"You have cancer."
There are few words in the English language that are as earth-shattering as those three. I'll never forget the moment of my cancer diagnosis. It was a cold Philadelphia morning on December 7, 2006, and I was a 20-year-old college junior sitting in an office at student health services. What was first thought of as a month-long sinus infection resulted in bloodwork and a much more serious diagnosis: I had leukemia, and I needed to start chemotherapy immediately.
I was diagnosed with Acute Myelogenous Leukemia (AML), which is a cancer of the blood. 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.
That was the beginning of an eight month journey through a variety of hospitals and doctors visits, marked by images I will never forget. I watched the hair pool at the bottom of the shower drain as my chemotherapy regimen progressed. I saw the uncertainty in the eyes of friends and family who came to visit as they did their best to talk about anything other than where I was and why. For someone who had never as much as broken a bone through 20 years of his life, the six rounds of chemotherapy in 2007 grew more surreal by the day. But eventually I was forced to come to terms with reality. I was dying.
The paradox of a cancer diagnosis is that in the midst of physical, emotional and mental suffering, cancer can be empowering. When the very real prospect of your own death looms, you suddenly don't care to spend a conversation arguing or gossiping, but sharing how much someone means to you. Life, in the midst of the chaos of treatment, became 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.
Early on in my treatment my doctor informed me of the possibility of needing a bone marrow transplant (BMT) if chemotherapy failed to eliminate all of my cancer cells. Fortunately, chemotherapy was effective and I was able to avoid a bone marrow transplant. But thousands of blood cancer and immuno-deficiency patients per year face a much more grim reality.
Due to the lack of minority donors within the bone marrow registry, the bone marrow donation process becomes much more complicated for ethnic minority patients. Patients and donors are matched across 10 very specific genetic markers called human leukocyte antigens (HLAs). Given these requirements minority patients are overwhelmingly more likely to need donors from the same ethnic group. Unfortunately, less than 27 percent of the entire bone marrow registry is non-Caucasian, with Black, Asian and Hispanic donors making up 7.6 percent, 7.2 percent and 5.2 percent respectively. The numbers break down even further. For South Asians, 1.9 percent. For Chinese, 1.1 percent. For Koreans, 0.9 percent. Regardless of what specific minority group a patient is from, the lack of a donor pool makes their likelihood of finding a donor very low.
When people ask me why I got cancer, I tell them I won the lottery. Because that's what cancer is -- the lottery of death. When I was diagnosed I had no family history of leukemia. I was in good general health, I didn't smoke, drink or do drugs, and I did my best to live my life as a good person. But cancer is unexpected and indiscriminatory. It doesn't differentiate based on ethnicity, socioeconomic status, political affiliation or belief system. It's a sudden and unrelenting disease that affects not only the patient, but everyone tied to that person. 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.
I made a promise to myself on my hospital bed that if I were to survive, I would do what I could to spread awareness to minority communities. I would use whatever gifts and opportunities I had available to empower potential donors with honest information about the need and process, and debunk false rumors about painful procedures. I created Cheekswab to do just that.
The National Marrow Donor Program (NMDP) puts the likelihood of a single donor being called to donate at 1 in 540 people. The overwhelming majority of those who join the registry never hear from the NMDP and go on with the rest of their lives as regularly scheduled. But if cancer is the lottery of death, the bone marrow registry is the lottery of life. The chances of donating are small, but the opportunity is amazing. It is the opportunity to know someone lives solely because of your generosity. It is a gift and not a burden, and for those who do receive a call and complete a donation, I guarantee that it changes their lives forever.
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 daunting 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, not in the 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 National Bone Marrow Registry, the more lives will be saved.
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