Blogging in B Minor

My MRI came back as stable disease again!  Needless to say I am so happy.  My Neuro-Oncologist has indicated that to have stable MRIs like this is a great sign.   Considering I have been tracking this since 12/2006 and I intervened in 6/2007 by choice with surgery, IMRT radiation and now 6 months of chemo and a very deliberate, well thought out set of supplements, I feel very good about the plan and path I am on.  A grade 3 tumor is an aggressive tumor and that coupled with a 0% resection – well, I felt that my odds were stacked out of the gate but I didn’t hold on to thought for long.  I’m here and by the grace of God we’ll continue on one day at a time.  And I’ve said it before – the tasks ahead of me are never greater than the power behind me.

 It’s getter late for me given my fatigue lately (who would think that 8:30pm is late!) but I’ve been sleeping a lot for the last 3-4 days.  But thank you SO much for all of the emails and the several comments posted here – your thoughts and prayers mean everything and they absolutely make a difference.  Thank you Thank you!!!

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As of last night, I took the last of my Temodar to reach the 6-month mark which is the official “standard of care” if you will.  I guess it’s a meaningful milestone in that most of the brain tumor centers including UCSF will recommend this regimen because patients have had the highest degree of success addressing their brain tumors by first having surgery if possible, then b) utilizing IMRT radiation or some other form as appropriate and then c) chemotherapy.  For me as you might have read in previous posts, I had surgery which resulted in only a biopsy due to the location of the tumor (straddling the primary motor strip) and then followed that up with 5 weeks of concurrent IMRT radiation and chemotherapy using Temodar.  I then took 4 weeks off and subsequently started pulse therapy using Temodar on an alternating weekly schedule (7-days on / 7-days off). 

I have another MRI today so could again use your prayers.  I have continued to be asymptomatic.  I had a strange episode about a week again with my vision – an object (my dress shirt hanging in the bathroom) seemed to suddenly “zoom in” although I was 5-6 feet away from it.  I had to grab on to the wall to maintain my balance.  It was a little bit strange but I’m not sure I can really attribute it to anything.  Taking the Temodar and also anti-convulants, etc. – it’s hard to say.  But this is why I have MRIs so close together.  We need to track everything.  It’s been stable all along so we’ll continue to look at it. 

I will likely continue on Temodar for another 6 months.  On one side of the coin, it seems difficult to take chemo for the same amount of time in front of me that I’ve already been taking it.  However, this is what is going to help me manage this for now so I look at it positively.  The only drawback is it does take its toll.  I believe there is a cumulative effect that builds up over time and you become increasingly more fatigued.  What can you do though!  You accept it, you keep going.  But, you have listen to your body.  I was very tired this weekend.  I needed some time to just rest.  I slept a lot at night – like a full 10-11 hours and sometimes that is just what you need.  I’m pretty tired today too.  I kind of go through phases like this.

We’ll see how everything goes later today – it’s in God’s hands – all of it has been and will be.  I have an appointment with my Neuro-Oncologist tomorrow and will review the MRI in detail but I typically get a prelim before that. 

More to follow!  I hope all of you had a great Easter.

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It’s been a bit more difficult to get to the blog with so much going on. Work has been really busy for me which is a good thing! I’ve been really busy – in fact, this is busier than things have been for quite a long while. I’m just about finished with a song. I know I have said this for awhile now! I have a few that are in the bag musically but I just didn’t feel it. I think I’ve talked about my digital graveyard before? It’s a place where songs go that just don’t seem to go anywhere. Sometimes they are just chord progressions and other times, as in two cases here, they were fully produced pieces with drums, bass, strings, guitars, grand piano, etc. etc. and I just didn’t feel like they were going anywhere for me. Perhaps it was going through treatment? It doesn’t exactly put you in a hugely creative mood, however, songwriting isn’t something you can force – either a song comes or it doesn’t.

Well, I do really like the sound and feel of the one I’m chipping away at now. The music is nearly finished so the grinding part will start with lyrics and vocals. For many songwriters and me included, it’s the hardest part. A songwriter once said “my favorite part of writing a song is the beginning and the end” and it’s so true! You are inspired in the beginning and once you are done it’s a great feeling to sit back and listen to a finished piece (providing you didn’t cut corners and slam it out), but the grind can be tough. Anyway, when it’s done I will post it here.

So I’m still dragging with fatigue. Seems that each week I come off chemo it takes 3-4 days to feel sort of normal again. It’s just the cumulative effect I think. Not much that can be done that I already am not doing with regard to diet, supplements and the like. I finished cycle 4 as of the end of this week (I’m off chemo this week which is the last week in this cycle) so I’ll begin cycle 5/6 on Monday. Once I get done with 6 I’ll have decisions to make. It will be a difficult proposition for sure. Many of the other drugs are as or even more harsh than Temodar – and discussion centers around adding one in addition to Temodar possibly. Of course one option going off of chemo completely and seeing where we go. Lots of options and we will deal with that when the day comes.

My next MRI is this coming Monday so I could use your prayers. So far, all of them have come back stable – praying for the same or better results here as well. I am tracking this serially every 60 days and my last MRI was at the beginning of December.

Our small group is going through a GREAT study right now on living the life you always dreamed of living. The book that we are reading is amazing. I was reading it last night and the author was telling a story about giving his kids a bath and how his daugther is just filled with joy for no reason at all – she’s a little kid and every moment of the day, for the most part, is joyous. He said that when she is filled with so much joy that words cannot express how much joy she feels, she just dances around in circles. They call it the dee dah day dance because she is so filled with joy that she has had a dee dah day. He goes on to say that one night he gave her a bath and when she got out of the bath she was doing this dance and he’s asking her to come over to dry her off and she’s laughing, dancing and he’s saying come over here – hurry, I need to get you dry – and he starts getting frustrated because she’s twirling, running away and doing this dance and finally with a more stern voice he says “please come over here, we need to hurry and I need to dry you off”. Then he said that she asked the most profound question: “Why?” The point he made and what struck me is that our lives are lived by timetables, when is the next meeting, where do we have to be, what is next, what happened last, etc. and as a result, we miss out on the joy of now. He said that after she asked that question, he got up and did the dee dah day dance with her and they just took their time. What a concept huh? For me, I have done this exact thing with my son in the bath – we need to hurry, it’s time for bed, gotta get out, blah blah blah.

Anyway, this is a great study for us. Again, I could use your prayers for Monday and by all means please continue to email any requests you have.

Best,

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The preliminary MRI report came in and the brain tumor is unchanged and stable! This is great news for me. As I’ve mentioned before, shrinking a grade 3 tumor is unlikely so management is the realistic goal. If I can have scans over and over again that are stable and unchanged, that would be a blessing. I have been asymptomatic and things have been moving along nicely. This obviously makes moving into the holidays that much better!!

Secondly, I am getting over this awful cold. It’s been one of the worst ever but that is, in large part, due to my embattled immune system. My wife and son got over what I believe was this same cold in 48 hours. It’s taken me close to a week and this is the first day I’ve felt half-way decent. It’s just part of what I have to fight against. However, I met with my oncologist and we are going to postpone my chemotherapy until Monday night. I was to start last night but I need to have a few more days to get my body back into decent shape.

The meeting with my oncologist was fine. There was nothing eventful that came out of that. We talked a bit more about everything and future approaches but in light of how I’m responding so far to Temodar, we’ll stay the course continue with our plan.

I appreciate all the thoughts and prayers. All of us with brain tumors kind of band together around MRI time, don’t we! It’s a great kinship we have and I appreciate the prayers.

Site Search Tags: brain tumor, chemotherapy, god, my story, oncologist, temodar, tumor

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It’s time for my 60 day check so I will have an MRI tomorrow morning at 8:00am. As per usual, I’ll hand-carry the films for an 11am meeting with my neurosurgeon and oncologist so we can discuss the outcome. I have some anxiety but as I’ve said before and believe in my heart, it’s all in God’s hands. There is nothing outside of everything I am doing that can change the outcome. I think it’s only human, however, to have anxiety about it. This will be a clearer view than before. The MRI on October 1st was right after 6 weeks of daily chemotherapy and 5 day a week radiation. Even though we are certain there was no enhancement (the tumor was quite stable), it is still difficult at that stage to get a clear picture of what is going on what with everything that area of the brain had been subjected to in a short period of time – surgery, radiation, chemo, etc. This MRI, although I have been through chemo treatment for 2 cycles, will be clearer.

The cold I have had has turned into a really bad cold. I was home yesterday and today. One of the worst colds I have had in a long time. I’m not sure if it’s because it is truly a bad cold or if it’s because my immune system is weaker because of the cancer and chemotherapy and as a result it’s hitting me hard. Maybe both. Nonetheless, when I see my oncologist tomorrow she may delay the start of my third cycle – we will see. A young boy was here on Saturday to play with my son and after he was here for about 10 minutes I knew I may be in for it – he had kleenex and was wiping his nose. We have told people and I am careful about exposure. I kept my distance, Lysol’d the door knobs and everything when he left! Well, it was to no avail. So, I’ll get through it but it’s something else to deal with when you are going through chemotherapy.

The last thing that has been just a bit strange lately is this sense of deja vu’ I have been feeling It was Christmastime last year that all of this started. At this time last year, everything was seemingly normal although we all know this was in my brain and I didn’t know it yet. It was the Wednesday before Xmas when I had the symptoms that we determined later to be a seizure – numbness in my left hand and wrist, a slight droop in the left side of my mouth. That is all I ever presented with – but it led to this diagnosis and I’m glad it did. If I didn’t have those symptoms this would have just grown unknowingly in my brain and knowing everything I do now, and the type of tumor this is and how it evolves, I would have likely been diagnosed with a glioblastoma multforme by the time it was detected which is what happens in the majority of the cases. So, the Holidays are a bit different for me now but are still a happy time to spend with family. I’m not the type to let an event or circumstances over shadow things.

That’s it for now. I’ll post results of the MRI on Friday or over the weekend depending on when I have time and what they are. I appreciate everyone’s support…

Site Search Tags: brain tumor, chemotherapy, mri, seizure, gbm

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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…

Site Search Tags: brain tumor, chemotherapy, imrt, mri, oligoastrocytoma, radiation, songwriting

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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,

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