What is your cancer diagnosis and how was it discovered?
Stage IV Colorectal Cancer on my 30th birthday, July, 2018. It was discovered after a long-overdue Colonoscopy after waiting two years to gain healthcare, which I desperately needed so that I could afford access to this procedure. My early on-set cancer diagnosis was caused by a very rare hereditary condition called Familial Adenomatous Polyposis (FAP for short) which carries an almost guaranteed chance of evolving into Colorectal Cancer. Hundreds of thousands of polyps begin to grow in the bowel which later turns into cancer that often spreads quickly throughout the body if left untreated. This is because I lack genes that help regulate inflammation and natural defenses against cancerous growths. Unbeknownst to myself, the change of my bowel habits, blood, and often intense cramping pain was that process inside my own body. All of my pain-related urgent care visits ignore the severity of these symptoms believing I was "too young" to contract anything immediately dangerous.
What is the biggest piece of advice that you have for newly diagnosed patients?
People often think that cancer is a 100% physical battle; where you are in a race against cancer to outlast the debilitating side effects of chemotherapy or immunotherapy. Believe it or not, through my own experiences and from those that I have connected with, your battle is mostly mental! That means the fight is focused on how well you set your own intentions and goals; through the power of a positive mindset. While this sounds a bit "hippy" in all actuality it makes sense when realizing that your gut holds most of your immune system, which is regulated by your brain that pushes out impulses in reaction to stimulation effects on your body. Stress can actually create a sinkhole that helps diminish your body's defenses which can help increase inflammation and other nasty effects that can make your body susceptible to illness!
In order to best equip your body's defenses your mind needs to be trained to focus on your overall intentions and goals - a positive mindset. This is by far no easy task we were really never taught this during our required 12-year education in our youth. I honestly think we are deficient, in the states, in approaching how we can use this as a way to live better lives. It is not inherently difficult when we are young, however, it gets extremely difficult to learn once diagnosed with a deadly and chronic disease.
It took me almost 6 months before I told most of my friends, well into my chemotherapy regiment. I felt embarrassed and burdensome if I shared. What brought me out of my shell was the ability to open up about my diagnosis in a way that embraced my fight as a "challenge" rather than a death sentence. I fought head-on with the stigma by educating and documenting my journey with both infusion pictures AND images of myself living life - proof in a way that I was more than just a label.
Other important steps for those recently diagnosed would be to chose a Top 5. This would consist of picking five people that you can lean on during your cancer journey; reach out to you constantly, invite to events, offer to do errands, and yes be there to drive you places!
Don't forget to Google, Facebook, Instagram, and etc Cancer Groups of all kinds. This will help you match up and meet other people in your similar demographic. Meeting people who reminded me of myself gave me the (huge) outgoing personality that I now have today. You may even find new friendships along the way.
What is the most important thing you learned from your cancer experience?
How I can turn all of my healthcare challenges, cancer journey, and "coming out" experience into a positive light where others will be inspired to move outwardly. Documenting a guide to pass on to the next generation of cancer patients will help create some type of reform. Learning how strong I have become with fighting against near-impossible odds! My voice has inspired others to be more aware of themselves and seek medical attention if they have odd symptoms. Seeking prevention instead of it being too late when only mitigation can occur. Mitigation is unfortunately what the United States healthcare system is still.
What was the most difficult aspect of organizing your care/community?
The knowledge of self-advocacy or the ability to not blindly trust the system without asking questions or challenging a decision. It was difficult to know how I should go about the process with very few resources for young adults and early on-set cancer (16-40). Most local cancer centers or organizations provide services that attract an older demographic.
Read Jonny's full story on his Thrivr page: Jonny's Cancer Story.
Jonny says during his cancer experience, his goal was to:
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