When we first spoke with Dara about hosting an event in New York, we were excited to work together on hosting an event yet heartbroken to hear that her father’s battle with esophageal cancer was similar to our loved ones battle. It is our hope that this event will bring much attention to the dire need for awareness, prevention, improved and routine screenings, innovative treatments and funding for esophageal cancer research.
The Salgi Esophageal Cancer Research Foundation is honored to present to you our 1st Annual Esophageal Cancer Awareness Run/Walk event to Brooklyn, New York. The event will take place on Saturday, September 14, 2019 at Marine Park. The event is being hosted by our lead event coordinator and New York chapter representative, Dara M. and elitefeats. Guests may either walk or run and can sign up online by Friday, September 13, 2019 at 5 PM EST. Volunteers are also welcome. Click here for more information and to sign up!
Here is Dara’s story:
Our Battle Against Esophageal Cancer: Joe’s Journey
“For many people, indigestion, acid reflux, GERD and heartburn are ailments that can be treated with common over-the-counter medications. More severe cases of gastroesophageal reflux might require stronger drugs that can be prescribed by a doctor for as long as symptoms persist.
This was how my father, Joseph M., began his battle with esophageal cancer.
Even though my dad was a smoker and drank when he was younger, there were no signs or symptoms of any complications until ten years after he’d been working at a print shop in Queens, New York. Exposed to paint thinners, chemicals and other toxic fumes that emitted from heavy machinery at work, he came home every day wreaking of industrial substances.
His heartburn began around 2005 and was a mild nuisance, which he solved by devouring dozens of boxes of Tums every week. When he went to the doctor a couple of years later to complain of more painful indigestion, as his diet began to change because he couldn’t eat spicy foods or enjoy pasta sauce the way he used to, they prescribed pills like Nexium to quell the stomach acid and discomfort.
We thought his chronic heartburn would simply need continuous medication until the afternoon of Fourth of July in 2008, when we were in the city and on our way to see the Macy’s Fireworks display – a father/daughter tradition we had for several years. We went to a delicious chicken place that had some awesome cornbread! It seemed to happen so abruptly – as my father was in the middle of eating, food suddenly became lodged in his esophagus. We didn’t know it was even possible for food to get “stuck” in this digestive tract, but he couldn’t get water or any food to flow down to his stomach.
Suffice to say, our father-daughter day was cut short as we left the city and he tried to push the food down with more water, which only worked for so long. Eventually, the food that was lodged in his esophagus slowly dissolved and the scare of seeing my father not being able to eat was only part of the problem.
Another trip to the doctor – and explaining to a gastroenterologist what happened – seemed to rip open another bag of unwanted surprises. The blur began as my father was given appointments with specialists months after that Fourth of July incident. X-rays showed that there was some type of obstruction and tissue inflammation in his esophagus. By September or so, doctors finally ordered my dad to have an endoscopy so they could biopsy the cells.
There were all sorts of words and medical terms thrown around as my dad was scrutinizing and amending his diet – Barrett’s esophagus, esophagectomy…but I will never forget the day we met with a surgeon who followed up on the gastroenterologists findings. The day they told us my father had esophageal cancer. My reaction to this years later remains a numbing haze, even though I recall wondering what this disease was! I knew cancerous cells could develop anywhere in the body, but this heartbreaking news led to a slew of nightmares that me, my dad and I’m sure thousands of other families have had to experience after initial diagnosis.
At first, doctors recommended chemotherapy and radiation to shrink the cells and advised us that surgery was a last resort to remove the cancer and any infected lymph nodes. Before my dad’s chemo and radiation even began, his oncologist recommended my dad have a port-a-cath – or chemo port – placed in his chest to administer medications and blood tests. I will never forget how my dad went in for what was supposed to be a simple outpatient procedure the week of Thanksgiving for the chemo port but instead, as the doctors were inserting it into his body, the tube punctured his lungs. Not only did he miss Thanksgiving of 2008 because his left lung had collapsed, his chemo/radiation treatments were set back by a few weeks as he recovered from the painful blow.
As many cancer patients experience, my dad endured rough chemotherapy treatments and his appetite – along with the cancer – was very slowly shrinking. He was ordered to have endoscopies every few months, which became a scary routine to prep for and recover from. We were told his cancer was in Stage 3 and that there was a chance he’d fight it – even after it seemed to go into remission for a couple of months in summer of 2009.
The hardest part of seeing a loved one suffer as they battle esophageal cancer is knowing that they can’t eat normally, even after rounds of chemo and radiation. Their diets completely change – if they can manage to eat at all – and losing weight becomes a major concern, as they’re not able to take in the nutrients the body needs to function. Drinking nutrition shakes and supplements was also sickening at some point.
Sadly, in early 2010, my father found that the cancer cells had returned. We also returned to the idea of surgery. This would ultimately involve, as the oncologist told us in detail, having part of the esophagus removed and surgeons pulling up and rebuilding a portion of the stomach. This invasive procedure would be two-pronged. Yes, it would essentially remove the central portion of the cancer and some lymph nodes, but there was also the risk of the cancer spreading post-surgery.
One of the worst aspects of having an esophagectomy, as I’ve heard from others with the same experiences, is not being able to eat for weeks or months after the surgery. If my dad opted for the surgery, he would have had to use a feeding tube for a long time and the recovery from the procedure would have possibly been ten times worse than continuing short-term treatment.
My father looked to me for direction – continue with chemo or go under the knife? I couldn’t honestly bear to see my dad having any more invasive procedures and by spring 2010, he painstakingly asked me to enroll him in a hospice program. What drove the knife through my heart was knowing he didn’t want to die and he didn’t want to become a statistic of a cancer that neither of us had ever heard of until 2 years before when he was diagnosed.
It was during this time, as my dad was provided with heavy medications at home, that I began looking up esophageal cancer on social media. I started reading other families’ experiences and diagnosis. It was truly unbelievable to me that all of us experienced this same journey – many only lasting 2-3 years before the battle became too much to handle nutritionally, mentally, physically, emotionally and medically. A lucky handful were able to say they were survivors after surgery.
Every story I’d read, and still read today, is filled with shock at how insurance companies refuse to cover some of the tests for esophageal cancer in its early stages. And then I question, can this cancer be caught early enough somehow to prevent or slow down cells from becoming cancerous? Are doctors ignoring the serious warning signs and pushing pills like they did to my dad before that doomed day which changed our lives?
My family got the call on October 16, 2010, a little over 12 hours after we had to place my father in a facility for hospice. I was only thankful that he wasn’t suffering anymore and he wasn’t fighting to stay alive.
Over the past few years, as I looked back on my father’s battle, I became a runner and subsequently found that it was rewarding to participate in 5K races for a good cause. I’d run races bringing awareness to ovarian cancer, another disease for which there is no screening, as well as testicular cancer.
However, after much research, I’d discovered there was little attention brought to any events focusing on esophageal cancer in New York City. With a growing number of New Yorkers being exposed to toxic fumes and work conditions, no matter how healthy their lifestyles are, I was surprised to find that no one was sponsoring an event to bring this complex cancer to the forefront of the public.
As I continued to read stories about those whose lives were taken by esophageal cancer, I noticed the trends in diagnosis, treatment and lack of awareness/education. Finally deciding that I wanted to help spread the word to more people in my city and give others tools to recognize their own health conditions, I scoped out an organization that could assist with my new mission.
I came across the Salgi Esophageal Cancer Research Foundation on social media and started 2019 with a simple phone conversation with the organization’s Executive Director, Christina. We also shared the same experience, as she explained the passing of her grandfather came after a similar struggle I’d gone through with my father.
With no races/walks, fundraisers or awareness events in my city aimed at esophageal, I proposed we host an event in Brooklyn to bring light to the lesser-known cancer. After a little more research, I decided it would be a great idea to find a race organization to provide the provisions for the event. Working out the details with elitefeats, a race organization I’m quite familiar with, helped bring the mission to life.
Fundraising for esophageal cancer awareness is more than just about coming to our event in September and running for a cure. Through sponsorship and dedication to spreading the word, my ultimate goal is to provide others with tools to make themselves and their loved ones more vigilant when it comes to their digestive health.
The “Esophageal Cancer Awareness Run/Walk NYC” will serve as a resourceful awakening for many New Yorkers who aren’t familiar with this disease. I’m also hoping it will somehow reach medical experts and specialists who often brush off those signs or are hesitant to diagnose something that can become more serious.
Stories like my dads are becoming more and more common and it doesn’t get any easier to recall the way his life ended. My passion now is to keep his memory alive by hosting this fundraiser that will hopefully help others write a different story in years to come.”
To sign up for our Esophageal Cancer Awareness Run/Walk NYC please visit: https://events.elitefeats.com/september-2019-esophageal-cancer-5k