Oligo Woe Is Me

After Kasey being employed there a year and a half, and my three months there, I felt a home where I could spend a lot of years.  I knew it was a “different” organization when I showed up on my first day.  I had finally reached somewhere I could make a difference…albeit in a small way.  But a small way, many times over with my many teammates, is a huge effort.

Unfortunately the cosmos has different plans for us.  Tell you what…lets leave the “unfortunately” part out of that.  The future is unknown.

Kasey and I spent a lot of months trying to manage my care with Massachusetts General Hospital and Fletcher-Allen.  It was frankly impossible…and Fletcher-Allen just is not able to deal with such a thing.  Not effectively.  No fault of theirs, but we really needed to go so I could get the best care possible.  That being the mega-excellent Pappas Center for Neuro-Oncology.  We needed to live in a place less than two hours from MGH.  I go in for a chemo treatment every two weeks among other appointments.  I take the train down and the bus back.  That’s the treatment for now.  And we live among family.  Something we didn’t have in Vermont.  So we sold the house, packed up what we could, donated the rest, and we went.  It all happened pretty fast.

We moved to a town called Cape Elizabeth, Maine for two basic reasons.  One being great schools.  They really are top notch.  Ninety+ percentile of all schools nationally.  The other being my care from a top-notch brain cancer center.  The town is just south of Portland and it’s a small quiet town and I can walk everywhere.  I cant drive any longer, and my personal chauffeur needs a break.  I can get to the post office, schools, library, etc. all within a mile.

We want to thank you all.  For being you.  For being concerned.  For caring.  For showing that care.  For all that you’ve done for us.  Thank you, thank you, and thank you.

Peace and love,
Kasey, Cooper, Sadie, and Rob

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