Blogging in B Minor

Ok, it’s been a year now. 1 year since brain tumor surgery. It was 1 year ago this morning I was packing into the car after getting virtually zero sleep and heading down to the hospital with my wife to undergo my craniotomy in an attempt to resect what we now know to be a grade 3 mixed glioma. Wow – 1 year! Since then, I’ve undergone 6 weeks of radiation, 8 rounds of chemotherapy using Temodar, 2 PET scans, and countless MRIs. After all of this – I have stability. I still may have 100% of the tumor in my brain but I have no growth and have have achieved stability through radiation and chemo. For that I am grateful to God.

What I am also grateful for is that we had the ability and foresight to jump on this. If you go all the way back in my blog (if you haven’t been a reader), I was on a “watch and wait” recommended strategy and the short of it is I probably would have been watching and waiting, perhaps all the way up until now had it not been for the opinions of two other outstanding neurosurgeons who indicated this was a far more serious situation in their view.  Therefore, it could have been a scenario in which I had a grade 3 malignant glioma that would have been percolating in my brain as I stood by on this “watch and wait” strategy, assuming I remained asymptomatic and MRI scans were stable.  However, 2nd and 3rd opinions avoided that.  And, there were no wrongs done here. My medical care is the best I can get. My neurosurgeon, Dr. Edie Zusman is amazing.   This was a neuro-radiologist call and they simply felt it was a low-grade tumor.  It wasn’t.   Bouncing my case off of others like Dr. Mitchel Berger at UCSF and Dr. Peter Black at Mass General has been a Godsend and was a key tenet of my strategy.

I am just grateful to everyone in my life that has been there for me and for my family over the past year. This has been the most difficult year of my entire life, hands down. And, for everyone that has supported me, my family in any way at all – thank you.

As you know I’m off chemo for now – we’ll find out what’s next up this week. Again, thank you so much for all of your support.

Ok, in closing, turn up your speakers a touch and check this guy out! Hey, I’m a year out from this so I had to include some comedy in this post. For those of you who are not familiar with the band U2 and Bono, you won’t get it but most of you are. Hilarious.

Subscribe by Email RSS Subscription

Everyone needs help sometimes and this gentleman is someone who finds himself in just that position.  So, I felt compelled to post the press release and information related to his web site.  The press release explains the situation but in summary this is Phil Cameron, a College student who was diagnosed with a primary brain tumor a week or so ago.  He unfortunately finds himself without health insurance and as a husband and father of a 1-year old, he’s doing everything he can to pursue treatment.  He and his family are on a mission to raise money for his care and are doing in very unique ways using social networking sites such as facebook and myspace.

I along with many of you that read my blog can attest to the costs here.  So, here is the info.  If you’d like to assist Mr. Cameron in any way I’m sure that he and his family would be most appreciative.

To read more about Phil’s plight, you can visit his website which is dedicated to his family’s search for brain tumor treatment

Subscribe by Email RSS Subscription

Well, I had a CBC run at the lab yesterday in preparation to start back on chemotherapy tonight and I received a call from my neuro-oncologist telling me to wait another week – my marrow hasn’t recovered.  I stopped chemo on Saturday the 14th and was to continue through the 17th.  I would have been off anyway from Wednesday the 18th through Tuesday the 25th but back on again tonight which is why we did the labs.  So, I will effectively be off of chemotherapy for 3 1/2 weeks by the time I get back on providing my lab work comes back ok next week.  As I continue with treatment, it’s taking its toll certainly but when you fold in another cold that also relies upon white blood cells to fight it off, it’s not surprising I find myself waiting.  I also have to consider that I was not even well when the rest of my family became sick (see my post below ”The Infirmary”!) so I was pushing myself anyway to begin with.

This is really the first time I have had to wait because of a really low count.  This just doesn’t happen.  I have generally tolerated Temodar really well.  Regardless, we will wait and next Tuesday I will get a CBC and if all is well I’ll be back on next Wednesday night.  As further detail, when I have a CBC, they take that information and arrive at a calculation called an Absolute neutrophil count or ANC.  The ANC is a measure of the number of neutrophil granulocytes (also known as polymorphonuclear cells, PMN’s, polys, granulocytes, segmented neutrophils or segs) present in the blood. Neutrophils are a type of white blood cell that fights against infection.  The ANC is calculated from measurements of the total number of white blood cells (WBC), usually based on the combined percentage of mature neutrophils (sometimes called “segs,” or segmented cells) and bands, which are immature neutrophils.  A normal ANC is above 1,500 cells per microliter.  An ANC less than 500 cells/µL is defined as neutropenia and significantly increases the risk of infection.   Mine as of now is in the range of 950.  Here is a table that lists the ANC score and the associated risk category (essentially risk of infection) with 0 being the lowest and 4 being the highest.  I’m sitting at the higher end of 3 which is pretty good but not good enough to start back on Temodar which will obviously take the count down again.  We’ll wait a week and see where the ANC is.

As an aside, I have to post this picture of my son Keegan because I think it’s hilarious.  Cheers.

Subscribe by Email RSS Subscription

Our entire house has been sick!  I’m sure this all started with my cold last week.  As you know, I paused chemotherapy again beginning last Saturday.  I called my GP on Monday and he prescribed azithromyicin – a 5-day course.  That seemed to clear it up but as of Wednesday I started into a deeper cough but not as constant.  I spoke with my neuro-oncologist and we agreed to stay off of chemo until next Wednesday providing labs that I will take on Monday come back ok.  If my cough remains, then I’m not sure what we will do.

In the meantime the cold spreads like the London fog!  Early on Thursday morning, Aidan comes into our room crying and coughing – the cough sounding like a seal (obviously croop).  All he could say in between coughing and crying was that his cough was scaring him – poor guy.  It scared me out of bed too.  About that time, Rachael wakes up and says “Mark, I need help.”  Hmmmm, ok, no problem.  I get up.  60 seconds later, Keegan starts crying in his room.  Wow – the train has left the station and I don’t even have my slippers on yet!  I thought to myself, “I say it all the time, be grateful for every day, but this might be a day that I am just a little tiny bit less grateful for – time to put on my slippers.”

I will spare you the details but the first 1-2 hours were, shall we say challenging.  Rachael felt bad all day long.  The day before, Keegan had been to the doctor and was diagnosed with a double ear infection – started on antibiotics.  Aidan was missing Breakaway at Bayside Church, a great 4-day summer camp and at home – albeit the healthier of the bunch.  Cough-drop for Aidan, Scooby-Doo movie.  Check.  Rachael in bed, pillows and covers over head, ear plugs in and dead to the world.  Check. Keegan, well – we won’t go there.  Check.  Meanwhile, I’m telecommuting so I was fielding emails and when they did nap, I was able to work on some key items for the office.

In the end, I rested at 7:00pm – that was special.  But that’s the way the day was.  I ended up spending some of the evening putting some home movies on the computer and started to build a DVD of Keegan from birth to 11 months that I’ve been wanting to start.  It’s coming out pretty good.  That was a good release for me.

I will say, and Rachael and I talked about it today – it was this time last year that the day was growing near (9 days from now, June 29, 2007) that my craniotomy was planned and it was 2 weeks after that when Keegan was born on July 13, 2007.  The point?  This day wasn’t so bad!  It puts things in perspective – our trial.  We can march through anything really. 

This weekend we will try to recharge our batteries and rest up for next week.

Subscribe by Email RSS Subscription

Happy Father’s Day to all of the father’s out there. I will be picking up the phone to talk to my dad a bit later but am not feeling so well today unfortunately. I have ended up with a nasty cold again – nonstop cough, congestion, heavy fatigue and it came on just as I was starting round 9 of chemo on Wednesday night. I continued chemo until yesterday and each day the cold got progressively worse so I made the decision to pull the plug until Monday so I can speak to my neuro-oncologist. I have more than enough experience with this to know that if I keep going, I can’t ward it off. Chemo drops your white cell count – a harsh cold just won’t improve – your body can’t fight it off most times.

Of course the major concern whenever this happens is developing an infection, mainly Pneumocystis carinii which is why I take an antibiotic M, T, F indefinitely. I am nowhere near having this condition but it’s something that anyone who takes Temodar should be aware of.

So, I decided to skip church this morning and get some rest so I can go to my in-laws with my wife and kids to enjoy father’s day which is always a lot of fun. My son Aidan made some homemade cards which are always nice! So, I want to be there for that and that will be great! Tonight the LA Lakers, my team from the age of 7 are playing the dreaded Celtics, albeit down 3-1 so I will take that in and of course Tiger is on an amazing run at the US Open – who doesn’t love this stuff!!

I will talk to my neuro-oncologist tomorrow and regroup.

Happy Father’s day to all of you father’s out there. Every day is a blessing!

Subscribe by Email RSS Subscription

I was out on a few internet boards this morning and found an interesting post that posed the question “what constitutes a brain tumor survivor?” The discussion centered around whether or not a “survivor” was dependent upon having met some type of milestone in recovery, whether that be measured in time since surgery, clean MRI scans, completion of chemo, a certain quality of life, etc. Without passing any judgement, because I really don’t – everyone is entitled to ask questions, but I was a little bit surprised to see that post. It could be just me, but I firmly believe (and I said so in my reply to this post) that a brain tumor survivor is a survivor from the day they are diagnosed. If that person wants to make the choice to view themselves as such is of course up to them, but the premise is simple to justify and completely appropriate in my humble opinion.

Put it this way. If you are living with something that threatens your life, you are surviving. If you are employing treatment modalities to fight (survive) for your life and, as we all are trying to do as suvivors, maintain the highest quality of life that we can, you are surviving. In many cases we are thriving and this is a blessing. Let’s put it another way. Suppose you are shipwrecked and you are the only one on the beach. You feel completely alone (as many of us do the day we are diagnosed). Are we dead on the beach? Let’s say that being shipwrecked is being told we have a tumor and sitting on the beach is our circumstances. We could choose to view this whole situation as the end, just as we could our brain tumor diagnosis. Again, are we dead? No. We can go climb trees, find coconuts, food, shelter (i.e. treatments) and survive – right from day #1. My point is we ARE survivors, from the beginning. There is no magic milestone. There is no graduation ceremony at a year or six months that we attend where we get a diploma that says we now have a Masters Degree in Brain Tumor Survivorology. So you walk with a cane? Ok. So your vision is impaired? You have major neurological deficits. We are survivors. Period. It’s all in God’s hands anyway and as survivors, we can be examples for others. There may be people in your very family that will have the fight of their life 10 or 20 years from now and when they do, they will remember – yes, they will know how you are facing your adversity, with courage, strength and hope. And that may be the very thing – and could be the only thing, that pulls them through. Think about that.

We live with brain tumors and we live with zest – we try to live each day, for each day. The past doesn’t matter. It’s gone. The future doesn’t matter either. I had to plan out some things, and I’ve talked about that in posts. As a husband with children, I have everything lined up correctly so if something does happen to me things are handled. Other than that, we live in today and we are survivors and in many cases we thrive…

Subscribe by Email RSS Subscription

Here is a 50 minute video presented by the Central New Jersey Brain Tumor Support Group.  These are brain tumor survivors who deal with the same circumstances we do if you too are facing a brain tumor diagnosis.  They share their stories and these are very positive stories – people who are facing grade 3 and 4 brain tumors who are getting along well.  I would encourage you to watch this.

It is amazing if you haven’t ever been around other survivors or formed relationships with others how there is this common zeal for life.  We have a different perspective, now.  I have talked about this before.  It’s not that I didn’t appreciate life before – I just look at life differently and I live every day more fully.  Put simply, when your life is placed in jeapardy and could be taken from you, your perspective is rearranged for you a little bit.  And, in my view, that’s not exactly a bad thing.  There is positive in all of this.

It’s about looking forward.  You can’t get stuck and stay in one place – be stagnant and dwell on the diagnosis for example.  Ever try to sit on a bike without going forward?  Doesn’t work – it falls over.  We have to move forward.  The survivors on this video are all moving forward.  Check it out.

 http://video.google.com/videoplay?docid=3738959408302608292

Subscribe by Email RSS Subscription

I just read a story on MSNBC regarding the treatment plan for Senator Kennedy. It really just underscores the standard of care today with regard to malignant gliomas. As you know if you are a consistent reader, I have a grade 3 oligoastrocytoma. Although not publicly stated, most believe due to age and other statements that have been made that the Senator is dealing with a grade 4 glioma or a glioblastoma multiforme. Either way, the standard of care is mostly the same – surgery followed by concurrent radiation/chemo using Temodar followed by chemo (Temodar) and perhaps another chemotherapy drug such as Avastin. However, for grade 4 tumors, there are a lot of other options because of the sense of urgency.

Dr. Allan Friedman at Duke is performing the surgery and he is one of the imminent Neurosurgeons in the country if not the world and a giant in the world of research. I put up a post back in Janurary about a colleague of his, Dr. Henry Friedman (no relation) and a research slideset that he presented at the National Brain Tumor Fall Teleconference – Treatment Update for Brain Tumors. It’s highly technical in areas but it is worth going through. This slide set is also posted in my Resource Library along with many other resources that you might find valuable.  Dr. Allan Friedman heads up Neurosurgery at Duke while Dr. Henry Friedman is a Duke neuro-oncologist.

As of December, the Duke “Standard of Care” was described in this slide by Dr. Friedman – it includes a variety of options that you’ll find in the slideset including Gliadel wafers (embedded in a tumor cavity during surgery), the use of Avastin, Temodar, another chemo drug called Tarceva, CCNU and some clinical trials such as a vaccine they are working on:

I would recommend that you download the slides and go through them just to see what treatments are available and to see how deep these options can get. There is so much more to this than just going to your doctor and hearing a few things. I know many of you don’t do this so I am not inferring that – but I think we all need to be our own advocates and I would venture to guess that this material and the sheer volume of options can be intimidating to anyone – it is to me. Therefore, we need to keep going and stay on top of these options, even when we are well, just to know where the research is heading.

The take-away for me from today’s news? There is a standard of care and the absolute best that the world has to offer indicates that surgery followed by radiation (for me it was IMRT) and concurrent Temodar followed by 6 months to a year of Temodar (6 months is the general standard). Of course, this is different/tailored based on the case. As I stated, grade 4 tumors are an entirely different ball game because the survival rate is not very far out – so lots of options exist as shown above. But, the general decision tree and staples remain the same.

The bottom line is we are blessed to live in a world where so much exists to help us.

Subscribe by Email RSS Subscription