Home » 2009 » July

Quote of the Day:

I arise in the morning torn between a desire to improve the world and a desire to enjoy the world. This makes it hard to plan the day.
- E. B. White

My Previous Post

Brain Tumor Vaccines, DCVax 2 Comments »

My last post, regarding the healthcare system, was posted very carefully.  Of course, it was related to politics!  This will always pull some people’s strings.  Case in point  

I received one very long-winded comment from a  gentleman who was obviously very passionate about his position.  In the spirit of maintaining the mission of my site, I’m removing it and keeping the site on a steady course.  A lesson?  Perhaps.  I suppose I should have known.  A total distraction.  It’s a good thing I have a spam filter, otherwise a lot of people could have potentially jumped on it. 

Enough of that.

================

As for me, I’m doing pretty well.  My gait is not so well at the moment.  Therefore I’m being fitted next week.  The company that created my first brace is going to do this one – I’m looking to employ a different material – perhaps carbon fiber or something that is strong yet pliable.  Walking a few blocks with the existing brace just isn’t going to work into the future.  :-)

I’m going to start back on Avastin next week.  I only took 2 weeks off and that was to allow for the DCVax injection.  I’m still weighing out the seizure meds – the right combo is there.  Things are good though.  Today is good.  The kids are great – we’ll have some family time this weekend and enjoy it.

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Prayer Requests – New Feature

Blog, Christianity No Comments »

Over the past several years, I’ve been in touch with a countless number of survivors, caregivers, friends and family who have had prayer requests.  I wanted to provide an area here where you could make  prayer requests.  There is also a tab at the top of the site.  It’s set up as a running “comments” section. 

Regards,

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

MRI Results – July 2009 – WOW!!!

DCVax, MRI 10 Comments »

In a word, WOW.  If you’ve been reading my blog for some time, you know that we’ve had our share of not so positve news over the past few years.  We’ve learned to live each day (and are still learning) in the face of this disease.  However, this scan shows that the power of prayer, advances in experimental treatments and the tenacity of researchers, doctors and others in the medical field can yield results.

 I will cut to the chase first.  Here is a shot of what was on the monitor in clinic when we talked. 

3-side-by-side-sized-600.jpg

From left to right, we have the March 30th scan (2 weeks post Gamma Knife), the May 7th scan and then Monday’s scan, July 20th.  Look at all of the enhancement in the first and second scans.  The second, however, does show some evidence that some cells are dying in the center of the tumor.  Monday’s scan, however, is amazing.  No edema, no mass effect, enhancement has significantly decreased and the profusion portion of the test which I will get to is equally telling.  Needless to say, I’m VERY pleased with this result.  We have not had a report showing a decrease at all since this started – only stable or further enhancement.  What we have done here is hammered this tumor with an army.  There is nothing more satisfying in this setting than to see this tumor get pummeled!

Now for some additional details:

march-30-2009-w-and-wo.jpgmay-7th-2009.jpg

july-20-2009-w-and-wo.jpg

Again, March, May then Monday’s scan.  What a blessing.  This tumor, a grade 4 GBM is dying off at this point in time.  That is the situation TODAY – but see my previous post.  Let’s stay grounded here.

Finally – a test that is very telling is called a Profusion Test.  In basic terms, it shows the blood flow in and out of a tumor.  It looks like a heat map.  High blood flow is shown by yellow/orange and red colors – the closer to red the higher the blood flow.  The more blood flow a tumor receives, the more it can grow.  Tumors depend on high blood flow.  If the blood flow is low or cut off, this can help kill a tumor.  Many chemotherapies for primary brain tumors focus on cutting off the blood supply.    The vaccine as you’ve attacks the malignant cells and kills them.

Check out the profusion image:

 july-20-profusion.jpg

The circle on the left side surrounds my GBM.  Take note of the color and the legend on the left.  The profusion test shows DARK blue in the area of the tumor.  Another sign that my treatment is effective.

Finally, I decided this time I would just put the report up here so a) readers could see what an MRI report looks like if you haven’t seen one before and b) it’s easier to lay it out rather than repeat everything.  I just blocked out personal info.  What you should pay attention to is the “Findings” and particularly the “IMPRESSION” portion of the report.

july-20-2009-mri-report.jpg

It may be a little hard to read so my apoligies.  In summary this is great.  There is also no evidence of any grade 4 cells moving into any other areas of my brain.  I can’t pray or ask for anything better than this.  And, as always, I’m prepared for whatever comes my way.  It’s about today and I do the best I can to stay here.  I slip up – but TODAY is a good day and I have to thank God for this gift of healing.

 I will be taking 2 weeks off from Avastin.  I have been taking Avastin alone along with Thalamid.  I failed Avastin in the past – it just kept it stable but I had a recurrence in February that led to the vaccine and gamma knife in March.  I also failed Avastin + CPT-11.  Again, stability but no real progress.  I then started vaccine therapy (DCVax).  I believe these results are / can be attributed to DCVax.  I am also going to back off of Thalamid.  It makes me very tired and “loopy”.  It’s a slight risk but the next scan will tells us whether it’s been any factor at all in my treatment.  At the next scan we will have more info.  I had another series of vaccine shots yesterday so I will keep moving on.

I want to thank everyone who is praying.  This blog is my way of giving back and I can’t thank everyone enough for your continued prayers.  I’ve said that before and I hope everyone realizes that by praying for each other and creating a community of survivors, caregivers and friends who have this in common, we can find some sense of peace in sharing our stories.

I continue to urge you to use the comments section of posts to relate your experiences for everyone to see/read.  It’s helpful for everyone.

More to come….

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

The Power of Today

Brain Tumor Treatment, Inspiration 8 Comments »

How many times do we focus on the future and worry about the future.  As a brain tumor survivor, I struggle with this all the time.  I know many other survivors do.  Caregivers and family members alike have the same problem.  Much of this is human nature.  A great example is when an MRI scan is approaching.  It’s nerve wracking!  It’s difficult not to look at that date on the calendar and start wondering about the outcome of the scan.  Starting a new therapy – chemo.  How do you cope?  Seeking out people who have gone through it.  How will I do this?  Surgeries?  For me, my tumor is on the motor strip.  I was told I wouldn’t walk again.  I walk.  The goal, however, is not to catapult myself into tomorrow – nor is it to dwell on yesterday.  It’s staying in TODAY.  The moment.  The power of today.  I can’t change yesterday nor can I change what will happen tomorrow.  Yes, I can learn as much as possible about treatments but when I move into worry, anxiety and other negative thinking that is not helpful then I need to adjust and be present.

Let’s face it, whether you have a brain tumor or any other problem in life, all any of us have is today.  I can second guess what’s happened in the past but it’s gone and done.  I can also worry about the future but all that will accomplish is taking me out of the moment – I’m not present for my wife and children, my friends, God – even myself.

Steven Curtis Chapman wrote an amazing song called “The Miracle of the Moment”.  It’s worth placing the first two verses and chorus here in this post:

—–

It’s time for letting go
All of our “if onlies”
Cause we don’t have a time machine

And even if we did
Would we really want to use it
Would we really want to go change everything

Cause we are who and where and what we are for now
And this is the only moment we can do anything about

So breathe it in and breathe it out
And listen to your heartbeat
There’s a wonder in the here and now
It’s right there in front of you
And I don’t want you to miss the miracle of the moment

There’s only One who knows
What’s really out there waiting
And all the moments yet to be
And all we need to know
Is He’s out there waiting
To Him the future’s history

And He has given us a treasure called right now
And this is the only moment we can do anything about

So breathe it in and breathe it out
And listen to your heartbeat
There’s a wonder in the here and now
It’s right there in front of you
And I don’t want you to miss the miracle of the moment

—–

Pretty powerful, relevant and so on point.  Should’ve.  Could’ve.  Would’ve.  How unproductive but I find myself doing it.  And I pray.  The other question I ask myself is “Is this helpful?”  If it isn’t, I stop.  Sometimes it isn’t easy.  Having a relationship with God certainly helps – I pray for His will for me.  He’s the author of life.  He knows where this is going.  And as this song describes, it is about letting go – not just the “if onlies” but everything.  Living freely.  Living for today and sometimes, when the road is rough, living for the moment – the miracle of the moment.

I pray that we all can take life as it comes and not worry so much about our future.  It will play out as God has planned it to be.  If you are not a believer, that’s ok too.  Staying in today is for you, too.  I want to be there.  My youngest son Keegan turns 2 on Monday.  What if I’m all worried about my upcoming MRI?  I’m not going to allow that to happen.  Today is Friday.  I’m enjoying Friday.  I hope you are enjoying / have enjoyed Friday as well.

Peace

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

July 6 2009 Treatment Update

Chemotherapy No Comments »

I’ve been a bit out of touch but for good reason.  I’ve been extremely busy, both for pleasure and tending to medical responsibilities. 

It was a very busy week last week.  On Wednesday, I had lab work to complete in prep for Avastin on Thursday but have had vision issues due to meds.  I had a co-worker take me.  I have to lower a dose of one med I believe.  Today isn’t so bad.  I’ll be discussing that today and likely lower this dose starting tonight.  I continued with physical therapy in the afternoon.  My left side (primarily my left leg) is weak so I’m continuing to work on this.  I was far too tired to work out so I opted to receive functional electrical stiumaltion which sends electrical charges into the muscle in my lower leg and down into the arch of foot – an area I cannot move at this point. 

Also on Wedneday, Aidan and I had a 7pm event at the church.  Aidan spent the previous week called Breakaway at the church.  Waterslides, arts and crafts, etc.  This was an opportunity for the kids to show parents what they did for the week.  It was great!

On Thursday, I had an Avastin infusion in the afternoon preceeded by an appointment with my oncologist.  I had another appointment after that at 4pm.  Talk about being whipped!  It doesn’t sound like much to most people but those of you who deal with living life with a GBM can relate.  I’m still working and managing all of this plus of course trying to just lead a normal life but it’s at times.  By the end of most days, I’m pretty tired.

I hope all of you in the States had a great holiday.  We had a great time although I still struggle with seizures from time to time.  I had several this weekend but hadn’t had any for a week or so which is still much better than the every other day roadblocks I ran into in the past.  I’m still on the upward climb to the 6 month peak of the post-gamma knife bell curve related to seizure activity.  It is not unexpected for the seizure activity to increase in frequency and severity so keeping them at bay the way we have is a victory in my book.

So what is next?

  • Avastin Infusion on July 16th
  • MRI to be scheduled prior to July 22nd
  • DCVax on July 22nd

However, as I’ve mentioned so many times – the key for me is to stay in today as much as possible.  It’s not always easy but is something that I strive to do.  It’s all we have and is the only way to be present.  If I live in yesterday or tomorrow I’m no use to myself or anyone else.  Sure, I have be strategic with regard to my direction but I don’t have to stay there.  Likewise, the past is the past.  I can’t dwell on any past decisions.  The outcome of those decisions are done and they are exactly as they should’ve been.  I feel comfort in knowing this.  God knows where this is going and He is in control, not me – the doctors – no one.  This fact alone helps me each and every day.  I pray for His will for me and my family and although I may not understand it, I know that there is a higher purpose here.  Perhaps it is simply my testimony and it will help others.

I have told this story before but it’s worth repeating.  When I went through the “why me / why us” stage in the beginning of my diagnosis, there was a day that changed everything for me.  I was in the cancer center one day waiting for the elevator.  There was a little boy standing next to me with his mother waiting too.  The boy was about the same age as my son, Aidan.  I looked down at him and smiled – he smiled back with a big smile – joy in his eyes.  The absence of eye brows, eye lashes and hair made it clear that he had undergone significant chemotherapy and was battling cancer at the age of 5 or 6.  But how could a boy this age still be happy?  And how could life shuffle the deck and deal this card to him?  He hasn’t experienced anything in his life yet.  I thought to myself, “how many seasons this boy has in front of him that he may never live to see.  This is fair.  Why him?”  Well, needless to say, when applying this to my own, selfish thoughts of “why me” it changed my perspective.  “Why not me?” I thought.  What makes me immune to this?  Nothing.  Why are entire families taken out in car accidents?  Why do bad things happen to good people?  It’s hard to understand but there is a higher purpose.  It’s hard to wrap your head around and it still is for me, however, it’s easier for me to just turn it all over to God – He is in control, not me.  And, I do as much as I can to keep myself in TODAY.

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark
   © 2010 Mark L. Miller, All Rights Reserved
   www.markmillermusic.org / Site Map