When I was first diagnosed with multiple myeloma in the spring of 2015, my doctor said I didn’t need to begin initial treatments until at least the end of the year. Instead of hearing the doctor say, “You are basically symptom-free, be careful of straining your back, drink lots of fluids, and enjoy the summer,” I spent the bulk of my time thinking about how sick I would become when treatments began.
My family spends substantial time each summer in eastern Washington enjoying nature and time together. During the summer of 2015, however, I let my uncertain future treatments interfere with our peaceful time away. Instead of relaxing on the beach, my mind often drifted to thoughts of chemotherapy side-effects and the “what-ifs” of failed treatment.
At the end of every summer trip, I pull our boat from the lake and store it for the winter. It is a 20-year tradition to make a final cruise around the lake, stop in my favorite locations, listen to the birds and animals, smell the air, and take one last mental picture of this heaven. The summer of my diagnosis, however, instead of savoring the moment, I asked myself if this was the last time I would be driving my boat. The question was irrational, hurtful, and without any basis. It turned a normally wonderful experience into a sad experience.
When first diagnosed, I focused on the estimated life expectancy for a high-risk patient and was certain I wouldn’t see my sixtieth birthday. I have a lot of significant life planned for my sixties, seventies, and beyond. I mourned the things I knew I’d miss: watching my grandkids grow, play sports, and graduate; watching my adult children fulfill their life goals; growing old with my wife and enjoying our shared dreams of retirement.
The anxiety became so difficult for me that I sought professional counseling. I believe it has played a large role in my ability to deal with this disease. I encourage anyone going through this to consider seeking help. I also think time and perspective are important teachers.
As it turns out, my treatment has been fairly uneventful and substantially successful. All the scary things I feared, while possible, did not occur. I wasted so much energy worrying about events that did not happen, that I missed or diminished the experiences happening all around me. I see that now and have learned to avoid letting this happen in the future.
I understand that relapse is a realistic possibility in my future. That might also mean painful or debilitating symptoms followed by more substantial treatments and possibly significant side effects. Of course, the disease may someday deliver the ultimate blow. All of this is possible, maybe even likely. The key, however, is to remember it is not happening today and my future is still indeterminate.
Life coaches of all stripe tell us in their own way that we should “live for today.” As cancer patients, we hear this advice constantly. While the sentiment is correct, it can be difficult to practice, especially when the disease has a hold on our mental health.
Nearly three years post diagnosis, I’ve experienced a couple recent events that help me understand this advice better.
One of my sons just celebrated his 32nd birthday, and the family, as we try to do for each family birthday, gathered for dinner. This time at a local Mexican restaurant. We’ve had this meal countless times before; in fact, Facebook later showed me a photo from two years ago of my son wearing a birthday sombrero. This time I could have thought about missing these dinners in the future; instead, I savored the experience happening that very moment. Not looking to the past, not looking ahead, I appreciate having all of my adult children still close enough to share these moments. Now they are bringing their significant others, and I have three adorable grandkids to join us.
I’ve always wanted to visit Alaska but I’ve never had the opportunity. Before my diagnosis, I was asked to provide consulting services for a business doing work in Alaska and I jumped at the chance. Unfortunately, because of my myeloma treatments and recovery, I’ve been unable to offer my services until now. I was recently invited to participate in a consultation in Juneau and Hoonah, Alaska. While the trip was very short, and it was primarily for business, I was able to enjoy the experience and take in the beauty I’d dreamed of. During the visit, I didn’t worry about whether I’ll return to Alaska, or for a longer trip (though I hope to do both). I soaked up the beauty of the mountains, water, and wilderness and appreciated every moment of the trip.
Applying this philosophy to special family gatherings or “bucket-list” trips may be a bit easier than “living for today” during a more ordinary day. That is, however, the challenge of living with multiple myeloma.
As I’ve become more comfortable with my myeloma, I’ve become better at living for the moment. It takes effort, but I work hard not to look forward at the things I may lose, or the troubles I may eventually endure. Instead, I appreciate the time I’ve been given by my current successful treatments, and the opportunities that time offers me. Whether it’s spending time with my family or taking on a new adventure, it is a matter of recognizing and enjoying the gifts that present themselves to me on a daily basis.
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Photo Credit: (c) 2018 Mark Pouley.
Alaska is full of beauty and wonders, and I could have spent every minute of my recent trip there taking photos. Here is one from my visit to Mendenhall Glacier just outside of Juneau. A lesson I learned very early in photography is that a photo is capturing a moment in time to tell a story. Much like photography, “living for today” is all about capturing a moment in time and living it to the fullest.
Lens on Myeloma 