Cancer Comes to Visit

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 4^th, 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 5^th, I met my oncologist. On the 7^th I underwent surgery to insert a feeding tube in my stomach and a port just under my right collarbone. On the 8^th, I had my first PET scan. On the 13^th 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 29^th, 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 3^rd, 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.

Everywhere you go, there you are...

Happy Autumn, Mr. Bear...

There you are, surrounded now by perky yellow mums, and as if that weren't bad enough, they've exchanged the stars and stripes for a flag with a basket of peaches on it. Apparently you are the central piece in the neighbor's "Homage to the harvest."

When you were a mere sapling, did you ever imagine you'd end up as a painted lawn ornament?

It's an interesting topic. I had this conversation with my nephew recently. How we end up as adults doing something completely different than we originally intended to do when we started out as youngsters. And yet, it fits.

Myself, I went to college, but I studied what was expected of me. It seems I spent a great many years doing what was expected. I held jobs for years and did them well, but without any great passion. And now, I find myself in a job that was dropped into my lap - and I find that it is just... right. I am passionate about my work, it requires all of the creative skills and talents I possess and it is fulfilling. I make a difference.

That matters. It's important to know that what you do makes a difference. That your presence here on this planet will not go unnoticed.

Some people know from the start exactly what they want to be and go about single-mindedly accomplishing it. I tip my hat to them. But some of us take a more circuitous path. We "evolve" into who we are meant to be only after taking several wrong turns.

But then, I think that's why we're put on this earth. It's not where you get that matters... it's how you get there and the lessons you learn along the way.

The journey is more important than the destination.