Blogging in B Minor

This last Sunday we were so happy to have Nick Vujicic at Bayside Church in Granite Bay, California.  For those of you who don’t know his story, I posted about Nick back in April and you should check it out.  Briefly, Nick was born without arms and legs - a quadriplegic.  He of course was ridiculed as a child and asked many questions - why are you the this way and he didn’t know.  He was asked why he didn’t know and he’d respond “I don’t know”.  No one knew.  It just was.  Fast forward and instead of living a life of depression and giving up, he has taken the opportunity to find God, realize His plan was to use him and his testimony as an example for others and to inspire people around the world that regardless of your circumstances, God will take you through anything and what matters is what is on the inside.  His web site is amazing.  He has DVDs and other materials that are inspiring.  I had a chance to briefly meet him afterwards and tell him a bit about my my situation.  He identified as he said during his message - why was this happening to him?  Why did God choose to do this to him?  If God can do anything, give me arms and legs!  He said he prayed about this over and over until he accepted this as his circumstance.  He still prays but he also realizes that life goes on.  I told him that I was in the same place, just a different situation.What a great guy.  Check out his web site.  He is truly inspiring.  He has traveled the world over and will soon be on Oprah.  Cheers 

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

Tags:  Brain Tumor , God , hope , inspiration

My MRI was on Tuesday and I had an appointment yesterday with my Neuro-oncologist.  Overall the news was good.  The size of the tumor has not changed which is great news, again.  There has been an increase in what is called T1 shortening and mild enhancement associated with the lesion.  In layman’s terms, this means the blood-brain barrier of the cell walls have broken down somewhat - it’s a vascular change in the tumor is all.  A change - it’s irritated for some reason.  The cause?  It could be from all of the treatment over the last year.  It’s been hit with a heavy course of radiation with concurrent chemotherapy over 5 weeks.  The was preceeded by surgery which resulted in a biopsy and finally I completed 8 1/2 rounds of chemotherapy.  So this is really my first post-treatment scan.  The report indicates that this “could” be related to post-treatment changes and of course recommends continued follow-up imaging.  We are doing that anyway.

This is the first scan that they haven’t used the term stability but my doctors also didn’t say this is anything to cause major concerns - we just need to keep watching it.  And they all know me very well!  I’m the straight shooter.  Reality is all I want to hear so no holding back ever happens here. 

I’ve said it before and I will say it all the way down the road.  It’s all in God’s hands here.  We are all human and I have my own times when I can sit and reflect on what is happening in my life, our lives - think about my two kids, my wife and what all of this means to us.  But in the end, we all know that a lot of analysis and worrying isn’t very helpful to our daily lives.  So we are human - there is not some kind of power we can employ to feel “ok” about everything all the time, but you accept it - you accept your circumstances because you have to and I have learned to live with it - and so has Rachael but around the time of my scans we feel vulnerable and it’s hard not to think about it because it’s put front and center.

In a week Aidan starts soccer - every Wednesday and Friday we’ll be going to practice from 6:30 to 7:30pm.  That will be a lot of fun for us - a great Father/Son time.  He loves to get out there and kick the ball, run around and just have a great time and I think he really loves to kick the ball further than his dad.  Games every Saturday until November.  He is a competitive little boy - we’ll see how this goes but I know it will be a lot of fun - probably more for me!

That’s it for now… 

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

Tags:  blood brain barrier , Brain Tumor , chemotherapy , glioma , God , MRI , MRI enhancement , oligoastrocytoma , radiation oncologist , Radiation Therapy , survivor , Temodar

As luck (or a hashed immune system!) would have it, I ended up with a cold.  Who cares at this point - it’s par for the course and I’m working on bringing myself back out of this over time.  It will take about 6 months and I will take antibiotics the entire time which will help me.  Now I’m not sure if this was caused by me, but my son woke up on Wednesday morning with a terrible cold - running a temperature and the whole nine yards.  I’m watching out from all sides!  He’s worse than I am for some odd reason.  I feel bad for him - he’s been in camp all week and had to miss yesterday and today.  I’m hoping he can finish out tomorrow at least.

Also on Wednesday I had some strange sensations in my left bicep - just slight contractions on and off in the afternoon.  They started again in the evening and at that point I knew it was my long lost friend - focal seizures.  So, after a period of time I became annoyed with it (I was trying to watch Dateline or something) and took an additional 200mg of Lamictil and they said goodbye.  For those of you that can’t envision this - this time it was like having a strong twitch in an area of your body - you try to turn it off but you can’t.  You see, a focal seizure can be as simple as that or a marching numbness in your hand or arm.  So many people have this classic vision of a seizure - someone flopping around on the ground.  That’s just not what they are all about.  There are a lot of different types.  I spoke to my neurologist about it - there’s nothing you can read into this.  It means nothing.  People can have clean scans for years and have seizures throughout - I actually never have them since 7 months ago or so.  People can have tumor growth and no seizure activity.  It’s just not an indicator of anything.  So you deal with it which is why when it happened I took a pill, talked to my wife about it and went about my business (back to the Dateline thriller!). 

You just can’t get all caught up in this stuff - you have to have faith in God and turn it all over to Him - period.  Could you imagine if I took every issue - a seizure, an upcoming MRI scan (I have one next Tuesday), some weakness I feel on the left side of my body, statistical survival rates, etc. and worried about them and placed it all on my shoulders?  I’d be an anxiety-ridden mess!  I remember when I came back to work and had 2 weeks of radiation left.  I was worried about how I’d get through that and still work but I turned it over to God.  And?  And I worked, left at lunch and went to the Institute and had radiation treatments, came back to work and finished my day - and I was on chemotherapy at the same time.  I got through it but not because of me - I had some help there.  The task ahead of you is never greater than the power behind you, right?  It’s true.

I have my 60-day MRI check on Tuesday - see my Neuro-Oncologist on Wednesday to discuss and then I’ll be done for a few months.  Things are good! 

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

Tags:  Brain Tumor , brain tumor survivor , chemotherapy , Faith , God , MRI , My Story , Radiation Therapy

I think I typically keep things pretty well in perspective considering what I have happening in my life. I’m speaking of just my health, prognosis and these aspects of my life. I had some pretty dark days and nights in the beginning but I came to accept my circumstances and I really try to use this trial in my life in positive ways - as a testimony to others that we can get through anything, even if we are facing a prognosis as what most view as bleak as a malignant brain tumor. I volunteer through the NBTF, am active with the NABTC and of course field a significant amount of email through my site here. I think it’s important to channel all of this into positive energy - there is a plan behind all of this. However, it’s easy to get caught up in flawed thinking.

I found myself doing exactly that over the past few days - dwelling on yesterday and worrying about tomorrow. Anytime I’m not in today, I know I’m on a slippery slope. I have posts on this blog about how I cope, about how I avoid this! But how did I learn how not to do this? By finding myself in this rut and getting myself out of it, over and over - mostly at the onset of this journey. I think what triggered a lot of this over the past days certainly was Senator Kennedy’s diagnosis. I know better. The press just lays everything out in the bleakest of terms and they are so uneducated (to no fault of their own) regarding brain tumors and other subjects that are suddenly thrust into the spotlight. The story comes out of nowhere and they start boning up on the subject, contacting experts, interviewing everyone. Immediately, he’s facing a death sentence and gliomas are all grade 4 tumors! In all fairness, it wasn’t quite this bad but it pretty much was the press painting a picture of “you have malignant brain tumor, you will die in a few years tops”. I will say that with Senator Kennedy, I could pretty much ascertain that he was facing a GBM (glioblastoma multiforme or grade 4 glioma) when I heard certain statements such as “extremely aggressive” and other give aways. A grade 4 is much different than what I have, a grade 3 although some will certainly argue that all grade 3 tumors will eventually evolve into a grade 4. Who really knows! However, all of this stirred the pot for me and I started throwing all of the thoughts I have had, factual but water under the bridge, about my case back on to my shoulders all over again.

I have a grade 3 - a craniotomy was performed and 0% was resected because of location. I have not had any shrinkage - stable is good but no shrinkage. 3-5 years median survival rate. What about my wife, my kids. Are the assets I have built over time enough - life insurance, pension plans I have, equity in our property and other assets - what if I have to stop working? Disability? My health insurance - conversion to COBRA - then what? And the list goes on. I hammered myself again! I have been through this. And then, I came back down to earth and said, “Mark, you have been through this and not only that, you have a binder in your firesafe that goes through all of this - it covers every scenario from active treatment to advanced illness, walking away from work to my death and what my family would do - it lays out steps - it has a “document locator” that spells out where where everything is”. I reminded myself that my financial advisor has a copy of all of this in his possession. I have a will. I have an advance health care directive.  I also have the entire world of statistics in perspective, thus my post some time ago about the amazing piece called The Median Isn’t The Message.  I have all of the other legal snafus tied up. And most of all, I have God. I have my maker who is in FULL control of what happens to me. This is not my fight, this is his but I need to stand and deliver.

So here I am, back down to earth and back to where I typically am - living in today, not yesterday or tomorrow and enjoying my family and my life. You see, as I have posted before, if I am not here today and I am mired in the mess above, I am missing out on everything - and I am missing out on what I believe God wants me to enjoy while I am here! Will I do this again - find myself wandering? I am sure I will! However, I have learned how unproductive this is. I also know we are all human - and I know that anyone facing a terminal illness - who has had a “number” waved in front of their face (which I have chosen to ignore!) will have times of dispair. It’s up to us to fight back, to realize that all any of have is today, right now, this moment. My brain tumor may not even be the cause of my demise. Any of us could walk out the front door today and have any number of circumstances alter our lives forever. That is why it’s important to live every moment to the fullest.

Yesterday? It’s gone. Tomorrow - it’ll come but today is what we have. I will enjoy it and if I fall into this thinking, I know what I need to do - and each time it does happen, I learn a little bit more about myself and I get a little bit better at avoiding it.

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

Tags:  Brain Tumor , GBM , God , My Story , oligoastrocytoma

At this point I’m in full research mode on chemo.  The conservative recommendation is to continue on my alternative 7-day regimen through the 1 year milestone.  However, there are no studies or hard data to suggest that it improves survival rate.  The problem so far as I can see is that all of the research centers around and has resulted in the “standard of care” which is 6 months of “pulse therapy” post-surgery and radiation.  Once you get there, it’s up to your Neuro-Oncologist to set you on the right course.  Stop chemo altogether, switch to something else such as Tarceva, keep going with Temodar or if you have growth take more aggressive action obviously including surgery - both traditional and stereo-tactic radiosurgery.  So, no one of course can predict. 

My conversations have gone sort of like this:  So if I were to continue therapy, what has your experience shown in terms of liklihood of tumor growth vs. management for a grade 3 mixed glioma?  Well, it depends.  Sometimes they grow, sometimes they don’t.  And if I don’t continue?  Same result.  And I continue to the year marker and stop?  It could grow after that or not.  There are patients that stop and it’s stable for years and then some patients have aggressive tumors that grow quite quickly.

The bottom line for me?  It is a) in God’s hands at the end of the day but b) I have to research this just as I did with my decision to have surgery to make sure that I am making the best decision for me and for my family.  I am going to UCSF and having the look at my film again.  I am also having their Department Head of Neuro-Oncology look at my case and provide a second opinion (the conservative recommendation I have is to continue).  I am also digging around at Harvard for another opinion.  In concert with all of this, I am performing my own independent research.  As I have always maintained, you must be your own advocate - no one will do it for you.  I can go to my doctor and sit in a room and just shake my head yes or I can go out there and get good, solid info from some of the most imminent sources in the field.  The latter is what I want.  This is my life on the line.

That’s it for now.  For now, though, I have been off for a week and as a special present I am taking a second week off of chemo - yeah!  This is not a big deal since I have been by the book for 6 months.  Back on it a week from Monday but this is a welcome break.

Thanks again for all of your thoughts and prayers regarding my MRI.  They are SO appreciated.  The comments and all the emails I received mean so much to me.  You have no idea.  Thank you.

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

Tags:  astrocytoma , Brain Tumor , brain tumor survivor , chemotherapy , glioma , God , MRI , Oncologist

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.

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

Tags:  Brain Tumor , brain tumor survivor , chemotherapy , fatigue , God , IMRT , MRI , oligoastrocytoma , prayer , Radiation Therapy , Temodar

The North American Brain Tumor Coalition (NABTC) is an advocacy group dedicated to educating policy makers and lobbying for increased research into brain tumor treatments. The overarching strategy of the coalition is to improve the quality of life and overall prognosis of brain tumor patients.

I mentioned in a recent post that there are various ways I have found to “give back” and get involved. I have found that by giving back and getting involved it not only helps other people who are heading down the same road I have been walking but helps me tremendously. Likewise, I have found people who are further down the road than I and they help me. This fellowship is important and it applies to caregivers as well.

The ways in which I get involved have different ways of impacting me which of course makes total sense. Some of the relationships I have formed have been life changing. I have email-only relationships with people that I pray for and keep in touch with that are special to me. I have other contact with people that may be brief but significant. Obviously one of the ways I have been involved and tried to give is with this blog. Blogging about my journey, based on emails I have received, has given some people hope and strength. It also helps me tremendously. My album River of Faith, although a piece of songwriting about the beginnings of my journey/trial as a brain tumor survivor, has touched other people which humbles me. Volunteering and connecting with brain tumor survivors seeking support through the National Brain Tumor Foundation is another way I am involving myself.

I know that for all us - I mean ALL of us - brain tumor survivors and everyone touched by the diagnosis of a brain tumor, this is frightening. It’s a dark world in the beginning but people shine light over it. You are not alone and I feel that God has been with me through this and He’s in the middle of this. For me, he has placed me in this place for a reason and perhaps my testimony is being used to help others. Whatever the case, I’m involved. I took care and continue to take care of my business. God is #1, my family is #2 and everything else falls someplace down below that. I am my own advocate and you have to be. I did my research and continue to do my research as necessary. Am I missing things.? No doubt about it. However, I feel I have done a thorough job. I have enough binders of material full of my independent research and have read enough books to feel very well versed on the subject of primary brain tumors. My point is that once I got past the learning curve (which I crammed by the way because I was so fearful regarding my cognitive abilities and mental acuity after the surgery) I moved on. I wanted to be involved - which takes me to the NABTC.

This coalition is the only of its kind so far as I can tell. There are a number of ways to be involved. You can become an advocate which really requires the most effort but it boils down to how much you want to put into it - an understanding of the issues, writing letters and getting involved with your Representative and Senator to help shape health care and advocate brain tumor research funding. Or, you can just be informed - just understand and help by spreading the word - attend webcasts, sign up for the newsletters from the NABTC, etc. Advocacy is important in the world. For us, it started when we were diagnosed with a brain tumor. We all immediately had to start being our own advocate - striving for the best care medical science has to offer. Once you know that you have that and if you are in a position to do so, helping further the cause is a great way to help us collectively as well as future generations, children and adults alike, ultimately overcome this disease.

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

Tags:  Blog , Brain Tumor , Brain Tumor Research , Brain Tumor Resources , brain tumor survivor , Christian Music , God , My Music , Resources (Brain Tumor) , songwriting

I believe one of the most difficult aspects of being a brain tumor survivor is in staying in today - one of the coping mechanisms if you will. In time, it’s not so much of a coping mechanism. This may be true for any of us in just living life but it becomes increasingly more important if you’ve been diagnosed with any terminal disease. Many of us may have lived our lives this way prior to being diagnosed with a brain tumor. I certainly tried to practice this. The fact is, none of us know what tomorrow holds. All of our days our numbered, it’s just that I’ve been given a number to some extent - at least I’ve been given “parameters” based on statistical analysis involving large numbers of brain tumor patients over a long period of time. Is there validity to these statistics? Sure. Do they apply to me as an individual? Not really.

I’m writing this post because it’s easy to get caught up in the frenzy of “statistics” and I do it from time to time. I read something this morning that sent me in that direction for a brief time. So, I felt it was a good idea to post this for anyone that finds themself doing this as well as a reminder for myself. Regardless of what anyone says, what any resource you read says, you are a statistic of one at the end of the day. For my particular tumor, a grade III oligoastrocytoma (which is a grade III, or malignant glioma), I know people who are 10 years out from diagnosis. Statistics say that shouldn’t be. So, the way an individual responds to treatment is different from person to person. It’s important to realize that and if I find myself wading into the pool of survival rates, I stop myself. The only reason I have is to be responsible and plan for my family (have things in order, such as life insurance, pension plans and the like) - then I am done.

Digressing to the opening topic, staying in today is the key strategy. How easy it is for any of us to travel into tomorrow, next week, next month or even a year or two from now. I can’t go there. And when I do that, I’m not enjoying what there is to enjoy today. I’m preoccupied with tomorrow, I can’t enjoy my wife and children, what today holds and I’m simply not present. The way I look at it is if I’m focused on the past I’m probably regretful about something and I can’t change it. If I’m focused on the future I’m most likely worried and anxious about something and that day hasn’t even come yet! However, if I’m focused on today I can enjoy it, I have influence over my circumstances with God’s guidance and everything is as it should be. Certainly what complicates this and makes this much more difficult is living with a brain tumor. Sometimes you feel like you have a ticking time bomb that can make your life go sideways at any time. Therefore, it’s easy to slip into that flawed thinking that takes you into the future. However, for me (being a cognitive guy!) I refocus and try to stay in today, where I should be and can be comfortable.

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

Tags:  Brain Tumor , Brain Tumor Resources , Christian , Christian Resources , God , My Story

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

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

Tags:  Brain Tumor , chemotherapy , God , MRI , My Story , Oncologist , Temodar , tumor

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

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

Tags:  Brain Tumor , chemotherapy , God , MRI , My Story , Radiation Therapy , Temodar