Archive for December, 2011

Eve of Destruction

Friday, December 2nd, 2011

On this brain tumor eve…one year ago, December 3rd, I had a moment of sheer terror before I woke 3 days later in the ICU.  I had been intubated and stuck with so many probes and IVs they had to build an Erector set around me to keep in all in.  What…who…where….

I’ve been extremely lucky to have my dear wife looking out for me and being my caretaker.  She’s a miracle worker. She is awesome.  Enough said.

Now is a much simpler lifestyle compared to where we’ve ever been.  We have a small rented house in Southern Maine.  We have one economy mini-SUV.  Our belongings have shrunken by 2/3.  If only I had known about this simpler existence we may have done it earlier.  But we needed a nuclear implosion as a catalyst.  I have a brain tumor.

Treatment has been advanced.  With proton therapy, Temodar, and Avastin things seem to be going well.  My proton therapy went as planned.  As soon as I finished that I got a heap-load of life-threatening necrosis. The Avastin took that away miraculously.  I have no new cancer, and the Avastin is working.  Unfortunately Avastin does not work forever.  There will be a time when the Avastin stops working as I then work on clinical trials or whatever comes my way.  Avastin carries extreme side effects.  Like dropping dead from hemorrhaging or blot clots making their way to the lungs. There are many more but I save you the gory details.  I am aware of one thing.  Avastin is keeping me on the steady trail.  Regardless of the side effects.  Let’s hope that none of them surfaces.

We wish to thank all of you for your support and good wishes.  I want to point out a couple (who wishes to be an anonymous) for their helping us.  We were able to get out of the house we owned…and that was a huge (and I mean HUGE) relief.  You know who you are.  We were complete strangers, aside from the acquaintance relationship my parents had with them.  Take pride in helping out making an impossible situation possible.   We would have had a foreclosure for sure if it wasn’t for you!

As many of you know I am retired.  I lack the speech, balance, and social life I once had.  My cycling days of getting around are over.  I wrecked my bike, almost slid under a tractor, and was out of it.  An ambulance rushed to the scene and what was my transportation is over.  That would have been a hoot.  Here I am fighting the worst sorta heath issue and I get run over by an oil truck.

So now I got my eye of these mobility scooters.  That will give me the transportation I need without tipping over.  It’s got 3 wheels!  I need transportation or I may just go insane.  I’m sitting around the house way more than I should.

I’m clearly not the writer I was.  It takes me a lot of time to even type this message.  One of the many results of having brain cancer.

So that’s the update.  Life will be in 2 month stretches.  I’ll not know a prognosis because there isn’t one to be had.  I’m stable at the moment and that is good.  And I am thankful for that.

This is Rob.  Brain cancer patient.  What a long strange trip it’s been.

(I know that I have plenty of emails to return.  It’s just hard working on the PC now.)