At the Brian D. Novis Research Grant Awards reception, a night filled with hope held during the 2019 American Society of Hematology meeting, Doug Farrell shared how he adopted an attitude of steadfastness — or 'staying with it' — once diagnosed with multiple myeloma. Read the full transcript of his speech below.
Good evening, what a pleasure to be here. My wife, Kate, likes to say: “Doug has to talk to people-- anyone who will listen.” This is true. I love talking to both strangers and friends. Since everyone here in this room is part of the myeloma community, even if we haven’t yet met, I consider you a friend.
I have been part of this community for 16 years. What started as routine blood tests led first to a diagnosis of MGUS in 2003. Over the next two-and-a-half years, my diagnosis moved to smoldering myeloma.
Those first couple of years were stressful. I maintained a full patient load at my podiatry practice and kept my diagnosis from virtually everyone, including my three children.
In 2006, my numbers started increasing. Kate and I decided to tell the kids about my diagnosis. To this day, it was one of the hardest things we’ve ever had to do. When they entered the kitchen, I could already see on their faces that they knew something was very wrong.
That year I also suffered from excruciating lower back pain, and I entered a clinical trial. We also struggled with other illnesses in the family. I decided it was time to sell my podiatry practice-- a version of retirement before I expected it.
So 2006 was a tough year. But, looking back: It was the start of letting people in, of creating a new community, and learning even more about all of the other things I really enjoy in life.
Living Well, to me, has a few important characteristics. It means striving for a good quality of life, getting good rest and good exercise, and trying to be present and helpful to my wife and family.
Living Well with Myeloma has taught me to take almost nothing in day-to-day living for granted. The smell of an ocean breeze, the appearance of a threatening summer storm, and a beautiful orange pink sunset give me extra pause now, in appreciation.
I am a lucky man. I have gotten to see two of my children marry. We now have four grandchildren. We get to spend a lot of time with them, including trips to Disney World. We also take occasional snorkeling trips to St. John, go on other mini-vacations, and enjoy things closer to home like daily walks and exploring a great love for ceramics.
And then there’s singing. I have always loved to sing, and Kate takes credit for reintroducing me to my “Irish” musical roots. For many years home parties with an open mic had always given me an opportunity to sing to a captive audience.
In 2004 I cut a CD with my pianist partner, Joe Camardo, called “Finding the Irish Heart.” I started taking performing semi-seriously, with gigs at restaurants, church groups, and St. Patrick’s Day celebrations. Plus, singing the National Anthem at athletic events has always been fun.
Living Well with Myeloma makes me want to share my “living wellness” with others. So parlaying singing to support the IMF was a natural fit.
I created my first “A Song for Ireland” member fundraiser in 2008, and over the four years of that event, inviting everyone to a spring Irish party for a great cause became a very popular gathering.
Ocean swimming has also always been a great love of mine. I'm lucky enough to have a small home in Longport, New Jersey, one-and-a-half blocks from the ocean. Our little town has an annual event call the Captain Turner Swim. After a long-time relationship with the Life Guard Beach Patrol, I asked them if I could piggyback an IMF fundraising event onto their swim, and I was thrilled when they said yes.
Through these fundraisers, not only have we raised nice monetary donations for the IMF, but we have also raised awareness and created opportunities to support myeloma research. In fact, from these member fundraisers we’ve had the honor of funding two Brian D. Novis Research Grants, including one just last year.
I sincerely believe in “paying it forward,” and I do that through the IMF because it does an extraordinary job not only supporting research, but also in providing extremely valuable information and support to patients.
The IMF Hotline was our lifeline when I was first diagnosed. And Kate and I still never miss an east coast Patient & Family Seminar. We meet new friends at each one, and always get so much out of the newest updates in the field. All of the IMF’s web-based information and panels are also on the cutting edge.
Because of the amazing expansion of treatment options over the past 16 years, I stay informed, and that means that my relationship with my myeloma doctors has also grown over time.
I’m extremely grateful that my disease is stable, but I am still able to voice my concerns. We have an intimate relationship in discussing any side effects and discuss any new approaches or therapies in the pipeline.
My treatment regimens have evolved over the years. I’m presently on Revlimid, Ninlaro, and Empliciti
Wonderfully, compared to some previous treatments, I am sleeping better, have improved energy, and feel more even-tempered. In addition to the three-week cycles for the oral agents, I receive the Empliciti infusion once a month. Start to finish it takes about five hours, and that monthly appointment is easy to plan around.
I sincerely believe that my pro-active approach to my treatment over the years, coupled with my optimistic outlook, has done a great deal in providing me with stable disease and a good quality of life.
This coming year, my plan is to “take it easy,” because 2019 was a busy year. Among other things, I completed a children’s book called “Humpy Saves the Day.”
The book is inspired by a unique sea turtle we have observed for many years while snorkeling in St. John. “Humpy”-- as we call him-- has a malformation in his dorsal shell. He gets bullied and picked on, but his steadfastness and perseverance are key. Humpy becomes the hero despite his challenges and differences, and he keeps on swimming in his sea.
I think that is what Resilience is about: Steadfastness. “Staying with it.”
Resilience is finishing a one-mile ocean swim when you didn’t know if you had the lung capacity or endurance to do it.
It’s standing up in front of 5,000 basketball fans and singing the National Anthem with the composure to do your best.
It’s playing with my grandchildren on the beach: Building sandcastles, swinging the bat in wiffle ball games, and riding the ocean waves in our three-person rubber raft.
Resilience for me means pushing on. It means not disappointing yourself or those who count on you.
It also means letting those who count on you share in that resilience. I think about the dance lessons I took before our daughter’s wedding, and how I then got weak- kneed on the dance floor with her as my emotions flooded. And then the feeling as Bridget kind of held her Dad up.
I am the one with the diagnosis, but I never feel alone. I benefit from the brilliant minds who are involved in myeloma research. I get great care from my docs and unbelievable support from the IMF. I receive unending love from my family and my soulmate Kate, who gives me great hope and a desire to always live a full, enriched life.
To all of you, I say, from the bottom of my heart: Thank you!