Blogging in B Minor

Many of you must have learned of Dr. Randy Pausch and his fight against pancreatic cancer.  I recall my wife Rachael recording an episode of Oprah that featured him presenting what he calls his Last Lecture.  Since that episode that aired months ago, he has gained much notoriety and has published a book entitled “The Last Lecture”. 

Randy’s lecture is an amazingly inspirational experience.  I would urge all of you take this in if you haven’t already.  Also, below the video I have placed a link to his update page where he is posting updates on his health.  This is obviously a huge battle and he’s way down the road with it – prayers are always powerful…

 Randy Pausch’s Update Page

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Thank you all for your thoughts and prayers this week – they are so appreciated. To cut to the chase, my studies came back and showed stability with no growth! Needless to say we are so happy. There are some interesting observations to be made regarding the results that I will get into but the real take away here is that everything is stable and either my treatment is effective or the tumor itself is just not growing. I have discussed before that there is really no way to prove that ongoing chemotherapy is the reason for stability, however, given I had experienced tumor growth between January 2007 and May 2007, had surgery in June and then from that point forward I have had stability we have to assume the radiation and chemotherapy are doing the job along with supplements and other steps I have taken in my life.

Now to the results. I will spare all of you the report details and just paste in the impression section from each study which is the most important.

5/27/08 MRI Brain w/wo and Perfusion MRI

IMPRESSION: NO SIGNIFICANT CHANGE SINCE PREVIOUS EXAMINATION. THE PERFUSION STUDY DOES NOT SUGGEST A HIGH-GRADE LESION. THERE IS A SLIGHT DEGREE OF GADOLINIUM ENHANCEMENT SIMILAR TO PREVIOUS STUDY SUPERIMPOSED ON AREAS OF INTRINSIC HIGH T1 SIGNAL.

This test included essentially two parts – a standard MRI that looks at the tumor anatomically – I always have this every 60 days and that has been coming back stable. A second study was run that I have never had before that is called a Perfusion MRI. This is a special technique for evaluation of microscopic blood flow in cerebral capillaries and venules. It basically creates what is called an MRI perfusion “map” of a high grade brain tumor and demonstrates areas of increased capillary blood volume in the tumor. This technique is used quite frequently to demonstrate areas of a tumor with highest malignancy potential to aid biopsy planning (a biopsy should target the highest malignancy areas because the WHO grade of a tumor is based on the highest grade cells found in the tumor).

Ok, out of breath now but I think it’s good to understand this stuff. You can always blow by all of this stuff if you want of course. So what does this impression above mean – it says that it doesn’t suggest I have a high-grade lesion? Huh?! Well, we know I do. Pathology resulting in a grade 3 oligoastrocytoma dx trumps any imaging studies. However, to put this in simple terms – when a tumor is growing or becoming more aggressive, it requires more blood. To acquire more blood, it needs to increase vascularity (growing more veins basically) which allows more “throughput”. This study says that this isn’t happening. GOOD NEWS! On to the PET scan.

5/28/08 Brain Imaging PET Metabolic

IMPRESSION: THE PET SCAN HAS REMAINED UNCHANGED COMPARED TO THE PREVIOUS EXAMINATION DONE ON 03/15/07. THE LESION IN THE RIGHT POSTERIOR PARASAGITTAL FRONTAL LOBE IS RELATIVELY HYPOMETABOLIC SHOWING UPTAKE APPROXIMATELY EQUAL TO NORMAL WHITE MATTER AND SUBSTANTIALLY LESS THAN GRAY MATTER. THIS WOULD ARGUE AGAINST A HIGH-GRADE NEOPLASTIC PROCESS BUT DOES NO RULE OUT A PERSISTENT LOW GRADE NEOPLASM.

PET stands for Positron emission tomography and is an imaging technique which produces a three-dimensional image or map of functional processes in the body – in this case the brain. Without getting into major details, like the perfusion test above, it will look to see if there is metabolic activity – we want this test to come back showing that my tumor is hypometabolic, not hypermetabolic. Also, what is typically done is the PET “map” that is generated is typically overlayed on top of the MRI scan so the Neuroradiologist can look at anatomic and metabolic views (what the structure is and what it is doing biochemically).

Ok, having said that, no change since my PET scan in March of 2007. This is great news. Also, like the perfusion study, they concluded that this would argue against a high-grade neoplastic process (high grade tumor). Again, we know it is so the take-away here is it’s not growing, it’s stable and metabolically it’s not changing. This is all great news!!

For those interested, here is an image of a Brain PET/MRI fusion:

When first looking at these results, it would be easy to think I have a lower grade tumor but that simply isn’t the case. I saw the results and it created confusion at first. I thought “this is odd – this completely contradicts the pathology?” However, I remembered, too, that mixed gliomas can behave like low-grade tumors on film as well – and they can fool many neuroradiologists into thinking they are in fact low grade or even infarcts related to strokes if being discovered for the first time. This is why it was so important that I had everything looked at by UCSF and Mass General back in May of last year.

And speaking of that, it has been a year since I was “officially” diagnosed. We knew well before that time what we were dealing with but the official diagnosis came down in May and here at the end of June it will be 1 year since my craniotomy – and 2 weeks after my craniotomy my 2nd son, Keegan, was born so he will be having his first birthday. Needless to say, we will be having a much calmer June this year than we did at this time last year. It’s hard to even keep things straight when thinking back to last year – it was surreal. But I will say this, we know that we can walk through anything. Our family has endured. And we know that with God’s guidance, we aren’t alone in any of this. This type of trial tests every ounce of your character. It pushed us to what we thought was the brink only to find that it was going to get harder. But we knew that it was temporary as hard as it was – one day at a time we could walk through it. Life is hard sometimes which is why we have to enjoy every day. Are blue birds singing at my window or yours every day?! Nah. But, some days they are! And the more I can focus on the positive in my life, what I have today – my family, my two wonderful boys, a renewed appreciation for the gift of life (really, I think human nature just does this if you are faced with a diagnosis such as mine) and so many other luxuries that many in the world don’t have.

Thank you again for your thoughts and prayers. A big week indeed. I will continue on chemo – we talked about that. It is harder as time goes on – your marrow keeps getting hammered and after awhile it basically says “I keep getting up and then I get hammered again so why should even try recovering anymore!”. Therefore, the fatigue sets in more consistently. But, I’m finishing cycle #8. I want to make it to 12 – 1 year. Then I will finish. Both UCSF and the Neuroscience Institute agree that if I can tolerate the treatment it’s the best course.

Keep on going….

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Just a really quick post this AM.  This is a big week for me – I could really use your prayers.  Today I have my standard 60-day MRI.  Tomorrow I’m having a PET scan.  For those that don’t know, a PET scan looks at a brain tumor from a metabolic perspective instead of anatomically which is how an MRI views the tumor.  It produces a 3-dimensional image or map of the tumor and detects what is called a “tracer” which is in the form of a radioactive isotope that is injected into your blood.  In my case, the tracer, if my brain tumor is highly active, will race to the tumor and the results of the PET will show “high metabolic activity”.  Glucose is in the tracer and if my tumor is in a state of high metabolic activity, it will feed on glucose.  Therefore, the tracer will “pop” on images where this is taking place.  This is the easiest way I know of to explain it!

When I had the PET in March 2007 the results indicated “relatively low metabolic” activity which was consistent with a stable or low grade tumor.  Of course I found out in June when I had surgery and a biopsy that my tumor was a grade 3 oligoastrocytoma so the low matabolic activity was more due to stability than a low grade tumor as grade 3 is a high grade tumor.  

I did something to my back over the past several days so I am NOT looking forward to laying on these tables for an hour at a time over the next several days!  They aren’t the most comfortable in the world, particularly considering you have to remain very still.  Here is a picture of the PET equipment to give you an idea.

On Thursday I meet with my Neurosurgeon and Neuro-oncologist to review everything.  So, a big week indeed.  I always have some anxiety when I have scans - but I turn it all over to God.  This isn’t my plan here and if I took it all on myself I don’t know where I’d be today.  But even still, it makes me feel anxious re: results is all, particularly because the MRI is here and now.  The PET is tomorrow so I won’t worry about that one…

So if you think about it and are reading this, a short prayer about positive results would be much appreciated.  Your support has been great!

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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.

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It’s always interesting when someone who is in the public eye is diagnosed with a rare health condition – it catapults the issue right to the forefront – centerstage as it were.  And there it was.  Senator Ted Kennedy was diagnosed with a malignant glioma today after experiencing a seizure over the weekend.  I remember seeing the story regarding his seizure and I had this strange inkling that it could be a brain tumor.   This is the type of tumor I have (an oligoastrocytoma is a type of glioma – they don’t know what Senator Kennedy’s tumor is until they can biopsy it).  My thoughts and prayers go out to him and his family for I certainly understand, at least in my own way, what they must be going through right now.  Decisions need to be made.  Should a biopsy be performed.  Is surgery an option?  Should it even be performed or can it be performed?

Because of Senator Kennedy’s stature in U.S. politics, there will be a lot of people who will become more educated regarding brain tumors as a result of his diagnosis.  Everytime a health crisis hits an individual in the public eye, the public becomes more educated because the press puts so much information out about the subject – and frankly the public seeks information on the subject in this situation.  Tug McGraw was a great example.  He was the talented pitcher for the Philadelphia Phillies who was also the father of country artist Tim McGraw.  He was diagnosed with a brain tumor that eventually took his life.  The positive outcome is the Tug McGraw Foundation – it was established by Tug in 2003 to raise funds to improve the quality of life for children who are diagnosed with brain tumors.  Amazing stuff.  Or Christopher Reeve – his wife campaigned on his behalf regarding his condition.  How about David Bloom who died in Iraq after being stricken with a pulmonary embolism – his wife is now a spokeswoman for that foundation.  And it goes on.

So, in Senator Kennedy’s case, this will bring significant attention to primary brain tumors and although his diagnosis is tremendously sad and troubling, as it was for me and it is for anyone else that is walking this journey, perhaps this will educate people further and what’s more, perhaps given his status and influence in the Senate and all of his friendships with those who establish bills and make decisions around medical research & funding, healthcare reform, etc. we will see initiatives brought forward more aggressively in Congress around funding for brain tumor research and development.  Ironically, Senator Kennedy have had Senator Kennedy as a proponent in the Congress for a long time fighting for better health care for all – making strong cases for increased federal investment in biomedical research.  Perhaps his diagnosis that is so ironic given the issues he has been pushing will open some other eyes and Congress will act as a whole and see what the Senator has been fighting for.  Congress has the ability to accomplish this – and they can do this in his name, with him – as a tribute to him and what he is now fighting against himself.  As a result, it will help all of us who find ourselves in this position.  The Ted Kennedy Brain Tumor Research Fund?  What do you think?

I pray for everyone touched by the diagnosis of a brain tumor.  I pray for Senator Kennedy.  And I pray that Congress will think seriously about funding brain tumor research and start acting.  Afterall, their comrade who has been active as a Senator and policymaker for more than 40 years, who has been our champion in Congress in this capacity, is now facing the very threat he has worked so hard to temper, at least in terms of setting forth legislation that is ambitious and that responds to the needs of those battling cancer. 

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I have been in a holding pattern with chemotherapy for my third week now.  The symptoms I have been presenting since April 28th are just now starting to wane so I believe I am back in action soon which is a relief.  Even though I have finished the standard of care with regard to chemo which is 6 months post radiation w/concurrent chemo over 5 weeks after surgery, I am pushing for 12 cycles as has been recommended by my oncology team  As you know if you’ve been reading, I always obtain second opinions so I ran my case through the Department of Neuro-Oncology at UCSF and they concurred so I really don’t want to go through 3 full weeks off of the program.  There’s not much you can here however.  Being immuno-suppressed forces you to take some steps to ward off illness.  So, I will decide with my oncologist when to start up again.  I have some final tests to go through and perhaps need to wait a little longer to build up my strength a bit more and then it’s back to the program.  As a result of all of this we pushed the PET scan and MRI out another week or so.  I don’t have them scheduled just yet but pushing them made sense.

Everything else is going well.  I’m continuing with the soccer clinic that Aidan is enrolled in and although we couldn’t make it last week we will be going tonight and I’ll be out there with him.  It’s a great time for us and I won’t let this stop me from doing it.  It’s so much fun to see him out there and enjoying himself and to be so proud to have his dad there with him and participating.  I see some fathers there and they just sit on the sidelines and they are uninvolved and I feel bad for the children.  Then there are some who are going through the motions but just seem disconnected.  I think it’s so important to be out there to be engaged.  Kids are egocentric – the believe everything is about them.  If you aren’t involved, if you are stressed out at home or angry or yell, if you have an angry look on your face – kids think it’s because of them.  So I don’t sit on the sidelines – nor will I sit on the sidelines of life, especially now. 

I never really sat on the sidelines but there have been times in the past that I have been disconnected.  I think we have all had times like this.  I can remember a time when I first was diagnosed with my brain tumor and I was completely self-absorbed.  It was as if a tidal wave had just rolled over me.  If any of you grew up on the coast and body surfed or surfed, it’s like a 10′ wave crashing and even though you want to go through it and come up in the back, the white water pushes you down and you are tossed about for what feels like it will be forever.  I felt alone and completely disconnected from life and the world.  For me, this started in December of 2006 and I recall being told I needed a brain biopsy right off the bat – that was my most difficult time up until I had surgery in June 2007 and found out it was grade 3 oligoastrocytoma.  Then it was hard, again.  But I knew and I know that each time I face that wave that is going to crash upon me, I can now swim underneath and I have learned to come up the other side, not allowing it to hammer me and toss me about like it has before.  Now I don’t have to stand on the sidelines for any period of time unless I choose to do so.  I can be out on the field and participating.  I can be engaged – present – for myself, my family and for life.

On a side note, I have been selling a lot of copies of my CD lately, River of Faith - thank you!  As a result my stock has been running low.  I am in the process of getting more CDs pressed so if stock is depleted please be patient as a large run will be shipping to the distributor shortly.  Thank you so much for your support!  I am so humbled that so many of you are touched by my music enough that you’d like your own copy.

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I believe I’ve mentioned that I’ve been feeling a lot more fatigued lately than before.  I have also picked up some type of flu – pretty much just hit me head on so I didn’t start chemo yesterday as planned and will likely hold off for several more days until I can see how my body does with warding this off.  I can’t tell if it’s a 24 hour issue or some other type of flu.  Not fun though!  So, I’m having to pause my chemo which is not preferred at all.   On another note, we performed a lot of work on my blood to try and understand the source of the nosebleeds and bleeding in my mouth that I have experienced on a few occassions.  No such info came out of the analysis – platelets and specialized studies on them are fine so at this point it’s “unexplained”.  The bleeding has subsided so that is good by I’m an answer man so I’d obviously like to undertand what the issues are related to.

I can really tell a difference when I don’t have the anti-convulsants on board.  I didn’t have any until mid-morning today after missing last nights dose completely and I woke up today with strange sensations in my lips and left hand – the same numbness that I felt in Dec 2006 that started me down this course.   Obviously this is just a staple in my regimen (the ACs) but it has completely straightened out the focal seizures I was experiencing. 

Aside from this stuff, everything else is going well here.  Aidan and I are involved in a soccer clinic on Tuesday evenings which is a great night out for us.  He’s learning the rules and techniques of soccer and I’m participating with him.  I played competitively growing up so it’s great doing this with him.  He really looks forward to it. 

I think I mentioned that at the end of this month I’ll be having an MRI Spect and a PET Scan – the PET should produce great info looking at it metabolically for the first time in a year (I had a PET last March).  Standard MRI looks at the tumor anatomically wheras a PET scan can look at it from a metabolic standpoint – how much or little metabolic activity is taking place.  If there is high metabolic activity detected via PET, that could be an indication that the tumor is on the move.  We are so blessed to have the technologies we do – and to be in a position to use them.  I remember that every day.  There are so many that live in coutries and are in socio-economic groups that don’t allow them to access this type of healthcare.  We don’t know how good we have it here.  I really don’t think most of us do.

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