I am Mark Pouley. I am a husband, father and grandfather. I’m also a multiple myeloma patient. I started writing about my experience with multiple myeloma about a year after I was diagnosed and well into my treatment. When I was first diagnosed I got a lot of help from patients that came before me. It’s my turn to pay it forward and by sharing my story I may answer questions others have about being a myeloma patient or caring for someone with myeloma.
For me, the one lesson that stands above them all is that myeloma is part of my life and accepting that reality is the key to continuing to live a full and happy life.
My current column
- New life at 5
For a child, five years can be a lifetime. They grow so big, they learn so much, and they experience so many new things. For adults that same amount of time flashes past in a blink, often without much change. When you undergo a stem cell transplant they sometimes call it your “re-birthday.” My re-birthday was five years ago, and like a child, it seems like a lifetime has passed since July 22, 2016.
When I was diagnosed a year before my transplant I wasn’t suffering much physical illness. I was one of the lucky myeloma patients that discovered the disease during a routine blood test before it had a chance to do much damage to my body. At the time fear and anxiety became my biggest ailment.
During an early conversation with my doctor, I was told I might only survive six years. When I heard those words I understood very little about myeloma or its treatment. The thought of not surviving to my 60th birthday often paralyzed me. Strong support from loved ones, professional counseling, education, and time allowed me to move well past the debilitating shock I suffered.
The other memory that seems so far away today is of the many hours spent driving to the cancer clinic, sitting in waiting rooms, and enduring tests and procedures. The early days of testing and treatment were scary. While it became somewhat “routine” over time it was never normal. For now, thankfully, that part of this new life is on hold.
I was lucky to experience a relatively easy transplant, but looking back, I have perspective on the impact even that “easy” transplant had on me. In the first year following transplant I was definitely in “recovery” mode. I spent a frightening night in the ER with an unexplained 102 fever. I suffered frequent coughs and colds, many times requiring trips to the walk-in for chest x-rays and medications. Fatigue was a real thing and naps were frequent. My muscles were far weaker than my pre-transplant non-athletic form. Over time, however, most of these reminders of my cancer have faded.
At the beginning of 2020, I learned all the hard work paid off. Tests revealed that I was MRD negative. The most sophisticated testing science currently offers detected no myeloma cells in my body. While regular blood tests were clear for over a year, the MRD test was monumental. The test confirmed that myeloma isn’t lurking behind the stable blood tests and my general good health.
2020 was historic for the world, not just me. Like so many, when I left the office in March and began working from home there was no way I thought I would still be here over a year later. The uncertainty surrounding the virus, and its deadly consequences put most people on edge. Having a compromised immune system, which appeared to be working very well, caused me concern. I certainly paid more attention to the health warnings and followed the most conservative advice. Eventually, my wife and I settled into our covid inspired home office and reinstated our transplant cleaning protocols to stay safe.
Given how strange life was for everyone last year, I’m hard-pressed to feel I was any more impacted than the majority of people. Being separated from people probably contributed to the fact 2020 was the first year since my transplant I didn’t have at least one cold or coughing spell. With the amazing introduction of multiple effective vaccines, there is hope we will all return to “normal” very soon. On this anniversary of my re-birth, the world is showing encouraging signs of its own reincarnation.
I’ve passed the initial six-year prognosis; in fairness, my doctor was optimistic I would beat that number. I’ll be celebrating my 60th birthday later this year. I remain cancer-free, my test results are stable, and I feel healthy. The aches and pains I complain about now appear more associated with being 59 than being a cancer survivor.
Since my cancer diagnosis and transplant my life has changed so much, and for the better, in these five years. My grandchildren are growing and another will join us in November. My adult children are living incredible lives. My wife and I inch closer to our retirement plans. Contrary to ending my career I’m pursuing exciting new opportunities. Most significantly, with a better understanding of myeloma, the success of my current treatments, and the development of even more treatment options, I’m hopeful that I will continue to enjoy many more cancer-free days.