10-4-2018
Being a rather private person, I only shared this
information with those who needed to know. I saw no need to give day-by-day
updates on treatments, surgeries and doctor visits. Now that I’m on the other
side of this, it’s a little easier to talk about.
In August of 2018, I found I was occasionally having trouble
swallowing solid food. I chalked it up to eating too quickly but it continued, and
when I dropped 25 lbs in the month of September, I knew something wasn’t right.
My doctor sent me for a Barium Swallow test which confirmed that there was a
blockage. I was diagnosed with Dysphagia and referred to a gastroenterologist.
At my consult, they assured me this is not uncommon and that endoscopy and
dilation should have me back to normal in no time.
So, on October 4th, I went to
the hospital for an endoscopy.
*Accelerate to warp speed*
From the gastroenterology unit, I was
sent to the ER for a CAT scan and they promptly admitted me. On October 5th,
I met my oncologist. On the 7th I underwent surgery to insert a
feeding tube in my stomach and a port just under my right collarbone. On the 8th,
I had my first PET scan. On the 13th I had my first chemo
treatment.
Adenocarcinoma
of the esophagus. I had a malignant mass where the esophagus meets the stomach.
After two weeks in the hospital, I was sent home and underwent chemo every two
weeks through October, November and December of 2018. The month of January 2019 was double the fun with bi-weekly
chemo and 28 rounds of daily radiation therapy.
On
March 29th, I underwent a robotic “minimally invasive esophagectomy”
or as it’s commonly referred to, the Ivor Lewis procedure. “Minimally invasive”
translates to “instead of one giant wound, we’ll give you about 25 smaller ones
all around your torso.” This procedure took 12 hours – halfway through, they
flipped me over and deflated a lung to complete the rebuilding of my
gastrointestinal plumbing.
What
tiny bit of stomach I now have is resting comfortably just under my sternum. I was feeling insulted by the phrase
“minimally invasive” until I saw photos of people who had the traditional
procedure. The scar is commonly called the “shark bite scar” for good reason –
it actually looks like the person has been bitten in half. Having seen that, I will never again
complain about the dozens of scars and dimples that now decorate my torso.
But I
digress…
Son
O’Mine tells me that when I came out of surgery, I had so many tubes and lines
coming out of me, I looked like a cyborg. They gave me great drugs, so I’ll
just have to take his word for it. After 12 hours in surgery, 2 days in ICU and
a week in the hospital I was home again.
To make a long story short, on June 3rd,
I returned to work part-time for two weeks and then resumed full-time work.
I am
still here because of the brilliant medical team at Midstate Medical Center
here in CT led by my oncologist, Dr. Gerard Fumo. This man is a WARRIOR. When
we first met, he told me “Joni, this is not a “treatable” cancer, this is
“CURABLE.” I responded so well to his aggressive treatments that they turned
what was originally a Stage 3 diagnosis to a Stage 1 (only microscopic cells
left) at the time of my surgery. He and
his team were completely invested in my recovery and they held my hand every
step of the way. If anyone ever tells you there are no angels on earth, they’re
wrong. I’ve met them.
My recovery has been long, but every day is a gift that I appreciate.
The “new normal” takes some getting used to. For example, with the new, tiny,
relocated stomach, I must eat 6 small meals a day – small portions, tiny bites.
So, while I dream of chomping down on a cheeseburger, my reality is that I nibble
like a mouse. No more big bites. Also, it took a while for me to figure out why
overeating made my back hurt – until another survivor explained to me that now
my stomach is higher so if it expands, it competes with my lungs for space
inside my ribcage. Hence, overeating = back pain. And the difference between eating
enough and eating too much is ONE BITE.
*I am taking part in The
Esophageal and Stomach Cancer Project (ESCP) by The Broad Institute of MIT
and Harvard along with the Dana-Farber Cancer Institute. This is an exciting
initiative that lets doctors, researchers, scientists and patients collaborate
to find effective treatments and diagnostic procedures. I have had (knock wood)
an exceptional response to treatment and if studying that can help someone
else,#CountMeIn.
*Note: the ESCP project is currently on hold while our labs process
COVID-19 tests.
So
that’s the scoop, folks. I’m back. 50 lbs. lighter, a little worse for wear, a lot more grateful, and enjoying life.
Because
I’m still here.