Jonathan Robinson Jonathan Meyer Robinson

First post: 1/18/2017 Latest post: 4/24/2017
Dear friends,

Happy 2017!  May this be an
awesome year for everyone and our dear world.  It seems like we’re in a
time where the normal order of things has been ruptured and anything (!) is
possible.  For me personally, this is ever so true.

As some of you already know, I was
recently diagnosed with cancer. To be exact, two cancers, Perianal Paget’s
Disease and Rectal Cancer.  Yeah, a bummer and pretty surreal given that I
feel great and have virtually no symptoms.

But, honestly, I haven’t had much
time to bitch and moan, as I’ve been too busy preparing for treatment, doing
everything to optimize my health, and visualizing a positive outcome.  

For those who didn’t know any of
this already, I apologize for not being able to talk to you individually. 
So, to bring you up to speed, here’s some background details and an update on
what’s going on.

Paget’s Disease is a very rare
skin cancer that is not very well understood, but it appears to be connected to
the Rectal Cancer.  The Paget’s was detected in mid-October.  That
led to a series of tests, scans, and a colonoscopy, which found in the lower part
of my rectum a suspicious mass, which was previously thought to be simply a
hemorrhoid.  

In mid-November, I had surgery to
remove the mass so it could be biopsied.  At 9:30 the night before
Thanksgiving, I received a call with the news that it was a cancerous tumor and
that it had begun to invade my sphincter muscle.  Some news to begin the
holiday.  The next morning, I awoke to see a huge loving smile on Heidi’s
face.  My wife, always ready for a new adventure!   That helped
(and really set the tone for how we’re dealing with the situation), but I still
had to sit in bed for a while letting it all sink in before calling Jasmine and
Maia to share the unwelcome news.  Thankfully, they were together at my
sister Eve’s in NYC with lots of family around.

Subsequent to the diagnosis, I had
a PET scan, which confirmed, much to my relief, that there are no other cancers
in my body and no metastases.  Since then, I’ve received second, third,
and fourth opinions, all confirming that the only course of action is surgery to
remove the Paget’s and to remove my rectum and anus in a procedure know as Abdominoperineal
Resection (APR). 
Ouch!  Pretty intense and I will have a permanent colostomy, to
boot.  All of this is done in one gonzo five-hour surgery with two
colorectal surgeons and a plastic surgeon.  This is scheduled for January
19th at Kaiser Hospital in San Francisco.  

In my case, surgery is the
cure.  There will be no chemo-radiation before the surgery and after
surgery, chemo will only be necessary if cancer cells are seen in surrounding
lymph nodes, which, thankfully, all tests to date have found no evidence for.

Obviously, this is not something
I’m looking forward to and I’ve had my share of of dark thoughts, but I remain
optimistic and hopeful.  The cancer was caught relatively early and I
believe I’m in very good hands.  The surgeons seem top-notch and I’ve been
incredibly impressed with Kaiser staff and how well the system seems to run.

I’ll be in the hospital for 5-7
days and then there is an estimated 2-3 month recovery period at home. 
All the physicians say that since I am otherwise in excellent health, my
recovery should go well.  I’ll be up on my feet standing and beginning to
walk within days of the surgery, though it will be 2-3 weeks before I can
sit.  I expect the pain management will be excellent and my adjustment to
life with a colostomy will come without too much grief.  

I’m also working with some
excellent complementary and alternative practitioners to get my body and immune
system in top shape for the surgery, for healing, and to help ensure the
cancers do not return in the future.  Never!

Recently, I was lucky to have been
introduced to a woman who had the same surgery five years ago.  She’s an
active mountain biker whose life did not slow a bit after recovery.  She
is quite an inspiration and I’m optimistic that I too will live an active (and
long!) life on the other side of this bend.

Ultimately, the best thing that I
have going for me is the amazing emotional support and “professional oversight”
from Heidi and the love and attention of Jasmine, Maia, and the rest of my
family.  I was lucky to be able to spend Christmas in Maine with the
Biegel clan and New Year’s weekend with Eve and her family here in Napa. 
Jasmine will be coming out the week I get out of the hospital and my sister Liz
the following week to be my personal nurses.  Maia will take over during
her mid-February break from Brandeis.  Also, I am especially thankful to
Heidi’s cousin Karen in San Rafael, who has been a key ally in pulling my
medical and support team together.  

As for you, my friends, I’ve
received lots of calls and emails expressing concern and love.  Please
forgive me for failing to respond in many cases.  I am so grateful for
having all of you in my life and want to keep you in the loop as much as
possible.  To that end, Heidi and I have set up a page on CaringBridge to
provide updates, to let you send messages, and for those of you in the Bay
Area, a way to schedule visits and help out. 



https://www.caringbridge.org/visit/jonathanmeyerrobinson (https://www.caringbridge.org/visit/jonathanmeyerrobinson)

I’m not sure when I’ll be ready
for visitors, but I look forward to seeing you when I am.  Please feel
free to respond to this email, I just can’t promise a reply, at least not a
timely one.

My love to you all.  

Be well,

Jonathan

CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health journey. Learn more about CaringBridge.

To interact with Jonathan’s website, sign in or register today.

By registering with CaringBridge, you will join over 300,000 people a day who are supporting friends and family members.

Sign In Or Register
SVG_Icons_Back_To_Top
Top