Blogging in B Minor

Post-Op MRI

Mark — Sun, 16 Nov 2008 19:57:22 +0000

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:

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 etter referred to as a glioblastoma multiforme.

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

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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Brain Surgery, Brain Tumor, brain tumor vaccine, Christian, Dr. Edie Zusman, GBM, glioblastoma multiforme, grade 4, MRI

November 12 2008 Update

Mark — Wed, 12 Nov 2008 21:40:45 +0000

It has been a few days since I’ve updated the blog here and for good reason! We have had so much going on in terms appointments. I guess when you have about 6 doctors, add a few more and sprinkle in some physical therapy, a seizure and some DMV red tape life can get busy! But we are good in spite of this. I must admit I have been up and down since my last post emotionally. It’s hard to fully accept this diagnosis. Jumping from a grade 3 to a grade 4 is a big deal and the enormity of the situation coupled with the pace of treatment options needing evaluation can become a blur. All of this aside, the diagnosis is bleak but this is why we have a very talented team in place headed by my Neurosurgeon, Dr. Edie Zusman, who has performed both of my craniotomies. Thanks to her, I am walking with a cane and can walk fairly well without it now! Physical therapy is helping tremendously. And, we know that God is in the middle of all of this.

By the way, the Sacramento Bee ran a terrific story on Dr. Zusman in this last Sunday’s paper. I’ve embedded it below if you’d care to read it but the gist is she’s the only female member of the Amercian Board of Neurosurgery and is ranked in the top 37 best neurosurgeons in the country. Pretty comforting and if you read this story and what she went through as a woman dealing with a sexist, discrimantory male-dominated environmoent, she has accomplished much more than what she does in the operating room. I’m proud to have her as my neurosurgeon.

So I digress. I have been up and down but mostly up. With regard to my condition and what’s been happening:

DCVax-Brain Vaccine

The vaccine is being manufactured. Such a blase’ term for something so important but nonetheless it should be ready shortly. The “red tape” we are working through is some last minute FDA paperwork. There was a lot of FDA paperwork up front and approval from the Neuroscience Hospital Board. With that behind us, they has to approve my use of this which is a formality really. So, I should be able to get and see the Neuro Oncologist who will be performing the infusions either the end of this week or the beginning of next. There is no sense in seeing him until the FDA paperwork is finished.

UCSF Trip

We went to the UCSF Brain Tumor Center on Friday of last week. This was marginally helpful at best. UCSF doesn’t push vaccine therapy and based on this meeting doesn’t even believe in it. Therefore, they discounted the entire approach and basically told me that they don’t believe it will be helpful to me at all. The Neuro-Oncologist basically wished me luck but said once you do this you’re cutting yourself off from a lot of other options. This is a very true statement with any trial you decide to enroll in because with most trials, you have to have not been treated before - otherwise, how are they to tell whether or not their drug is working and / or whether or not the previous treatment has hindered the trial drug? However, this world is also full of politics. A goal is to get patients enrolled in trials. Well, it turned out to be a single trial that he could offer. He had one. A new one. No data, no information about survival rates - nothing. When I told him about UCLA/Cedars Sinai using the same vaccine I was planning to use, and Dr. Black’s program down there which uses the DCVax vaccine whic does have available data, the neuro-oncologist really touted his own trial. He also indicated that tumor was left behind. About 10%. Not true. Sutter’s Neuro-Radiologists confirm this is post-op changes - meaning scar tissue, swelling, etc. Interesting.

Well, that said it all and he suggested we spend 1/2 hour with his nurses acquainting us with the trial. He sent us to another room. When the nurses arrived we asked for paperwork to read up on it and decided to depart. We are not discrediting UCSF at all. This is a wondeful institution. They have some of the best neurosurgeons, neuro-oncologists, etc. in the world but this just wasn’t a fit for us. That was about it. So, we came back home and ruled that out. We really were more interested in a backup plan anyway so we’ll put that together and it may or may not include UCSF. We’ll just have to see.

Other Updates

On Saturday morning I had a pretty bad seizure. As usual, I didn’t lose conciousness but it was pretty scary. My left shoulder and arm were involved instead of my leg which was odd. I took a few ativan with Rachael’s help and that did the trick. It last about 5 mins but it was a bit ugly. Oh well - it’s part of the territory. The tumor removed was about 2cm x 3cm so that’s bound to result in this activity. My concern moving forward is once these neural pathways are opened up by having a seizure, it’s easier for your brain to “find it’s way” so-to-speak to another one. However, I’m comforted in knowing that after my first surgery in 2007, I had one serious seizure and then nothing.

The DMV is pushing for a “reexamination” of my driving. This is pretty standard for what they refer to as a “brain injury”. So I had to fill out paperwork and my Neurologist does as well. Again, it’s just red tape. You’d think they just ask about the surgery, my deficits as a result, etc but I guess this allows them to open the door on everything! All diseases, issues, etc. Funny. Are you an alcoholic? Do you have heart disease? Issues that have nothing to do with my brain surgery. Well, ok. The worst case is I take a driving test but my concern is the time it will take because let’s face it, our government operates like an old rusty Chevy El Camino that’s been rotting in a junk yard for 30 years. Slooooow.

My company is the greatest organization. My wife told me today that they called and want to bring us a “Thanksgiving Feast”. Basically you can get these complete meals for so many people and everything is cooked and ready to go - turkey, stuffing, cranberry sauce - you name it. I am so blessed to work for a company that is just so caring and supportive. Both times I have had to go on leave our CFO, whom I report to, has told me just to focus on what I need to do and my family and that they will make sure that Rachael, Keegan and Aidan are taken care of. How wonderful and what a blessing it is. Words aren’t even enough to describe how much this means to Rachael and I.

Aidan and Keegan are doing good. Aidan got his very first trophy last week for soccer! He put it right next to his bed on his bookcase so he could look at it as he wesnt to sleep. He’s had 6 goals this season and is thrilled The last soccer game is Saturday. That’s where I was heading last Saturday when my little problem cropped up!

Anyway, that is about it for now. This week and next should once again be busy. Hopefully one of the appointments will be to get started with the vaccine so we will be praying about that.

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Brain Tumor, brain tumor vaccine, DCVax, Dr. Edie Zusman, glioblastoma multiforme, My Story, Sutter Neuroscience Institute

UCSF Appointment

Mark — Thu, 06 Nov 2008 20:35:08 +0000

We are all set with UCSF and our appointment tomorrow at 11am. I picked up my pathololgy slides yesterday and CDs that contain about 15 MRIs. The rest of the data was sent to UCSF by the Neuroscience Institute (dictations, sugical reports, etc). UCSF has a number of trials taking place at any given time including some that are vaccine-based.

Of course, the purpose of this consult is to continue building a strategic roadmap for my treatment plan. I need to have this in place. I’m used to operating this way in life anyway, albeit mostly in business. Regardless, I’m not going to find myself in the middle of the DCVax-Brain vaccine trial, have something go wrong - whatever that might be, and then be forced to figure out what’s next or fall back on the standard of care. That is the worst case scenario - being forced to make a monumental decision on a dime. So, to have this somewhat figured out, exploring the landscape, having a sense of what is out there makes a lot of sense and will feed the plan.

I’ll certainly post some good information about the appointment over the weekend.

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Brain Tumor, GBM, Treatment Options, UCSF

Neurosurgeon Appointment

Mark — Sat, 01 Nov 2008 20:12:17 +0000

I mentioned that Rachael and I had an appointment with my neurosurgeon to go through our strategy moving forward. Rather than go into a lot of detail regardint the hour-long discussion, here is what came out of it:

We knew I had been “accepted and approved” into the DCVax-Brain program. The final hurdles were a) did they have enough tumor to manufacture the vaccine and b) did I have the genetic markers necessary for this to work. The answer to boh questions is YES!
We were asked about treatment options. First is conventional. You perform surgery then use standard chemo. The second is a clinical trial that has been established. The third is experimental (the vaccine)
We have opted for the vaccine, however, we have also decided to do a consult at UCSF to see what other phase I/II trials they have so we aren’t putting all of our eggs in one basket.

As with anything, experimental is just that - it could yield amazing results but there could also be side effects. Regardless, we have to be aggressive so that is why we are going with the vaccine

More to come on all of this. It will take 4 weeks to manufacture the vaccine so in the meantime I’ll rehab my left side and spend time with my family…

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Brain Tumor, Faith, hope, My Story, recovery, vaccine

Time Out To Laugh

Mark — Sat, 01 Nov 2008 15:18:37 +0000

With everything going on, I have to find things to laugh about. Dana Carvey is one of my favorite comedians - check out this bit on the Tonight Show. I still can’t stop laughing!

http://www.youtube.com/watch?v=5mavvzmLhlA

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Blog, Hilarious, Miscellaneous

Research Mode

Mark — Thu, 30 Oct 2008 08:52:41 +0000

Rachael and I are going to meet with my Neurosurgeon tomorrow at around Noon. The meeting was set up on fairly quick notice but mostly because I’m pressing. The vaccine work appears to be tracking in the background although as I have said before, this is a grade 4 tumor. There is no single solution, vaccine or not. If there is one premise that can be learned about high grade gliomas it is this - you have to keep them guessing.

Our meeting tomorrow is going to be one of strategy. My doctors have been looking far and wide at many different types of treatment - to potentially augment our vaccine treatment if it is not performing to our success criteria and b) as follow through after the vaccine. A lot of dialogue has taken place between the institute here and UCSF as I understand it but of course I will find out a lot more tomorrow. Well, make that today - it’s 1:15am! Which brings me to my research.

I’m not ususally a night owl at ALL. In fact, I’m in bed at 9 or 10pm. There are times though that I think I just need to put some hard work in and this happens to be one of them. Before my first, I spent so much time researching, amassed the research library you’ll find under the Library Tab above but most importantly, armed Rachael and I with information we needed to make intelligent, well-informed decisions about my care (i.e. second opinion re watch and wait vs have surgery). So tonight is no different. I may not sleep - I do have a lot on my mind tonight. We talk about comment about staying in today. I am squarely in today - believe me. And today is about focusing on my treatment options, my health, working with the doctors and Rachael and ensuring that I have the latest “refreshed” information I can.

There are a number of treatments out there that will likely come up. One is something called CDX-110 which I have heard of. I really don’t know if this is feasible or not. With CDX-110, the vaccine targets an abnormal form of a growth-promoting hormone and the vaccine is thought to boost the immune system’s ability to fight any residual cancer. Another is a treatment at UCLA. It’s different than the DCVax-Brain. There will be countless others and some criteria by which to select, prioritize and implement a treatment based on where I am in my recovery process. However, it’s clear that the DCVax-Brain is the treatment out of the gate that is being pursued.

If I didn’t mention it, I have placed a number of docs in the library tonight should you be interested:

That’s all for now. I am going to try to get some sleep before the whole night is gone! But this was time well spent. Between the time and research I have already put into this and tonight’s work, I think we’ll have a productive discussion.

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Brain Tumor, Brain Tumor Research, brain tumor vaccine, Dr. Allan Friedman, GBM, hope, My Story

Discharged / Faith and Endurance

Mark — Tue, 28 Oct 2008 03:02:35 +0000

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:

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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Brain Surgery, Brain Tumor, Christian Resources, hebrews 11:1, james 1:12, My Story, Surgery

Rehab Update / Thank You

Mark — Sun, 26 Oct 2008 07:42:35 +0000

Hello everyone! Well, this is the first time I have had the opportunity to post anything but it’s good to be able to put a quick update up here and to thank everyone. My good friend Glen provided an update on surgery day and I appreciate that.

One important clarification - Glen had indicated in that update that I had started on the vaccine treatment. I have NOT started the vaccine treatment. The first 7-10 days post-op are used to perform a number of processes on the tumor tissue, several of which will determine whether or not this treatment is compatable with my body chemistry. I should have info on this in the following days so more to come on that as we move forward.

I wanted to check in and thank everyone for your support and prayers during this time. They have meant everything. There was a lot of uncertainty going into this - and obviously still is, but your prayers and support, prayers through my church and other churches, chains, etc - have once again resulted in more than we could have imagined. In spite of the tumor now being a Glioblastoma Multiforme based on pathology, which was all but guaranteed going into it, everyone including the rehab staff, neurosurgical team and others involved are suprised at my recovery. Although I don’t have any function in my left toes, arching my left foot, side to side left ankle movement and other lower left leg functions, I have a prosthetic type of device that fits around my foot and ankle that is designed to provide strength and lift in that area. This device with the some developing strength in my quads and left-side torso haved allowed me to take 20-40 semi-assisted paces using a cane. I have walked around my room here, shifting weight on to the weak side (left) doing normal tasks such as hanging up clothes, closing blinds, brushing teeth, so I can strengthen what I now know I have.

For a guy who didn’t think he would be walking at all after the surgery I’ll take it! Not sure I’ll be sprinting down the street. My goals won’t have anything to do the physical. They will have everything to do with how this unanticipated gift can be used in my relationship with my wife and children

Bottom line?

I WILL walk - no doubt about this.
We resected all of the tumor that could be seen on the pre-op MRI. With regard to a GBM, you could consider this a > 98% resection although you can never “get it all” with a grade 3 or 4 glioma
I have the use of my hands. I can play piano, write, type. Amazing.
I now have a vaccine treatment that I will be able to access - a full resection was a prerequisite.
I have been blessed with the use of an Acute Physical Rehab Facility - the staff and facility are top notch.
PEOPLE are amazing. Without the body of the Church, I don’t know where Rachael, Aidan, Keegan and I would be. Certainly not here.

Here is the planning board in my room to track my daily schedule, post verses that inspire me, etc. Thought I’d post it here just to share my environment with you a bit. Pretty interesting - a lot of people have asked me what the verses mean…

I am going to start picking my blog up more but it will be slow coming. Thank you again. I look to the future with excitement, one step at a time as I enjoy what’s really important.

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Brain Surgery, Brain Tumor, brain tumor vaccine, craniotomy, glioblastoma multiforme, grade 4, My Story, personal, prayer, Surgery

Surgery Update

Glen — Wed, 15 Oct 2008 23:02:19 +0000

Mark’s surgery was scheduled for today at 8:30am. Following the surgery, I spoke with his brother who informed me that Mark’s surgey was successful. The doctors were able to achieve a resection and removed everything they had hoped for. They are waiting to determine if there will be any deficits to his left side but he was able to move his left arm without any difficulties. Mark is in recovery and all his vitals are good. He is stable, doing well and joking with the medical staff.

Once Mark has been cleared, he will move to another facility where he will begin his rehabilitation. If Mark has access to any kind of computer, I’m sure he would enjoy providing further updates on his condition and his progress. If not, I will be glad to provide those updates for Mark until he is able to do so himself.

Thank you for your prayers and support

Updated by Glen Evans

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Brain Surgery, Brain Tumor, My Story, Surgery

Update - DCVax-Brain Vaccine

Mark — Mon, 13 Oct 2008 20:22:40 +0000

I spoke to my Neurosurgeon’s office and it looks like the vaccine treatment is coming through!! The collection kit is being sent overnight via FedEx from the biolab to my neurosurgeon today with all of the details and the initial collection process payment has been made There will be a small payment out of pocket for us to perform the cell separation process that is necessary to begin the vaccine development and the other costs will be nil!!

Talk about God working some huge miracles. Again, there is that small chance, very small, that something could go wrong but this is all but locked in so I can’t thank all of you enough for your prayers with regard to this. The only way to get ahead in this game is to look at the new emerging treatments and this is one - and seems to be the most successful. UCLA has had significant success with this vaccine in their trials and Dr. Zusman, through a lot of hard work and hours, has been able to bring this treatment here for me. I will be the first patient at the institute here in Sacramento to receive it and I feel very blessed. I just can’t say anything more than that. IF for some reason something goes wrong, I am also ready for that and know that is part of the plan. However, everything I’ve seen indicates this is done and nothing to worry about now.

Things are good. Trying to relax, listen to music. We have a prayer tonight here at home with a number of pastors, friends and family. Other than that, some other family flying in and tomorrow will be a nice quiet day and a quiet night.

Updates on surgery will be posted here as they can be…

Cheers,

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Brain Surgery, Brain Tumor, brain tumor vaccine, My Story, Surgery, vaccine