Blogging in B Minor

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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It has been really nice receiving emails from so many people finding my site. It feels good to give back. I’m at a point in this journey where I can give back now that I have gone through surgery, radiation w/concurrent chemo and am now on pulse therapy going into cycle #3. More significant, as I have found out looking back, is what you go through emotionally and spiritually. I have writtten that my album, River of Faith, is all about that – the songwriting took me from struggling with my circumstances to ultimately accepting them, surrendering and having faith and knowing that God’s plan will carry me through. Being able to share this testimony, even at this point with others who contact me, feels good.

I have received emails from people recently diagnosed and just beginning – people wanting to know what it’s like. I have received emails from folks having a hard time coping and just reaching out to someone else that shares their circumstances. I have communicated with solution seekers like myself – wanting to find information, research documents – whatever it may be to enhance the treatment plan. And, I have received emails from people who just are happy to find my site. You know how good that makes me feel? For a guy who just put up a site about his music – markmillermusic.org – and then added a little /blog to it which evolved into a platform to about primary brain tumors – it’s great. And for me, giving back and helping other people helps me.

On the personal front, things have been pretty good here. I’m still good in terms of being out of the radiation side effects that I was feeling up until mid-November. I do have a pretty bad cold right now which isn’t good when you are on chemo – I need to talk to my neuro-oncologist and find out if we still start up again on Thursday or not. My blood work has been great all along but typically if you have a cold or flu, it’s questionable whether or not you postpone until you are a bit better. We’ll see.

I’m due for an MRI – it’s a 60 day check. This will be the second that I will have had post radiation/chemo over that 6 week period. It should be much clearer than the first. Obviously, the key again is management and to see if it is stable. I have some anxiety but it’s in God’s hands. What can I do? Not much. I’ve prayed and followed the treatment plan! So, that is that. I’ll get into the tube as it were and we’ll see how things are.

That’s it for now but all the emails are great. I’m glad you find the site and information helpful.

Site Search Tags: chemo, radiation, brain tumor, temodar, mri, God

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Quick Post – I received the dictation yesterday and Dr. Mitchel Berger agrees that the tumor appears to be quite stable and at this point the therapy using Temodar for the 6-month period which is the standard of care is the best course of action with scans every 60-90 days. He didn’t have any other observations other than to continue to watch this very closely. That is great news of course to have them concur with the findings on this end. Dr. Berger didn’t feel that it was even necessary to have the tissue analyzed by the UCSF pathology lab. It was a good report.

I’ve been fighting a flu or something – I had the chills over the weekend and a fluctuating temperature so I did a battery of lab work because if I have anything going on it could delay my next round of chemo due to begin Thursday night. I should have results back shortly. I’m starting to feel better but the weekend wasn’t so great. It’s harder to fight things off when your cell counts are down to begin with.

Other than that things are good. I’m just moving forward with the program. I’ve played some music and actually have the music for a song in the bag – it has been for 2-3 weeks and I mentioned it in another post. It’s more of a rocker but I haven’t had any time to write lyrics let alone cut vocal tracks. I’m not too worried about it though. My priorities are a little different at the moment!

Site Search Tags: brain tumor, chemotherapy, mri, pathology, chemo, temodar

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For some reason I hit a wall yesterday. I’m not sure why but it is eerily reminiscent of the way I felt on several occasions while going through radiation and taking daily chemo. I feel fatigued and have just a general malaise. It’s hard to describe. It feels like you have a flu but not so bad that you have to lie in bed all day? That’s the best way to describe it. Perhaps delayed radiation effects but based on my discussion tonight it’s more chemo-related. This is the tough part – as long as these side-effects are few and far between, I’m okay with them. If they started becoming more consistent, I’d have to start evaluating them in terms of quality of life. What return are we getting from the Temodar – by taking it for six months vs. how it’s impacting my life because for the 2-3 day period this hits me, it’s unpleasant enjoying life is not easy to do. Anyway, it’s not an issue now so I can fortunately table all of that. For now, I’m just pushing through this short period and maintaining life as normally as I can. No calling in sick for this guy!

The UCSF film review will take place tomorrow and although I shouldn’t be anxious about it I do have some anxiety. The last time I spoke with Dr. Berger I was quite surprised – I expected him to concur with the Tumor Board here in Sacramento and of course he had a dissenting opinion and before I knew it I was having brain surgery. I do not think anything like that will be happening tomorrow at all! Surgery as I now know leads to hemiplegia, however, if he sees growth where others have not I have a new ballgame on my hands. I will post results when I have time.

I met with my oncologist today. It was a positive meeting for the most part. We discussed the current course of treatment and future strategy – perhaps adding another chemotherapy drug and taking a cocktail approach. There is a theory that you attack primary brain tumors by throwing a combination of drugs at them to more or less keep them guessing to keep it in simple terms. There are drawbacks in terms of side effects though. One issue is that you trade one evil for another, such as Leukemia. Chemotherapy drugs can result in a secondary cancer in some cases. This may not happen, and if it does may not happen until down the line but it could. What choice does one have really? We talked about the merits of continuing the current course longer than six months. There are studies related to how effective the drug can be after six months.

All in all, it was a good discussion. I will get a CBC at the end of the fourth week and if my blood work looks okay, I will start on my second cycle.

It’s late (yeah, 9:45pm is late for me!) so I’m going to bed. Well, if you have to take chemotherapy pills you just take them and go to sleep as soon as you can! It’s something you adapt to…

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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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Well, the day has come that I have finished the 6 weeks of daily chemotherapy (46 doses) using temodar and 33 IMRT radiation treatments. The next step will be to take an MRI snapshot and see where we are compared to previous MRIs. I have to say that the daily trips for radiation are certainly a grind but at the same time, I looked at everything in a very positive light – this was a necessary course of action for me. I couldn’t resect this tumor at this time so pulling out the chemotherapy and radiation treatment cards and playing them concurrently from the beginning was my best approach. Regardless, it is nice to shed myself of the daily trips Monday through Friday to the institute, be strapped into a table and have a linear accelerator run around my body! Additionally, I took chemotherapy pills daily every evening. I will be taking 4 weeks off from that.

Once the MRI results are in, a treatment strategy will be set. Barring some very aggressive growth which would result in surgery, stereotactic radiosurgery or some other intervention, I will probably end up with a recommended treatment of chemotherapy in the form of “pulse” treatment. What this means is I will go on a cycled plan wherein 1 cycle equates to 1 month. For each month, I will take chemotherapy (Temodar) for 1 week and then be off of the drug for 3 weeks. I will do this for 12 cycles or 1 year. They will take MRIs every 3 months or so and we will see how the tumor is responding to the treatment. If we see growth, it will be time to look at alternatives. If it is stable, then we stick with the program. Also, the dose during the week on is more than twice the dose I have been taking. It’s based on square meter of body surface. The dose during the 6 week period was based on body weight. For me at 175 pounds I was taking 145mg of Temodar. So, it will be interesting to see how I take to a dose that is more than twice that dose. I did ok with this does but more than twice the dose will be a new test.

So, this part of the journey comes to an end and the next segment begins. It’s a journey and that is how it all has to be viewed. At this point, most days are filled with a positive outlook. I still have days that are difficult. Those days are becoming fewer and further between. More to come on this front.

Still playing music and working on new material – just going very slowly at this point!

One final note, I have noticed the usage of the blog here building. All of you coming seeking information related to brain tumors – I will be adding a lot of content to the blog shortly that is a result of all of the research I have done. I have a few binders full of data – this is how I am by nature. It’s only fitting that I get it out here for all of you to use. I have looked at statistics and it’s amazing how many people have landed here – from so many places. Sweden, Australia, Canada, Germany and of course the USA – and the searches are all over the board related to brain tumors, chemo, radiation, every “type” of brain tumor you could imagine. What I am finding is that this blog is popping up on page one of many of these searches. This tells me that either my site optimization is really really good – maybe?! – or, there is not a TON of information out there in layman’s terms. Plus, what I found is that there is a lot of clinical information but not a lot of information, in one place, that really chronicles someone’s journey through this strange new land – and it’s strange for me and I’m finding my way as I go. There are books out there that I have and am reading. There are also web sites where you can start a journal. But since I have my own site and have development and IT as a background, I’m going to build this out so that the breadth of information and research I have done and boiled down to simple content will help.

More to come with all of this too!

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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.

Site Search Tags: neurosurgery, seizure, UCSF, Harvard, tumor, brain tumor, surgery, church, prayer

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