Begrudgingly becoming the donor I wanted to be
As I sat in the chair receiving apheresis I noticed a patient slowly walking up to me. In a quick encounter they unexpectedly voiced a few impactful sentences. “If it weren’t for people like you I wouldn’t be here today. I just wanted to say how much I appreciate what you’re doing.” The words left a deep imprint and continue to be a driving force in my health care career.
I vividly recall standing in the middle of our college campus mall, nudging my girlfriend Jillian (now wife) to keep moving along on our way to class or study, of which I can’t recall. To be honest, at that time it didn’t matter as I had little desire to hear what the people at the pop-up booth were promoting. I was quickly nudged back and then Jillian gently uttered “Don’t be selfish and let’s do the right thing.” This was more than just a passing by opportunity to fill out a form. Rather, it was a a decade-plus journey and one which in hindsight would be a turning point for my future in health care and more generally, life. The booth? All they were offering was an opportunity to register with the National Marrow Donor Program called Be The Match to become a potential donor. This program is a critical registry established to support patients with certain blood cancers and facilitates life-saving bone marrow donations. Ok, ok, not my finest moment in the story so far!
The origin of this story goes back to 1994 when my dad was diagnosed with non-Hodgkin's Lymphoma. It was a diagnosis that shook our family. I was the youngest of eight kids and my parents owned and operated a small town retail pharmacy that flourished based on my dad’s ability to work six days a week as the only staff pharmacist. I was 11 years old at that time, but mostly failed to understand the gravity of the diagnosis. After all, the word cancer carries a different weight as an 11 year old and to be honest, we all view our parents as immortal. I do know that his cancer journey had a significant impact on what what I valued in life. Reflecting on the experience as an adult, my dads story of perseverance over the last 27+ years is one worthy of its own blog, so I’ll attempt to keep this part short. After rounds of chemotherapy and radiation over a few years, my dad eventually required a bone marrow transplant to cure his lymphoma. Fortunately he could use his own cells to complete the stem cell transplant, but not everyone can. This experience, among many of the health care battles my dad has faced over the last three decades, has provided perspective for the challenges patients face every day, along with inspiration for what can happen through modern medicine and the people who support it.
While my dad was fortunate to use his own cells for the transplant, some cancer patients require bone marrow donations through registries of donor pools like the National Marrow Donor Program. Circling back, in hindsight, standing there on that campus nudging Jillian to move along, I was extremely selfish, but fortunately, she doesn’t easily back down when its clear what the right decision is. Then came her aforementioned statement which sticks in my head, “Don’t be selfish and let’s do the right thing.” In a begrudging nature I filled out the form (as did she) and subsequently completed the process of registering as a donor. Admittedly, I figured we’d be lost in the abyss of a national pool of potential donors.
Fate is a funny thing. It was no less than 6 months after registering that I was studying for a pharmacy school exam and received a phone call from an unrecognized number. For whatever reason I decided to answer. “Hi, this is Paulette from the National Marrow Donor Program and we’ve identified you as a possible match for a cancer patient.” This moment caused an immediate recollection of my own dad’s cancer journey and oddly, a sense of guilt that I considered even for a moment not stopping in the campus mall and registering as a donor. Either way, I strongly believe fate had pushed me to be faced with this opportunity. Whether it was an inflection point for my future as a pharmacist or a way to give back to the health care system that gave my dad (and so many others) a chance at life, I was up for the challenge. Paulette explained there were a couple potential candidates and if I was the best match, they’d let me know, but I’ve have to agree to proceed with the donor workup. I quickly answered with “Yes, I will do whatever I can.” As it turned out I was the best match for the patient. The patient had acute myeloid leukemia (AML), a more rapidly progressing form of blood cancer. This is where my donor journey began.
Three types of bone marrow donation are available: traditional bone marrow, using peripheral blood stem cells, or cord blood. I was asked to provide a peripheral stem cell donation which requires pre-donation injections of filgrastim, a medication that boosts blood cell production so they can extract a high quality sample of blood cells. Following these injections, you undergo apheresis which is a process where blood is filtered through an IV line and cells necessary for donation are extracted for the patient who has cancer.
The first available time to begin the donation process was the week before Fall semester finals in my third year of pharmacy school. I received consecutive days of filgrastim injections including all days of finals. Did this present some challenges with preparing for finals? Sure, but if the patient could push through a bone marrow transplant, I could certainly carve out time, endure minor inconveniences, and even a little bone pain (from the shots). If the opportunity to potentially save someone's life can’t inspire you, I’m not sure what can. The donation was scheduled the day after our last final exam. The majority my classmates went out to celebrate and I joined in for a bit. However, I made sure to stick to the plan — stay hydrated (with water) and get to bed early. The next morning I showed up early to the University of Nebraska Medical Center to receive apheresis, where they took the necessary cells for donation. My job was done, or so I thought.
When donating, anonymity prevails and you know very little about the patient who needs the transplant, but you do know their cancer diagnosis. With finals over I left the appointment that day, packed up my things and went home for the holidays. Each day I wondered what would happen. When would the patient get the cells? How were they doing? Will the cells help them get better? Are they too able to enjoy the holidays with family? Do they even have family? I received the answer to a few of those questions in a few months. The National Marrow Donor Program called me back in the late Winter and said that unfortunately the patient needed another stem cell donation. Without hesitation I agreed and went through the same process, eventually donating in March. It was during this second round of donating that I experienced a chance encounter that sticks with me to this day.
Apheresis takes a few hours to compete. I was back at the University of Nebraska Medical Center in a partially open room where you could see other patients receiving treatments. As I patiently sat there while the machine did its job, every once in awhile I’d catch the kind stare of an older woman. I continued to chat with the nurse who was caring for me that day, discussing various life topics, one which included the power of becoming a bone marrow donor. About halfway through my session that same woman came over and voiced the words that still echo in my head today. “If it weren’t for people like you I wouldn’t be here today. I just wanted to say how much I appreciate what you’re doing.” She could hear us talking about donating from across the room and put the information together that I wasn’t there receiving treatment, but rather donating. I left that day with renewed sense of clarity regarding the power of simple acts of kindness and the importance of human connection.
Unfortunately, despite two stem cell donations the patient ended up passing away from AML after an undisclosed amount of time. The natural and immediate reaction was sadness and disappointment that despite the effort, they couldn’t live longer. As an optimist my tune immediately changed when I asked myself one simple question. What if by donating, I helped the patient live an couple months longer than without the donation, maybe long enough to fulfill a lifelong dream experience, watch a child or grandchild get married, or other extensive lists of possibilities? That consideration immediately grounded any lingering negative thoughts knowing that in some way, I contributed. In life, we can’t always control the outcome, but we absolutely can control the effort we put in. I was happy to have contributed in a small way, giving this patient hope and a chance.
I don’t know what it was about receiving the nudge that day in the mall of our college campus or the words from the cancer patient who walked up to me during the apheresis session, but they left deep imprints as reminders we are all given a short time here on this planet. How we spend it matters. The impact we have matters. People matter. Small, unselfish decisions have the potential to profoundly affect the lives of others. Every day I have the great fortune of working in health care where we are reminded of the tantalizing despair of human disease and at the same time, the amazing power of modern medicine. I’m incredibly grateful that Jillian pushed me to do the right thing that day and that she continues to do so. The donation experience is one that shapes many of my decisions and sets a default direction for my moral compass.
I strongly encourage people register to become a bone marrow donor. It’s impossible to know if or when you’ll get that call, but if you do, it will be a life-altering experience, particularly knowing that such a simple act for us can mean life or death for another human. After all, isn’t that why we’re all here? So sign up now and be the change you’d like to see at bethematch.org.
