Ten Years Later

On December 7, 2006, as a 20 year old junior at the University of Pennsylvania, I was diagnosed with Acute Myelogenous Leukemia (AML). Today marks 10 years from the date of that diagnosis. Today I’m 30, married, and live and work in NYC.

Admittedly the anniversaries of my diagnosis have become less important over time. The first several years were particularly significant but each subsequent year, outside of the 5th post-remission year when I was considered cured, were less. In recent years December 7th has come and gone without me even remembering. But for some reason December 7, 2016 has held special significance and I’ve distinctly thought about it more in the weeks approaching today. A decade as a unit of time seems really, really long.

My time with cancer fills me with cognitive dissonance. I have experienced and witnessed its unrelenting, destructive power, both first-hand and via the stories I see shared almost daily on my Facebook feed. I read the blog posts of desperate parents describe their anguish as their young children enter palliative care. I remember watching my mother face away from me at my hospital bed because any glance in my direction would cause her to break down into tears. I remember walking laps around my hospital floor as a bald, then 21 year old cancer patient, peering into the ever-changing rooms of bed-ridden patients 40-50 years older than me, wondering what in the world I was doing there. My cancer diagnosis was marked heavily by moments that were very, very surreal.

The dissonance comes from the so many intensely good things that sprung from the bad. The instant reconciliation of relationships I experienced on my hospital bed. A loving and supporting wife, with the unexpected beginning of a relationship over AIM due to my chemo-induced house arrest and her watching over her newborn baby cousin. My forever existential crisis that makes me reevaluate if what I value and how I spend my time does justice to my second chance at life. The constant reminder to be thankful and not take anything for granted despite light and momentary troubles. The privilege to use my story to speak for ethnic minority patients who face similar diagnoses and advocate for their health.

The start of chemo marked the end of thinking about my life in large chunks of time. In college I had the same expectations as most of my peers: graduation, marriage, a kid, corner office. While the details were fuzzy I had a rough vision of what my life would look like at 30, 40, 60.

In the hospital those expectations felt like an exercise in premature disappointment. I have distinct memories of watching my friends leave my room, wondering to myself if these were our last conversations. If next week wasn’t assured then what was the point of thinking in decades?

I’ve become something of a cancer liaison for my extended social circle because most people around my age don’t have peers who have been through things like this. I get occasional emails asking me if I’d be willing to talk to ___ about what I’ve been through. And the single most important piece of advice I offer is one of perspective: tomorrow will take care of itself. Focus on today. Live your life one day at a time.

And here I am, in 2016, writing this blog post. 10 years gone, a day at a time. A part of me can’t believe that I’m alive today.

A small voice inside of me is surprised that I’m writing this post and sharing it so publicly. It’s the same voice that felt uneasy the first time I applied to internships after I entered school again. How would I explain the gap in my resume from taking time off for chemo and recovery? Would a hiring manager assume a gap in school wasn’t worth the effort to contextualize in the midst of other qualified candidates without a gap? Was it worth a potentially awkward conversation across an interview table to explain my time off and my school transfer?

I sat in my bedroom watching the cursor blink on my resume. And I resolved that night that my sickness was not a liability. I was not ashamed of being sick. I was not ashamed of my less-conventional path. I was not ashamed of the sum of the pain and joy and frustration and elation of the last few years. I was not ashamed of how much it matured me and expanded my understandings of time, love, life and death.

I updated my resume with a couple sentences explaining my time away from school and my sickness. I got the internship.

Surviving and learning from hardship is an asset, not a liability.

I’m going to end this post with a story of one of my biggest regrets over the last 10 years.

In the spring of 2008 I went back to UPenn to see my friends graduate (2008 was my normally scheduled graduation year – I ended up transferring to UVA and graduating in 2010). By then I was in remission and had been out of treatment for a year, and I was taking an academic year off between transferring schools to get my mind/body right. My girlfriend at the time (now wife) and I got there a few days early just so I could walk around and see the campus again.

We were walking down Locust Walk, the main walkway through the heart of campus, and the weather was wonderful. The campus wasn’t too busy, the squirrels were busy investigating the contents of the campus trash cans, and most of the undergraduate student body had left for home. It was your typical, care-free Spring stroll.

And then I saw her. A woman cut onto Locust right in front of me and I recognized certain characteristics immediately. I recognized the red and white wristbands, I recognized the hat covering her otherwise hairless scalp, and most potently I immediately recognized the face-mask covering her mouth. Probably no older than 27, she walked in front of me for a bit, book in hand, and sat down on a bench to read. Undoubtedly a bit self-conscious of her face-mask and general appearance, she didn’t look at anyone. She just sat down and began to focus on her book.

She was likely neutropenic, which is a chemotherapy-induced state of immunodeficiency, or at least on the upswing. With the proximity of Locust Walk to the university hospital (and particularly the cancer wings), I was positive she was a cancer patient. Chemotherapy gave reason to her hat and necessitated the use of her face-mask.

I had been exactly in her spot almost a year before. A cancer patient, tired of the prison that a hospital room becomes, throwing their social insecurities to the wind for the sake of walking around among the world and feeling normal again. True, there are definite dangers to walking around outside the hospital as an in-patient, but for a brief glimpse of normalcy, and nature, and for the sake of sanity, it’s a risk that you’re willing to assume. What’s the point of fighting for your life if you don’t feel alive in the first place?

I saw her, I recognized her, and I walked past her. I wanted to stop, and I wanted to talk to her, and share my experiences and tell her to press on, to hang on to hope and love and faith and come out clean at the other end of her tunnel. I wanted to say something, anything, to reassure her. YOU ARE NOT ALONE, I should have said. I WILL PRAY FOR YOU, I should have said. GOD BLESS YOU, I should have said. I should have stopped and looked her in the face and asked her how she was doing and encouraged her. I should have told her that I knew how she felt. But instead I said nothing.

I walked past her, leaving her to her book and her literal and figurative moment in the sun. I don’t want to interrupt her, I said. I don’t want to be a nuisance, I said. What can I tell this girl that she doesn’t already know, I said.

I have replayed that moment in my head so many times since that day. And while I wanted to respect her privacy (and would have, had she brushed me off or asked me to go away), I can’t help but think that my own self-consciousness got in the way of sharing a real, empathizing moment with someone who, like me, probably had few peers to empathize with. I could have given that woman a real glimpse of hope in a very difficult time. But I walked by.

My regret serves as my reminder. It’s a reminder that no matter how long any of us live, there is a limited time to be real, and to give hope, and to engage and empower and love others who absolutely need it. There’s no assurance that 10 years from now will come.

The time to have that impact is now.

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