Blogging in B Minor

As many of you know, I had an MRI yesterday that gauges the state of my brain tumor after 6 weeks of radiation and chemotherapy. I was quite nervous about it for obvious reasons. Well, the good news is that the tumor has not increased in size so this in itself can be viewed as a victory. Of course we were praying that the treatments would result in shrinking the tumor but realistically, this doesn’t typically occur. In 90% of the cases, grade III oligoastocytomas either maintain their current state or they continue growing as they are resilient in nature and quite insensitive to treatments. In terms of which treatment is responsible for stabilizing the tumor – it’s impossible to determine that and we don’t know if any of the treatments can be credited for the results to date. From December 2006 through June 20th, the tumor behaved like a low grade tumor. Therefore, it remains to be seen whether or not it’s chemo-sensitive or not – meaning, will it respond to chemotherapy alone or not. All I know is that I’m eating right per a well-developed diet, taking a regimen of supplements that I researched very carefully including some that are a bit out of the ordinary (e.g. Graviola Extract – derived from a tree grown in South America and studied in the US as it is thought to contain cancer fighting agents), remaining as positive as possible and most importantly praying.

So how does a brain tumor look on MRI film? The image here shows the tumor identified by the red arrow. It’s in the upper right lobe of the brain so you’re looking head on at the image. I’ve seen these slices a million times so they really don’t phase me at this point. Seeing it for the first time and thinking back to that day can still haunt me from time to time. The tumor is about 3.5cm in diameter or expressed in another way, 25 cubic centimeters.

The discussion yesterday was straight-forward in many respects but was also sobering as per usual. My white cell count is low – still lower than the normal range – a result of the chemotherapy. I need that to hopefully recover. The next step in my plan is to start chemo maintenance. What this will entail is 6 months of therapy with scans every 60 days. There are 2 differences with the chemotherapy however. First of all, the dose I will be taking is more than 2x the dose I was taking for the 45 day period post-surgery. Secondly, I will be taking it for 5 days each month and then will be off of it for the remainder of the month. It would be difficult for your body to endure much more than that. The dose is automatically calculated based on body surface area – meter squared so it varies by individual but for me it will be somwhere in the neighborhood of 300+ mg per dose. I will have to see how I take to side-effects. Since I did fairly well before, I have every reason to believe it will be ok this time around. Only time will tell. I will begin the first round of maintenance therapy on Thursday, October 11th.

We talked about radiation side effects – longer term. Perhaps around a year I may experience some effects that will manifest themselves in ways such as forgetfulness. She suggested that I use a “planner” and a medicine organizer! Well, anyone who knows me knows how organized I am. I use Outlook, have a Blackberry – yes, a pill organizer, am never late for an appointment but no I don’t keep my pencils all lined up on my desk thank you very much! Anyway, in all seriousness these are the types of issues that don’t sit well with me but I have no choice. The partial brain radiation was something I had to do. We talked about “when” the tumor starts to grow. What would our game plan be at a high level. The problem with grade III tumors as she explained, and I’ve done enough research as you know to keep doctors honest to know she’s on the up and up, is that they are incurable. She looks at grade III and grade IV as the same from a “cure rate” perspective – you can’t accomplish that. You can manage them, but you can’t extinguish them so-to-speak. So, we talked about alternatives at a high level and the balancing act you have to play that centers around the therapies you choose, the quality of life you want to maintain and the risks associated with the therapies. Some therapies may be very promising and help but have serious, potentially life threatening risks such as pulmonary embolism. Others, such as stronger chemotherapy options, require you to go to a hospital each day and hook up to an IV. Do you want to do that and take time away from being with your family? What is the return you will achieve? Can you guarantee a return? All questions to be considered. However, we aren’t even there yet but these are issues we may need to deal with later.

For now, I suppose I should be happy with the results and I am – I’m certainly grateful this has not grown, there are not any other lesions evident or other issues that certainly could present. There is still a part of me though that has a hard time hitting each of these milestones as it were, passing them and wondering where I go from here. Where I really need to be is not worrying about them at all. Getting to the point where I just “live with it” and my life is “normal”. My life will never be normal again so redefining my definition of normal is the difficult part. I am learning how to do that but it’s not the easiest task to accomplish. I think that is probably the most difficult aspect to all of this now that I really think about it. Before, I just moved along in my life. A problem was any number of nuisances that occur in our daily lives. That all changed on December 20, 2006. Those “problems” now are just side tasks that are child’s play and are handled quickly and efficiently. Once I started down this road, the definition of a problem changed – now the real problems and work are associated with this issue – something so surreal sometimes that it’s hard to wrap my mind around it. And finally, as I’ve walked down this road – and there is a long road ahead, I am learning that I can look at my disease as a problem or an opportunity – an opportunity to live life to it’s fullest with a different perspective, an opportunity to help others as best I can with this disease, an opportunity to do all of the things I want to do with my son, my wife, my family – that we don’t perhaps think about because we just take life for granted – that “we have so much time”. And we really don’t even think about it. I don’t know how much time I have. But there is one thing I do know and it’s that I’m not going to be wasting my time on insignificant activities or things that don’t make sense to be doing. You get the picture.

Once again, we appreciate everyone’s support and prayers. You have been amazing. All of the emails I receive – the friends we have – the family we have – all blessings. I will write more when I have time and as things start to get set up for the maintenance therapy. On a small side-note, I’m also in the middle of a new song – it’s more of a rocker! I guess I’m getting some of my frustration out of my system. It almost has kind of a Daughtry/Nine Inch Nails sort of sound to it – very different for me! Nothing wrong with checking out different avenues. Heavy Les Paul distortion guitar, a solid drum track and some background synth tracks that are more in the techno vein. We’ll see where it goes….

That’s all for now…

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