Cheekswab was a promise
“Your blood test results are abnormal. We think it’s indicative of a form of lymphoma or leukemia.”
Cheekswab began with a promise I made to myself in December 2006, sitting on a hospital bed in the oncology wing at the Hospital of the University of Pennsylvania (HUP) in Philadelphia, PA. I was a 20 year old patient on a cancer wing, surrounded by patients on average 40-50 years my senior, watching the first bag of inductive chemotherapy1 drip steadily from the bag at my bedside into the catheter attached to my chest. I slept little those first few days. I spent a lot of time sitting up in bed, waiting for the next round of nurses taking vitals, and staring at the ceiling, trying to process the reality of what was going on.
I didn’t spend a lot of time feeling sorry for myself. I came to grips with my diagnosis very early on, as I sat in the emergency room that first day while doctors ran a variety of tests and I watched my mother cry at my bedside. I understood that while scientifically cancer is a disease that is caused by various physiological forces, sometimes cancer just happens. Despite the fact that I was otherwise in good health, there was no medical history of cancer in my family, I exercised regularly, I didn’t smoke, drink, or do drugs, and that I did my best to live my life as a good and conscientious person, I got cancer. I did nothing to “earn” it; I won the cancer lottery, much like millions of others do every year. That’s just how life is sometimes.
What kept me up those nights wasn’t the question of “why me?” in a spirit of self-loathing, but the question of “why me?” in a spirit of wanting to understand if what I was experiencing was truly random. Was there a message or purpose behind this diagnosis? If I was going to die soon, what could I do to maximize the time I had left? If I were to live, what could I do to maximize everything I’d been through? How could I pay forward the diligence of my doctors, the service of my nurses, and the overwhelming love and encouragement of my family and friends?
I knew that the answer wouldn’t come immediately, but I made a promise to myself to keep my eyes open.
Moments that I will never forget
The preceding 3-4 days had been full of moments that I knew would be forever burned into my memory. I remembered waking up on Thursday, December 7, 2006 to a phone call from student health services at 7am, telling me I had to come to the office immediately to discuss the results of the blood test I had taken the day before. I remembered throwing up into a trash can near the engineering buildings on the walk over. I remembered watching the face of the doctor while she broke the news.
“Your blood test results are abnormal. We think it’s indicative of a form of lymphoma or leukemia.”
I remembered not really processing what she was telling me and asking her if this could wait a week until my finals were over. I remembered her recognizing my misunderstanding, firmly telling me the situation was serious, and that I needed to be admitted for chemotherapy today. I remembered finally understanding the weight of what she was telling me when she said that I would not return to my dorm room and that I would be going to the ER immediately.
I remembered asking her if she was sure of what she telling me. I remembered asking her rhetorically how I was going to tell my family. I remembered leaving the room, composed, to call my sister. I remembered losing that composure completely once I heard her voice, knowing what this news was going to do to her. I remembered telling her to call my mom because I could not. I remembered my mom calling me a few minutes later, her voice quivering, telling me that she was on the way and that things were going to be okay. I remembered being transported to the ER by wheelchair, wondering in my head if this was how I was going to die.
7 months, 81 nights, 38 bags of chemotherapy
A week earlier my life had been pretty typical. I was 20 years old, a junior-year engineering major, worried about the first semester finals that were quickly approaching and the on-campus recruiting that loomed after winter break. I was fighting a cold for about a month, which I had been ignoring due to schoolwork, but forced myself to get checked out at student health in hopes of obtaining a medical quick fix before my finals. Given my mentality at the time, my very obvious deteriorating health was of secondary importance. I was fixated on school and jobs and everything else was secondary.
I was diagnosed with Acute Myelogenous Leukemia, which is a cancer of the blood. My bone marrow, the part of the human body that produces blood cells, began producing malformed white blood cells. White blood cells serve as the body’s immune system. These malformed white blood cells began to fill up my blood stream so that the other elements of my blood (normal white blood cells, red blood cells, and platelets) could not function normally. My prolonged and worsening sickness was a result of a lack of an immune system due to the lack of normal white blood cells. My doctors told me that given my blood work, if I had waited any longer to go to the hospital I ran the very real risk of bleeding in my brain.
I underwent two rounds of inductive chemotherapy at the Hospital of the University of Pennsylvania over the course of 60 days, where I stayed overnight in a hospital room on Rhoads Floor 6. I was checked into the hospital on December 7, 2006 and left the hospital to go home to Virginia on February 5, 2007. I spent Christmas, New Years and my 21st birthday2 on the cancer wing. Following my inductive rounds, I was declared in remission on March 2, 2007, meaning that there were no detectable traces of cancer in my bone marrow.
I began the first of four consolidation rounds of chemotherapy in March, which I completed on June 30, 2007. When I totaled everything up after-the-fact, I had spent 81 total nights in the hospital, completing 38 total bags of chemotherapy.
Finding the answer
The question of “why me?” has never left me, even to this day. But there have been moments since my time in the hospital where I believe God has shown me glimpses of the answer I’ve been seeking.
When I was in the hospital one of the thoughts that I was most sad about was everything I was going to miss out on. I wanted to graduate college to validate both the countless hours of studying I’d put in and the hard work of my parents in funding my education. I wanted to watch my sister walk down the aisle of her wedding and hold her first child. I wanted to see where my own career and life would lead further down the line. Although I didn’t know what the future held at the time, I was often left bitter and angry that things were being “stolen” from me prematurely.
The miracle and massive irony of cancer is that such a physically debilitating, painful and mentally deflating disease can ultimately be so enriching and empowering. Life, work and busy schedules are structured in a way that we are rarely able to step back from our present circumstances to appreciate and reflect on things that we actually consider of utmost importance. I went from being consumed by the prospect of engineering final exams to confronting the reality of my own mortality. I went from worrying about grades and recruiting several months down the line to wondering if every time I saw a loved one would be the last time I’d ever see them again. When the very real prospect of your own death looms, you suddenly don’t care to spend a conversation arguing or gossiping, but rather sharing how much someone means to you.
Life, in the midst of the chaos of treatment, became very, very simple: appreciate all that you have, love as much as you can, and try to spend whatever time you have left to enrich rather than destroy.
I have moments now where I feel God whispering into my ear, “this is why.” I heard it when I watched my sister and her husband at the altar, the culmination of an extended relationship that spanned the course of my cancer diagnosis. I heard it when I held my niece in the hospital for the first time, and every time I hear her shriek and giggle when I chase her around her house. I saw it in my mom’s face when she thanked my doctors when I was leaving the hospital, with a sincerity and gratitude that only the mother of a gravely sick child can feel. I felt it as I walked across the stage to receive my diploma at the University of Virginia, two years later and a few states away from where I anticipated graduating college. And I feel it now when I see people sign up to be bone marrow donors, sacrificing their own time and comfort to potentially save the life of someone they’ve never known or met.
Bone marrow registration
I don’t know what it’s like to receive a bone marrow transplant (BMT), as I am not a BMT recipient. Early on my doctor informed me that the possibility of needing a BMT existed if chemotherapy was not effective in eliminating all of my cancer cells. Fortunately the chemotherapy was successful and I didn’t need to go that route.
However, when the possibility of needing a donor was real, my doctor shared the reality of being an ethnic minority who needs a bone marrow transplant: the chances are not very good for finding a match. Due to the types of DNA markers that need to be matched with donors, recipients are overwhelmingly likely to need donors of the same ethnicity. In most cases, there just aren’t enough minority donors registered to find a match likely in any ethnic group.
Cheekswab is my attempt to change that. While I don’t have first hand experience with bone marrow donation, I do have a very personal understanding of what it’s like to face a health problem you have no control over. I understand the helplessness of a patient, and the willingness but ultimate powerlessness of a family or friend to remedy the situation.
Cancer is the great equalizer in that it doesn’t discriminate based on ethnicity, socioeconomic status, political affiliation or belief system. It’s a sudden and unrelenting disease that affects not only the patient but their entire network of loved ones. That patient is not just some random person, but somebody’s parent, sibling, spouse, best friend or child. I believe almost everyone has someone in their life that they love more than themselves, and, in that regard, can empathize with what it must be like to be powerless to help that person in their time of greatest need.
Cheekswab is rooted in my belief that we can find reasons to press on in the face of devastation, that people are by nature full of empathy and love, and that with effort and dedication we can all make a legitimate contribution in remedying some of the world’s most devastating and seemingly insurmountable problems – even cancer. I believe that cancer is something that we’re all aware of but may not understand. I believe that the power to create conviction for a cause is rooted in honesty and integrity and not in intentions to deceive or mislead. I believe that if people are willing to sacrifice for the sake of others, everyone’s life is forever changed for the better. And I believe that the more people who register for the Be The Match Registry, the more lives will be saved.
Thanks for listening.
If there’s anything on this page you’d like to discuss, please contact me.
Chemotherapy is a liquid that is dripped in an IV into your bloodstream. I never knew that before I went into the hospital. In my case, chemotherapy was used to wipe out everything in my bone marrow/blood, in hopes of clearing out any cancer cells. As a result I underwent regular blood and platelet transfusions. (Back)
My friends collectively threw me a huge surprise party on the hospital floor for my 21st, which was amazing and wonderful. At that point my head was shaved, I was wearing a hospital gown and I couldn’t eat any cake due to chemotherapy-related immuno-deficiencies, but it will always be one of the most memorable birthdays I’ll ever have. (Back)