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

So it’s been a while. I apologize as it’s very diifficult to write. It’s very difficult to speak. But I’m in here. All of me. Its hard to communicate. I sign my name with an “X”. I do better with my iPad, which has been indispensable, but I have a frustration factor of 7-9 when trying to write something. I have not been writing as a result. My novel is on hold and my reality-based short stories are rare.

I will eventully write back everyone who has been so kind in contacting me. It’s just that so many have contacted me I have to do them in order. And with the writing problem…you can see where I’m going with this.

The tumor is mostly dead. As it should be. After all the trouble it’s caused. It will always be there in some funtioning way or another…hopefully in a dormant stage. The problem is the huge amount of swelling of the good tissue around it. It’s huge. Its three times a huge as the tumor itself. Which has other complications. It changes every time I go in for an MRI. Which is what good tissue is supposed to do. Is just that it has prominently compromised my speech, my typing, and my right side musuclar functions. I walk with a cane for any distances. I like to call it my walking stick. It just sounds better.

So I have three options:

-I wait. I wait until the swelling naturally goes down. This could take 3 months or 3 years.

-I opt for surgery where they take a menlonballer and scoop out the dead tumor tissue making room for the swelling to run it’s natural course while having room to breathe. There are minor risks with major impact. After all, they are operatiing on my brain.

-I try a clinical trial that has a chance of reducing the sweling is somewhat short order. Like 1-3 months. Like most clinical trials there are side affects.

I feel otherwise normal. Well, as normal as can be. I don’t get headaches, I don’t feel any pain where I need to take something. Of course I’ve got my daily pharmaceuticals in adbundance. I stopped working out which is bad. But I get my exercise by being outside and active while the weather is good.

It really is my inability to communicate. It’s been frustratiing. For Kasey, for my kids, for anyone. I don’t mix in with casual conversation, my wit is not there, and I just tend to be quiet. Which you know isn’t me. I can’t go into a store without someone to interpret for me.

But I do get compliments on my mohawk. So that’s good.

Rob

…spent 4 hours in the ER. This was the first seizure I’ve had since my intial one that clued me into the fact I had brain cancer.

It was horrifying.

My speech is getting worse. I had expected that.