Hazel Skarbek-Tyler – Caregiver

My family regulars here when we crave ramen. I forget the exact date but it was a Sunday in the spring of 2021, my dad and I met for a bowl. Sunday’s worked best with my nursing school schedule. I considered my dad to be a healthy man- a health-conscious man. He prioritizes clean eating, being with nature, and healing the mind. Sober and cigarette-free for over 30 years, too. We both ordered our usuals: the signature ramen for me and the Mayu for him. 

Some people in our lives never seem to get sick. That was my dad. I can think of two instances where he was less than healthy: about 15 years ago he was driving me to school and pulled over to throw up, and then catching COVID in 2020. So, when my dad could barely finish his ramen and said his lower right flank hurt, I would be lying if I said I didn’t feel a pit in my stomach. The next morning he went to his primary care doctor, they sent him to the ER, and he was diagnosed with appendicitis. 

Appendicitis. 

I remember a girl in my 7th grade class had that and it was super treatable, no sweat. The plan was to remove that small organ. You know, the one you always hear that supposedly has no purpose: the appendix. 

I picked my dad up after his procedure, he trusts only my driving and his own. He told me not to bother pulling into the hospital and to just wait across the street. A doctor walked him to the car. I asked him if that was his doctor, and he started laughing. He had no idea who that man was. Then we laughed. He looked at me very matter of fact and said “Hazel they found some cancer while removing my appendix”. Then we cried. That moment changed the trajectory of our family’s life. My dad was diagnosed with Appendix Cancer. My brain translated that to “small, pointless organ cancer”. 

It is not how I -or my family- relate to appendix cancer now four years later. Although, it is how most people do. I take no offense to this. It is how I once even, as a nurse, reacted: Who the hell gets appendix cancer? It must not be that big of a deal, right? I would see relief and disinterest on people’s faces when I would open up to them about my dad’s cancer, again I took no offense. I believe they automatically assume he’ll be fine- after all, it’s just a small and pointless organ, right? Two rounds of chemo and four surgeries later, that small and pointless appendix proved us all wrong. 

I became, for lack of a better term, a caregiver for my dad. I took on this role and assigned it to myself- in classic oldest-daughter fashion. My dad does not look or act like someone who needs a caregiver. Aside from the cancer, he’s perfectly healthy. My time as an oncology nurse opened my eyes to the necessary role of caregivers in a cancer patient’s life- wanted or not. The team we created surrounding my dad on his journey is truly impressive, and I will be eternally grateful. Fox Chase Cancer Center saved my dad’s life after the initial diagnosis. We had a brief cancer-free moment in time, and then it metastasized. Ouch.

I began working for Penn Medicine outpatient oncology infusion in the Summer of 2023. It is a blessing and a curse to have the knowledge I do about cancer. I was confused and angry because it was my dad. Even though, logically, I knew there was a high chance of this happening. We found another outstanding team at Penn. This is where my eyes were truly opened to the gravity of this disease and how rare it is. We were now in the presence of doctors who see this infrequent cancer- quite frequently. Everyone agreed: more chemo, stabilize the disease, then surgery. A big one. We had to be thorough yet intentional in our decision. We found another surgeon at Memorial Sloan Kettering, my dad liked him. Not because he dedicated his life to appendix cancer- “the orphan cancer” he called it- but because he is originally from Ireland, like my dad. Totally kidding. It was because of his confidence in extending my dad’s life through cytoreductive surgery (CRS), the being a fellow Irishman was a perk. This surgeon’s name is Dr. Garrett Nash. That surgery was this past September and was successful. 

My dad was one of approximately 3,000 people a year who are diagnosed with appendix cancer. Along this four-year journey, it took until his metastasis- about two years in- that our family truly understood this disease. Some don’t make it to year two. It’s so uncommon that we would start saying “It’s like colon cancer”. It was easier to explain. In year four, though, I take the time to explain appendix cancer to those who want to listen because it’s its own beast. It deserves the respect to be discussed because its impact is real. This is awareness. 

I explain how, when it spreads, it spreads differently than a lot of cancers, which in turn means it needs to be treated differently. It may be a small and pointless organ for the majority of the population, but for a rare few, it unexplainably becomes much more than that. 

On February 28th, 2025, I’ll turn 28 years old. It also happens to be Rare Disease Day. August is Appendix Cancer Awareness Month– also my dad’s birth month. I love little coincidences like these. Coincidence is a word I use often. It is how I see his appendix cancer- a coincidence. A rarity. No real explanation. Still, if not more so, it calls for awareness. Awareness gives acknowledgment to the lives that rare diseases touch beyond the diagnosis. With awareness comes understanding, added support, and ultimately progress. 

Thank you for the opportunity to share this story.