Jordan’s Story

 

 When I was 19, I was diagnosed with Hodgkins Lymphoma

 

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The first few days after I abruptly left college were a whirlwind, but I was not prepared for the moment I first entered the Children’s Hospital of Philadelphia to meet my doctors and begin testing. I am a 6’2 college student. I considered myself more like an adult than a child. Yet there I was, the oldest and largest patient sitting amongst toddlers and children— all of them undergoing difficult treatment and fighting cancer.

 

At first, I felt horribly out of place. Not only was I still struggling to swallow the pill that was my diagnosis, but sitting next to children, toddlers and tiny babies sick from painful treatments while Disney Channel Junior played on the TV and Sesame Street stickers littered the wall, sent my already spinning, anxious head into full blown panic. My immediate reaction was,

“I don’t belong here”

The first question I asked my oncologists when I met them wasn’t, what is my disease or what is my treatment like. It was,

“Why am I at a Pediatric Hospital?”

The answer was complicated, but reassuring.

 

Although I had (what I thought qualified as) an adult body, my cancer was considered Pediatric. From a patient’s perspective, Pediatric cancer is different from adult cancer in terms of the treatment philosophy. For Pediatric cancers, the long-term effects of the treatment, like permanent neuropathy and future cancer, weigh heavily into the treatment selection. The thought process is that we want to cure these kids AND we want them to live a full, normal life after treatment. Adult cancer treatments may not weigh the long-term effects of the therapies as strongly in deciding which kinds of treatment to administer. For example, my close friends’ mother was treated for Hodgkins Lymphoma 3 different times (she had 2 relapses). Although she is 10 years in remission, she still suffers greatly from neuropathy as a result of one of her chemo regimens. Luckily, as a pediatric patient, the doctors are seeking to cure me with treatments that don’t have these nasty, long-term side effects.

I agreed that I needed to be treated like a Pediatric patient, but I still couldn’t get over sitting amongst kids 3 and 4 times younger than I was. This is a battle I am still fighting every time I visit the hospital.

 

The juxtaposition of being the oldest kid in the waiting room and the future issues I faced as I progressed through treatment, really highlighted the troubles of being a young adult with cancer.

 

What was I going to do about school? Girls? My brothers in my fraternity? My eligibility to play a college sport?

 

The biggest trouble of all, though, was that I felt that I was by myself: I couldn’t relate to these little kids, and they couldn’t relate to me.

 

The struggle with Adolescent and Young Adult cancer, or AYA for short, is that, in this age bracket, we are neither here nor there. We are young adults who begin to crave independence and experiment with it. Yet a cancer patient is, necessarily, dependent on those around them. Fitting in might be one of the most important considerations of day-to-day life, yet someone undergoing chemo generally sticks out like a sore thumb.

Although the life of an AYA cancer patient is riddled with these contradictions that seem to magnify an already challenging period of life, I learned to find some blessings in the juxtaposition between Young Adult and childhood cancer.

 

For one, my friends understood for the most part what was going on. They were willing and able to visit me during treatment, and were able to help me and my parents out if need be. I always felt bad for the children going through treatment because I didn’t think their friends would understand why they had to wear masks to play together, or why their friend had seemingly moved into the hospital. Furthermore, with age came understanding. I was able to rationalize every part of my treatment, even the most gruesome and unpleasant side effects. I can’t imagine a young child would be understand why they had to feel so crappy all the time, or why they had to constantly get stabbed with needles even though they hated needles.

 

Still, I find the hardest part of being pulled out of college to battle cancer is the feeling of being left behind. When I was in between treatments, boredom became my biggest enemy. I wanted to do interesting things: I wanted to take cool classes and party and be away from home with new people and learn to live by myself. All my friends were doing it, and they seemed to be having a great time. My toughest challenge, then, was not dealing with my cancer, but rather dealing with the feeling of being stuck.

 

In the back of my mind I had assumed I would be able to beat cancer, but returning to a normal life seemed impossible.

 

I joined Teen Cancer America because I saw the gap between Childhood and Adult cancer care as something that needs to be improved. Between hospital experiences and day-to-day life, Adolescent and Young Adult cancer care has a long way to go until it can compare with the other demographics. Young adulthood is a unique period of life, and as such, the needs and wants of a young adult are also very unique. I recognized the need to address these unique desires in order to help those who will walk behind. I joined Teen Cancer America to raise awareness about the unique problems and help improve the lives of Teenagers and Young Adults battling cancer.

 

- Jordan Lerner

A Call To Action