A Northwest Lens On Myeloma: What’s Next?
“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.
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Mark's Photo For The Month
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Photo copyright © 2019 Mark Pouley.
Mark Pouley is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
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So glad you were able to get to Disney with your grandchildren. It is such a fun place to visit with kids. And I end up feeling like a kid again myself when I go!
The last big trip my husband and I took was to Italy for our 20th wedding anniversary 8 years ago. I really didn't think much about not going that far away again because of my disease but more because we didn't have the money. I know I'm supposed to relapse at some point, but I don't want to keep expecting it, so I have decided to plan for a big trip again. Of course I'll buy trip insurance, but I don't want to sit at home wishing I could do things and then let time slip by. I'm taking a chance and planning on another big trip in a couple years.
I hope you and your family can enjoy those trips you were talking about. We can't wait to see your wonderful pictures!
Susan, Italy is on our list!
Thanks for an inspiring column Mark. What a wonderful experience it must have been for you at Disneyland with your grandchildren. It is also great that you are able to look forward to experiences other than your medical appointments. I too read April Nelson’s column and felt so hopeful for our future. Since my husband’s diagnosis almost five years ago, we have been trying to travel, visit relatives, and not dwell on everything “myeloma.” My husband shares some of the same side effects as you, so it is not always easy. Like April, a friend of a friend has had myeloma for 10 years and appears to be doing well even with no maintenance treatment. It is these stories that help myeloma patients hope for the best. Love your Disneyland photos.
What a wonderful column (and not because you had a shoutout to me). This is my favorite sentence: "While we don’t ignore the natural “what-ifs” generated by myeloma, they do not drive the conversation." I am reading this in the early morning, our house is quiet, and the tears are running down my cheeks. Many, many happy moments, Mark.
Thanks for the very upbeat column, Mark! I think it's great that you and your family are planning special trips and not letting the myeloma worries ruin your present happiness. The pictures of Disneyland are so bright and cheerful, and they remind me of when my husband and I took our daughters there when they were about six and four years old! It is meant to be a kingdom of the imagination for the young and young at heart!
Thanks for the inspiring column, Mark! I’ve just celebrated my third year post transplant, and I am thrilled to be managing my health. I won’t allow myeloma to drive my conversations. In fact, I try not to think about it at all. Of course, then I have an appointment with my myeloma specialist, and I can’t stop thinking about “What if ...?” Like I tell my family, I won't worry until I have something to worry about! That usually works for me.
I deal with my side effects as privately as I can. My husband, of course, is aware of them, but the rest of the world doesn’t need to know about my problems. Making myself appear as normal as possible allows me to behave that way.
In some respects, I wish people would just forget that I have the cancer cloud looming over me. It’s there. I know it. I don’t need reminding of it. To that end, I make plans, just like you are doing, to live life and to be in the moment! I try to do things that make me happy such as a river cruise, road trips, hikes, and just hanging out with friends and family. People like April inspire me that it’s not all gloom and doom with this dreaded disease. There is hope for us.
Thank you for reminding me that if I don’t want regrets, I’d better get even busier doing the things on my bucket list.
Mark, I am new to all of this myeloma land. I was diagnosed in February 2019. It helps me to read your column and realize there will be what-ifs, but the most important thing is to live life as fully as possible. Thank you for sharing.
Mark, I so enjoyed reading your column! My husband, Daniel, and I went to the "happiest place on earth" about five years ago, and it was one of the best trips we have ever taken. At midnight we embraced on a wooden bridge overlooking a winding stream, gazing at the brilliant fireworks above us. They were set to the song, "When You Wish Upon A Star" - and in that moment, I wished that we would live happily ever after.
Here's to living in the moment and wishes coming true!
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