Blogging in B Minor

A quick prayer request for Rachael. She has thrown out her back somehow so we are both walking around like we are in our 80s! With Rachael out, things at the house are difficult. The most difficult is lifting Keegan in/out of the crib. For now, we have a small step ladder and taught him how to go to the third step, strtech a leg over the lowered crib rail and in and then back to get out again. We just pull the ladder away when we leave. What a trooper!

She is getting some treatment from a friend of ours who is a PT. I continue to wake up most nights with severe pain shooting from my shoulder down my bicep and into my forearm. Rachael is the key though. She really keeps our family sailing! So please pray for her healing!

God bless,

Mark

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I’ve been looking around for some “brain exercise” or fitness apps/tools to just exercise it for sharpening.  I believe that it’s important, particularly with short-term memory lapses ocurring from time to time.  Looking at it as a muscle, it needs work.  For me and my various areas of focus, mental fitness is something that must be maintained as much as possible.  Just as going to PT, I have to exercise my brain.  I am fortunate to have the ability to work and do well but I need to stay ahead of the curve.

Ideally, I was searching for an iPhone-based app(s) so I could use them anywhere.  I targeted apps that would work on my cognitive training/endurance through various methods whether it be spatial recall, logical reasoning, etc.  I searched in the appstore and finally came across a great set of tools from Lumosity. 

The first, Memory Matrix is great. It’s simple but at 9-10 squares it’s challenging and definitely pushes mental fitness.  There are other features of the lumosity web site that I haven’t explored as I was mainly after these mobile apps but it appears you can track much of what you do, leverage online tools, etc.  Speedmatch is another one that is worth downloading or using online.

I’m getting ready to plan my next DCVax injections.  I’ll be doing this next week hopefully.  I’m feeling better – counts are better.  Still working against fatigue and having to work harder on PT.  I’m feeling additional weakness on the left.  These are all things that I can’t change although this run has been a bit tougher.  I certainly can’t deny that!  At the end of the day, however, it’s in God’s hands.  I’m following the path but it’s really not about me – He’s not done with me and I just keep seeing examples of that.

I’ll post about this later, but a gentleman at work just learned he has a brain tumor – a primary and based on what I see it’s a mixed glioma.  I’ve spent some time with him and he’s found some information here that has helped him.  I know I didn’t have someone, or many, to talk to in-depth about what’s next, how did this go, etc.  I feel that if he has to go through it, I certainly am there to help.  I’ve walked down the road.

Pray that all are well,

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I have posted for a few days as I’ve been doing pretty well!  I’m still trying to figure out the right balance of meds to manage my seizures – I had one on Wednesday – same type in terms of serverity, duration, etc. but we’ll need to find another combo of meds.  They don’t really concern me much.  If I were to be driving, I do have a warning so I feel ok but that is the only area that concerns me.  I found myself alone the other day when I experienced the seizure which is atypical.  I think it took me a bit longer to break out of it being alone but other than that things were ok. 

Something is definitely going right because my energy level is up and I’m feeling a lot better.  As a result, I’ve been busy just enjoying a productive day at work and coming home, playing with the kids and getting some respite from everything – the gamma knife, chemo and everything that’s been going on as of late.  I have a few projects I’ve started and am slowly getting back into the swings of things in different ways that have been difficult up until now.  Perhaps it’s the vaccine – we don’t know but I will have an MRI in a few weeks or so and we’ll really see what is going on.

That’s all for now…

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I went to my GP and based on everything we believe I have bronchitis or pneumonia.  Who would have thought?  NO idea about the headaches.  My blood pressure has been fine so that’s still a mystery at this point given the MRA was fine. 

To address the bronchitis I started a regimen of Zithromax on Thursday and have been down and out since then but slowly feeling better.  Today is actually the best day I’ve had in a long while and I’ll say I’m at 50% or so.   I made a decision that I just can’t keep getting up and going to work – I had to take some time to let my body rest so I took Friday, today and may also take tomorrow.  I just always keep going as I did during radiation and after my second surgery – I was back at work six weeks post-op.  I can’t keep doing it though.  My body is telling me to slow down so that’s what I’m doing.  I guess I’m stubborn – it took thinking and feeling the effects of a recurring grade 4 tumor, headaches, bronchitis and the aftermath of having a wisdom tooth extracted on top of trying to continue working for me to admit that I had to slow down!  So, some time off is good.

I have an appointment with my Neuro-Oncologist on Wednesday morning and we will determine the course of action which should be an Avastin infusion – WEDNESDAY.  I have to get back on treatment.  The clock is ticking and time is not my friend.  I am taking Valcyte but I need to be doing more – a lot more.  Also, the vaccine is there but we are working through very frustrating red tape.  Hopefully that is finished soon.

That’s it for now.  Thank you so much for all the prayers.  Everyone has been so supportive.  I think I just hit a streak of multiple issues here. 

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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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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!

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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. 

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Well, it’s been 8 weeks since I set foot in this building and I’m back to it! I have to say it feels good. I need some normalcy in my life and although I needed the time off to recuperate from my surgery and see how I was going to take to chemotherapy and radiation treatment, I was also needing to get back to having some structure in my life. I think Rachael and Aidan needed that as well. Tuesday was a big day – I went back to work, Aidan started school at a new school – Adventure Christian – and we started cutting back on our full time nanny which is significant for Rachael since she has had that help for the last 3 months or so, she has Keegan at home now and is taking Aidan to and from school.

My first day back was a bit overwhelming just meeting with my staff and gathering information. A lot happened while I was out – FY2008 budgeting, project planning for FY2008, etc. etc. but I’m pacing myself. I can’t be a hero here but need to get back into it. It was great to see everyone here too. I missed it. My world really shrunk for awhile, particularly in the beginning when I couldn’t drive or really much of anything. I was pretty much in the house which was NOT fun.

Things are good, looking up and I’m glad to be back. More to come.

Cheers,

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