Myeloma, Party Of Two: Community

I am often surprised at the things that bring people together. Recently, I shared an article online about one of my favorite musicians, Elvis Costello. This sparked a conversation with fellow Beacon columnist, Nancy Shamanna, who also likes his music and wrote a column named after his song, “Watching the Detectives.”
She told me that she used to listen to that song over and over again before getting the results from her blood tests, thinking of the “detectives” in her blood that would indicate how she was doing with her myeloma. She then went on to tell me that Costello and his wife, jazz singer Diana Krall, were big fundraisers for multiple myeloma and had helped build the Krall Centre in Vancouver for stem cell transplants. Sadly, Krall’s mother was diagnosed with multiple myeloma in 1994 and passed away in 2002. This news really stunned me. I had no idea that Elvis Costello and Diana Krall had anything to do with the myeloma world.
I’ve loved Elvis Costello’s music for a long time. I’ve seen him numerous times in concert, with the first time being in the late eighties when I was in high school. I thought it almost surreal that even before I met my husband and Costello met his wife, I was in an audience watching him perform and neither of us knew what a role multiple myeloma would play in our respective lives. To be clear, I’ve never met Mr. Costello or Ms. Krall, but between the music – which is such a personal thing to share – and watching them give interviews on talk shows and such, I felt like I had a sense of their personalities.
After Nancy told me about their connection with multiple myeloma, I couldn’t get it out of my head. I just kept thinking about how we all share this “rare” thing in common, and how it made me feel like I somehow knew them better.
I remember when my husband Daniel was diagnosed with smoldering myeloma in 2012. I was told that it was a rare blood cancer. I had never heard of multiple myeloma, and I certainly had never met anyone who had been diagnosed with it. I remember feeling so isolated as I tried to explain it to our family and friends, most of whom did not understand why they weren’t treating it when they knew he had it inside of him. They had never heard of myeloma either, so it was a very foreign thing to us all.
Since then, myeloma doesn’t seem so rare to me anymore. I’ve met three different coworkers whose family members all had myeloma – one a brother in law, one a parent, and one a cousin. A friend at church works for one of the pharmaceutical companies that makes multiple myeloma drugs, and I sang in choir with a friend whose parent had multiple myeloma. I’d even be willing to bet that most of us took a collective breath when news anchorman Tom Brokaw announced that he was diagnosed with it in 2014.
After myeloma became a part of my vocabulary, I saw it everywhere. From millionaires like Sam Walton to vice presidential candidate Geraldine Ferraro, all the way to everyday people like you and me. Myeloma has made a community of us, albeit an unwilling one.
While it’s not the kind of “exclusive” club that you want to be in, I can’t help but be amazed at the inroads that multiple myeloma continues to make in my life. I’ve connected with many people whom I would never have had a reason to know, except that we’ve been brought together by multiple myeloma. I’ve met dedicated cancer researchers, and I’ve been inspired by patients who persevere in the face of ongoing treatments and complications. From all of them I’ve learned bits and pieces that have helped me feel more integrated in this community. And that is comforting, knowing that while myeloma is somewhat unique amongst cancers, we are not alone in living with it.
I’ve written before about something that one of doctors said to us after Daniel was first diagnosed. He said, “For you, this is going to be a marathon; not a sprint.” I had no idea at the time, but he couldn’t have been more right. It’s been over five years since Daniel was diagnosed with smoldering myeloma, and we are still running the course. With each lap around the track it seems that we grow our cheering section, coaches, and teammates. We run each lap hoping that we can make it around again without taking a time out for treatment. Sadly, as we’ve started running this race, we’ve lost many good folks along the way. Their memories are with us as we meet new patients and their families that are being added all the time. It’s a strange gathering for sure.
Therefore, it’s from this surreal stadium in my mind’s eye where I picture us all this evening. The bleachers are filled with everyone from Elvis Costello and Diana Krall to Tom Brokaw and you and me. We’re clapping and cheering, and we’re hoping for a cure. We are a community.
I wish you all well, and I pray that you’ll have many, many more laps around the track.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 after initially being told he had MGUS. You can view a list of her previously published columns here.
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I had heard of Diana Krall at a fundraiser, where she was the entertainment for the evening. I didn't know much about her, but a few years later I was cruising the channels when we used to have cable, and I found one of her live concerts and gave a listen. She is incredible!! Since then I have purchased a few of her CDs, and my husband and I went to one of her concerts for our anniversary. We got tickets for seats in the 4th row from the stage!! She and her group are absolutely amazing. She is so talented and beautiful and I just love watching and listening to her. I can only imagine how talented her and Elvis's sons are and will be. Enjoyed your column today. May your husband have many more laps around the track, too.
Thanks, Tabitha, for a column on community! It's a real coincidence that you are a fan of Elvis Costello, and I really like Diana Krall! We had seen her in concert twice, but this was before my myeloma diagnosis; saw her in Calgary and also in Honolulu! I was proud that she is a talented Canadian, and only later learned about her marriage to Elvis and also how they had been so supportive for myeloma treatment. As a music student and singer myself, I think I can appreciate how subtle jazz stylings can be!
Thanks, Tabitha, for a very uplifting column. You are so right about the multiple myeloma community and the closeness we feel towards others in this community. We have also discovered that friends and even some relatives have had multiple myeloma. Sadly, all of them were diagnosed long before we had the treatments that are available to us today.
Thank you all for your comments. Susan and Nancy, music plays a big part of life too. I have sung in choirs for years, and I used to be a classical voice major in college before I decided to change my major. If you like Diana Krall, then I think you'd love Jane Monheit. She is a velvety jazz vocalist who sings all the standards. Dan and I love her music, and we even got the chance to see her perform in New York City during Ella Fitzgerald Week. She's fantastic!
Patty, you're so right about the closeness we feel as a community - and noting that we have so many more drugs available to us now. This is such a difficult road. It's nice to feel the support of others as we travel it.
Wishing you all well -
Tabitha