Blogging in B Minor

As I mentioned, the next step in the treatment process is to have an MRI performed which will show status on the brain tumor post-radiation/chemo. The obvious desired outcome is to observe shrinkage but in 90% of the cases the tumor either maintains the same state/configuration as before the treatment started or grows. My brain tumor is 25cc GTV or gross tumor volume. This means it is approximately 3.5cm or the size of a golf ball to put it in terms we can all envision easily. Surrounding the tumor is edema, or swelling which accounts for another cm or so. When looking at the radiation treatment plan, the IMRT portion of the treatment (5 of the 6 weeks) focused on an area that was 7.5cm in diameter. This is a fairly wide area but that was obviously by design – a Grade 3 tumor is infiltrative by nature so you need to build margin into the plan to anticipate the stray cells or “fingers” to the tumor that cannot be picked up via imaging technologies.

On Monday, October 1st I will have an MRI at around Noon. I will ask for my films (and a CD as I always do – for me of course) and I will hand-carry everything to an appointment at 3pm with my medical oncologist and neurosurgeon. We will put the film up and see where we are at that point in time. It’s all in God’s hands. He already knows where this is going and there’s nothing I can do about it. I’m doing what I need to do. I’m doing the research – handling the diet – the supplements that have proven to be beneficial, etc. etc. But in the end? You have to surrender it. The film, the tumor, how it looks, does it grow, is it the same, has it responded better than anyone could have ever imagined? It’s all in His hands. So, I need and have for the most part given it up.

I have always struggled with turning everything over to God. I try to and for the most part I can. But it’s like a ping-pong match. I’ll turn it over and surrender it but then my own way and will wants to rise to the surface and I’ll take it back. Turn it over, take it back and so on. It’s human nature really. But, to the extent I can realize and accept that I am not in control of this, and I am not, I am at peace. It’s worth remembering and really internalizing the Serenity Prayer here and the wisdom that comes out of this prayer! Accept the things you cannot change, pray for the courage to change the things that you can actually change and, most importantly, pray for the wisdom to know the difference between things in life you can change and those that you cannot. Clearly a brain tumor and how I respond to therapies, how it evolves, etc is not something I can change so what choice do you have? You can clinch your teeth and tighten your fists and fight this thing all day and night and the outcome will be the same. And, while I am doing all of this I am not enjoying today – I am missing out some important things in life.

What’s important? What’s important for me now is my family. What’s important is seeing my boys grow up. My wife being happy. And it’s bittersweet sometimes. I enjoy it and it makes me happy and feel so alive to take pleasure in simple things that I may have overlooked before but at the same time I become overwhelmed with emotion sometimes – and no, I’m not afraid to admit it. Those days are long gone and if you’re ever faced with something like this you’ll know what I mean. My defenses are pretty much gone. Case in point – the other night a really nice thunderstorm rolled through here – it was the first rain in months and it was a loud thundering type of storm with large raindrops – you know the kind! My son Aidan was all excited about it and wanted to go out in the backyard “to get all wet”! Sure bud, go for it! As I’m holding Keegan, all of 2 months old and looking out the window, I see my son Aidan who is 5, running through the rain, spinning around in circles and stopping under the streams of water that roll off of the roof. He would sometimes look up and squint his eyes, open his mouth and stick his tongue out to catch the drops in his mouth but would then get a chill and start running again with a giddy, silly laugh. It was almost too much for me. My eyes welled up. Why? I started thinking about how much I love my son and how simple this whole scene was – how much it meant to me. But also, in the back of my mind, I also knew what was happening to me and I’d be lying if I said I didn’t think about my longevity and if that image was going to be the lasting image I would have of my son. It becomes confusing, satisfying, heartfelt and sad in an instant. It is hard to describe and I am not sure that I could type words here that would justify it. Suffice it to say that this was a moment that I tucked into my bag of moments to save forever and then immediately took the other thoughts about my condition and turned them over to God. Turning it over. My original point. This changes you. This makes you look at life through a very different lens. This has really turned my life upside down but in a certain way I kind of like it.

Ok, so I have the MRI set up and that isn’t for another few weeks. Certainly when that happens I will have a post here about it. As far as the break from the chemo and radiation, that has been great. I have been feeling a bit under the weather up until yesterday but I’m feeling pretty normal now. I’m going to take a middle of the night feeding tonight to give Rach a break, take Aidan to a birthday party tomorrow and carry on.

Site Search Tags: MRI, brain tumor, God

Cheers,

Subscribe by Email RSS Subscription

Only have a few minutes but wanted to post a few pictures that I’ve taken over the past couple of days of Keegan. Aidan is very excited about being a big brother. Anyway, we’re doing good just trying to get Rachael’s energy back. She will be coming home Monday or Tuesday – just depends on how she’s doing. Keegan is doing well.

Site Search Tags: keegan, personal, pictures, picture, baby, Rachael, Aidan

Subscribe by Email RSS Subscription

What a night! I have no time to write this but I have great news. Our son was born this morning at 9:45am via emergency c-section and weighed in at 6 pounds, 7 ounces – he’s a month early! Mother and baby are doing well. Rachael woke up at midnight with another bleed – the second in 3 weeks or so. She’s been on bedrest as you may know if you’ve been following things here. It’s been quite a crazy ride here between her and I. I’ve talked about how the timing of my brain tumor treatment / surgery and the birth of our son have been in lockstep. Well, at least we have one out of the way now!

I ran her over to the Sutter Roseville Hospital last night at 1am or so. She was stable but had a second bleed at 5am and that was the end of the line – time to intervene so the team was assembled and they took the baby. We have a final list of names but as of now we haven’t named him! We thought we had more time! As I said, he weighed in at 6 lbs 7 oz which is really great considering he’s technically 1 month early. So far, it doesn’t look like there will be a neonatal situation to deal with. He had a bit of trouble with some breathing, some blood sugar issues but he is doing great. Mom is doing well other than dealing with the pain issues.

Here are two pics I can share. Thank you all for your prayers and support. This will give us at least some normalcy. Having Rachael delivered, off of bedrest and us on a road with our new son is something that although hard at first as anyone with kids knows, will only get better. Our son Aidan is thrilled!

Again, we thank everyone for your help and support as we have moved towards this day. Rachael being on bedrest coupled with my surgery and issues has made this time challenging. One challenge is now winding down.

Site Search Tags: keegan, c-section, rachael, aidan, bedrest

Subscribe by Email RSS Subscription

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,

Subscribe by Email RSS Subscription

This is off of the beaten path of music but deserves visibility. It is so moving and also serves as a strong reminder that regardless of your stance on what is happening in Iraq and abroad, our troops are simply called to duty and willingly serve us.

A friend of mine sent this to me and I was so moved that I had to post it here in my blog. It has received 9.2 million hits on YouTube. Take a few minutes and check it out.

Subscribe by Email RSS Subscription

A personal post – my wife Rachael and I took a trip back 2 months ago with our son Aidan up to the Lake Tahoe area to take him sledding. Having lived in Southern California up until last year, we never had the opportunity with busy schedules and such to get him out there to experience this. He had such a great time and was amazed. Anyone who has children knows the feeling of experiencing life vicariously through a child’s eyes all over again.

I recall sledding as a child – I could go all day long and never miss a beat and he took full advantage. I went on to do a lot of skiing and will certainly get him involved here in the next few years. Aidan will be five at the end of this year and now that we are in the Sacramento area and less than 2 hours away from some good ski resorts, it will be a nice diversion from the daily grind.

Subscribe by Email RSS Subscription