Fierce, Fighting Fridays
“Mindset is 80% of the battle, you’ll be amazed how far that goes towards your war against cancer! Those that don’t develop Self-Advocacy will unfortunately fall into the darkness that the Western Medicine field shrouds, especially when it comes to a healthy mind and body.”
[Written in October 2019]
Provide a brief biography to describe your life pre-diagnosis.
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; all while playing soccer on a local club team.
Did you have any symptoms leading up to your diagnosis? What led you to see a doctor?
My symptoms started innocently around age 28. It mimicked that of Crohn’s / IBS. In my mind I thought, it’ll go away tomorrow…that kept going on until my diagnosis in early July 2018. I remember dealing with these symptoms by working and getting heavily involved with nonprofits to give my mind a “peace of mind” scenario since my current job did not provide my health insurance. Health insurance at the time was not my priority…it was to survive on my low pay and high budget, fueled by student loans. Previously, I have advocated highly on receiving health insurance and other benefits for several years. It wasn’t until late 2017 that my dream was granted.
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 with a referral to a gastroenterologist for my “IBS/Crohn’s” symptoms. My initial physical passed with flying colors and my next step had me wait an additional two months.
Once again the wait was killing my self-esteem and patience as the symptoms got worse. After that first meeting with the GI doctor a question was asked “Do you have any familiar relations to gastrointestinal cancer?”. In my mind I remembered my mother who had dealt a shitty hand with colon cancer, among other health issues. My next step after admitting this was a colonoscopy that was scheduled…get this…three months out! This was not my first time at the rodeo with this procedure.
After my colonoscopy I got my immediate results, high off the anesthesia, thousands of polyps littered throughout my colon. So bad that they couldn’t scope past a quarter of the way up. My doctor was seriously concerned and referred me to a surgeon…a word that I have never considered nor imagined I’ll meet.
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. This was my last day week of ignorance bliss.
At my surgeon appointment on July 2nd 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, which I removed from my mind immediately, and the little hope that was there for me…a week before my 30th birthday. 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 my supervisors.
How did hearing the words “you have cancer” make you feel?
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 since I was 28. I didn’t feel depressed or angry. Just an odd sense of content with a large amount of focus, setting up for my next steps.
I called my mom to tell her about the news, avoiding any mentions of cancer or tumors. I could tell she knew more was on the horizon, especially when she mentioned a genetic condition I was diagnosed with back when I was 12. 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 FAP. She suddenly went into her background with it and that connected the dots with her cancer diagnosis and mine. I recommend looking FAP up…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 [August 2019]. 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 do you know now that you wish you had known back then?
I would sit here and say how I wish I was told by my parents about my underlying condition that eventually brought on my cancer diagnosis, however, I now know how intense that feeling has been after joining a few support groups for individuals (and family members) that are affected by the condition FAP. Imagine you as a parent having to tell your child(ren) about a devastating chronic illness that has no treatable cure and that you will have to be monitored for the rest of your life. The thought has crossed my mind numerous times about that but ultimately you are dealt the cards you are given with no access to the past.
The main item that I wished I knew back then was how challenging it is to make decisions based on observations from your doctor(s), strangers, who view you as a number. Ultimately the decision is YOURS and not theirs. Always question everything you are told, no matter the experience or knowledge that you possess at that time.
HEALTH INSURANCE, advocating myself better at a younger ago to of received it. I am running into more and more young people who are between the ages of 27, where you no longer can be attached to your parents insurance plan, and 35 who struggle with basic needs or screenings that can he life changing down the road. I, myself, fall into that category. We need HUGE change, not to get too political. Free cancer screenings should be available to any aged adult, especially now that more young people are developing autoimmune and cancer related illnesses.
How has life changed? What has been your biggest challenge since your diagnosis?
One of the worst struggles that this journey has given me is uncertainty. That is my main vice in life. I love structure and planning in-advance, however, this disease has forced me to plan in two week increments – based on my weekly chemotherapy schedule.
Life is now an out of body experience for me. It’s a gigantic change before my diagnosis. I would say more of a mindset change than a physical, just because I still enjoy playing soccer weekly and spontaneous traveling. The main drawback is that now I have to balance my limited time to include the numerous doctor visits and my chemo treatment schedule. Emotionally, I have a heighten sense of empathy!
What do you wish people knew about supporting a loved one with cancer? What have been the most helpful ways that friends and family have supported you?
The biggest thing would be that not all cancer patients react or look the same. Cancer is still very taboo in our society and we tend to treat those that are embattled with it as “sick” individuals who are “helpless” and are not mobile!
With testimonials and stories like mine, I hope to create an impression on others about this disease. I want to be treated and respected as before, no less because of my illness. Sure, I will have bad days ahead and may need help, however, do not take that as a sign that I will not recover and have better days ahead.
I see no limit to what I can or cannot do; whether it’s playing soccer the day after chemo or falling in love. It’s okay to ask about my cancer, in fact I love talking about it and sharing my story. Be curious and ask questions!
Communication, Invites to events, and by just striking up a conversation. Nothing lights me up more than getting a text, call, facetime or invite from my friends. It really brightens my mood. Don’t assume I can’t do things…always ask!
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.
What is next for you?
I often think about the word legacy and what it means to lead with one. My main passions in life are LGBTQ Advocacy, Environmental Sustainability, Meteorology and lighting up the room. Currently I serve on GLSEN’s board as a volunteer coordinator which allows me to help my local LGBTQ youth community thrive in our K-12 schools. There is no better high out there then receiving testimonials from youth on your contribution to their success. Even if that success is simply those individuals graduating high school.
Since there are no local support groups that fit my demographic and specific disease type, I plan to co-establish a network for those going through chronic illnesses/cancer around my age (~31).
Traveling, chasing storms, living life to the fullest and continuing to meet amazing people who inspire me each day!
What advice would you give to someone recently diagnosed?
The biggest advice I would give would be to seek out your top supports in your life; whether they are friends or family members. Tell them what is going on and ask them for their support during this new journey. Next, seek out a therapist and a support group that focuses on your specific cancer. It took me a year to finally find one that I can openly communicate to. You will need a neutral party during and after your battle with cancer.
After that, do your own research and find the right doctor for you. For example, I have a local oncologist who dispenses my chemo treatment, a cancer center oncologist who can verify my progress and treatment plans from my local doctors, a naturopathic doctor that provides me additional help on homeopathic remedies that can help and I research up to five hours a week on potential new forms of treatments that are promising. You do not have to follow my pattern but connect with a cancer research hospital near you – like Sloan. Many insurances allow second opinions at these centers. Those hospitals may even have grants or free services that can assist you! Although it can be very daunting, study up on your condition. Knowledge is extremely powerful. Don’t assume that your doctor is 100% correct. Know that you have control in your own decisions.
One last tip; TREAT YOUR SELF. Make sure you enjoy life during your battle. Mindset is 80% of the battle, you’ll be amazed how far that goes towards your war against cancer!