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
