Blogging in B Minor

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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If you ever think life’s trials are too big, the struggles we face are too great, take a look at this.

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I’ve talked quite a bit about supplements in the past so I thought I would post a nice picture of the supplements I take on a daily basis. These have changed since I have completed radiation of course but the documentation in the resource library will give you a run-down of everything I have done. The previous links will show you the pics. Here is a quick list – obviously these are on top of lamitil, topomax, pepcid and a few other prescriptions that I take. Suffice it to say that my daily intake of pills is ridiculous!

Starting from left to right in the picture:

1. Peppermint Complex (digestive)
2. Boswellia (frankencense – anti-inflammatory)
3. Super Antioxidants – click the link for the supplement facts on the type of Antioxindant that I take. The essentials here, among others, are selenium, zinc, N-Acetyl Cysteine, CoQ10, Grape Seed Extract.
4. One-a-Day Multi-Vitamin
5. Aloe Vera Gel – Digestive Tract
6. Temodar 140mg – Chemotherapy. For my dosing it’s 280mg a night – I’m doing 1 week on / 1 week off. I’ll continue through 12 cycles.
7. Probiotics – Acidopholis
8. Fish Oil – 1000mg – Omegas – Important for brain tumor treatment, breaking down blood brain barrier.
9. CoQ10 – additional dosing

For me and based on my research, this is what I’m doing. I’m not a doctor nor a nutritionist so I don’t advocate “copying” what I do. This is what I have been doing since I’ve gone straight on to just chemo. I have had stable scans. Can I attribut them to this regimen and the chemo? I have no idea. For all I know I could be doing none of this, including chemo and still have stable scans. However, I’m going to do eveything I can, based on my research, to make things right and fight the fight!

As an addendum, here is video called Nutritional and Herbal Strategies to Complement Conventional Brain Tumor Treatments by Jeanne Wallace, PhD, CNC. It’s about 40 minutes long and focused on diet and supplements

That’s my supplement post – been meaning to do it.

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I had two appointments this week – one on Tuesday which was a final follow up with my neuro-radiologist and another yesterday with my neuro-oncologist.  On Tuesday, we covered any issues I may be having related to the partial brain radiation that I underwent after surgery.  I haven’t had any issues of course as reported in my blog.  The interesting observation he had based on the string of MRIs that have indicated stablility and no growth is that he has fairly strong level of comfort at this point that there are no grade 4 cells that are part of this tumor.  He also indicated that it is entirely possible that the tumor could be made up of both grade 2 and grade 3 cells but that is purely speculation on his part – only a more invasive biopsy or resection followed by pathology would reveal such a finding.  Typically, grade 3 tumors, or anaplasic gliomas don’t recur or progressive until around year 2 so we’ll just continue the plan.  And again, this is only based on statistics and anyone who has read my blog for any length of time knows exactly where I stand with regard to statistics!  They mean nothing.  I view all of this discussion as extremely positive though.

As far as my appointment with my neuro-oncologist, we mostly talked about a recent issue I have been having with bleeding in my mouth and nose bleeds.  This would all point to a low platelet count, however, my blood work has always been right on target with all levels.  We are doing more blood work early next week that will include additional tests on platelets.  Other than that, I”m doing fine with cycle #7 coming to an end.  5 cycles to go – seems like a long time but when you take in a day at a time it’s really not
bad at all. 

As far as fatigue, I’m feeling that still but not as much.  I’m putting in a bit more time at the office and find that my energy overall is increasing over time. I started a soccer clinic with Aidan on Tuesday nights which is great!  We get out there and practice together and it’s teaching him the fundamentals.  He already had much of this down so far (I used to play competitively) but this is a good primer for the fall when he will start playing in his first organized soccer league.  Keegan is doing great.  He’s 9 months now and growing.  Not quite crawling but he’s flipping open and very vocal.  A fun age for sure. 

Next MRI scheduled for the last week in May and will include a metabolic-type of study.  This will provide some more data than a standard MRI.  If need be, we’ll follow that with a PET scan which I had in March of 2007 that is a very detailed metabolic study of the brain/tumor.

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One aspect of having a brain tumor that is equally devastating is how this diagnosis impacts family members.  My wife and I, of course, had some emotional times together but I will never forget when my wife came to me a few months into this journey and told me how emotionally bankrupt she was.  She felt like she was picking up pieces of our lives together that were just falling apart.  What complicates everything in looking back is that in the beginning, everyone is focused on the patient.  Of course family and friends are there for everyone but there is undeniable concern for the loved one afflicted with this disease.  Makes sense – it’s just human nature.  However, I think what happens in time, unless there is some deliberate focus is other people in the family – wives, children, etc. can be left in the dust to one degree or another.  And don’t get me wrong – this doesn’t mean they are ignored at all, it’s just the balance of focus.

I remember about a week after my surgery, laying on the bed having the most severe seizure I had through all of this and my wife looking down at me with a look of care and compassion on her face but I also saw fear in her eyes.  I was telling her not to allow that vision of me to shape her outlook – as I was in the middle of the seizure – because I knew this was impacting her just as much as it was me.  We were going through this together always will be. 

And what about my children?  Well, my youngest was born 2 weeks after my surgery – how was that for timing and if you’ve been reading for awhile you know the story!  But my oldest – he was affected doubly.  My wife was at the end of a high risk pregnancy and on bed rest and I was preparing for surgery.   I had surgery on June 29th 2007 and my son was born July 13 2007.  All of a sudden, my son went from having two very capable parents to having two parents incapacitated.  We had a nanny and a lot of family stepping up, but what about us?  As I gained strength I spent time with him but as you know, radiation, chemo followed by more – it’s a road and once again, it’s not all about me – this touched him and impacted him and I never lost sight of that.  We made it through. 

Today we spend time together going ice skating, the movies – we have him in soccer and he actually starts into a clinic tomorrow night for 6 weeks that I will be playing in with him.  I’m still on chemo but life doesn’t stop.  You have to keep going.  I get tired sometimes but my wife understands – one day a week or so I have to come home and just lay down.  I have to go to bed early some nights but I try to spend my time on focusing on what I need to.  Today, my son calls my disease my “scar”.  He sees the craniotomy scar and that’s the extent of it.  We told him I had surgery beforehand because of headaches and so forth.  We had a good short book about doctors, nurses, the hospital, where on my body they were operating, etc. so he was well aware.  Anyway….

It’s not all about me.  I can get wrapped up into my treatment – and often times I do when I need to research.  In the beginning prior to my surgery I did a ton of research and my family understood.  I also continue to schedule film reviews and independent research as appropriate.  But I also know it’s not all about me – this disease is about all of us – everyone in my family it touches.  There are plenty of resources out there that family members can avail themselves to but I think the best are other family members.  Stay close.  For us, we have a strong Christian foundation and that drove us through and is our foundation.  Whatever your foundation is, use it to your advantage.  The National Brain Tumor Foundation is another resource.  They can put you in touch with other family members (care givers) who have been through this.  Reach out – it will help you.  You aren’t alone.

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Although I am still waiting for formal documentation, I had a discussion with the Department of Neuro-Oncology at UCSF on Friday evening.  After going through all of my information they are in agreement that the tumor is stable  and that it is in no way worse.  This is great news!  He also indicated that they concur that staying on for another six months would be the right course given my tolerance of Temodar, the stability of my tumor and the fact that my blood work is allowing my body to withstand continuing treatment.  They agree that stopping at a year makes sense, primarily due to the side effects – namely leukemia. 

I asked what course should be taken at a year – of course that is the million dollar question!  They recommend that I stop and if there is growth after that, surgical intervention is likely the best course given the location (primary motor cortex) and the fact that I had a 0% resection in my last surgery.  As long as I am neurologically in tact, which I have been throughout, that is the last thing on my mind and on the list. 

I will have a comprehensive report hopefully tomorrow or Thursday but this gave me all I needed to continue Temodar – cycle 7 started last night.  On we go.  I’m sure there will be some details in the report that will give me more information and I’ll share that here but at a high level, this is what I was after.

Again, second opinions are important.  This one came in consistent with my Neuro-Oncologist’s recommendation.  The interpretation of my MRI scans, too, were consistent.  Great – I have the assurances I need to move forward and it I feel 100% confident that I am moving on with a treatment plan that is the best for me, my lifestyle and my family.

More to come….

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Some good information should be available on Monday from UCSF.  For those of you that are not aware, The University of California, San Francisco has a Brain Tumor Center and it is one of the best in the country – certainly on par with Duke, Mass General, UCLA and others. Dr. Mitchel Berger, the head of the Department of Neurosurgery is performing a film review of my most recent set of MRIs which is something I have done on a number of occassions.  You may recall that he along with Dr. Peter Black at Mass General both agreed that I should have surgery back last June which was contrary to the opinion I was given here at the brain tumor center.  I have relied upon Dr. Berger ever sense from a radiological perspective to interpret my scans to ensure I have this second checkpoint.

In addition, I have been on the phone with the UCSF Department of Neuro-Oncology.  I am seeking another opinion with regard to my go-forward chemotherapy strategy.  For this case review, I have sent them just about everything.  MRI films, pathology, operative reports, 1p19q gene deletion test results, recent lab work, recent dictations from my Neuro-Oncology appointments, etc.  This review will allow me to have another opinion now that I have finished the 6 months of pulse therapy using Temodar which is the standard of care.  After 6 months, there isn’t a lot of information in terms of the right course to take – do you stay on chemo?  How long?  The same type?  Lots of questions.  Some with brain tumors may not know that in many cases you can contact brain tumor centers and facilitate these types of reviews with some footwork and organization.  It is WELL worth the effort and logistical challenges. 

So, on Monday or Tuesday of next week I should have opinions / impressions related to my scans (growth, stable, etc.) – and the verdict here has been stable all along and back in October of last year Dr. Berger concurred that all was quite stable.  I will also have the complete case review from a Neuro-Oncology perspective which will provide me with great information moving forward.

I was able to get some information through some connections from Dr. Jonathan Finlay who is at UCLA.  His response, to me, was shocking – he said the standard is to stop at 1 year which is consistent with my understanding but that he personally has his pediatric and adult patients continue INDEFINITELY as long as they have residual tumor present on MRI.  Wow.  Long term risks such as leukemia come into play with these drugs but I’m sure he views the long terms as the lesser of two evils so-to-speak, particularly if you’re dealing with grade 4 tumors.  So, we’ll see what UCSF says.

More to come next week.

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