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.
What does Lens on Myeloma Mean?
My current column
- My how time flies: My 6th re-birthday.
It’s been half a year since I’ve posted here. I hope you didn’t miss me too much. I’ve been busy living.
I write today to commemorate the 6th anniversary of my stem cell transplant. I distinctly remember that six years and a few months ago I was struggling with thoughts of what lay ahead. I knew that a transplant was my best hope of achieving a meaningful reversal of the myeloma that invaded my blood. Still, the many risks, and stories of horrendous side effects, left me wary. I was ready but frightened.
As it turned out, the transplant and my recovery went smoothly. I was home in about 30 days and I showed no signs of myeloma in regular blood tests about six months after the transplant. A few years later I tested MRD negative. At the time of the transplant, I hoped I would achieve at least two or three years of minimal disease involvement before I might need major treatment again. Here I am, six years later. Happy, healthy, and looking at life’s future.
I’m not superstitious or one to think I may jinx myself by writing these words, but you’ll excuse me a moment while I knock on some wood. I haven’t written here lately because I’ve been busy living. We are working around the house, planting, decorating, and remodeling. I’ve been snuggling my newest granddaughter and watching the others grow big. I’m witnessing my own children become amazing adults. I started down new career paths and I’m looking at other changes before retirement. All this living, without concern that my myeloma may return.
Isn’t that the goal for all of us? To live every day to the fullest without concern it will end one day. With my cancer diagnosis seven years ago it felt like I was being shown the when and how of my demise. I was merely marking time for the inevitable. Now I know that isn’t true. Will my myeloma return soon. That is possible. Will I ultimately leave this earth earlier than I’d hope? Isn’t it always “earlier” than we’d hope?
My diagnosis plays a part of my life every day. I take a fist full of medications every morning and night, one of which specifically targets the myeloma. I get blood drawn every two months and visit my doctors to review the results. I’ve had extra boosters and vaccinations to help avoid a serious case of Covid-19 or other diseases. Myeloma is inextricably connected to my day-to-day life. Even so, I’ve reclaimed control of my life from the disease.
I know not all myeloma patients are as fortunate in their treatment as I have been. I also know many patients like me live full lives beyond their diagnosis. Seven years ago I learned I had a “high risk” variant of incurable cancer and my life may be cut short. I was told and wanted to believe that statistics are meaningless in real life. The only statistic that matters to your disease is what happens to you. Will I respond well to treatment? Will I achieve many healthy post-transplant years?
While the answer to these questions can be different for every patient, I’m here to say it can happen. It happened to me. Looking forward from diagnosis is such a difficult and frightening task. Looking back from an undetermined but hopeful future is a luxury.
I will try to share more of my experiences as a myeloma patient here, but you’ll excuse me it I keep busy with all the other glorious parts of living.