Oligo Woe Is Me

Long time, no blog…

Let me first thank everyone on behalf of us Bromee’s for all that you’ve done for us.  We are eternally grateful.

I suppose many of you are wondering how I am doing.  Well, you know, as they say take each day at a time.  Some days are better than others.  Physically, I’m ok.  Not fabulous, not sickly.   Pretty much just ok.  I continue to take the prescriptions, that I wont be taking forever, in a “taper off” sorta thing.  One at a time.  Slowly.  Yes…gotta do it slowly.  Or else scary bad things could happen.  Someday I’ll only be on three or four prescriptions several times a day.   

From a cognitive perspective, here’s the story.  I continue to have speech issues.  I can think what I’m trying to say, but many times cannot get the words out.  Because I am so aware of it, when it’s happening I kinda start to “panic” and that makes it worse.  So I feel like I am much less articulate than I was.  I was never one to step on my own speech.  Well, not on a regular basis anyway.  Now it’s part of me that I need to get used to.  I also have a lack of ability to multitasking as I used to.  I get flustered trying concentrate on more than one thing at a time.  And even sometimes just one thing.  I’d be completely screwed if I didn’t have Kasey.  She continues to keep things together. 

We’re heading back down to Boston this Friday for my next MRI.  Like all MRI’s since the fateful day, I fear them.  I’m not claustrophobic or have anything like that, but having my head strapped down and put inside of a tube has a different meaning for me as it probably does for all of you.  For those that don’t know the superfine details of the story, on December 3rd I went in to the tube and nearly didn’t come out alive as I had a brain tumor induced gran mal seizure in there.  So yeah…I know it must be done, and I am on a truckload of anti-seizure meds that nothing would likely go the way it did on that Friday in December.

Another reason for my visit to Boston is to see if the chemo-drug I was on during my stay down there is working.  If so, I will start on a 5-day on and 21-day off schedule until further notice.  I do have another MRI again in six weeks.  That one will hope to show how much of my growth was annihilated.  And how much might be there to continue to do it’s damage.  And a prognosis…if there can be one.  A prognosis for my condition pretty much doesnt exist.  They come up with something and most of the time it’s quite different.

 This is the 40th post.  It ends the chapter of “The First Day Of The Rest Of My Life”.  And so it goes.  The future is unknown.   

“Live as if you were to die tomorrow.  Learn as if you were to live forever” –  Gandhi

Peace and Love,

Rob, Kasey, Cooper, Sadie, Schatzi, and ZenFish