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Quote of the Day:

Don't go around saying the world owes you a living. The world owes you nothing. It was here first.
- Mark Twain

DMV Licensing Saga Finished

My Story No Comments »

Quick post:  I received a letter yesterday from the nice people at the DMV informing me that no further action is necessary on my part, I passed my “driving test” and I am apparently no threat to society by being on public streets and highways.  Hallelujah!  They did indicate as a footnote that I should report any “adverse changes” in my medical condition to my doctor ASAP, as if I’d “hide” some serious change in a GBM so I could jump in the car and run down to my nearest Starbucks (or one in a distant city because I’m a thrill-seeker) and get a triple shot Latte’.  But good advice from the Motor Vehicle branch of our government.  I appreciate them doling out this advice.  Duly noted!  Yes I know, they are just doing their jobs.

So I’m good to go – or keep going I guess is what I should say.  :-)

Happy New Year. 

Cheers,

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Finally a Date

Brain Tumor Vaccines, DCVax 2 Comments »

Finally a date.  I think we are nearing the end of the vaccine chronicles….

After all of the saga with the vaccine, I have at least a date for the leukapheresis process that is the direct pre-cursor to having the vaccine.  January 8th – next week.  Of course, in keeping with our story, I still have to squeeze the time and location out of of these folks but these are minor details at this point, right?  Once this little 4 hour blood-filtering process is completed (it’s kind of like running your blood through a strainer and what’s left are dendric cells), the cells are sent to the lab, combined with the tumor tissue that they so desparately needed via overnight courier a day after my surgery on October 15th (quick math = that’s about 10 weeks ago) and voilà, I have a cutting edge, experimental phase 1/2 vaccine in my hands.  Anyone picture that scene from Dr. Jekyl and Mr. Hyde in the lab with smoke emanating from test tubes??  Sometimes this world feels a little like that.  It’s certainly not some potion but these are uncharted waters to a large extent.  For the same reason, it serves as a key opportunity

The plan: 

  • Today, 12/30 I have another Avastin infusion assuming my blood work from yesterday all comes back fine – I’m assuming it will be fine.
  • On Saturday, 1/3/09, I have an MRI downtown which is in advance of the leukapheresis and manufacturing of the vaccine.  This is a regularly scheduled MRI anyway but we also need to see if a) the Avastin is effective and b) if any growth has taken place.
  • On Tuesday, January 8th, I will have the leukapheresis carried out.  By the way, you know how acronyms plague every industry and subsequently (and quite innocently) seep out during discussions with customers and in this case patients?  I was talking with the doctor handling this and she said “well, after you’ve been “pheresed….”.  I said “what?!”  What does that mean – what are you doing to me?!  I was of course joking but doesn’t that sound odd?  It sounds like they’re going to do something quite unpleasant to you. 
  • The cells taken from my body after I’ve been “pheresed” will be sent to the lab and I will have the vaccine about a week later, ending the saga 11 weeks or so after my surgery. 
  • DECISION POINT:  Here is the big decision
    • if Avastin is really effective, it’s easy – don’t fix what isn’t broken and use cryogenics to freeze the vaccine for potention later use.  Keep going and perhaps add a chemo agent – my neuro-oncologist has brought up a few that I’ve mentioned in previous posts. 
    • If Avastin is just keeping things managed, this is the most difficult decision.  Do you roll the dice?  I suppose you are in the same position as you are after surgery so we go with the vaccine.  We’ll know.  God will guide us.
    • If Avastin has failed, the vaccine is out and so is Avastin.  So we again freeze the vaccine and look for another treatment option.

A lot to go through here in the short term but we have a lot of experience in making these decisions and God is with us.  The decisions just become more significant and more difficult as we move down this road.

dad-and-aidan.jpgThe last item I thought I’d cover was my son Aidan and something he said that I thought was amazing.  He spends the day with his Mom when he gets out of school, etc. so I always put him to bed and it’s a good way for the two of us to have some quality time.  We usually read a story and then he always asks “can we talk?”  Of course we can I reply and he always smiles and says “ok, what do you want to talk about?”.  We come up with a topic and talk it out.  Last night we were talking and I asked him, “Aidan, if you could anything in the world you wanted to, what would you do?  And I mean anything – what would it be??”  He asked “anything???” and I said “yes”.  Aidan thought for a minute and then said “I would ask Jesus into my heart.” I said “Aidan, that’s great but I know you’ve already done that so think of all of the other things and try something else because Jesus is already in your heart” and Aidan thought for a minute then said “I would just choose that again because it makes me feel joy and I would want to feel the joy over again.”  Then he said “What would you do Dad?” 

He’s a lot wiser than I am and far beyond his years at only the age of 6.

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Driving Re-Examination

My Story No Comments »

I failed to mention through all of my updates that the “driving test” went fine.  She said she couldn’t tell me the final decision as it wasn’t in her hands but that as far as she was concerned I had a “great drive”.  She said out of 25 I missed 4 and they sounded very petty – 2 of them were for not properly “scanning” the intersection and another was a limited line in a residential area (I rounded a corner and came to a stop).  Since I saw elderly folks with O2 tanks and walkers coming to Window 13 to take their tests, I think I’ll be ok.  I felt bad for some of of those folks.  I was talking to the DMV agent and asked if they just pull licenses on the spot and she said absolutely!  Most of time – with elderly people.  So, at some point I will be notified by mail as to the disposition of my driver’s license.  Hopefully this is the end of the saga.

Today is better than yesterday.  No seizures.  I do wonder about the seizures.  They are contradictory to my progress in physical therapy.  Physical therapy improvements indicate Avastin is reducing swelling, resolving tumor evolution and otherwise improving the situation.  Seizures could be an indication otherwise.  But, they can also happen regardless.  The only real proof is in imaging studies and I have an MRI w/wo set up for a week from today.  This one is being requested by the Hematology office that I have been referred to that will be handling the vaccine and other facets of that end of the treatment so it may take me more time to get the results as I don’t have solid connections in that office yet.  I will probably be able to go through my Neurosurgeon’s office though – unless it’s negative in which case the case manager won’t want to say anything outside the presence of a doctor.

The MRI is being ordered to ensure there is no growth prior to moving on the vaccine (we’re making the assumption we will be doing that).  If there is, the vaccine is out.  There is no reason to go through the whole process if there is growth based on all of our information.

Other than that, back to work Monday for a short week with New Year’s Day coming.

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Still Sick

Chemotherapy, Side Effects No Comments »

First off, on Christmas Eve as Rachael and I were getting everything done, I decided to open a gift that my parents had sent to me.  My mom had enclosed a note that said that when she saw it she knew I had to have it and it was perfect.  It was a beautifully framed, very rustic looking painting with Hebrews 11:1 enscribed in the background.  The colors on the canvas are browns and other earthtones as is the enscription so it’s like it’s floating there in the background.  Thanks Mom and Dad!  Very nice.  So anyway, a few minutes later, and I had never thought about this (inspite of CD having this enscription on it which was started in Jan 2007 and that this verse was etched on my leg in June 2007 before my first craniotomy) but I thought, hmmm, I wonder if there are any combination of characters that would work for a license plate but not be too “in your face”?  I found one that wasn’t taken:

licenseplate.jpg

So I grabbed it.  I like the plates that make you think a little bit anyway.  And, a plate like this will force people to look up the verse if they don’t know it.  Anyway, I thought this was a good find.  Some people won’t even put it together I suppose.  What’s also good about using the “1WN” at the end instead of 111 for chapter 11 verse 1 is in the later you don’t know if it’s chapter 1 verse 11 or chapter 11 verse 1.  With 1WN it’s clear.

Well, I have to call my folks.  I haven’t talked to anyone.  I was in bed – didn’t even go to Christmas dinner last night – until 8pm.  Up for a bowl of soup then slept until 8 this morning.  I’ve slept for most of today.  Oh well – what can I do about it?  It’s getting better.

I better get off of this – time to sleep some more.  I’m pretty tired still.  I feel cooped up and would love to get out but don’t feel up to it.  There aren’t even any bowl games on – not even the Toilet Bowl brought to you by Dow Chemical.  Sorry – my humor’s not there. 

:-)

Mark

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Happy Holidays!

My Story No Comments »

I hope all of you are having a great time over the holidays.  We celebrated Christmas today and it was good for the kids. - no that I have much control.  Rachael and I had a great time with Keegan and Aidan later in the day but for me, my timing is not so good with health – not that it can helped.  Yesterday was whirlwind with so much to do and I started feeling a bad cold coming on (harsh sore throat, etc).  When I got up this morning at 6:30am, I was up for no more than about 10 minutes and a focal seizure started and when I could see where it was going, I chewed up an Ativan.  I really didn’t want to take the pill  as I knew this would put me out of commission later but I really had no choice.  Well, it took care of the seizure.

I was up for 1/2 hour and we needed to cook all kinds of items for breakfast.  So Rachael called her parents and they just came early and helped out.  I ended up sleeping fom 7-10:30am (we do presents after breakfast anyway) and then I had breakfast, we exchanged presents then I slept again from Noon until 3:30pm so I’m having to pass on the Christmas dinner tonight which is unfortuntate but there is not much I can do about it.

Things can always be so much worse.  I am truly grateful for what I have today.  I hope you are all having a good holiday.  I have updates on the vaccine (things are lined up) and I have an MRI all set up for the first week of Jan.  More later.

Cheers,

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DMV, Avastin and Physical Therapy

Chemotherapy 3 Comments »

Today I have the pleasure of feeling like I’m sixteen years old again and driving around with a DMV examiner sitting in my car, clipboard in hand and watching my every move to determine whether or not it’s safe for me to be on the road with the rest of the population.  My toes on my left foot are paralyzed – this could present grave danger.  Well, in all seriousness, I do understand the situation so it’s fine with me. 

I was thinking about it and figured it will be a snap but after second-guessing myself, I decided to go out to youtube and search on CA DMV Road Test or something like that.  Turns out they have a Top 10 Reasons You Fail Video list!  It’s not so bad – silly things but errors we all make every day as burned-in drivers.  Take a lane change for example - according to the DMV, if you don’t a) turn on your signal, b) check your mirrors (plural – rear view and side), and c) check you blind spot, you have commited the dreaded CRITICAL error.  Regardless of how well you do before or after this tragic error in judgment, you’ve completely blown it my friend.  Game over.  Done.  You have FAILED the test.  Huh.  I guess it’s not that easy after all?  Do you think I might be able to just tell them I had brain surgery so I left one of the steps out accidentally and I’m sorry about that?!  Probably not I suppose.

Quite seriously, I was astonished looking at this stuff because after decades of driving you just don’t think about everything in the way they really want you to.  So, back to the drawing board.  And, I don’t have a front license plate on my car but the list on the site says you better have one.  I’ll find it I hope!

The avastin seems to really be showing some results.  After my first infusion, I had physical therapy a few days later and we noticed that my gait was more improved.  The session after that showed even more substantial improvement – improved heel striking, less rolling, etc.  I’m walking more without the brace around the house and over the last week left the cane at home.  That’s quite a change in a short time.  My physical therapy appointment yesterday was also very good.  I’m just making steady progress and working hard but I can now see that since I’ve started the avastin infusions, there has been significant improvement at a much faster pace.  

As I posted previously, I had another infusion last week and will have another on the 30th.  My oncologist said that if you are going to respond it will happen quickly – you will show improvement in ways such as this.   When she first asked me how I felt after the first infusion I said fine – she asked me if I felt anything at all and I said “no?”.  I thought she was referring to side effects – she was fishing for this info. 

This is great news but also means we will have some decisions to make here soon.  Since it appears I am responding so well to avastin, do you try to fix what isn’t broken?  Probably not – meaning, do we pull avastin in favor of the vaccine.  I think everyone would agree that we should not do that.  So, the strategy would be to carry out the leukapheresis and use cryogenics to freeze this indefinitely if necessary.  If Avastin fails, we can pull the vaccine and implement it – for those of you that have been reading you are familiar with this whole strategy.

That is really all for now.  Today is Driving Ms. Daisy then I’ll finish up work tomorrow, hopefully with a driver’s license!  We’ll close the office around Noon so it will be an easy day.  I’ll be off for the holiday until Monday then it’s time for football.

The best Bowl game this year?  The ROSE BOWL!  USC vs. Penn State.  My prediction?  USC 31 Penn State 14.  That one is for you John Estes because I know you will be watching

For the record, I think USC would hammer the Sooners or Gators.  Too bad we can’t see one of those games happen – why can’t they come up with a playoff system?  Could you imagine if at the end of the NBA season a bunch of computers decided that the Lakers and Suns should play for the “NBA Championship” and left out every other team in the NBA??  All based on a bunch of metrics like strength of schedule, points for, against, their opponents’ opponents?  I could write an entire post about this, put up a system they could use, etc. etc. but alas, no time. 

Cheers,

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Drug Slows Brain Cancer, Calgary Researchers Say

Research No Comments »

This is the very type of research and discovery that we all want to see – that makes us hold on, push our lives out as far as we can.  Yes, we who have GBMs have the odds stacked against us but there are a lot of advances being made so it’s important to hang in there. 

I hope everyone is ready / enjoying the Holiday Season…

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CBS News: What’s Behind the Mystery Cancer Cluster?

Research 12 Comments »

As we all know, there is very little information with regard to the genesis of primary brain tumors / brain cancer.  Unlike most cancers, there are no genetic or environmental correlations that can be easily made to explain why we have been diagnosed with our disease.  Suffice it to say, short of blowing asbestos through a hose in attics as a career, you’re hard-pressed to find an answer.  And, as difficult as that may be to not have an “answer”,  it is comforting to know that there isn’t a lot of evidence to suggest your children will be subject to a brain tumor.  For a group of residents in a small community in Northern Illinois, they may very well have an answer for the cause of their brain cancer which leads me to a blog comment I received late this afternoon…

Someone at the “CBS Evening News with Katie Couric” left a comment and brought my attention to an exclusive they were airing tonight on the CBS Evening News about a brain cancer “cluster” they discovered in the small community of McCullom Lake Village in Illinois.  More than a dozen cases of primary brain tumors, some on the same street – adjoining neighbors – across the street neighbors.  Unbelievable.  Well, when I read her comment I certainly became more interested, particularly considering there is no solid science behind the cause of brain tumors.

First off, at a high level, I went out to the National Cancer Institute into their analytics database – I was simply curious about the national incidence rate of brain cancer.  One would think that it might step in line with the most populous states, yes?  It doesn’t.  Now, as a GBM survivor with the “you don’t have many years left” (yeah right) statements being thrown at me, I really don’t want to spend my time researching this, but I do find it interesting at some level that some of the Northeast and Midwest states have the highest incident rates.  It’s off the beaten path but take a look at this – it’s pretty interesting just to study for a moment:

12-15-2008-8-02-26-pm.jpg

The CBS story is taking this map and putting a pin in the upper right corner of Illinois – McCullom Lake Village.  There is no reason to paraphrase the story.  NOTE:  I had a link here but the story is now a VIDEO ONLY.  I am using CBS’s embedding code to embed the report below:


Watch CBS Videos Online

From my standpoint, this could very well be a case where you can tie brain tumor cause and effect together.  As the story indicates, you have scientists in the same hall all suffering from primary brain tumors.  You have residents on the same street suffering.  I volunteer through the NBTS and get emails from the newly diagnosed who are sometimes in other states – just looking for support.  These folks have a support group just among themselves.  Let’s also keep in mind – only 20,000 primary brain tumors are diagnosed annually – slice that up between Glioblastomas, Oligoastrocytomas and other types and this is not a coincidence – at all.  This is obviously my own, personal opinion.

This is not a “Love Canal” situation but in my opinion it’s close.  The fact is you have chemicals running under ground (the Love Canal involved some 10K+ tons of  toxic waste buried underground) and this was within striking distance of water supplies and a lake around this community.

The bottom line?  Who are any of us to think that anything around us may or may not cause various types of cancer.  We always hear reports about what to do and what not to do.  One day a glass of cab is great for your heart, the next day it’s the worst thing you can do!  It’s great to avoid what you can control – and we all should.  However, when you have a town of innocent, unsuspecting people who are just living their lives and a cluster of them are diagnosed with primary brain tumors, you have to stop and look at the environment.  For me, this is clear cut but unfortunately it’s going to take a lot of money, court battling and jousting and will drag some very wonderful people through some hard trials.

I applaud CBS for they have accomplished here.  In my view, the environment ties into this but I can only say this based on the circumstances.  Science needs to take over and prove this out but I think given the right authority to do so, this will come out right.

Lastly but absolutely the most important, I pray for each and every one of the brain tumor survivors in that community, that they obtain the care they need and that the courts prevail upon the appropriate parties to resolve this issue.  I pray that their families find comfort in the light CBS is shedding on the issue and that they feel that they aren’t fighting this battle alone.

If I can say anything to them?  You aren’t alone – I think you all know that.  I know it must be even more difficult to believe your brain tumor was caused by your environment but like all of us, we have today – it’s the day we were given so we all need to be grateful for what we have – a gift.

Mark

Remember the film Erin Brokovich?

I’d like to thank Kelly Rippin again for pointing this out to me.  Great story.

Updated:  

This is a picture of the Santa Ana River Jetties in Huntington Beach/Newport Beach, California that relates to several of the comments submitted.  You’ll have to read the comments.  I don’t know anyone else in my position however except for Michael.

jetties.jpg

Best…

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