Blogging in B Minor

It’s time to get back to work.  Tuesday is the day!  I haven’t even seen this building (just like a year ago) for about 6 weeks but that’s a bit less than the 9 weeks I was out last time.   That’s mainly because I had chemo and radition to contend with last time.  However, I did finish the last 2 weeks of radiation while back at work 

I will just take it slow.  I still have physical therapy and the vaccine coming (more on that later this week).  I will also more than likely have chemo after the vaccine.  Regardless of my current situation, it’s time to get structure back in my life.  I’m climbing the walls but also clearly needed the time to recover.  As you’ve read, I’ve had plenty of issues to deal with so it’s been a productive recovery period.  The 911 issue just a week ago was a perfect example.   And sure, I could have issues, namely seizures to deal with but life can’t be perfect.  I have fears.  But I can’t wait for everything to line up just the way I’d like – no seizures for X number of weeks or stable MRIs for so long, waiting for the vaccine to start so I know all is well with my tolerance.  Sure, that would be nice but I also don’t think I can handle being home.  It has nothing to do with family.  It has to do with my need for structure, the satisfaction I get from my career and what I need to inject normalcy back into my life.

Lately – the last several days and since this 911 issue, I have really been down.  I have found myself in a state of being tired of fighting, tired of being positive all of the time.  Tired of praying, tired of trying to figure what is next.  Tired of searching for the right scripture in the Bible that will give me just the right words to make me feel ok.  I just sort of broke.  The diagnosis of a grade 4 tumor is hard.  Knowing that you have what many refer to as the “great white shark” of brain tumors is enough to break your spirit.  I have handled it pretty well – and I don’t say this out of conceit in the least.  However, I have had a hard time lately.  One surgery followed by chemo and radiation, followed by 8 months of chemo, 3 months of a “normal life” then bam, it’s grade 4.  Surgery #2.  Now a vaccine, then chemo.  My neurosurgeon says “Mark, you can absolutely endure at least 2-3 more surgeries and we can clean things out.” 

It makes you tired.  And you wonder – where is God in all of this??  Well, I know this is an earthly problem.  My body turned on itself.  A pastor from my church put it so well.  God, our Father would never wish this upon any of us, His children.  But he is doing what he can now.  But is is so very hard to see sometimes what He is doing.

So, I need to pick myself up from time to time.  This is a battle.  A big battle and not one I ever thought I would face.  Until you are in it, you can’t imagine what it’s like.  War.  So, I need to go back to the basics – faith, endurance, staying in today.  I can’t wander, for when I do I sink – and I sink deep and if I allow myself there is an abyss down there just waiting to pull me down.  I’ve seen it and I’m not ready to go there – my kids need me and so does my wife.  It’s been rough.  My work will help me.  My wife asked me yesterday if work was a magic bullet – of course she didn’t think it was but in many ways it is going to help me immensely and I said as much.  Structure is huge.

Ok, I’ve written enough and am tired.  Sorry for the downer post but this is the real deal and I’m not going to get on here all the time and act as if everything is just peachy and I’m perfectly ok.  Right now, things have been hard but I know tomorrow is another day and as my wife told me tonight, I will wake up tomorrow and will feel differently – and we will make the most of what we have – and can make the most of what we have.

 More soon…

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All,

I don’t get on here and post how much appreciate (and we appreciate, including my wife Rachael) all of your support.  I receive so many emails it’s hard to keep up, many of which I forward on to Rach as they are uplifting and provide a lot of encouragement.  Your comments on the blog and particularly the influx of emails are humbling and I just wanted to post how much we truly appreciate it and give thanks.  Here in the US it’s Thanksgiving on Thursday and it seems appropriate to let you know this..  There are some of you that I know personally and you keep in touch and stay updated through my blog, but the large majority of you I don’t even know- and that is truly amazing to us.  You have just supported us and jumped on the train and joined the journey. 

So, thank you!  I can’t find any other way to put it.  I hope you all (in the United States) have a great Thanksgiving Holiday and for the rest of you abroad, have a great rest of the week and enjoy your weekend (and perhaps get some holiday shopping started!)  We are always falling behind on that task…

Here’s a recent picture of “the boys” while we were out.

Cheers,

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Well, the past few days have been a rough ride.  On Tuesday, I was feeling fine in the morning – just going about my normal routine.  I left the kitchen to head to the master and almost instantly I was hit with the worst vertigo I have ever felt in my life – no kidding.  I had to hold the walls and I was able to get to the bed.  The room was spinning out of control – or I was.  I couldn’t tell which.  I have this way about me of not wanting others to be burdened with my condition so I closed my eyes and just layed there for a few minutes, praying that God would take this from me.  I really didn’t want to have to get Rachael involved in it Well, this time I was having to walk through it because it wasn’t going to get better.

At this point, I called Rachael and of course these days she’s sprinting to my aid.  She is so supportive.  I just told her the best I could what was going on and I frankly didn’t know what to do about it.  I didn’t have a remedy.  There wasn’t any medicinal remedy like I have for the occasional seizure .  I felt sick.  To cut to the chase, I reached my limit and couldn’t cope and told Rachael to call 911.  She asked if I was sure and I told her yes. In my head I was thinking that the tumor was growing, brain swelling or some other change was causing this – vomitting, vertigo – all of it are signs that a tumor is really on the move.

As I was wheeled out of the house, I never opened my eyes for if I did, I would become even more dizzy than I already was.  They got me up from the bathroom, on a stretcher, asked me a ton of questions I couldn’t answer and took me to the ER which thankfully is 2 mins from our home.  They gave me zofran which is an anti-nausea, another drug which fights vertigo and decided to admit me.  They gave me an MRI which was great news – better looking than 30 days ago!  So what was going on? 

The culprit?  The increase in my dosage of Lamictal, one of the anti-convulsants I take.  We went from 800mg per day to 900mg back several weeks ago and it ended up being a toxic dose.  It took 2 weeks to build up in my system but I learned that this is a classic result and reaction.  By Wednesday morning I was feeling much better except for a splitting headache. 

What a few days.  All is well as I type this.  But geez!  I guess as usual you just have to go with it all.  You can’t change any of of this but it sure does get old.

More soon.

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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 better 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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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.  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, sometimes discrimantory and very male-dominated environment, 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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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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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…

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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!

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