More than meets the eye
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
January 9th, 2011 at 11:32 am
Thanks for the update, Rob. That is certainly a lot of info to process and I’m glad you’re being directed to ‘the Master’! Yes, you are a unique individual and why should it stop at brain tumors? 🙂 Scott has referred to you as ‘the Master’ so it is not surprising that two ‘masters’ should collaborate together. 🙂 I hope he can help you and you can move on with the chemo and radiation. You’re in our thoughts and prayers…maybe you can pick up some Spock ears at the next Star Trek convention in SF? Hugs to you and your family!
January 9th, 2011 at 12:56 pm
Rob, I have been following your journey and I can honestly say I do indeed know what you are going through. I have recently come through a bone marrow transplant after being told I had an “A-Typical” Lymphoma. Mine was very aggressive and by the time they found it I was in stage three and it was on the move. Because they could not find the right chemo combination for me and after two years of chemo, I was told “we can not help you any more and if you do not have a bone marrow transplant you will die within a few months. ” Not a good thing to hear, as you can understand.
I was then sent to the University of MD. They told me I had only a 30% chance of surviving the transplant. Those odds were definitely not what I wanted to hear. Chuck and I talked it over and I decided that I did not want to take those odds.
I decided to go back and continue on with more chemo treatments and think this entire thing over. After doing some more homework I heard about the University of Penn. I got an appointment with the most caring staff I had encountered in my recent illness journey. I received chemo shots 3 times a week for 3 months.
This seemed to slow down the lymphoma but my new doctor still insisted that I have the transplant. She told me the odds were really in my favor because I was healthy, strong and most of all had a positive outlook, just as you do.
After nine months of searching for a donor I finally got my transplant and at this time it is still working. I do have a “cloud hanging over my head” as to the possible return of this dreaded lymphoma. Bus I take one day at a time and I am truly thankful for each and every day good or bad!
After all this that I have told you I can’t tell you enough how important it is to stay positive and to keep on pushing yourself to continue to be positive. That helped me tremendously.
You and your family are in my thoughts and prayers. I will continue to watch for your updates. Please take care and continue to keep a positive attitude!
January 10th, 2011 at 6:26 am
Dear Rob and Kasey,
You are in our thoughts and prayers. It is nice to hear that you are feeling strong in mind and spirit. You have such a positive attitude. It sounds as if you have explored every course of treatment and I know that you and Kasey will make the best plan that will work for you. You have each other to lean on and support each other during this difficult time. We love you. Aunt Mary Ellen and Uncle Paul
January 10th, 2011 at 3:22 pm
Dear Rob and Kasey, my thoughts are with you and your family. I will try not to say the wrong things. It is hard to imagine what you and your family are going through. Based on a brush I had with a life threatening situation, sking accident 2002, sub-durol hemotoma, brian surgery, recovery. At the time, I felt an unexplained strength , I believe it was Gods given grace, because when I think about it today, I should have been so afraid, I continue to be amazed that I was not. I know what you are going through is very serious, I can’t help to notice you seem to have a great sense of humor, good for you. I am proud of you for being so brave, for this is a battle, one in which we have to believe you will win! You have a lot of people praying for you, be strong, and believe. Thank you for this site, so I can keep up to date with your progress. Big Hugs
January 11th, 2011 at 4:40 pm
Rob and Kasey,
So sorry you have to go through this but your spirit and determination are inspiring.
Please know our prayers are coming your way-Rob Mc has kept us informed of your ping pong ball diagnosis-we will follow your progress on your site and think of you daily as you and your family move forward through this.
Love,
Bonnie and Bob McWilliams
January 12th, 2011 at 4:06 pm
Hey guys! Wow, Rob. You never did anything small, did you. I still believe God has a plan in everything, even if we can’t understand what that plan is for on this side of the veil. You guys will continue to be in my prayers through this.
Gotta say – the first thing I thought of when I read the photon radiation was “he’s even looking at getting photon torpedos shot at him! What a Trekkie!”
Seriously – my thoughts and prayers are with you guys. If you come back to the area, please give me a call. Gotta have you meet the wife, kids, and dog. Email me and I’ll send you my phone #.
Much affection,
Jim
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December 21st, 2012 at 2:02 pm
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