Oligo Woe Is Me

Oligoastrocytoma.  Sounds more like something the Starship Enterprise would encounter in the Delta Quadrant rather than an offensive growth in my head.  And if Picard and his crew were handy, there would be no problem here at all.  Dr. Crusher would just wave that little flashy thing over my left ear and I’d get back to my duty station.  Which would probably be a gold shirt position in Engineering middle management I’d think.  I’d hopefully report directly to Geordi LaForge.

My initial results post from Friday pretty much went into a tailspin starting when the second consultation of the day began.  So pretty much forget that one.  Consider it obsolete.  Just another opinion really.

The specific makeup of my particular style of tumor occurs only with about 2.3 percent of all primary brain tumors.  So, like many things about me, it’s a rarity too.  Adding the complexity of where it is and what it’s dancing around with makes the whole thing “special”.  Hurray.  I have a “special” brain tumor.  Go figure.  I can’t just do anything simple.  Never could.  I always have to take it over the top.  I guess that’s just the ABC’s of me.

From a treatment and prognosis perspective, there is no question that getting it out-out-out is by far the best possible situation.  Unfortunately, that is not a simple task.  In fact, there are only a handful of surgeons that even practice the resection of a tumor like mine.  The most common treatment is blast it with chemotherapy and photon radiation.  And hope for the best.  And hope for longevity and ultimately survive as long as possible.  There are a whole lot of statistics out there that propose to estimate the survival rates in a timeline format.  But unfortunately, the statistics are simply not accurate enough to really take with any accuracy because virtually every situation is different.  Brains are different.  Each of our functional junctions are slightly different.  Different pathways.  Different densities.  Different clusters of synapse areas.  It’s quite elaborate as you might already imagine.

Based on a very strong opinion of our primary neuro-oncologist and others from Mass General, we are gathering and sending all materials that we have in hand such as the multitude of MRIs, CAT scans, biopsy results, etc and sending it all to a Master Jedi Brain Tumor Specialist in San Francisco.  This surgeon and his team are considered among the very best on Earth when it comes to “inoperable” brain tumors.  Let’s call him Master Jedi Mitch.  Master Jedi Mitch will look at the materials and make a decision if he thinks there is a potential for getting it out.  If he feels the potential is there, Kasey and I will get out to San Fran post-haste and I’ll undergo a day or two of very intense brain function mapping down to the superfine detail.  If that information shows the likelihood of a successful extraction without serious collateral damage, then things will quickly go in that direction.  If not, then the following steps are the same with or without the surgery.

I’ve been recommended for proton radiation to avoid the more common photon radiation based on the various elements of the overall situation.  You can Google if you want the fine detail, but proton radiation is a far more focused and accurate method of delivering the helpful radiation without damaging the surrounding healthy brain stuff.  And in my particular case, the surrounding healthy stuff includes some mighty important functions such as speech, fine motor skill, and control of half of my torso.  Other things like logic and multitasking are linked in as well.  I’d like to hang on to all of them as much as possible.  But that is not saying that I wouldn’t make the trade-off of some function(s) in trade for longevity.

The proton radiation would happen simultaneously with chemotherapy via Temodal, which is a newer pill-based treatment which thankfully avoids the daily intravenous bummer.  I would be spending six weeks in Boston for this treatment since proton radiation therapy is only available in 8 cancer centers in the USA.  It won’t be fun, but I will commit to use the time wisely.  More on that down the road.

So, to summarize:

Best option:  Master Jedi Mitch extracts this thing from my skull, I get proton radiation and Temodal chemotherapy.  I go into perpetual remission and live out my normal life with just the black cloud up overhead somewhere with the ever-present knowledge knowing a storm could build up again.

Second best option:  No surgery, just the proton radiation and Temodal chemotherapy, frequent MRI’s for monitoring what progress is being made, and hoping for as much longevity as can be had.  Which will simply be an unknown until the end of my time.  There would just be no way to predict something like this.  The regular MRI scanning would be the only tell-tale of if things are growing or shrinking or reaching out to other more vital parts of my central computer.

Well, that’s about all I’ve got in me for now.  I’ll be sign off on this entry by assuring all of you that I am feeling strong in mind and spirit.  The future really is unknown for each and every one of us.  I just happen to have a little hint of one possibilty that may be my ultimate demise.

And now a quote from one of my favorite fictional characters: 

“I would like, in general, to treat people with much more care and respect. I would like to climb a tall hill, sit in the cool grass and feel the sun on my face.”

 ~R

So we first met with the head of brain surgery. This is one of those guys with the mahogany offices and is tops in his field. It was his opinion that the risk of operating and attempting to take this thing out outweighed the likelihood of a successful procedure. He had some fabulous images that showed exactly what and where the tumor is and what parts the functional areas it has wrapped into. Some pretty important parts. Comments and concerns of loss of speech and potential paralysis of one or more physical appendages had a play in those risks. He did suggest that not doing surgery at this point does not eliminate the possibility in the future should chemo and radiation not have enough favorable results on things. It just that the risk at this stage does not warrant the action of trying to get fancy.  There’s one more opinion to add to the list.

Next appointment is at 2:30 with the head of neuro-oncology who will discuss with us his perspective and opinion on the best approach to treatment. And then sometime in the next week to ten days the process will begin. If anyone knows where I can find a reasonably priced Flock Of Seagulls wig, please let me know.

More later…

Part 2

Didn’t get to the hotel until 7pm.  Dog tired.  The blog is gonna have to wait.  There’s about 34 more chapters anyway, and 32 of them are still absorbing into my grey matter.  So I’ll just say goodnight for now.

🙂

Well, it’s a little after 2am again, and here I am blogging.  in just about 10 hours we sit down for the first of “the meetings” with the various really smart people who will share the detailed info and give us the perspective on things.  And then over the next night or two some decisions will need to be made.

I’ve done well keeping my mind and spirit occupied with enjoyable things.  Tonight my little Sadie  Rose was sobbing at sleepytime so I seized the opportunity to snuggle in bed with her and get her to rest easy.  About 1:55am she elbowed me in the nose and now I’m here blogging.  Those love taps can hurt sometimes.  And least it wasn’t the all-too-common kick in the pills.  It’s hard to find any humor in pill kicking…even when it’s accidental from a sweet sleeping four-year-old.

I can no longer force the aforementioed speculation out of my front and center.  What will I learn today?  Routine treament for routine brain tumor?  Will I need to find a sweet  “Flock Of Seagulls” wig to enhance a thinning coif?  Will  it be some radical new technology that will make it all go away?  Or am I just plain screwed?  Questions questions questions flooding into the ping-pong-ball-enhanced mind perched upon my shoulders.  What does the cosmos have in the plans for me?

One comfort is that I truly believe I am in very, very good care.  The two doctors that are “in charge” of my particular case happen to be the guys that are the top dogs at the Mass General Brain Center.  These are very serious dudes.  Thier job is saving peoples lives.  Talk about job pressure.  Yikes.

It’s almost 3am now.  My plan is to kick the woodstove back up, wrap myself in a comforter, and put something really tasty on my fancy audiophile headphones.  And wait for the sun.

~R