I met Dave Mercer two years ago. He was everything CML doctors don’t tell you about when you are first diagnosed, wrapped in a neat package of courage and resilience. He was the guy for whom CML medication failed and who, in order to stay alive, underwent a stem cell transplant – a gruelling procedure that is not only incredibly hard on your body, but also extremely difficult emotionally and mentally. Dave faced all of these challenges head-on, determined to make it out the other side in one piece. And he did, though many of the people that he met in hospital were not so lucky.
So when Sue (Dave’s soon-to-be-wife, though we didn’t know it yet) asked me to say a few words at a gathering to celebrate the fifth anniversary of his transplant (which was also going to be a wedding, though we didn’t know it yet), I was honoured. Not only would I get to be a part of marking such an important milestone, but I would also get to witness a celebration of the triumph of spirit. Oh, and then there was the wedding, but we didn’t know about that part yet.
Sue suggested that I talk a bit about CML, the Network, and of course, Dave. So I planned a bit of a speech. I was going to explain CML, and how for many, it is generally well managed with targeted chemo medications. I was going to say that when people with CML are diagnosed, doctors like to compare it to diabetes – except that it isn’t. And how these same doctors say that transplants hardly happen anymore – except that they do, to Dave and many others whose medications don’t work the way they should.
I had also planned to talk about how, because of the transplant, Dave lives with extreme fatigue and a lack of appetite, and how graft versus host disease (a common transplant issue) has left him without a sense of taste or smell. And how Sue, with her unwavering support and optimism, represents so many caregivers, dragged along on this crazy ride, living gracefully while they face suffocating uncertainty.
I wanted to tell everyone about how the first time I met Dave was through an email message, in which he described his transplant experience in a couple of lines and wrote that he was “living each day, one at a time.” I had planned to talk about how he has given our group a glimpse of what the other side of CML looks like, and reminded us that there is still so much more work to be done. Soon, because of Dave, we will have a transplant survivor group to support those whose CML treatment is a stem cell transplant.
I was going to wrap up my speech with a quick nod to OneMatch, which matches volunteer stem cell donors with patients, and talk about how many people die because they can’t find a donor, and how because of these donors, Dave was able to find not just one, but two matches. I wanted to tell everyone that becoming a donor is super-easy with just a swab of your cheek. And that contrary to what everyone thinks, donating stem cells doesn’t hurt (check out Six Myths about Donating Bone Marrow and Stem Cells) and the best part is that you could save someone’s life.
This is what I had planned to say. Except that I didn’t.
Because for the hour or so before Dave invited me to the microphone, I was surrounded by people who joyously shared stories about Dave, using words like “strong,” “fighter,” and “survivor.” There was a moment when someone turned her face to the sun and commented on how warm it felt on her skin. Someone else hummed along with the music, smiling as he watched Dave standing tall, greeting his guests. This was a true celebration of being alive. There wasn’t room for the stuff – you know what I am talking about – that dark, heavy, drag-you-down stuff.
So when I stood up to speak, I kept it short and sweet: courage, resilience, and survival.
Soon after, to everyone’s surprise and delight, Dave and Sue were exchanging wedding vows. It was the perfect way to close the book on struggle and challenge, and begin a new chapter of hope, happiness and health.
Congratulations, Dave and Sue. Here’s to many, many more days.
Lisa Machado is a former financial journalist who, after being diagnosed with a rare leukemia in 2008, now writes about the patient experience, and the challenges of living with a serious illness. She is the founder of the Canadian CML Network, and the author of the award-winning “Living Well with CML: What you need to know to live your best life with Chronic Myelogenous Leukemia.” She can be reached at firstname.lastname@example.org