Myeloma, Party Of Two: The Caregiver’s Tune
Recently I saw an advertisement that discussed the importance of “integrative medicine” as an approach to the treatment of cancer. It advocated a mind-body-spirit approach to treatment that includes meditation, nutrition, and alternative therapies as well as the traditional medicines.
It seems that this approach has gained steam in recent years. When my mother was being treated for ovarian cancer in the 1990s, her treatment options were very different than my husband’s options are today. At his cancer research hospital, I was surprised to find that they offered music therapy to patients. They use music therapy for teaching imagery and relaxation techniques to patients as another tool in the total approach to healing.
According to the American Music Therapy Association, “Music is used in general hospitals to: alleviate pain in conjunction with anesthesia or pain medication; elevate patients' mood and counteract depression; promote movement for physical rehabilitation; calm or sedate, often to induce sleep; counteract apprehension or fear; and lessen muscle tension for the purpose of relaxation, including the autonomic nervous system.”
It makes sense to me that music has these benefits. I studied classical voice in both a performing arts high school and a college conservatory, sang in choirs and theater productions my whole life, and I’ve turned many hairbrushes into microphones. And while the news that music was a supportive cancer therapy was new to me, I thought that science has legitimized something that I have always felt: for people like me, music is very powerful form of catharsis, coping, and expression.
Truthfully, music has underscored the most memorable moments of my life. It seems that the greatest (and the worst) moments of my life have always been set to moment-defining, lyrical music.
I remember this one time I was at a friend’s apartment when such a moment occurred. I heard this soft, beautiful music coming from the other room. Sitting on the floor by the stereo was a contemplative, handsome young man listening to “Lilac Wine” by Jeff Buckley. He was softly singing along to himself as he read the CD dust jacket, completely absorbed in the lyrics and unaware that anyone was watching him.
The song was a poignant and soulful tune, and watching this young man made it clear that he thought so too. I had never heard of the artist before, a troubadour in the Greenwich Village tradition, but the song was so lyrical and sad – and the young man appreciated it in a way that conveyed something personal about him.
It was an honest, private moment that I wasn’t meant to see – and it occurred without artifice or ego. As I watched him and listened, I knew not how, or why, or where it would lead, but I knew something was different with this young man. I felt akin to him somehow.
We were married a year and a half later. I still love that song to this day, and even more so because of the powerful feelings and memories that it has for me.
Music was also there for me when my husband was diagnosed with smoldering myeloma. We were in shock – but we coped as well as we could. He would tell me that it was going to be okay. And I told him the same thing. We clasped hands and became a brave, united front against cancer.
But honestly, there were times when I couldn’t be brave, times when I just wanted to be human.
When it all was too much, one particular song afforded me what I didn’t want to voice to anyone else. It gave me a safe place to express my feelings. That song allowed me to be the real me – a wife scared of losing her husband, not a super-caregiver complete with a cape and psychological armor, impervious to the shocks of bone marrow cancer. It was an outlet for my thoughts and worries, and it gave me the strength to pick myself up each day, keep my fears at bay, and focus on my husband. That was some serious music therapy for me.
The song was called “The Light” by Sara Bareilles. The lines held special meaning for me: “And if you say we'll be alright, I'm gonna trust you, babe. I'm gonna look in your eyes. And if you say we'll be alright, I'll follow you into the light.” It allowed me to put the pause button on fear and embrace hope.
I’m a caregiver going on two years now, and I’ve learned something very important: myeloma is a marathon, not a sprint. For me, I need a soundtrack for our journey. I still use it to help me cope with the stresses of uncertainty. When I’m alone, I’ll play music and voice the thoughts and feelings of my heart. I’ll sing in the shower, when I’m alone in the car, or to help me evoke the feelings that I express in my columns.
Some people don’t feel comforted by music, and that’s completely understandable. I wouldn’t be consoled by yoga or the thought of running a marathon. The important thing for caregivers (and patients, too) is that you use your favorite tools to find your center and recharge your batteries. The truth is, the road is long and our journey demands the best from us.
As you might guess, I wouldn’t be able to end this article without a song. Caretakers, I hope that it resonates with you. It’s an old English folk song with roots that date back to the Renaissance. It’s called “The Water is Wide”, and, for me, it voices the mantra of the caretaker. It speaks of steadfastness and love, and it’s not only the message from one wife to her husband, but for all caregivers to their patients.
The water is wide, I cannot get o'er
And neither have I wings to fly,
Build me a boat that can carry two
And both shall I row, my love and I.
Our love shines clearly against the storm,
Turns darkest night to brightest day,
Turns turbulent waters to perfect calm,
A blazing lamp to light our way.
Love is the centre of all we see,
Love is the jewel that guides us true,
No matter what, love, you'll stay with me,
No matter what, my love, I'll stay with you.
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.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at
Thanks for the beautiful column, Tabitha! Music has helped me and my family over the sometimes rough waters too! I know the song 'The Water is Wide' well. The gentle ballad is one of the most lyric British folksongs. It is in my 'Joan Baez Songbook', which I have had since I was in high school. We also have sung this song at the multi-cultural choir I am in. Best wishes to you and Daniel, and hope all is going well with you.
As someone trained in music, I'm a bit surprised you were unaware there are music therapy programs at colleges and universities. As the AMTA website notes, "Michigan State University established the first academic program in music therapy (1944) and other universities followed suit, including the University of Kansas, Chicago Musical College, College of the Pacific, and Alverno College."
One song I always find comforting is "Lift the Wings:"
How can the small flowers grow if the wild wind blows,
And the cold snow is all around.
And where will the frail birds fly if their homes on high
Have been torn down to the ground.
Lift the Wings, and carry me away from here
And fill the sails that breaks the line to dawn.
But when I'm miles and miles apart from you,
I'm beside you when I think of you, a stoirin gra.
How can a tree stand tall if the rain won't fall,
to wash its branches down.
And how can the heart survive? Can it stay alive
If its loves denied for long.
Lift the Wings that carry me away from here
And fill the sail that breaks the line to home.
But when I'm miles and miles apart from you,
I'm beside you when I think of you, a stoirin,
and I'm with you as I dream of you, a stoirin,
and the sun will bring me near to you, a stoirin a gra.
(a stoirin, a gra is a Celtic term of endearment generally meaning, my treasure, my love, my darling, etc.)
Wonderful column Tabitha! Music matters much more than many people realize. It happens to me all the time that I hear a song, and it's almost like a time machine. Memories from the period in my life when I would hear the song regularly coming rushing back, and it's like I'm transported back to that point in time.
One thing that I don't think people realize is that music can create emotional cycles which, if we're not careful, can be bad as well as good. If we're in a melancholy mood, we may choose to listen to music that is more "mellow", when it might be better for us to listen to something more upbeat.
Pusser - I didn't interpret what Tabitha the same way you did. Unless I missed something in her article, Tabitha never claimed that music therapy programs in universities are a new thing. She just said that, in the 20 years since her mother had cancer, it seems like music therapy has become something that is offered more regularly at cancer centers.
Music stirs the soul, a part of our being that resides in our brain that we do not use enough. It can cause chemistry changes in our body, as secreting organs like the liver, thyroid, kidneys, react to the stimulus the music provides thru our auditory sense, directly to our soul.
Many Alzheimer's patients are treated with music therapy with unbelievable affects on their lost recall abilities. I have personally seen this with my own relatives afflicted with Alzheimer's. Music stirs a part of the brain in unbelievable ways.
For me, when I am feeling blue, I listen to Blues music, mainly Chicago, and New Orleans based. It makes me realize I don't have it so bad with myeloma. I have a loving, caring wife, family and group of friends that keep me going with encouragement, discipline to keep up with my nutritional, naturopathic and traditional medicine regimen. I have always loved blues and rock music, even as a high schooler playing in a blues band with my friends. Even then the sad songs made me feel blessed not to be in situations that song writers write about, sharing their deepest emotion and raw wounds.
Don't get me wrong. Blues can cause the tear machinery to crank up, but for me this is therapeutic and I feel much better after a soak in a hot tub and 45 minutes of my Blues favorites, Joe Bonanassa, Paul Butterfield, Jack Dekeyser. Music stimulates our body chemistry for the good, so use it as part of the myeloma treatment.
Thanks for your discussion on music as therapy,
Tabitha, thank you for expressing very well the feelings of a caretaker for her husband on this journey called multiple myeloma. I had not heard the song "The Water is Wide" before and Googled it. I found this beautiful rendition on Youtube by James Taylor. Here is the link and I hope others will take a moment to listen to this beautiful ballad. http://www.youtube.com/watch?v=opfEk_Yoksk
Just listened to James Taylor sing "the Water is Wide" and cried. That's ok, it was my therapy. Letting out all the tears I hold in when I am in my daughter's presence as she fights this myeloma disease. One of the hardest parts of being a caregiver is being positive and controlling your emotions around the person suffering the disease. To not let them see how afraid you are. I enjoy music, and it helps many, but my choice of escape is reading, which takes me to another place.
Tabitha, this was an amazing expression of strength for everyone who reads it. Music is the language of the soul for many of us, and has and will continue to provide strength and calming for all of us. Your writing this month was beautiful, Mom
Once again, you have impressed us with your ability to put what we feel in our heart into words. Thank you, Tabitha, for another well written and thought provoking article.
Understood, Cheryl. I read that she said that with her extensive musical training she wasn't aware of music therapy as an option. As someone who attended music school in the '70s, I was aware of music therapy education (no real jobs -- just education), along with horticulture therapy, animal therapy, etc. Those jobs are still pretty few and highly specialized, and frankly, the science is pretty soft (one person's soothing music is an irritant to another patient). I'm sorry if I misinterpreted what she said. "Music has charms to soothe a savage breast" is a quote from 300 years ago, and music has long been used in therapeutic settings.
Friends,
Thank you for your kind comments. It's so rewarding to know that we are never alone as we struggle to find our place along this journey, whether patient or caregiver, mother or child, husband or wife. How reassuring to know that love, and perhaps expression through music, can bind us together as we muddle along.
Pusser, the lyrics to Lift the Wings are beautiful. I look forward to listening to the music.
Cheryl G, I can relate when you say that music can be bad or good! There have been times when I've not been sure where my "therapy" was taking me. While I try to be mindful of how much "self expression" (or wallowing, in some cases) that I allow, I temper things by trying to keep my husband at the center of all that I do, being mindful that this is about his journey, and my love for him that determine my actions. It's not easy, but love and my musical outlets give me strength that provides the right mixture of venting and caretaking. Thank goodness they're there!
Eric, you seem to have an old musical soul! Your descriptions inspire me. Just this past weekend my husband and I were in Austin, TX where we were able to takes in a couple of concerts, including a blues show. Thank you for reminding us that an outlet is a coping mechanism, and a very real need -whether you're receiving the care giving or giving it.
Patrice, Thank you for sharing the link. I like James Taylor, and I look forward to hearing this version of the song. There are several versions of the lyrics out there, but I was intrigued by Eva Cassidy's version, which provided the inspiration for this column. She has a beautiful, clear voice, and while her lyrics are slightly different, I was moved by the fact that she passed away from melanoma in 1996 at the age of 33. I would like to believe that when she recorded "The Water is Wide" that she was leaving us a message to support one another.
TJ13, I am so sorry that your daughter is going through this. I absolutely agree that the one of "hardest parts of being a caregiver is being positive and controlling your emotions around the person suffering the disease." We take it day by day, relying upon the gifts we have been given, and looking to that which is beyond us for what we need (to be more than what we are). I hope that music can be of solace to you, and that you realize how strong you are. I have no doubt that your daughter is grateful for it.
Sharon and Sandra, while we are on this awful journey together. I thank God for you, and I love you both.
Thank you so much for your comments, Nancy! I figured that you might know the "Water is Wide." Whenever I hear this tune, I think of you and our multiple myeloma family, spread out all over the world, but brought together by the Myeloma Beacon and shared experiences. If I'm ever up in your neck of the woods, I'll send you a line for sure. I'd love to buy you a cup of coffee!
Keep strong like bull! Here's to good health!
Tabitha
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