Have you ever gone into a situation feeling like you were totally prepared only to be blindsided by the unexpected? For example: Like that time when you thought throwing unwanted vegetables under the oven was a great plan to get away with not eating them until your cat snuffed out your secret stash and you got in trouble anyway. Know what I mean? .....Just me? OK, cool. Well, in August 2003 this is how I felt about my plan going into the year. My junior year of high school I was mentally prepared to step into the spotlight and have the breakout year of my high school career. With stars in my eyes, making the honor roll; starting varsity sports; and elevating my social status were all on my checklist as things I aimed to accomplish that year. But as I struggled through soccer practices, it soon became clear that life had a different path for me aside from my All American aspirations.
That year, almost half my life (15 years) ago I was diagnosed with Acute Myeloid Leukemia, a blood cancer where my body produced abnormal white blood cells that did not function properly contributing to a compromised immune system and a decreased ability for my body to transport oxygen. At the time of diagnosis I experienced symptoms like hot flashes, nausea, and extreme fatigue that made even walking to class feel like a marathon. Maybe that’s why I haven’t run one yet (teaser?). I was in such critical condition at the time that carrying one bag of groceries was enough to bring me to my knees, and jogging a lap was totally out of the question. During the time of admission my hemoglobin levels (the amount of red proteins responsible for transporting oxygen) were so low I was clinically anemic, and severely at risk of heart failure due to the amount of blood my heart had to pump in order for me to receive the oxygen I needed. From there I underwent 7 months of life changing inpatient treatment at the Children’s Hospital of Pennsylvania, one of the best children’s hospitals in the world.
When I was diagnosed, that was the first time I had ever saw my dad cry. My parents were so distraught that mentally I made a decision to keep myself together and make the best of every moment. At the time I struggled with a lot of emotional issues, but during treatment my focus quickly shifted from not being able to run a lap around a soccer field, or being a super stud All-American to helping put others I cared about at ease when it came to my condition. How could I be the one to be so optimistic and focused on comforting others? Well for starters any hospital that has a Playstation 2 in the room, and a playroom full of computers and games was fortunate in my mind. In the grand scheme of things a game system, and computer access may seem like such an ordinary, materialistic thing to have, but realistically not every child (let alone every sick child) has access to the kind of technology, or entertainment to help distract them from their everyday struggles. Yes, at 15 this is how I processed things. I also had the opportunity to meet some very amazing people - volunteers, interns, child life specialists, and nurses who made it a point to be present with me, connect with me, and elevate me as an individual. At that stage in your life socialization plays such a huge role in your self esteem that feeling accepted, embraced, and celebrated unconditionally by strangers helped boost my confidence significantly. Some of these people I am even still connected with today! Finally, to be quite honest – getting my braces off early was a godsend. Period.
Though there was plenty to be thankful for, there were several moments throughout my treatment that I do recall being afraid, discouraged, and mentally exhausted. Whether it was during violent bed-rocking tremors, persistent nausea that routinely ended with vomit or bile (when I was too cool for food) in a bucket at 3am, or just your standard lymph node infection, I was always armed with a smile because I trusted my support system and I wanted to be strong for everyone else around me. At one point handmade cards from people in my school came in droves and people from different walks of my life traveled just to spend time with me. For every moment that was rough I was blessed with a few moments of joy that I wanted to share with everyone around me. I remember when the doctors gave me the green light to go home on Christmas Eve. All I could think about was the support I had received, and it made me think about all the children who would be spending the holidays in a hospital bed. That year I stayed up all night to make Christmas cards for the entire floor. Where do you think a 15 year old would get an idea like that from?
As much of a good story my life is, the reality remains. Even with the advancements made in the last several decades, the stats on blood related cancers are astounding. One out of every 3 people diagnosed with blood cancer do not survive, and in my case 4 out of every 5 people with AML don’t beyond their 5th year of diagnosis. So as you can imagine as a AML survivor the road to recovery is not confined to my time in a hospital, on therapy, or in remission. Processing your own survival can be quite a roller coaster of emotion to work through long after you are released from the hospital. There is something about having another average day that feels normal until your life is in question. All of a sudden normal days transform into an “extra” day you aren’t sure if you deserved. Because though my recovery is an ideal scenario, within 2 years five people that I had met during my cancer journey had passed away leaving me to question my survival. Why Me? Why NOT Me? Stats are like graveyards, they don’t mean much unless you have a connection with the person in the grave.
When survivorship comes to mind it often leads me to a place of gratitude and remembrance of those who I’ve hugged, laughed with, and prayed for that weren’t as fortunate as me. There was a time in my life where this gratitude came with overwhelming grief to the point where it negatively impacted how I viewed self care. In my mind I had received so much care already that the line between self care and selfishness was blurred, and non-existent. I struggled through this for awhile into my adult years of life.
Survivorship also makes me think about what happens to the world when someone’s gone. Are they remembered? And for what? How does someone’s memory impact our lives? Growing up I always wanted to be an older brother. Someone who could be memorable and a positive impression on the life of another. Below I’m going to list the names of the 5 people I knew who passed away from blood cancer, what I remember about them, and the impression their lives had on me.
Kelly Mitchell (16 years old) – You were one of the first I met in the hospital along with Madison in your pink Philly sports cap. We didn’t talk much outside of tutoring because you were sick often, but I remember you telling me about how much you loved to play tennis. We connected over sports when we had chances to actually talk.
Matthew Penrose (10 years old)– You were in quarantine quite often but I remember your room door being decorated with an oddly compelling sports combination. You were a Philadelphia Phillies fan AND a New York Giants fan!!! I remember being sad that you would never get to see the new Phillies ballpark they finished building in 2004. Fast forward to 2008 to when the Giants won the super bowl, and the Phillies won the World Series. I actually went to Citizens Bank during one of the playoff games and my only thought during the game and after the Phillies won it all was…..WOW. I didn’t know you well, but I missed you so much in that moment and tried my best to soak in that excitement for you.
Amanda Zielke (8 yrs old) – I remember coming back to visit my nurses and seeing you in the playroom with the child life specialists. You were so afraid and I knew there was nothing I could say to comfort you as much as being home in your own bed would. I left that day thinking about what I could do. My heart poured so much for you that I made my mother drive me into the city to visit you on a Saturday after a soccer game. I bought you a card and wrote you a little (long) note hoping that maybe kindness could help heal you. Your mother gave me the link to her blog that she wrote in regularly with updates about you. I remember not seeing an update in a couple weeks and reaching out to her. She informed me that you had passed, and that was the first time I realized that hope, prayers, and good vibes arent always enough.
Robert Brown(14 years old) – You were my partner in crime in the hospital. We played video games, talked sports, girls, etc. and we even had the most massive silly string fight EVER. How many cans did we use? 6? How late did we stay up? Midnight? Poor nurses. It was like supervising a sick kid slumber party. I remember you asked for a shopping spree as your make-a-wish. You told me how along the way you ran into the President of the 76ers at dinner and he gave you front row tickets and a locker room passes to a game. Allen Iverson was your favorite player and I remember how over the moon you were to have the opportunity to practice with, meet, and get a signed jersey from him!
Lance Boykin (19 years old) – You were a role model for me. Laid back, accepting, funny, and artistic – you were the biggest influence in me attending Lock Haven University. As a cancer patient and black male, I felt a sense of connectedness knowing someone like you was on my campus in the middle of nowhere Pennsylvania. I remember when I went to visit LHU on a tour and at the end of it you found me and my parents in a crowded lunchroom to sit with. People loved you because you were so personable and down to Earth.
As a person who has lived this experience remembering to celebrate life is an important value I hold and like to constantly revisit. Please join me in celebrating my 30th year of life and 15th year of remission by donating to the Leukemia And Lymphoma Society at the link below. Every little bit counts!