Oligo Woe Is Me

Good morning!

It’s been a while since I’ve written.  I’ve been busy.  Yeah..taking the kids to school, listening to music, hanging out, and generally goofing off.  But then when the kids get home at 3pm…it make up for it with the chaos…so it’s even.

About my heath.  I’ve been on Avastin for about 6 months and its proving to be a good thing.  The only thing is it there’s nothing else that is “next” for me.  Its Avastin…or whatever they might come up with next.  Yes…I’ve embraced the reality.  But “get busy living or get busy dying”.

My scooter arrives tomorrow.  It’s a “pre-mobility” scooter so it’s sporty…as much as a mobility scooter can be.  It’s not that I can’t walk…I do ok with a cool cane for longer walks.  But this will get me out and around town.

Oh yeah.  I got a tattoo.  It says “JEDI” and has the symbol for my Jedi organization.  My next one will be The Beatles famous picture of Abbey Road.

The wife and kids are doing great (other than the fact that dad has a terminal brain tumor).  We’ve talked about it a lot.  We enrolled in the TLC center for grieving children here in Portland.  This is a great organization that helps families go through something like this…even though my aren’t currently grieving.  Hopefully be a long time…but you know.

It snowing out for the first notable time this season.  Of course it’s going to rain later so the 3 inches that we have right now will disappear and be a big mud puddle.

I have a HARD time typing.  This damn keyboard doesn’t read minds!  It took me 3 hours to write this!!  (just kidding).  But It takes me a lot longer than it would have 2 years ago.

I’d like to thank my folks for everything they’ve done and everything they do. It’s too much to detail so I won’t.  I love you Mom & Dad.

So we just keep on truckin’ and look forward to spring.  Stay tuned.

Rob

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.)

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