Leukemia survivor Stephen Bess on life, change and 'my new normal'

June 1, 2015 | by Stephen Bess

Leukemia survivor Stephen Bess Leukemia survivor Stephen Bess, pictured here with his wife, Erin, will meet his bone marrow donor for the first time at City of Hope's Celebrity Softball game.
Nashville, Tennessee, native Stephen Bess, who received a hematopoietic stem cell transplant for acute lymphoblastic leukemia more than two years ago at City of Hope, will meet his genetically matched donor on June 13 in a rare and special ceremony at the 25th annual Celebrity Softball Game in Nashville.  Here, Bess recounts his treatment experience and the perspective he's gained ... ** In the midst of all this craziness – meeting my hero donor, reaching the two-year post-transplant milestone, starting an incredible new job, celebrating life in my hometown of Nashville, and celebrating my wife's first pregnancy – I was asked to write a blog post for City of Hope. Specifically, I was asked to answer two questions: How has life changed since my diagnosis and treatment, and why did I choose City of Hope as my treatment hospital? The simple answer is that life has changed in every possible way. From the moment I watched my oncologist’s lips move in slow motion as he said, “You have leukemia,” to my first chemo infusion, to my transplant prep and even to this day, everything is different. I’m no longer gleefully ignorant of my mortality. It’s on my mind all the time. People often ask me, “Are you back to normal yet?” Life has changed so much, there will never be a “back to normal” for me; there’s only my new normal.Honestly, my new normal is, in many ways, better than my old normal. I’ve survived one of the most difficult physical processes that a human being can just barely survive – the complete destruction of my bone marrow, a stem cell bone marrow transplant, my blood type changing and the tedious, glacial-like pace of rebuilding my immune system. I’ve spent countless nights crying my eyes out, not because I feared for my own life, but because my diagnosis brought pain and suffering to the people I love the most: my wife, my parents, my siblings, my best friends. The fear, love and concern in their eyes made me want to crawl up into a ball and disappear. But I fought. Playing college and professional baseball taught me how to fight, how to compete and how to never give in even when the odds were stacked against me. Plus, I’m hypercompetitive, and my diagnosis presented the biggest competition of my life. I had to compete against my toughest enemy ever, leukemia, several times coming close to losing it all, only to crawl and scratch my way back into existence. I have great respect for my competitor, and I'm proud to have fought it off without losing myself in the process. I have an all new perspective on life, and it’s a perspective one only gains by nearly losing it all. My life changed, too, because a complete stranger in Germany – a wonderful young man whom I only know as Jonas (until I meet him at City of Hope's Celebrity Softball Game) – volunteered to save my life by donating his stem cells when he was called upon. How does one say thank you for that? A doctor who is 'awe-inspiring' in her care I’ve discovered reserves of gratitude and humility I didn’t know I had. I’ve experienced the best care I could imagine at City of Hope. My hematologist, Eileen Smith, M.D., associate director of the Clinical Research Program in the Department of Hematology & Hematopoietic Cell Transplantation at City of Hope, is awe-inspiring in her care. Dr. Smith has made me feel like I was her only patient – and bless her heart, I know I’ve driven her mad with my ridiculous T-shirt collection and stupid sense of humor – but she has been there as my team leader every step of the way. She may not know pop culture Internet memes, but she knows compassion, empathy and how to treat her patients with the utmost care. When I speak to Dr. Smith, I can tell I have her full, undivided attention. This has been particularly important when I was scared for my life, in pain or asking questions about my diagnosis that no one wants to ask. Dr. Smith is an angel on Earth, I’m convinced, and I can only explain my good fortune in having her as my doctor because some divine power brought me into her care. City of Hope’s staff has treated me like family. The nurses have always greeted me with genuine smiles, from the days when I was pasty white, bald and fragile, through my treatments when I couldn’t go an hour without getting sick, and through my recovery. The nurses have been my cheerleaders. They’ve held my hand when I was scared to receive toxic chemo infusions that required them to wear haz-mat suits to administer. They've cried genuine tears of joy at my recovery. The radiology techs, the phlebotomists and even the janitors – everyone at City of Hope is there because they love what they do. They've treated my illness while preserving my dignity and protecting my soul from despair, and I’ve often joked that at least three-fourths of the staff at City of Hope have seen me naked during my treatments, bone marrow biopsies and hospital stays due to the breezy gowns I’ve worn and the emergencies I’ve experienced. I’m lucky they still talk to me, much less treat me so well. This is how I like to bond with people, by showing them my rear end. But the staff at City of Hope has always supported me and been my advocates. If all of this sounds overboard, it’s because my team at City of Hope went overboard for me, every day. They continue to do so even now. Life has changed because my marriage has been tested in ways I never would have imagined when our priest said “for better and for worse; in sickness and in health.” My wife Erin and I spent 41 straight days in isolation at City of Hope, trapped in the same room together as my new immune system (thank you, Jonas, I love you) engrafted slowly into my bones, and somehow we didn’t drive each other insane – in fact, we fell further in love. She marched with me step by step; she watched me vomit uncontrollably for weeks on end; she watched me turn into a ghost of my former self and fight back. I did it for her, end of story. I’d do it all over again for her, too – she’s worth it. What real change looks like So, has life changed? You bet it has. It has changed in more ways than I could ever dare to describe, and I’m eternally grateful to each person who believed with me, who supported me and who carried me on their backs into my new normal. I am a lucky man. I’m still here, breathing, believing and living life in my own ridiculous ways. My life was flipped upside down, and thanks to Be The Match, my donor Jonas, City of Hope, Dr. Smith, Erin, and my family and friends, I’ve landed on my feet again. In the few days between my diagnosis and my first hospital stay at City of Hope, I printed out a quotation that means a lot to me and taped it to my hospital room wall so that I could read it every day. I wanted to share it with you. It’s from the acerbic, half-crazy Los Angeles author Charles Bukowski. It’s a phrase I’ve taken to heart, and it’s one that perhaps will give you some insight into this long-winded blog that attempts to explain how my life has changed. I wouldn’t have appreciated this quotation as much before my diagnosis, but now, it’s how I live my life. Bukowski said, “We are here to laugh at the odds, and live our lives so well that Death will tremble to take us.” Life changes in the blink of an eye; it certainly did for me. I’ve done my best to laugh at the odds, and live each day so well that I’m not only surviving, but in many ways – thanks to City of Hope and Jonas and my support system – I’m thriving. What more could a man ask for? ** Learn more about the 2015 Celebrity Softball Game. ** Learn more about becoming a patient or getting a second opinion by visiting our website or by calling 800-826-HOPE (4673). You may also request a new patient appointment online. City of Hope staff will explain what's required for a consult at City of Hope and help you determine, before you come in, whether or not your insurance will pay for the appointment.
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