Blogging in B Minor

I’m glad I have an iPhone.  As I was ready to leave today for my MRI at 11am, I looked at my calendar.  It was in there for next Thursday!  Sheesh.  I have a brain tumor – what’s your excuse?!

No big deal but thank you for all the prayers. Take 2 next week.

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Yesterday I had an MRI in the morning that was scheduled as a 30 day follow-up to my last MRI. The image to the left is the result. The yellow arrow represents the existing tumor cavity left over from my second surgery. The red arrow represents a new tumor that was found during the study. There’s no way to understand the grade of the second tumor based solely on MRI but presumably it’s also GBM and originated from the initial tumor. These tumors are infiltrative by nature and grow like weeds so you can stamp one area out but they have fingers and can pop up somewhere else. So much for my first day of being retired!

I always remember, there is nothing that can happen at this point that we can’t handle and there is always a solution that we can pursue. It’s never easy but we find our way. So once again, the wheels of medicine are often running. The first thought here is Gamma Knife and that is what we are going to do. It’s scheduled for Thursday morning. I have a meeting with my neurosurgeon tomorrow just to discuss the game plan and any deficits/risks of the process. The second tumor appears to be on the motor strip as well but in the specific area that controls my left hand. I had a seizure on Sunday morning and it was a little different than previous seizures in that my left hand was pulled into a fist and I started pumping my fist repeatedly. This correlates with the location of the new lesion.  I had Gamma Knife in 3/08 so this will be #2

As I have more information I’ll post it here. Thanks for all the prayers and support.

God bless,

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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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Update:  My surgery has been pushed to next Wednesday, October 15th.  There is one and only one reason for this.  We are seeking a cutting edge vaccine treatment that is formulated based on the brain tumor once it is removed.    The team is working hard to determine the best vaccine that we should administer and I’m performing my own independent research.  We will hold a meeting tomorrow after to discuss everything.  Having the additional week to locate this and strive for the most remarkable outcome is worth any additional growth that I may occur.

One such vaccine, CDX-110 sounds very promising.  In several studies, it has doubled survival rates.  You can read about the vaccine at the Duke web site which is one of the brain tumor centers we are in contact with. 

Another update is in our meeting with the Neurological team on Friday afternoon, my own view when I looked at the MRI scans were confirmed, this is grade tumor so we have to go for a total resection in this surgery.  Obviously there are risks here with regard to motor skills on my left side (mostly concering my left leg) but it’s something that it not debatable.  It’s really more of a mandate.  And, the surgery is step 1, followed by vaccine treatment and another treatment such as Accutane.  The good news is treatment side effects are nil.  This is not like going through radiation and chemo after surgery.  I may have to rehab my leg/arm which is fine.  Working 4 hours a day to regain strength – fine.

So, that is where we stand.  Preop appt today, touch base with Neuro-oncologist tomorrow and then we’ll go form there.   That’s it for now….

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I haven’t posted for a bit as I have been busy with work – putting in a lot of time lately.  This too will have to be quick but I’m going to go in this week and most likely adjust my meds again. 

 Yesterday I had a focal seizure that just wouldn’t go away.  I ended up taking 450mg more of one of my meds than I typically do in the AM (this occurred in the morning) and it still hadn’t subsided after 1 hour.  This one was in my left leg as opposed to upper left extremities so it’s in a different location.  Anyway, I took an Ativan which is pretty powerful so work for the day was done!  My co-worker agreed to drive me home which was so nice of him.   Even on the way home this just kept going so at this point it had been nearly an hour and a half.  When I got home I took one more Ativan, went and laid down and didn’t wake up until 3pm – everything was fine.  I think I mentioned that my Neurologist sees no correlation between these episodes and changes in the brain tumor.  I’ve done my own research and there are mixed theories.  It’s hard to know.  So, we’ll just follow up.  I have a functional MRI set up for the beginning of October which will I’m sure be very revealing.  Until then, all I can do is deal with things as they come.  It’s hard not to let your mind wander but as much as possible you just have to take it a day at a time…

 More later….

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It’s been awhile since I have posted – I have really been enjoying this time.  As I have said, being off of chemotherapy is great.  We don’t know what the future holds but we pray for the best and complete healing, have faith in that but also pray for strength, peace and God’s plan for us, whatever that may be.

One of the many blog readers contacted me about 3 weeks ago and she shared with me that her church is having a women’s conference in October.  She had purchased my CD at some point and it really inspired her which always shows me that the way He has used me and worked through me for this album continues to touch people which is amazing to me.  Anyway, she told me that she wanted the conference is entitled “A River of Faith” and wanted to inquire about how we could work together to provide all attendees (100+ or so) a copy of the CD.   I’ve worked with her and I’m going to do a special run and we are going to get this done.  She’d like to include the lyrics for the title cut (River of Faith) in the program which is great and of course fine with me.  I’m sure she’ll let me know how the conference goes and again, it’s amazing how my ministry is touching people.

How time flies.  Keegan is crawling all over the place and is pulling himself in the crib.  Of course cabinet locks are installed everywhere al over again (new house when we moved here in 2006) so he’ll be walking soon.

Next MRI will be October 6th.  This will be an FMRI – Functional MRI – a bit different.   When I had surgery last year this technology did not exist – only something called BrainLab.  This technology is much precise.  It will show, down to a millimeter or less, how involved the tumor is with the motor strip.  And, since I will be asked to move specific areas of my body during the scan (shoulder, arm, hand, fingers, etc), it will show what areas of the tumor (again, down to a millimeter) are involved in the motor strip, thus showing what could potentially be debulked and possibly be removed utilizing GammaKnife which typically requires a 3-4 absence from normal activities.One more note – my ANC is still low – not sure if I mentioned this.  It’s around 1200.  It will take 6 months for my immune system to fully recover.  You might recall that it got down to 900 so it’s only increased but 300 points.  A normal persons ANC is 3000 or so I’m still getting sinus issues from time to time. This next scan will be interesting.  

That’s it for now! 

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What a difference being off of chemotherapy makes.  You have to do what you have to do, no doubt about that, but once your dues are paid for that time it sure is nice to have the break.  I actually feel like a normal man for the first time in about a year.  I did ok on chemo.  I worked, I even worked during the last 2 weeks of my radiation treatments and went and had them during lunch hour.  I had fun with my family – went skateboarding with my son (something I hadn’t done myself in 25 years but picked back up like riding a bike) so it’s not all bad.  However, the fatigue is the most significant battle. 

Making a list on Friday for the weekend – just a to-do list and then following through and not being able to finish it was frustrating.  I would only partially complete a list and then have to take a nap.  Many times I was done for the day.  Sunday we would go to church in the morning and I could get a few more things done but would have to take another nap.  Anyway, just it’s something I just learned to deal with and accepted.  It sure is nice now though!  I’m starting to feel more energy which is great. 

As far as being immuno-suppressed, my doctors say it will be 6 months before my immune system is fully recovered from the chemotherapy.  I can tell – I’m still walking around with occasional nasal congestion and so forth but all in all things are getting progressively better.  Now it’s a matter of watching myself for any symptoms and scanning.  I’m going to enjoy life.  My wife and I were talking last night and there is always the anxiety that comes up – and the almost surreal feeling that this is all happening but things happen to people all the time.  We are pretty much over all of that part of it.  The real anxiety that we struggle with still, we realized, is more acute and is around MRI time we have gotten more used to dealing with it over time.  We’ve been doing this for nearly 2 years now and it’s been over a year since my surgery.

That’s it for now.  We’re going to Victoria, British Columbia on a vacation here soon.  Our kids will stay here with their grandparents so it will be nice to get away.  It’s the first time we’ve really had a get away since we were in Paris several years ago and that seems like an eternity!

Will check in soon here..thanks to all of you who have sent emails and well wishes.  As always, they are so much appreciated!

Cheers,

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