time does this really add my life if I were to go forward with surgery versus stick with chemotherapy only. Additionally do I want my children and their last memories of me to be in a wheelchair unable to walk, play soccer, throw footballs, get around the house, etc. I really don’t know and that’s what we are discussing right now. It may happen anyway but should I roll the dice and make that happen overnight?

For those that have been following my blog, you know that I am an advocate of staying in today but when it comes to decisions like this you have to look at tomorrow and unfortunately you also have to delve into statistics to some degree. What is the success rate of chemotherapy? What is the success rate of operating on a recurrent glioblastoma in terms of longevity. All of that has to be balanced against quality-of-life. So we are praying about it, leaning on her support network and thinking all of this through. Through prayer, we are certainly hoping that we are not confronted with this situation and that in the first 30 days of chemotherapy I respond to it. The near-term strategy is to start a new chemotherapy which could be carboplatin or a new drug that I have not researched yet called VP 16. I need to speak to my neuro-oncologist more about this. In addition, I have three doses a DC VAX left. I will likely start using those. I’m also continuing to use Valcyte. After I’ve been on this cocktail of chemotherapy and other drugs for 30 days, I will have an MRI and we will see what the tumor looks like. If it’s shrinking that is great news obviously. Even if it’s status quo that’s a good result. If it continues to go in the wrong direction then we start getting down to the difficult decision. I will likely continue to chemotherapy for an additional 30 days after that then we will take another MRI. If I continue to respond to the chemotherapy and I will just continue that regimen, thus avoiding the decision regarding surgery. If it’s moving in the wrong direction then I have a big decision. We’ll cross that bridge if we get there.

In the end, it is about living in today but we have to be thoughtful about tomorrow and make sure that we are mentally and spiritually prepared for such decisions. Sometimes we can’t even imagine how we ended up in this position. It’s surreal. But we are and we have no choice but to accept or circumstances, trust in God and put 1 foot in front of the other. This is not easy at all. Again, I would be lying through my teeth if I told you this is in our worst nightmare. But we try to take it day by day, enjoy our kids, deal with the issues and live our lives. As we formulate more of our plans I will post as I can. I’m using some great dictation software now so I can basically just speak in the text is just laid out on the screen for me with very little corrections to make.

I humbly ask for prayer at this time. This is probably one of the most difficult periods for us. Yes, we’ve been through a lot but if it weren’t for the endurance we have developed as we’ve gone through this trial this would be like a ton of bricks falling on us but we have persevered and done the best we can and we will continue to do so.

Thanks again for all the support and all the prayers. I also appreciate all the e-mails I receive from so many people. They are so encouraging and mean a lot.

Here is my MRI report. What’s important to note is under impression. The observation of increasing enhancement that likely represents neoplasm is what I needed to know. Neoplasm in layman’s terms means tumor.

mri-brain-report-010510.jpg

More soon…

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Jan 05

January 5, 2010 Update

MRI 2 Comments »

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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Dec 04

Prayer

Christianity No Comments »

Sending out a prayer for Steve, a co-worker who underwent a craniotomy this morning.  I do not know his condition at this point but am praying.  If everyone who sees this post can pray it would be appreciated.

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Aug 03

Treatment this Week

Brain Tumor Treatment 1 Comment »

I’m back on track this week after the great MRI I had showing low or no bloodflow in and around the tumor as well as some shrinkage.  I’ll have appointments on Wednesday to resume Avastin infusions every other week.  The avastin really agrees with me well so I typically don’t have any problems.

An area I have been working on lately is my gratitude list.  It’s condensed – there are so many items but I have gone over this multiple times on my own and with my son, Aidan.  Simple things – a house to live in, food on the table, cars to drive, clothes to wear – private school for Aidan.  Some of these items we just take for granted but when you step back and look at the world, many of these are luxuries.  I can recall when we attended Saddleback Church in Southern California and Rick Warren would say that if you have a bank account, food in the refrigerator and a roof over your head, you are wealthier than 95% of the world’s population.  Hard to believe hut true.  But many people just cruise through with this luxuries in place and don’t realize how fortunate they are.  My son, only 7, is learning this.

I pray for all of the people out there who are walking through the journey.  I have a friend in Wisconsin that I spoke to today and he has a recurrence.  A small area of enhancement but he’s done well.  I believe he will continue to do well.  To Daphne and her husband – Robin, Stacey – many others.  Keep your heads up and have faith.  A lot of immediate concerns and needs and challenges.

I hope everyone is doing well.  More to come…

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Mar 09

Gamma Knife Moved Up – This Thursday

Gamma Knife 2 Comments »

Very quick post – my Gamma Knife procedure has been moved up to this Thursday – the 12th.  Everything is being accelerated because the DCVax vaccine will be ready for my use next week (perhaps Tuesday).  The entire team agrees that performing Gamma Knife and then utilizing the vaccine is the right course of action which makes a lot of sense.  So, today I had a quick consult with my neuro-surgeon who is on the gamma team.  Wednesday I’ll meet with a neuro-radiologist and Thursday we’ll get it done.

A lot more to come I’m sure….

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Nov 16

Post-Op MRI

MRI, Recovery 4 Comments »

I haven’t posted the post-op MRI which will show you the drastic change made as a result of surgery.  Essentially, where the tumor existed before you will see a “black hole” on the MRI scan for lack of a better term.  This represents the area where the tumor previously existed and is now gone.  Here is a picture of that scan:

Post Op MRI 10-15-08

And you might recall the pre-op MRI image.  This image isn’t the “cloudy” image that it was before it went through the malignant transformation from a grade 3 to a 4, or better referred to as a glioblastoma multiforme. 

10022008mri_2.jpg

And here is a saggital view of the post-op MRI:

Post-Op Saggital MRI Image

As you can see, this was a sizable resection and the tumor was sitting right on top of the motor strip so all of those fibers were taken.  It’s really a miracle that I’m walking with a cane and I’ve started walking without one here and there.  We can only credit God here – working through Dr. Zusman and pulling off what only He can pull off.  I mean, this is a 2cm x 3cm portion of my brain that is completely gone.  Motor strip tissue gone.  So, there is nothing more to say here.

Anyway, this is just a quick update.  I have a pretty busy Sunday and should have a busy week.  I am now really wanting to get back to work!  There are fears but I can’t let those drive my life (having seizures, having side effects from the vaccine).  But if I can go back to work and do chemo with concurrent radition (I went over lunch and had radiation treatments last time), I can do this. 

I’m still dealing with some ups and downs which leads to being irritable which isn’t fun for mainly my wife!  But I know I’ll get over that.  I think I’m struggling more with this one more than issues in the past.  The GBM is hard to take.  I’ve been breaking my own rule of not staying in today but I will recenter myself.  I also wanted to learn more about the vaccine and as a result of my research ran into statistics.  You have read my posts about this so I had to go back and read the post I made back some time ago called “The Median Isn’t the Message” which puts the world of stats into perspective.  So that took care of that.  I still am working on stay in today.  I’ll get it but I’ve just stumbled a bit. 

Well, more to follow this week…

Cheers,

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Oct 27

Discharged / Faith and Endurance

Brain-Surgery, Recovery 2 Comments »

Rachael and I had a meeting with the staff and case manager today at the acute rehab center and the concensus was to move up my discharge date to today.  Surprise!  So, today at 2pm Rachael and I gathered everything up, said goodbyes to some great people I met and we left for home.  Amazingly, through the grace of God, I met my goal having walked a minimum of 200 paces on my own using a cane. 

For us, this is both a blessing as well as an amazing testimony as how God can work in our family when we pour our entire life, soul and heart into His plan.  As hard as it was to remain completely focused on “His plan” throughout, we were particularly fococused in on two verses – Hebrews 11:1 and James 1:12.   I know Rachael had additional areas she focused but for me this was the pure and simple focus:

Hebrews 11:1  “Now faith is the substance of things hoped for, the evidence of things not seen.”

James 1:12  “Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.”

Many of you know that Hebrews 11:1 goes all the way back to my CD, River of Faith.  We prayed specifically about my left leg – that some function would remain.  Before I went into surgery, I made sure my prayer was clear throughout surgery:

 presurgery_leg1.jpg

I can’t tell you how I feel today.  I feel encouraged.  Some might say that I don’t have a reason to be grateful.  After all, I have a grade 4 tumor, the prognosis is terrible, etc.  Again, I go back to James 1:12.  Patience – stay in today, have faith.  God didn’t do this to me.  This is an earthly issue – my body has turned on itself but God is doing everything in His power to help me and us.  It’s a matter of perseverence, patience and faith.

More later…glad to be at home and I will be SO happy to sleep in my own bed!

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