Jonny’s Cancer Story

Check out my 2/2/20 radio interview
Check out my 9/15/19 radio interview

Before being diagnosed with Stage IV Colon Cancer, my life was overall great. I was working for an amazing company where I developed and found my “big why” in life – teaching. Besides working, I volunteered and chaired for a few non-profits focusing on LGBTQ advocacy, while playing soccer on a local club team.

Life was buzzing by but there was something bothering me. I had symptoms that started innocently when I was 28. It mimicked that of Crohn’s or IBS, which was what I thought I had. On top of that, I had no health insurance or finances to see a doctor or specialist for a correct diagnosis. I remember dealing this these symptoms by ignoring the pain and focusing on building my career and work with various non-profits. Giving way to a “peace of mind” scenario since my job did not provide health insurance benefits – which was not on the top of my mind at the time. It was tough because this was after the turning point of American healthcare with the Affordable Care Act. The reason why my company did not provide this to me was their exception status. It also was a double edged sword too with my age bumping me from my family’s healthplan. This was the biggest regret of my life; not enforcing my right for access to healthcare. After advocating for another year I finally received employment healthcare in late 2017.

This started my surprising journey.

Starting in early 2018 I called countless doctor offices to make a first patient appointment. Frustrated by rejections and no replies I found a recommended office but had to wait TWO MONTHS for an appointment. Once I got in, I asked for a full physical and a referral to a gastroenterologist for my “IBS/Crohn’s” symptoms. My initial physical and bloodword passed with flying colors, which put me at ease for a little bit. Only until I was told that my referral appointment would take an additional two months!

The wait hit me hard emotionally especially as my self-esteem began taking a hit, as the symptoms became worse. But once again ,I kept push ahead and digging deeper into my passion for LGBTQ youth advocacy.

Walking into the doors of my now gastroenterologist, my heart was racing with “what if” scenarios and endless thoughts of what the outcome of my first meeting will be. Surprisingly the meeting was quick and painless; mostly a dialogue of what my symptoms were. The doctor then asked a question that made me choke on my next breathe, “Do you have familiar relations to gastro related cancer in your family?”. In my mind I remembered the time my mother had been dealt a shitty hand with colon cancer, among other health issues. She was around my age when she had a major surgery and from my childhood memories of her having a wig. After admitting this to my doctor he ordered a colonoscopy. Following suit I had another long wait period, wait for it…THREE MONTHS!

After my colonoscopy I received my results immediately. High off the anesthesia I learned that I had thousands of polyps littered throughout my colon. The doctor’s concern grew even more since he couldn’t scope me completely. This is when I knew things were getting very serious. He quickly referred me to a colorectal surgeon…which threw me for a spin (as a was still spinning from the drugs wearing off). Unlike previous referral wait periods, my initial surgeon meeting was scheduled within a week.

In between that scheduled appointment I remember severe pain and bleeding that drove me insane at my workplace. It got so bad that I had to get an emergency CT scan and blood panel to investigate what was going on further. This was my last day week of ignorance bliss.

At my surgeon appointment on July 2nd, 2018 I walked into the doctor’s office to a dry atmosphere with no hint of positivity, something I thrive on. His dry and uneventful voice said something that I could not imagine…Stage IV Colon Cancer. He told me point blank my survival statistics and the little hope that was there for me…a week before my 30th birthday. Almost immedietely I removed those fear moungling notes from my mind and continued to listen. I had tumors littered throughout my colon and four on my liver. Happy Birthday I told myself over and over in my head. I returned to work emotionless and told only one person, then continued to teach classes in my office as if nothing happened that hour before.

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September 2019

26 rounds of chemotherapy later, I have thrived during this uncertain journey. I am very fortunate to have had a positive cancer story, unlike many other ones I have heard or read. It’s funny how much a positive mindset helps any battle whether physical or mental; especially when it comes to having a case of advanced cancer at a young age. While everyone else is getting married, buying their first home or settling into their career I have to focus all of my attention on a disease that I cannot control. My life still consists of waking up, working, playing soccer and then having the ability to work on my passions.

My lead oncologist recommended that I go immediately on a new drug called Cetuximab, along with another drug that I had been on from the prior chemo regiment (FOLFIRI) – Irinotecan. Believe it or not I was happy with that pairing; not as many harsh side-effects, only ONE chemo active agent, and no more chemo PUMP (had to wear a tube like device for 48 hours inserted into my chest). The one draw-back was I needed to go in weekly, instead of every two weeks. This not only meant more visits but also more co-pays that needed to be paid – for each visit. No matter the type of chemo being administered. Every two consecutive Mondays I would just receive Cetuximab, while the third Monday I would get both that and the chemo agent Irinotecan. Cetuximab it turns out is not chemo but a inhibitor that can stabilize or slow down cancer growth due to a unique genetic set up

Nothing has really changed in my life. I still maintain a very active role in my soccer club, while working fulltime and having the availability to travel whenever I can. My attitude is even stronger with each week that passes by regardless of my recent scan results or failed treatment plan. The support network I have is INCREDIBLE, to the point that I can feel the energy continously throughout the day. This is what keeps me being me…don’t let it stop!

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November 2019

GUESS WHAT?! The last chemotherapy regiment that was only set

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Common Questions I Get

What Went Through Your Mind?

After my official diagnosis, I felt oddly satisfied with myself. I now know what has been attacking my body, making me feel terrible on and off. Initially I had no direct depression or anger, just clarity and extreme focus on my next steps to fight this. I remember callig my mom to tell her about it a little bit; avoiding any mentions of cancer or tumors. I could tell she knew more about what was going on. This became more apparent when she mentioned a genetic condition I was diagnosed with back when I was younger. This completely shocked me to my core! Growing up I remember getting medical procedures done every few years but nothing that affected my health. We talked on the phone for an hour discussing this condition I had called Familial Adenomatous Polyposis (FAP). She suddenly went into her background with it and that connected the dots with her cancer diagnosis and mine. I recommend looking up FAP, although it’s not for the faint at heart. It was like my kind was connecting the dots from my mysterious childhood hospital visits to now.

My mind was still focused and generally positive, but I wasn’t Jonny. I was a lost soul that kept working but was missing something. It took me until I saw my mother to tell her my official diagnosis…on my 30th birthday back on my hometown on Long Island. She scheduled a “surprise’ family party in the back yard where I was inundated with so many inquiries. As tiring as they were I eventually went into detail and remained positive. It’s funny, I never researched survival statistics nor cancer related fatalities…even to this day. For me, my mind was early focused on battle mode. Like I mentioned before I love a challenge. This challenge, however, was for the fight of my life.

What Has Been The Most Helpful Way For Family and Friends to Support You?

Communication and inclusion to events would be the first example. You’d be suprised on how much a simply conversation could inspire someone who is going through a disease like this. Nothing lights me up more than getting a text, call, facetime or invite to an event from my friends. It really brightens my mood.

Don’t assume that individuals with cancer cannot do an action. Always ask, in my opinion!

I will say that my company jumped into action immediately and made it possible for me to have the best treatment possible. They are beyond fantastic, better described as a family than just co-workers. It’s important to attract people who will not only support you but fight for you as well. Never underestimate your co-workers. They continue to message me, ask me out to dinner and even make large dinners for me. I’ll even make up excuses to visit my office for the day just to take in the overwhelming energy that each of my co-workers emits.

Until recently, I went through my battle quietly with little exposure to my friends on social media or elsewhere. Many of my friends had no idea until I posted a recent instagram/facebook post celebrating my first Survivor Day – a year since I had been diagnosed. This post was on my todo list for eight months, however, I kept deleting it each time I wrote it. It wasn’t until I met someone, really an amazing individual, who inspired me to not be afraid but instead soak in the amount of love that I have attracted. Well guess what…it worked and this blog post wouldn’t even be possible without him!

THE STORY ALWAYS CONTINUES…STAY TUNED FOR MORE ADDITIONS