Blogging in B Minor

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.

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

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

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:

1. 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!
2. 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)
3. 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…

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

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

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:

• State of the Art Therapy for GBM
• Novel Vaccine Boosts Survival in GBM Patients
• GBM Vaccine Treatment - Double Expectancy?  (WRAL News Story)

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.

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

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

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!

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

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

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. 

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

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

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

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

Tags:  Brain Surgery , Brain Tumor , My Story , Surgery

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,

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

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

Update

I continue to become more symptomatic which is actually good believe it or not! I had a focal seizure yesterday afternoon and although not as long as the seizure on Thursday, it was fairly intense.  I was able to work myself out of this in 5 mins and used an Ativan to bring it down.  The reason, however, it’s helpful is it’s confirming the brain mapping we have performed.  The seizures have been confined to my left leg and have not extended up into my upper body.  The tumor growth and area that has been mapped via fMRI and brain lab imaging indicates that it’s right on top of the area of the motor cortex that controls that very function - left leg.  So, it’s actually easier for the neurosurgical team and as a patient to know that we are going into a surgery a) solving a problem that has started and isn’t going away and b) having solid, symptomatic confirmation of the mapping. 

On to other news….I was up early today - no particular reason, I haven’t been worried about anything.  I think the Ativan just made me sleep a lot yesterday so I’ve had enough.

Tumor Vaccines

As for the DCVax vaccine, my team is working so hard on this.  We have some costs on some of this.  Some trials are not exactly “free”.  So far we understand some of the costs but not all.  We also need to understand a little bit more about the research protocol but my neurosurgeon, Dr. Edie
Zusman
at the
Sutter Neuroscience Institute has
been amazing in
doing everything in
her power to maximize
my length of life.Dr. Edie Zusman at the Sutter Neuroscience Institute has been amazing in doing everything in her power to maximize my length of life. If you are ever faced with a primary brain tumor, she is who you want in your corner.  She has the fight and tenacity that I need in my situation and her entire team has an arsenal that they are bringing to bear.  She has spent hours of her time so far on this vaccine issue and will be spending a lot time this weekend dealing with it.  Monday will be critical as we will be getting final details.  I can’t say enough about the Neurosurgical team at Sutter though.  They are a brain tumor center and a vast majority have been trained at UCSF, Stanford and other elite institutions.  They have gamma knife, fMRI capabilities and so much that you find at any other top shelf brain tumor center ala Duke, MD Anderson, UCSF, etc.    

That’s it for now.  Today is a nice family day.  Rachael, Aidan, Keegan and I are going out at some point for just a family picnic.  I wanted to play some soccer with Aidan - we’ll see how that goes.  May just push it a bit - who cares.  :-)  Bring a kite.  Note sure.  My parents got in last night so we’ll see them today as well.  Tomorrow church and I don’t know after that.  Just going to focus on today…

God bless, 

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

Tags:  Brain Tumor , Brain Tumor Research , brain tumor survivor , brain tumor vaccine , clinical trial , fMRI , My Story , Neurosurgery , sutter neuroscience

You guys are great!!  I can’t tell you how touched we are with your overwhelming support.  I have received so many emails from friends, blog readers, other brain tumor survivors and people who are just believers and want to let me and my family know that they have faith and hope in our future and this surgery.  How amazing people are. 

I have a group of friends from my childhood, guys that I have literally known since I was 3-4 years old and we have stayed in touch over the years.  All of them are behind me.  People in the Church.  A friend of mine, Jake Larson, who is the Senior Pastor at Arcade Church here in Sacramento - wrote such a nice piece on their site about my trial and asked the church to pray about this.  We have friends that are offering up meals, assistance - it is amazing and we are truly grateful to everyone.   Just a prayer is great, really.

 As of now, I’m done with work.  Yesterday in my office I had a very intense focal seizure.  My left leg was involved and it got really out of hand.  A co-worker, who happens to be a great friend of mine for many years was in the office and I called him in.  I took a few Ativan and did some deep breathing and after 10 or so minutes I got myself out but I was oh so close to dialing 911.  I could not have walked out of that place myself.  I was close to the seizure I had after my 2007 surgery.

So, the impact?  I am weak in my left leg - have a bit of a limp is all.  Well, we’ll take care of that on Wednesday!  One way or the other.  If it’s all worse, then I’ll rehab it back.

So, I’m just going to hang at home, spend some time with some friends having coffee, lunch.  My family is in town this weekend and I’ll basically just rest up for the surgery.

Thank you again for all of your support.  It all means more than you know…

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

Tags:  Brain Surgery , Brain Tumor , Church , GBM , glioblastoma multiforme , My Story , prayer , seizure

Well, here we go.  Surgery number two.  When I looked at that MRI yesterday, I have researched this long enough and looked at enough scans to know one from another in terms of grade.  I knew this tumor was going through malignant transformation.  It just didn’t look good period.  I had a long discussion at home last night with my Neuro-oncologist who had spoken to both of my Neurosurgeons (who had both looked at the film and report).  Both said surgery.  One said surgery and that he felt we could get a really good resection that would likely not result in paralysis on the left side.   His partner, who is my neurosurgeon and lead said that this changes the ballgame completely and asked the coordinator to book an OR at the surgery suite over at Sutter Memorial.   

A tumor that doubles in 60 days doesn’t give you the luxury of time.  12.5% a week - you can’t wait.  Of course you are assuming it continues at that growth rate but what else can you assume?  The worst case scenario.  Rachael and I thought about it last night - not for long though - and we will go forward and have surgery next Wednesday October 8th.  I will have to be more aggressive this time.  They believe they can be successful without paralysis, just weakness - to what degree is unknown.  May need some rehab to build strength back.  I know it’s so cliche’ but it is what it is.  I can’t change this.  We are praying of course.  We are praying for healing, for strength, for hope and a clean surgery.  But this is one of those circumstances in life that cannot be chanced - you have no control and it’s frustrating.

Don’t get me wrong - this SUCKS!.  I’m angry.  I’m pissed off.  I was angry at God last night.  If He can do anything, why is all of this happening??  Well, those feelings come and then they are fleeting.  There are things that happen in the world, to many people - to young children that their whole future in front of them and it can’t be explained.  You wonder why?  Well, why not.  You just have to accept it all and move on.  So, Wednesday we will move on and pray about it all.

That’s it for now.  I have a friend that may make some posts here.  His name is Glen so if you see some other posts you’ll know.  Your prayers and support are appreciated

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

Tags:  Anaplastic , Brain Surgery , Brain Tumor , brain tumor survivor , GBM , grade 4 , Hemiplegia , My Story , Neurosurgery , resection