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Quote of the Day:

It is cruel, you know, that music should be so beautiful. It has the beauty of loneliness of pain: of strength and freedom. The beauty of disappointment and never-satisfied love. The cruel beauty of nature and everlasting beauty of monotony.
- Benjamin Britten
Jun 19

Latest Information…

Brain-Surgery, Medical Updates 1 Comment »

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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Jun 13

Personal Update

Brain-Surgery, My Story 5 Comments »

Well, I haven’t written for a bit because I have had a lot going on here. It’s been, in a word, a firestorm over the past 7 days or so so this will not be a cheery post.

As you know I have been dealing with a primary brain tumor diagnosis and have been in a “watch and wait” strategy as recommended by the Neuroscience Institute and my Neurosurgeon here in Sacramento. Once I received the diagnosis, however, it was time to move into action and assemble an A team for additional opinions. So, I first enlisted the help of the University of California San Francisco Brain Tumor Center and the Chairman of the Neurosurgery Department. Additionally, I was able to enlist the services of the Chair of the Harvard Medical School of Neurosurgery – by the grace of God the best that medical science has to offer in my view.

UPDATED: UCSF came back with the first of two additional opinions. They were on the opposite side of the fence of the institute here. They recommend surgery asap and say that this is an evolving tumor and that I should not sit on this. The Chair of the Harvard Medical School Department of Neurosurgery has come back with his opinion and he concurs with the UCSF opinion – surgery. It’s now time to sort all of this and make some decisions. The timing of all of this is critical as noted below because of my wife and I expecting our second son in early August.

It’s risky – it’s located in the supplementary motor cortex, an area of the brain responsible for complex motor skills included two-handed movement. As a musician, I’m obviously frightened for a multitude of reasons. Meanwhile, the team here is having a conference this week consisting of neurosurgeons, neuroradiologists, neuropathologists and other specialists to review my case again in light of the dissenting view from UCSF. I will go in late this week for a clinic to discuss strategies, risks and other details associated with the entire situation.

More to come.

Secondly, my wife Rachael and I are expecting our second child – a boy. She is 31 weeks pregnant. The news from UCSF came on Thursday night. Less than 24 hours later, on Friday morning, she had a major complication with the pregnancy and I had to rush her to Labor and Delivery. It was really touch and go for a bit. Once we arrived they hooked up the telemetry and our baby was thankfully doing just fine – heart rate and everything was great. After a period of time, the situation was stabilized but they needed to keep her overnight for observation. She is now on modified bedrest which is really bedrest – 8 hours a day she needs to be off of her feet and when she can be on her feet, she needs to be around the house and can’t be doing anything major. So, we have a full time nanny in place because we have our 4-year old, Aidan, at home and are also receiving SO much support from our small group through church. It’s amazing – our small group leader Sarah immediately started circulating meal signups and we’ve had dinners delivered every other night since this started and the support that has been sent our way has been overwhelming. Of course our families have also been a tremendous source of support and God is in the middle of all of this. Rachael is doing great but with her due at the beginning of August and a potential surgery looming for me in the near future, these two events are now in lockstep with one another.

It’s a very difficult time to say the least.

All in all, things are going ok in spite of the news. The fact is, with my health situation, you have to be your own advocate. Is it hard – absolutely. It’s not easy facing something like this at all. Psychologically, spiritually, emotionally – it’s draining on all fronts. However, you have to try to be strong and remain positive, hopeful and upbeat as best you can. If you read the Album Review tab I talk about the background of River of Faith and it really sums it all up quite well from my perspective. And on the CD itself, it sums it up in one verse from the bible:

Hebrews 11:1 – Faith is the confident assurance that what we hope for is going to happen. It is the evidence of things we cannot yet see

CDs will be on CDbaby.com in the next week in spite of all of this. I only have a limited number to start but I will be having a friend take over the account, replenishment of stock, etc. I will try to publish a new web page on the site with a buy button as well as place a post here when it’s ready but you can also just do a search on CDbaby and find it.

Cheers,

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