January 6th 2021

Happy Reoccurrence Anniversary?

The day started off with waking up in damp night sweat, from a combination of anxiety and flux. Today was my appointment with my oncologist to review my routine CT scan monitoring my NED status. Little did my doctor know that my results were already sent and read to me the day before…

⏪ Let’s rewhine 24 hours beforehand

Waking up the day after your scan is probably the worst feeling. You already know that the radiologist wrote the report but you won’t know the results until you have a formal meeting with your oncologist. Naturally, I fought this and always had my oncology nurse email or text me the results as soon as she saw it pop in the queue. This time was different, my favorite NP stepped down from in-persons meetings and took an opportunity in a different role in my cancer center. My new nurse who I saw on occasion had a huge hole to fill in, not that I had any fears. She was extremely friendly and knew my bubbly personality was all about smiling, even in the face of bad news. However, this was probably her first advanced scan result virtually, she had her own fears about my reactions if the results skewed badly.

I kept refreshing my Gmail looking for her message to push through, it was around 9:30am and I remember catching it as it freshly hit my inbox. Regardless of being NED (no evidence of disease) for just about one year, any cancer veteran will tell you they still have BUTTERFLIES and that tingling feeling waiting to hear back from this type of scan.

Without hesitation I opened the message and scrolled down to her first typed line…” they are seeing a 5cm small bowel mesenteric mass. Ugh. I’m so to tell you that…” My mind drifted away in shock. I reread that first line at least ten times to make sure my ADHD didn’t accidentally rediagnose me with cancer. I tend to read and speak really really fast when I’m nervous. Blame it on my Long Island upbringing or ADHD or some weird combination but its’ been known to happen…a LOT.

Unfortunately, this was not the case, the scanning readout clearly stated a mass that formed in my mesenteric cavity (lower abdomen) adjacent to my belly button, on the left side. Not just a blip but a large mass the size of 5.2 centimeters (yes metric units!)

For those of you that are metrically challenged

How didn’t I feel or know that was happening in my body?! You would think that a normal person would feel a Skittles-sized bag floating around! Silly old me thinking I was getting abs, I mean I was working out and playing soccer weekly.

I instantly lost my appetite, which for those that know me is extremely rare, even during chemotherapy I ate an insane amount, with or without weed.  I even made my favorite dish; homemade blueberry waffles with a spinach and cheese omelet and sweet potato hash browns – yes, all vegan (but so delicious).

Jonny’s Special: Micky Mouse Blueberry Waffles with a Spinach and Chez Omelet, with a Potatoe Hash

My work shift started in fifteen minutes and my body was so lost and confused. Demanding answers from myself I began to think WHY!

Maybe stress? I did start my first semester of Graduate School, going for an MBA degree; taking four classes on topics that made me snore. Long nights writing endless papers on microeconomics, capitalism (YUCK), and accounting for each week’s assignments. My goal was to get an MBA degree, the closest professional certification that I could feasibly get in hopes to grow non-profit Thrivr into an actual organization. I lost years to cancer; going in weekly for day-long treatments, long recovering, consistent body aches, and no energy. I needed this so I can feel functional in society and truly make a difference to those that NEED it; connecting and showcasing young adults living with cancer, driving past their diagnosis with the intention to motivate others to do the same. This had been touch and go, especially after the passing of my co-founder and good friend Lauren. She was the motivator to get me to share my own story, on her blog, which fueled my desire to help others do the same.

Jonny (right), pictured with Laure (left) during their first in-person meeting in Eastern Massacuttes (2019).

Fear was starting to creep up on me again, just like in July of 2018 when I was first diagnosed.

⏩ Back to January 6, 2021

I walk into my oncologist’s office, after getting my routine blood work. Minutes go by, usually, this is when I start sweating and contemplating my confidence with the results. Today was different, I knew the results and I was just waiting for my doctor to come in and formally say “I told you so”, defeating my mindset that cancer was behind me. My doctor would not say that verbatim, however, I could see it in her eyes. Going into the patient room countless times now, I can confidently say I can read her body language. My approach to these situations is optimism mixed with humor, which simply was not her cup of tea.

In normal instances, I would fire doctors that do not laugh or seek humor as some sort of safe gap to avoid deep depression but I kept her on my team. She hinted at a local clinical trial that she was in some part associated with, which was focused on altering the tumor’s DNA sequence from Microsatellite Stable (MSS) to Microsatellite Instable(MSI/H). In theory, success with this approach could create an opportunity for me to receive other “standard of care” colorectal cancer treatments of immunotherapy. Remember I was flunking out of my chemotherapy treatments quickly, facing the boundary of no available treatments to utilize.

Most colorectal (CRC) cancer patients have MSS tumor markers which restrict the body’s ability to accept traditional immunotherapy cocktails, like those with MSI/H markers. If successful, it would open up more opportunities for me, helping me to advance past the “five-year” death toll that most patients encounter. Ultimately, the trial did not work out but this was a great learning lesson into immunotherapy research that solidified my connection to the clinical trial that I was accepted into, helping pave a positive reaction, in the Fall of 2021.

I fully intended to survive and thrive with a stage IV diagnosis

Coming out of that meeting with my oncologist I can only remember a few things. I was too distracted to record or even take notes, which I usually do.  Her thoughts were 💯 reoccurrence; extremely aggressive since the growth was  5.2 cm, occurring within TWO months from my last scan. Her plan was to go back on FOLFIRI and to keep my PD-1 Inhibitor Cetuximab in play, in hopes for some positive regression. FOLFIRI did not have any effective response from my past but it was the only cocktail left, without going on the chemo pill; which showed little to no effect in most cases.

Before starting full-scale chemotherapy, next week, she wanted to run another scan to dive in deeper and see what else may be going on. CT scans notoriously do not show the full picture, however, they are deemed most effective financially – thanks to the American standard of care approaches when it comes to health insurance companies. This new scan (PET scan) was scheduled for January 12th, a day after meeting with my colorectal surgeon to discuss his opinions.

Here we go…back into the ring for another showdown of Jonny vs Cancer.

Bummed as all hell I remember I had plans later that evening with one of my best friends. Fighting through the anxiety, depression, and energy flux I somehow got through work and my Accounting class. Going out later that evening, I didn’t pay attention to my looks, just wanted to keep my mind entertained elsewhere.

Jonny (left) with Sal (right), not pictured is Kevin, Sal’s partner, at Excelsior Pub in Albany, NY

In all honesty, this photo triggered the memories of my Cancer Recurrence Anniversary, allowing me to write this little post. Sal (to the right) sent it to me as I was starting to feel the effects of my high THC bud flowers. The smile is genuine, however, my disheveled hair and apparel remind me of my slump before heading out. A great reminder that distractions, especially during bad days, are extremely important for your mental health.