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.

Let’s Catch Up

Grab a 'cuppa

Wow it’s been a while. Sorry for the lapse. A lot has happened since we last spoke. So grab a cup of whatever and I’ll give you the nutshell version.

Divorce: Well, after a few years of separation, Sparky and I finally divorced. Out of respect for Son O’Mine, I will spare you the dirty details.

Move: Six weeks after the divorce was final, I sold the house and purchased a condo. Two closings and one move in one day. A real estate marathon. My attorney was so impressed with my negotiating skills he told me if I ever decided to start a new career as a real estate paralegal, he’d hire me. I’m still considering that.

Preparing to Exhale

Fire: One month after I moved out, while it was undergoing renovations, our old house burned to the ground. Nothing left but the foundation, one chimney and the curbside mailbox. Thank goodness no one was injured.

When the new owners rebuilt, they used the same footprint but a completely new floor plan. Since the house was on a corner, they were able to turn it so that it now faces to the side with a completely new address. It’s as if 30+ years of history has been completely erased. I felt kind of strange about it at first, but now I find it rather freeing. The only good thing that came out of that time is Son O’Mine and that’s fine with me. I left all the lies, betrayals, the emotional abuse and pain behind when I walked out of that house for the last time.  After all those years of walking on eggshells and holding my breath, the fire allowed me to finally exhale.

So, moving on was the most difficult and best thing that I ever did. I was able to purge and only take the things that mattered to me. Everything else, I left behind – in more ways than one.

When I started this new chapter, I promised myself I wouldn’t settle. I had spent my entire life settling for what other people told me I should have, should like, should do. No more. I refused to settle and found the house of my dreams. Life was going great.

Then, in October of 2018, everything changed.