Oligo Woe Is Me

We left our life in Vermont and relocated ourselves in Maine.  Less than two hours from Mass General and surrounded by Kasey’s family.

Our team from Massachusetts General Hospital was having major challenges working remotely and having local doctors do what the MGH  people told them to do.  Agreed…very hard.  Doctors have different opinions.  In our case there is one at MGH.  “The Hoch”.  He’s the man.  He’s no BS, no bedside manner, just to the point.  He keeps his eyes on the ball.  He saves the emotional stuff for his practitioners and nurses.  So in order to stay with extreme top notch care, we moved.  It was the right thing to do.

We sold our home.  Thinned out a lot of things.  Whittled down.  We purged.

Just south of South Portland there is a “hidden” community called Cape Elizabeth.  It all of the sudden stops being Portland and is a country drive through several State Parks and a small town.  We’ve rented a home where I can walk everywhere including the post office, schools, coffee shop, library, and so on.  .  I can really walk to everything.

An equal and only other factor was the school system.  It had to be top notch.  We researched it hard and our schools here are nationally ranked nine out of ten.  Not too shabby.  There’s no supervisory union.  There no additional schools that are part of things.  It’s a standalone K-12 in three separate buildings, which are all on the same grounds. Which is just up the street.  Which makes it ideal.  I can walk the kids to and from school.  We are so close that Coop has to walk.  Sadie will too when she hits first grade.

Our home is pretty standard.  A small home in a neighborhood of small homes.  I no longer want (or need) a 3,000+ square foot home with multiple living rooms, 4+ bedrooms, home theater, and so on.  I want a cozy home that fits us all…and that’s it.  The kids share a room and have the upstairs to themselves.  It’s a cape so it is smallish with dormers and fits them well.  Kasey and my bedroom barely fits a queen size…but we just sleep in there.  Instead we have a first floor rather large office.  This is where I work.  And a large workshop in the basement where I can manufacturer those things I do and sell them on eBay.  Well, once the kids go back to school.

So we are settled.  We are happy. We are glad to be out of our old house.  But we’ll miss the friendships and support we received and are forever grateful.  I know we’ll keep in touch.

Now on to my health.

I had a hard time waiting for another set of MRI images when I found out from the ones in June that my necrosis (good brains swelling badly)  was out of control.  The Hoch told me that a chemo called Avastin was being used for an alternate use which happed to  be dealing with necrosis.  And after two-and-a-half months, I was terrified what the new MRI was going to show.  It was either A) the necrosis was as bad or worse.  Furthermore, there is no cancer growth as this point.  It was B.

B!!!  Splendid.

So that’s exceptionally really good.  Next MRI three months.  I need to Amtrak/bus to Boston every two weeks for an infusion.  Then I have two  or three days of fatigue and I’m OK again for the rest of the two weeks.  We decided it’s just saves us gas money for me to ride down mass-transit by myself. Plus it gives me time to reflect on everything that happed to our family since this all began.

We can hope for improved life quality.  I sometimes need a cane to get around.  Well, most of the time but I don’t use it.  I should.

Well, that’s the update.  Sorry it took so long, but with moving and getting kids enrolled and other life things it got away from me.

Thats all.  Peace and love,

Rob

…but until I meet with my oncologist I don’t want to jinx anything.  Just know that I am feeling fine.  Speech is impaired, but I can live with that.

Rob

Morning folks.

So…not so much of good news on Friday.  Here’s the lowdown:

A) The swelling from the radiation is that of a likeness that my doctors have never seen.  And it may miraculously go away.

B) The original shot they were radiating is dying, but the “flair” is profoundly larger.  Which means the tumor has grown so significantly that, well, you know.

I go in for another MRI on June 3rd.  And if the miracle didn’t happen then they need to open up my skull for another deeper biopsy so they can try to see what’s going on.  Although I think they already know.  Clearly the Temodar was not working to stop anything from progressing.  Nobody “said so”, but it appears that I’ve now progressed from Oligoastrocytoma Grade 3, to a Gliobalstoma Grade IV.  The most cursed of all brain tumors.  The biopsy (unless the miracle happens) will tell that.  Although the scans pretty much show that already.  It was the size of a quarter.  Now the flair is a large egg.  Yeah.  Great.  Did I mention that having a brain tumor totally sucks?  I think I might have.

So now what?

I plan to enjoy this summer as much as we can.  While I won’t disregard anything the docs want me to do, I say “damn the torpedoes”. 

It’s going to be a great summer.

R