“What are you going to do next?”
It’s rare that a slogan printed on a hat makes me pause, but reading this quote in a gift shop at Disneyland made me think.
My wife and I joined our oldest son and our three adorable grandchildren for three days at the “happiest place on earth,” and it was amazing. Seeing this magical world again through the eyes of our grandchildren was heart-warming beyond description. As a multiple myeloma patient four years past diagnosis, the trip was even more special.
Feeling so happy, and healthy, it was appropriate to ask myself, “What are you going to do next?”
For the last few years, I’ve focused on treatments, side effects, and test results. Nearly all of my thoughts about the future involve calculations about life with myeloma, the odds of relapse, and what a relapse will look and feel like.
During this time, if I asked myself “What are you going to do next,” the answer was typically related to my next appointment, my next lab test, my next medication, or what I’ll do when I relapse. In a very cynical way, my answer to the question often focused on what I’d do next trying not to die.
While I’ve never been able to forget about this disease, and I never will, I found joy and savored the time I spent with my family during those three glorious days in March. Most significantly, this happened without me giving much thought to multiple myeloma, something that has eluded me since my diagnosis.
Instead of planning on what I intend to do next in my efforts to fight myeloma, my trip last month reminded me to put my energy into my plans for how I will continue to live.
I owe Walt Disney a lot of credit for creating a place where this can happen, but I’d like to think our vacation was just a reminder about the mindset I can employ in my continuing life as a cancer patient.
If my health remains unchanged, for at least the next seven months I will continue on an aggressive treatment regimen that includes Kyprolis (carfilzomib) infusions, along with a trip to the clinic, three times a month. I will remain fatigued, occasionally forgetful, and a not-so-delightful companion on dex days. After that, there’s a fair chance I’ll travel less often to the clinic and enjoy more freedom from treatments and side effects.
If my health changes, all bets are off, and I’ll start a new path to take control of the disease. This contingency is, however, entirely speculative. There is no reasonable way to plan for it because I don’t know when it will happen or what form it will take. There is simply no way to guess what this will mean to my life and the plans I make going forward.
While it is important to understand these contingencies and be ready to deal with them, I won’t let them dictate my answer to the question, “What are you going to do next?”
I just read April Nelson’s Beacon column for this month. As a 14-year survivor, April is, to use her words, an outlier. She has no good explanation for her longevity. Her conclusion is that this is just what myeloma looks like for her. I take her journey as a lesson that we don’t know what our future holds. We can only play the hand we are given.
The hand I currently hold is a pretty good one. After my diagnosis but before treatment, I was relatively healthy, with only minimal bone involvement as a result of the disease. Following my initial treatment, an autologous stem cell transplant, and aggressive maintenance therapy, the myeloma is currently undetectable. The side effects from all the treatments have been relatively mild, and I am generally able to live the same life I did before diagnosis.
So, what am I going to do next?
I have tickets for three concerts this year (in June, July, and September). The artists and venues are varied, but each is someone I’ve seen before and that I eagerly want to experience again.
“Moulin Rouge” is one of my daughter’s and my favorite movies, and it is opening as a live musical on Broadway in June. We are planning a trip to New York City this fall to take in the show and soak up the city.
My brother has a vacation home in New Orleans, and though I’ve always wanted to visit The Big Easy, it has never happened. Seeing a new opportunity, we are hoping to join my brother and sister-in-law there sometime this year.
We have other places we would like to visit, but they may require passports, planning, and savings. While myeloma could change our ultimate actions, it will not alter our goals.
My wife and I have meaningful and specific conversations about potential retirement. While we don’t ignore the natural “what-ifs” generated by myeloma, they do not drive the conversation. Like so many other people our age, we are looking at our finances and goals, and we’re making plans to be with each other and enjoy the time when we leave our full-time jobs.
Finally, I again consider my family. Whatever I “do next,” it will include my grandchildren, my children (who all are now adults), my wife, and my other family as often as possible. Last month’s trip to southern California reminded me how happy I can be just being with these wonderful people when we set aside our cares for a time and let ourselves be happy.
More of that; that is what I am going to do next.