By: David Llano, 28, Leukemia

I always find it funny that I do not remember the exact date of my last discharge after undergoing a bone marrow transplant and a brief battle with Leukemia (AML). Ten years have gone by and I cannot recall the day. However, I remember feeling so relieved. While I had a long recovery ahead of me, I thought my cancer journey was finally over, right? Little did I know that there was no answer to this question.

I thought, miraculously, once I had my final discharge, I would turn back into who I used to be before cancer. During my first appointment back at the hospital, my medical team told me the potential health risks I would have to look out for throughout the rest of my life, including bone death, cardiac health, and other possible cancers. Plus, having to come in multiple times a week for blood work and infusions. Yikes. Due to losing a lot of weight during treatment and a bone marrow transplant, I lost the ability to walk without aid. I had to relearn how to walk and run, which took months. I was always so proud of how active and independent I used to be and now I was confined to a bed or a couch unless I had assistance. That’s just the physical, right? The social aspects went back to normal, right?

Due to my diagnosis and prognosis, I was not able to go to school or see my friends because I was immunodeficient or my energy levels were out of sorts. A little after my final discharge, I went back to school for one day. I remember how excited I was to see all my friends and teachers. Unfortunately, the ghost of cancer followed me to school. One of two things happened with my schoolmates; either they treated me with pity, like I was somewhat weak for everything I went through in the hospital, or they told me that I looked different. Looking back, this was so hard to hear.

At the time, I was still trying to regain my weight. My hair was still growing back and I was taking prednisone, which meant I had a moon face. While I was always a skinny guy, I identified myself with my beautiful curls and my face’s bone structure. That David was now gone. The ways my classmates treated me, and their comments, reinforced that. This made me feel insecure, like I would be constantly reminded who I used to be and how different that David was compared to the one today. I was ignorant to the reality that the David before cancer would never come back. For the worse or the better, cancer changed all facets of my life permanently.

I wanted to be in a place where I was understood to some degree, so I decided to stay at Lucile Packard’s Children’s Hospital school rather than return to my old school. While my peers there understood to some degree, there were not a lot of oncology patients at the hospital’s school. I ended up staying there the rest of the year. I did not graduate with my class at my old school. However, I still felt the unique struggles related to cancer survivorship. This would all change when I was nominated and invited to an organization called Sunshine Kids by Lucile Packard Children’s Hospital.

Sunshine Kids Foundation is a non-profit organization that plans and funds trips, events, and outings for children who have or are facing cancer. For this trip, I was invited to spend a week in New York City with other survivors. This was a life-changing experience, as I finally felt like a part of something. Other people understood not only the struggles of having experienced cancer, but the struggles that continued into survivorship. I met others who would let me grieve my former self and let me complain about problems that cancer created, instead of the condensing answers people who have never lived that life gave. It was not the usual, “just be thankful you survived” or the pity others would give. Instead, it was, “I understand you. I go through the same thing.”

A couple of years later, after that life-changing experience, Lucile Packard Children’s Hospital recruited me to be part of their delegation for CancerCon in Colorado. I did not know what to expect from a cancer convention. Was I going to be forced to talk to medical professionals, like at the hospital, about my struggles? Were the attendees going to be survivors or just companies promoting their products for survivors?  I went in blind, but had hope there was a chance that I would have the same experiences I did in New York. 

CancerCon exceeded all expectations. I was able to meet other survivors and talk about our struggles. We laughed, cried, comforted, and supported each other throughout the whole event. While there were seminars that focused on cancer-related issues and there were also less formal things, which is different from most conferences that are centered around cancer. CancerCon was where I realized that the old David was gone and he was never coming back, but that was not a bad thing. I was proud to be a part of such an accepting community. I was proud of all the struggles that I had overcome. I no longer felt ashamed that I had this kind of diagnosis.

I do not want this to be another toxically positive story about cancer or survivorship because we already get too many of those. But I want to instill the same pride I have in being part of the AYA cancer community. I do want this story to be one of self-love, as I love the new David more than the old one. The new David has compassion, empathy, resilience, confidence, community, courage, and a vision that I would not have ever had if I had not gone through the trials and tribulations of cancer and survivorship.

It did take a lot of self-reflection; years’ worth of acceptance, tears, doubt, you name it. Survivorship, and life in general, have ups and downs. But I will never again doubt my strength, beauty, resilience, and pride in being part of this AYA cancer community because of society’s ignorance. Nor should you. Society was not there through chemotherapy, radiation, operations, hair loss, weight loss or gain, body dysmorphia, etc. You, and only you, were. So only we decide what we are and what we are not. Love yourself, my fellow survivors, and happy April. Celebrate yourself!