It’s been two years since my multiple myeloma diagnosis and the beginning of this journey. So much has happened since then.
When you watch events day-to-day, it’s easy to miss their significance – even in the case of big events. Given more perspective, however, the challenges and changes become more clear, and I now recognize the many new beginnings I’ve encountered in my myeloma life.
I’ve already written about the challenging months following my initial diagnosis, when I faced debilitating fear and anxiety. I don’t know if time will ever make those feelings fade completely, but I’ve moved well beyond the weight I felt with the news. I can’t identify a specific turning point when the haze of the diagnosis was lifted, because it primarily came with time and education.
While the fear subsided gradually, starting treatment in November 2015 was an event – a new beginning – that dramatically altered the journey for me. I was finally “doing something” about the threat I faced. I was empowered to wrest control of my life away from the cancer that seemed to take control a few months early.
Even though that initial treatment was not as successful as we all wished, I didn’t feel fear as much as I felt encouraged to explore my options. I innately knew we would find a successful treatment. This was the end of my days as a passive and fearful patient just waiting on the unknown. I truly felt like I was actively attacking the cancer.
My stem cell birthday on July 22, 2016 was another new beginning for me. A big one.
Up to that point, I never really felt I was sick, even while I was going through my induction therapies. That is one of the odd things about multiple myeloma for me; I’ve never felt ill in any way from the disease. I’ve also only experienced mild side effects from the treatments. If anything, the diagnosis created a “mental health” challenge for me coming to grips with what was happening.
The transplant moved me to a new place. The daily blood draws and clinic visits, intended to immediately alert us to the first signs of infection or other ailments, made me feel vulnerable. Reporting to nurses and doctors everything that went into my body, and what came out, was sometimes embarrassing. The loss of appetite, constant fatigue, and drastic restrictions on my life made me feel disabled. While I was extremely lucky to avoid severe side effects during this time, and I responded well to the treatment, my transplant moved me to a new category of patient and it all became very real for me.
As I recovered, I decided I wanted to be more involved with the multiple myeloma community. Following my transplant, and the fulfillment I experienced documenting my treatment in The Beacon forum, I decided to try my hand at writing a column. I have a story to share, I enjoy writing, and I wanted to give back to the community that helped me survive. The experience of writing has encouraged me to get involved in other ways. This new beginning has moved me beyond a personal journey with myeloma to addressing a community cause. I will always be a patient, but for now I feel I’ve left the restraints of the clinic.
At this point in my journey, I’ll be receiving maintenance treatments indefinitely. My labs are generally normal, and the multiple myeloma is well at bay. Unlike the earlier treatments that aimed to kill off as much of the cancer as possible, maintenance is intended to preserve the status quo. This is a bit odd, in that I will undergo a lot to simply see no change in my health. But I recognize it signals my newest beginning – the start of what I hope will be a very long stretch of my life with myeloma.
My family has been season-ticket holders for the Seattle Sounders FC soccer team since its inaugural game in 2009. Going to the Sounders’ matches from March to October every year is a major family activity. As season-ticket holders, we’ve enjoyed the same seats every season, and we’ve grown very close to several people who sit around us.
Unfortunately, the restrictions of my stem cell transplant robbed this activity from us last year. The last live match I attended pre-transplant was in July. I was unable to attend the remainder of the season, which the team capped by capturing the league championship. I watched all the matches on television, but I really missed being part of the crowd. Last month, the Sounders opened their 2017 home stand, and I returned to my seat. After the match, my wife and I both experienced an unexpected feeling of accomplishment.
Looking back two years, I’ve never really felt my life was threatened. Each day was unique, and we just did what we needed to get to the next. We attended the appointments and meetings that were scheduled. We sat patiently for the blood draws and treatment infusions. We cleaned the house, prepared our meals, and followed the instructions to help me avoid getting ill.
While we understood that multiple myeloma was a killer, I don’t think we ever really felt threatened. But on the day we returned to our familiar stadium seats and cheered our favorite team, I think we realized what we had done. The malignant cells in my body are nearly immeasurable. I avoided serious complications. I’m generally very healthy and active. Our lives are returning to a new normal, and that includes returning to important and meaningful experiences we had lost for a time.
Two years ago, everything about multiple myeloma was a frightening mystery. Since the day of my diagnosis, I’ve stepped through changes and challenges.
Today I truly feel I’ve started anew. I’m ready to go wherever this road takes me next.
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Photo Credit: (c) 2014 Mark Pouley
April brings us the annual Skagit Valley Tulip Festival and our yearly reminder of spring and nature’s new beginnings. Hundreds of thousands of visitors to the valley arrive to take in the beauty of the flowers. The spectacle also offers endless opportunities for photographers. This image is a favorite I call “Early Bloom” because it was early in the season and these buds are just preparing to open to their full glory.
Lens on Myeloma 