Even though Dan Niedert has been living with multiple myeloma, he finds resilience in his myeloma journey. At the Brian D. Novis Research Grant Awards reception, a night filled with hope held during the 2019 American Society of Hematology meeting, Dan described his experiences with the disease. He shares how he enjoys a quality of life today that he did not expect at the time of diagnosis. Read the following transcript of Dan’s speech from how he went from veiling his diagnosis in a “cloak of privacy,” to becoming an active IMF Support Group Leader.
Good evening. It is a real privilege to be here tonight, and it’s one I could have never imagined embracing when I was first diagnosed with myeloma six years ago.
Back then, I wrapped myself in a cloak of privacy about my disease, only sharing my diagnosis with my wife, Barbara, and my closest friends and family. For me, that closely guarded privacy was a barrier to acceptance — to moving forward.
My myeloma journey started in August of 2013, when I had my annual physical two weeks after returning from a ten-day cruise around Hawaii. Having been ridiculously healthy all my life, my annual physicals were very routine and usually provided me with an opportunity for my doctor and I to share stories about fishing and travel.
But that year, my doctor said: "Everything looks good, Dan. . . but your protein is a little high.”
Over the next three months, there was more testing. Then, on January 4, 2014, I heard: “You have multiple myeloma.” I had heard of myeloma before, but I had no real knowledge of it.
I graduated from the University of Pittsburgh School of Pharmacy and spent my career in retail pharmacy, eventually working in the pharmacy for Hope Hospice in Fort Myers for the last few years of my career — which were the most rewarding.
In part because of my professional background, I was comfortable learning about-- and now keeping myself current on myeloma and its treatment. I go to my appointments prepared. I sincerely believe that it is necessary for a patient to be informed and in charge of managing his or her own healthcare decisions.
For me, though, a significant struggle early on was the idea of “acceptance.”
While searching the Internet, I found “Pat’s Myeloma Beach Party” in February 2014, an event in Tampa hosted by Pat Killingsworth.
Each of the attendees stood and gave their myeloma short story. When it was my turn, I stated that I was just recently diagnosed, and my most difficult challenge was accepting my diagnosis. I was struggling to come to grips with what was happening.
Before that event, I had no desire to participate in a support group. But after attending, I realized the benefits that a myeloma community had to offer. I used the IMF’s support group search engine and contacted the Fort Myers Multiple Myeloma Support Group.
Two-and-a-half years later, our support group leader needed to step aside, and asked me if I was willing to become a co-leader. This was a long way from the cloak of privacy I had started with, a long way from my resistance of acceptance.
I said: Yes.
I have since been to the IMF’s Support Group Leaders Summit twice. These summits provide leaders with tools and tips for better leadership, an in-depth understanding of the disease and its treatments, and also an extended connection to the myeloma community.
I have also attended the IMF’s Patient and Family Seminar in Boca Raton five times. I regularly register for IMF teleconferences. I use the IMF Infoline — and I vigorously encourage my support group members to do the same.
I read Dr. Durie’s blog and watch the “Ask Dr. Durie” videos — in fact, I often play them at our support group’s monthly meetings. I utilize the support group leaders’ monthly newsletter. I subscribe to the "Myeloma Minute." I provide our support group with all of the IMF’s publications.
Living well, for me, is both physical and mental. Life comes at us fast, and with a lot of twists and turns along the way. So I take command of the things I have control of and learn to accept and adapt to those things out of my control.
Living well is taking an opportunity when it presents itself, accepting what life brings, and engaging with the people I love and enjoy being with.
Living well with myeloma is not achievable without first accepting the diagnosis, and learning all I can about the disease and its treatments. It’s building a support team of doctors, nurses, and caregivers, and letting them help. It’s advocating for myself at every opportunity.
It’s enjoying life to the fullest.
For me, that includes radio control model aviation — our flying club here in Cape Coral is one of the largest in the country with over 300 members. It also includes shotgun shooting: Although my aim isn’t always on target, I do enjoy shooting Trap, Skeet, and Sporting clays.
For the past 21 years, I’ve also taken an annual fishing trip with two wonderful, true friends who I am blessed to have in my life. We grew up in the same hometown, but now travel from Pennsylvania, Texas, and Florida to visit a new location every year — in hopes of landing that trophy fish.
But more importantly, it’s to spend time together and catch up on our lives.
My love for travel also extends to cruises with Barbara and our friends, short weekend trips to visit family, and lots of road trips, which are my favorite. We research these trips, but we don’t follow a strict schedule, or make hotel reservations ahead of time. We never quite know where we’ll go or how long we’ll stay. We have made some great discoveries along the way, and created some of my favorite travel memories.
I love traveling so much that back in 2013 — right after my wife and I had just returned from our Hawaiian cruise — I made a goal of visiting all fifty states. Three months later, my myeloma diagnosis shook my world — including my vision for achieving that travel goal.
My initial myeloma treatment plan included a transplant, but my myeloma labs 100 days post-transplant showed it was a disappointing failure, and we needed to consider new therapy.
The decision to use Kyprolis was mutual with me and my doctors. It turned out to be a miracle drug for me. I schedule my infusions for mid-week, which allows me to enjoy long weekends. And I schedule my travel plans between cycles, which gives me a ten-day window each month.
The success of my treatment and the acceptance of my new normal allowed me to complete the goal that at first after my diagnosis I never thought possible: On November 1st, 2018, I arrived in Nebraska. I had reached all fifty states.
For me, standing underneath that “Welcome to Nebraska” sign is what Resilience is all about. Being able to adapt to adversity by accepting the challenges before me, letting go of fear of the unknown, and developing a plan of action.
As I said, at first this did not come easy. But back in 2014, at “Pat’s Myeloma Beach Party,” I met Ken Hofmeister and he said, “Dan, I can help you with that.” His words of advice, support, and motivation from that day on helped me get a healthy perspective.
Many of you had the true honor of also being inspired by Ken, because he was at a podium like this one at ASH two years ago. We lost Ken in 2018 at age 81.
It is in large part because of him that I first had the desire to pay it forward, that I reached Nebraska, and that I’m now here at this podium.
It’s now been six years with my myeloma diagnosis. I never imagined that I could still say I’m symptom-free and enjoying life as normal.
Six years ago, I never pictured the quality of life I’m enjoying today, planning my 2020 Summer fishing trip with confidence.
This upcoming year, Barbara and I are also planning a European river cruise spanning Paris to Normandy, and a road trip that will possibly take us to Joshua Tree National Park and Southern California.
Beyond these travel adventures, my plan is to enjoy just hanging out with friends and family, with Beauty, our golden retriever, and to live a good life every day.
I don’t buy into statistical pessimism, so I have made it a point not to focus on the “median” or the “mean,” and I won’t this upcoming year either. I have released the frustration and the fear.
Instead, I celebrate the privilege of being here with you tonight. Thank you.