Blogging in B Minor

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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I’m really getting back to a pretty normal life now.  My son Aidan is starting in on his first year on a soccer team, I’m coaching so I’m out there on Wednesdays and  Fridays with games on Saturdays that start in September and all in all being off of chemotherapy for 6 weeks or so (can’t really remember how long now!) has been great.  I certainly remember what it’s like – and when I was on it I just accepted life as it was – you have to.  But I’ll take this.

The only issue I’m dealing with is I’ve had some small focal seizures in my left bicep that are more like muscle spasms but my neurologist and I both agree they are not.  I could chase them with meds or just take an extra pill when they occur which is exactly what I’m doing.  They occur every once in awhile and are more of an annoyance than anything.  They don’t happen too often.  I had a period about a week ago where I had them over a 5 day period every day for awhile, some lasting for 30-45 minutes.  However, the instructions here are not like before.  Before, if they lasted more than 15 minutes it was “go to the ER” but because these are so mild I just ride it out.  One day I did take an Ativan and went to sleep.  Other than that, all is good.

We are going on vacation for the first time in a long time!  Heading to Victoria BC.  We’ll be gone for 5 days, just the two of us.  We haven’t gone away since we went to Paris and that’s been over 2 years.  Well, the last 2 years we’ve had a job change and major move, a high risk pregnancy w/bed rest, a brain tumor diagnosis with surgery, radiation, chemo, emergency c-section and first year with a newborn.  Kind of prevents you from taking a vacation!  So, I’ll post some pictures when we get back.  Victoria is beautiful.  I went there a very long time ago but remember it well.

That’s it for now but I’m feeling about as good as I did in May of last year before my surgery in June.  I’m playing some music when I have time.  It’s a bit more difficult with Keegan.  My studio isn’t as sound-proofed as I would like.  I’d like to move the whole thing into a walled off area in the garage which is a three car but it’s a big job and with what’s going on, I’m not sure it’s a good idea.

Cheers,

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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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I wanted to take a moment to post some additional information. After meeting with the neurosurgical team here at the Neuroscience Institute in Sacramento and discussing the situation in depth with my family, extended family and people I’m close at the church, we have decided to move forward with the brain surgery. It’s locked in for Friday, June 29th – a week from this Friday.

It’s been a very difficult decision to make. Most people in this position are not neurologically intact. They are experiencing symptoms of one kind or another that can range from severe headaches to loss of movement to seizures. In my case, I have been asymptomatic since December when I had a very mild seizure which was confined to a marching numbness in my left hand and forearm and some lack of muscle control in the left side of my face that lasted for about 10 minutes. I have had headaches but that has been the extent of it. So, because I stand the risk of taking a step backwards as a result of the surgery, it’s been difficult. The primary focus is my left leg. In a worst case scenario, I could lose the use of my left leg. If all goes as planned, I will have weakness in my left leg that through rehab, can be corrected. I will likely face some slight cognitive deficits that are described more as my being frustrated with not remembering, for a short time, how to do certain things. However, they are not too concerned about this – the major concern is motor function.

In spite of all of this, we are 110% confident in our decision to move forward. There are a number of reasons for this:

I have two dissenting opinions against the “watch and wait” strategy. One from the Chairman of the Harvard Medical School Department of Neurosurgery and one from the Chairman of the UCSF Brain Tumor Center. The last words from the Neurosurgeon at UCSF during my telephone conference were “Mark, do not sit on this.”

1. I cannot be told whether or not the tumor is benign or malignant
2. I cannot be told whether or not the tumor is spraying cells to surrounding brain tissue. There is no test that exists (P.E.T. Imaging, MRI or otherwise) that can detect this type of activity
3. We know that the diameter of this tumor is approximately 1.5cm, however, imaging cannot detect the depth. It could be cylindrical in nature.
4. I have been told it’s grade II, it could be grade III.
5. Brain tumors are more effectively treated earlier on than later – it’s a proven fact. I have been told from the start that we are out in front of this.
6. I have been told that surgery is inevitable at some point in my future – it’s only a matter of time.
7. I have been told that surgery alone will not resolve this problem. Chemo, radiation and perhaps a second surgery might be necessary. This is because of where it is located (in the secondary motor cortex and right up against the primary) which could make resection difficult or not possible and the potential grade of the tumor. If this is the case, we are obviously further away from the solution so why wouldn’t we start pushing the ball down the field now?
8. If we watch and wait, I will live day by day, month by month defying expert opinions and wondering what this is doing to me. Additionally, I will continue to wonder about the surgery, be living with the fear of surgery, deficits I will be facing after surgery, etc.

I could rattle off more but it’s not difficult to see that this builds an extremely compelling case for moving forward with surgery in spite of the inherit risks and potential deficits I may face resulting from the surgery. At this point, it’s about preserving longevity. We will balance quality of life with longevity. We will be aggressive but not so aggressive that I come out of this with significant deficits that result in my quality of life being substantially diminished.

I will likely have a post or two before this happens but this blog will obviously be dark for a bit. The focus has obviously shifted but it’s for good reason. Rachael and I know that God is in the middle of this, He will see us through and we have complete faith. He already knows the outcome. He has guided us through the process. I was just formally diagnosed in May after months of scans and fact finding. From that point, the speed at which we were able to obtain the opinions from Harvard and UCSF can only be attributed to God. This is the highest eschelon of the medical world and we have this information in a matter of several weeks.

We appreciate thoughts and prayers.

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