Back in 2019, I had an opportunity to partner with an organization called TMI Project, a local non-profit located in Kingston, New York. Relatively new to living with cancer I had struggled to find my “voice” during all of this. Since 2018 my life was pretty chaotic; working full time, playing soccer, and oh yeah…getting a strong dose of chemotherapy every couple of weeks. What I was beginning to find out is the hardest part of having cancer is seeking a balance in life. All I wanted to do is be “normal” and continue my life as if nothing had happened. In my mind I normalized cancer very early, however, as I awkwardly “came out” to others with cancer I found myself wanting more stability with how it was told and how I was truly okay with it all…well in terms of having it and not looking back.
Stage IV Colorectal Cancer is among the most aggressive and lethal cancers out there. Often labeled as an “older person’s disease” this type of cancer can feel very weird, I’m not talking about walking out of the bathroom with a piece of toilet paper on your shoe…think grander, like walking onto a stage nude awkward!
TMI Project, specifically two great friends, gave me the motivation to “come out” and share these raw emotions of my “terminal” diagnosis. By working on destigmatizing my view of cancer I was able to identify the emotions that since then had been bottled up, not being able to address, allowing my mind to wander through life with a blank purpose. Definitely a radical take on cooping with cancer from anyone’s perspective.
After deep reflection, I come to this conclusion; blame has no place in a life built on purpose!
This six-week writing workshop was hosted an hour south of me (from Albany, NY) and hosted on Thursday evenings. At first not knowing anyone there I found myself giggling nervously waiting for our instructions and how this whole thing would work. I remember rushing down the New York State Thruway thinking endlessly what this workshop would be like? AA or maybe something similar to a therapist appointment.
Walking into the room for the first time, I sat around a table with seven strangers. As we began to go around the room for introductions I started to feel a mid-body knot forming – my fight or flight response was activating and my seat is literally the farthest from the exit! I took a breath and word vomited myself to the group and I could see some of their eyes bulging. They felt something…the short description of myself gave them a physical reaction! After we finished introductions, I began to feel more relaxed, hearing others talk about themselves. We all had our own unique quirks and personalities. The last two individuals, in the front of the room, introduced themselves as our facilitators.
The format of each meeting started with writing prompts that were assigned to us, guiding us to recall specific memories. These memories that spawned were then written down, manually on paper. What scared me more, than sharing each mini-story, was my awful handwriting. How the hell can I even start sharing my own memories if I can’t even read my damn handwriting?! Don’t even get me started on “proper” English grammar!
My first reading of a story, posted below, was a mess. We were told to not deviate from our written stories and read exactly what we wrote down, moments ago. Believe me, it took me a while before I could even read what I had written down!
As I read my first written prompt out loud to the group for the first time I started to feel that knot pull harder and harder against my stomach. “WOW,” I kept thinking, “this is so freaking embarrassing!”. “My story is literally the weirdest combination of words I have ever voiced!”.
As the group finished going around, that knot began to weaken and the tightness associated with that know dissipated over a few minutes. Sure enough, my story was pretty on par and random just like my other co-journalers. Each time we did this my mind loosened up and that feeling of embarrassment dissolved. My prompts became clearer with more emotion…not to mention my handwriting improved slightly so I didn’t have to make up the next line that I couldn’t read.
Towards the end of the six-week workshop, we had to choose a story that we could accurately and emotionally connect with, that could be written down and performed LIVE in front of an audience. Or, I forgot to mention recorded too. That gem is just a little way down. I was between a few memories that really resonated with me. Believe it or not, cancer was my third or fourth choice since the facilitators recommended that we choose a story that had been complete, enough for the audience to see the complete picture. However, as I started to write down more and more writing prompts a pattern emerged. One involving memories that I had with my family, my diagnosis, and the road ahead of me, now that writing and expression had become second-hand nature. Even though my story was incomplete, I think it gave a perspective that every audience should hear!
My diagnosis was caused by a very rare hereditary disorder called Familiar adenomatous polyposis (say that three times fast!). This mutation was the fundamental reason for getting cancer at such a young age, compared to the stigma of Colorectal Cancer being an “old person’s disease”. Cancer develops from the unstoppable inflammation that first starts in the colon and rectum. These pre-cancerous polyps then grow because of my body’s lacking important defenses that naturally keep this in check. I lack specific tumor suppression genes that battle against normal wear and tear. FAP as it is commonly shortened to, requires lifetime surveillance; including endoscopies, colonoscopies, and scans annually to limit or prevent the inflammation from turning cancerous. This exhaustive process does not include cancer, in fact, most FAP’ers have dental issues and early onset arthritis. This genetic condition can either be passed down from a parent or developed by skipping a generation, which makes this terrifying if you end up discovering you have this!
Needless to say, this condition is not taken lightly by anyone, this includes me. How did we not know that I would inherit this condition and potentially receive treatments that would have prevented Stage IV Cancer?! I then had a flash of memory back to my youth when my mother was putting on a wig…” She must have had cancer and went bald for a few months!”. It was confirmed right after telling my mom about the doctor’s assumptions about my cancer diagnosis. She received heavy doses of chemotherapy once a month during my youth, for desmoid tumors, which were later removed and disappeared. Since then she has been symptom-free.
My mother, back when we were all young, brought my brothers and me to get genetic testing done, investigating if anyone of us has the known gene to this condition called FAP. My one brother and I tested positive back when we were 12. Again, flashbacks started occurring to when I was traumatized by annual procedures done at area hospitals. “Colonoscopies!” I remembered. They knew back when I was younger, how was this the first time I was hearing about this!
The story takes off from here and dives into my emotional state, afterthoughts, forgiveness, and how I learned to not just survive but THRIVE with cancer – even in my early thirties!
Jonny’s TMI Performance Script:
It’s my 30th birthday and I’m finally here, sitting on this old patient table waiting for the surgeon. It’s already been years of waiting just to be left alone to wait for a little longer. I grow restless and begin touching various medical equipment. I pick up the blood pressure gauge thingy and try to remember what it’s actually called. My mind starts to wander to all that has led me here.
A couple years earlier, life has been buzzing by. It was instilled into me by both of my workaholic parents to take charge of their life. It sounds cliché but I always knew that there was something out there waiting for me. Positive or negative, there was something that was going to make me special.
Ever since I was little, I tried to imagine what life would be like when I was “all grown up”. I’d be married or happily single, have a house and a career I loved being at each day. Some of it was starting to take shape. I’d enter into the LGBTQ advocacy non-profit world full-on. I LOVED it. My friends and I joked about “gay death” – a phrase that refers to the early age of 30 when gay men are no longer deemed to be fun, attractive, or valuable. Well, at least the career and the house wouldn’t be too far off.
But, something was bothering me. I thought I had IBS, or maybe Crohn’s Disease, but my job didn’t provide health insurance. I aged out of my family’s health plan and I didn’t have the money to pay out of pocket. So, I ignored the pain and focused on continuing to build my career.
Starting in early 2018, after a year of advocating for health insurance, I finally got coverage and called countless doctors to make an appointment. Once I got in, my initial physical and bloodwork passed with flying colors, which put me at ease for the moment, until I was told that my referral appointment would take an additional TWO MONTHS!
The wait hit me hard and my self-esteem began taking a hit, as the symptoms became worse. But once again, I kept pushing ahead and digging deeper into my passion for LGBTQ youth advocacy.
When I met my current gastroenterologist he asked the question that made me choke on my next breath, “Do you have any awareness of gastro-related cancer in your family?”
In an instant, the memories came flooding back to me. When my mother was around my age she was bald for some reason. She had major surgery. I had childhood memories of her wearing a wig. My doctor orders me a colonoscopy but I have to wait…an additional THREE MORE MONTHS!
After my colonoscopy, I received my results. I have thousands of polyps littered throughout my colon. This is when I knew things are getting serious. He quickly referred me to a colorectal surgeon but unlike previous referral wait times, my initial meeting is scheduled within a week.
Everything began to speed up. Leading up to that appointment I have severe pain and bleeding which drives me insane at work. It got so bad that I had to get an emergency CT scan and blood panel to investigate further.
And now, I’m here, finally at the doctor’s office, sitting on the table, waiting, again, playing with the…the…Sphygmomometer — that’s what it’s called – when the doctor and nurse walk in. I feel like a little kid who just got into trouble.
The doctor says, “This is not a joking manner, John” [serious tone].
I haven’t the slightest clue what he’ll say next. With a short breath and a look of disdain, he says, “You have stage four colorectal cancer. The CT scan showed your cancer has spread to your liver. At most, you have five years to live.” He pauses…and stares at me as if the fifth year is quickly approaching.
As if I’m agreeing to my assigned mortality, I simply ask, “Okay what’s the next step?”. He talks about having major surgery to remove my colon. “Can you even survive without one?!”. As he goes into specifics, I drift off and retreat into my mind. My safe zone. I keep repeating, “Happy Birthday, Jonny,” to myself thinking about how I will break the news to my mother.
I’ve just been diagnosed with a terminal disease on my 30th birthday…talk about “Gay Death”. But this is it, my own “gay death”. I shake out of my safe zone and back into real-time as the doctor finishes up with, “…So are you ready to book a date for the surgery?” I nod and walk to the scheduling department. It feels as casual as if I’m registering for a college class. The date is set, just a mere two weeks from today, We shake hands and I’m out the door in under an hour.
As I walk to my car in this endless parking garage I ask myself, “Why are you so silent, aren’t you afraid?”. My very next thought still sticks with me today, seventeen months later, “This is just a challenge, a really fucked up challenge but a challenge that I was born to play out.”.
This is the thing I knew about since I was little that positive or negative – was going to make me special.
The next thing I do is call my mother. I tell her about the meeting with the surgeon but avoid admitting that I’ve been diagnosed with advanced cancer. The second I tell her about my scope and the immense damage to my colon she breaks down into tears.
It’s only now that she reveals to me that I have a very rare genetic condition called FAP – Familial Adomeous Polyposis, a nasty disease that leads to cancerous lesions in the colon/ What she didn’t know, at the time, was that this can lead to cancer metastasizing throughout the body if not managed by your mid-twenties, often leading to an early death.
She fights back tears as she mentions that she had me tested back when I was twelve.
“Now it makes sense,” I tell myself. All of those mysterious trips to the hospitals, scopes, and the yellow pill I had to take daily. This random assortment of memories comes back like a flash flood on a small creek. Mom lost hair when I was very young. the wig she worse. She went through chemotherapy too.
What the FUCK?!?
I press her for details but she can only manage to say, “I don’t remember” and, “I don’t know,” which eats at me over our two-hour call. It’s all coming together now.
In my head I scream, “Oh my god, WHY ME? WHY DIDN’T SHE TELL ME! “Didn’t she care about my health? Was she expecting that I’d figure this gem out on my own?! I mean come on, I got cancer BECAUSE of her!”
I’ve been healthy through and through, working out three times a week, playing soccer twice a week and running a few miles every other day. I should be the poster child for NOT getting cancer…this isn’t fucking fair!
It takes me over two months to fully process this/ This thought of me having cancer doesn’t keep me up at night.
What keeps me up during these two agonizing months is the question, “Do I forgive my mother or blame her?”.
I imagine the tool this could take on my relationship with my parents. They’ve sacrificed so much for my siblings and me. The notion of thriving inspires to my focus on recording my daily interactions with cancer and makes me expand on my definition of life with cancer to “thriving with cancer”. I chose to live with cancer but not let it label me out of my own identity!
After deep reflection, I come to the conclusion: blame has no place in a life built on purpose!
I choose not just to survive but to THRIVE. This word keeps appearing in my social media postings and daily conversations, as I keep adding to my cancer story.
I notice myself becoming MORE active in my life; advocating and living my life as if nothing was slowly attaching my body.
Yes, I’m being treated with chemotherapy which leaves me exhausted, dehydrated, and beaten up. But I’m lucky, I have down time for two days then I’m back to playing soccer, traveling, and eating food that brings me joy – despite going through 35 rounds of chemo.
The notice of thriving inspires me to focus on recording my daily interactions with cancer and makes me expand my definition of life with cancer to thriving with cancer. I chose to live with cancer but not let it label me out of my own identity.