Finding Community After A Myeloma Diagnosis: A Caregiver Story

When his wife Lou was diagnosed with multiple myeloma, David’s world stopped. At that time, the prognosis for multiple myeloma was three to five years, but they turned to the University of Kansas Cancer Center for treatment and faced each day together. Twelve years later, Lou and David are enjoying life with their family.

This month, HealthTree Foundation is sharing your stories of caregiving and celebrating caregivers for National Family Caregiver Month in November.

Finding world-class cancer care right around the corner

The days after the diagnosis were agony for both of us, but Lou immediately began researching the disease and scoping out the best doctors and hospitals for treatment. We were fortunate that we live in a large metropolitan area and that the University of Kansas (KU) Cancer Center was within driving distance. With her research, we discovered that KU Cancer Center had an excellent reputation as a center for treating blood cancers and has been designated as a National Cancer Institute-Designated Cancer Center. After Lou and I discussed our options, KU Hospital became the obvious choice. Both of us could continue teaching, and we could stay near family and friends.

Though I have been Lou’s primary care partner, I want to point out that Lou has had many care partners over the years, and we are very grateful to all the people who have offered to help. At the beginning of this journey, we found hope and solace in talking with others who were living with the disease. 

Finding community through support groups

The members of the Kansas City Area Myeloma Support Group were particularly important to us. A member of the group stepped forward to mentor Lou and help her understand better the disease and its treatment. When we were faced with making decisions about new medications, we could discuss the pros and cons with other members of the group. We continue to attend meetings and consider everyone to be important members of Lou’s support team. Other groups and individuals who have acted as support over the years include SparkCures, HealthTree, and the International Myeloma Foundation. Through example rather than just words, people have shown us how to live with the ups and downs of myeloma treatment. 

Lou has handled all the challenges of treatment without complaint and with quiet optimism. She has become an advocate for herself and acquired so much knowledge about myeloma and its treatment that she has become an integral member of her treatment team. Her research into the treatments for multiple myeloma and her conversations with others about the disease have helped her to act not only as an advocate for herself but as a helpful resource for others diagnosed with myeloma. 

She is a myeloma coach for HealthTree, a trained BMT mentor for others receiving stem cell transplants and CAR-Ts at KU, and a member of PIVOT, a group of cancer survivors who review papers submitted by doctors and other professionals working in the field of cancer research. Lou’s courage in the face of her diagnosis and willingness to reach out to others to provide help and resources have been an inspiration to everyone we know. She is a wonderful teacher, mother, grandmother, and wife, and I should not be surprised by how successful she has been in responding to this disease.

Finding strength together

Lou and I had been married for twenty-one years before her diagnosis. Because of her kindness, generosity, and joy of living, I have grown more deeply in love with her each passing day. We have shared all the joys and sorrows of married life, and through it all, we have become closer. It’s impossible to sum up a lifetime of marriage in a few sentences, but I can say that Lou is my heart and means more to me than I can ever say. I owe her so much for all the happiness she brings to my life.

Seeking out others for help, researching and learning as much as possible about one’s diagnosis, asking doctors pertinent and informed questions, and taking good notes during meetings with the treatment team are all important lessons we have learned over the years.  Also, seeking out advice to navigate the world of health insurance is crucial as well.  Lou and I have learned over the years that it is important to live with hope and that it is possible to do hard things, because all people suffering with MM and their caregivers know that we do hard things every day.

What I remember most over the years are the little things that are important to all married couples.  We have celebrated the marriage of our daughter, the high school graduations of three of our oldest grandchildren, and the birth of our fifth granddaughter, who will be turning five years old in December. We continue to travel and have been overseas to London just last fall.

These few words should not be seen as a conclusion to Lou’s journey with multiple myeloma, but as a summary of what she and I have successfully navigated for the past twelve years. During this time, we have attempted to live life as fully as possible, and I have no doubt that we have succeeded, and we are looking forward to sharing many more years of life together with family and friends. None of us knows what the future holds, but it’s my hope that Lou and I will continue to experience more joy than sorrow during the remainder of our lives.

Together, David and Lou have navigated twelve years of treatments, faith, and love, turning hardship into hope and advocacy for others facing blood cancer. If you are interested in participating in the HealthTree Coach program, click the button below to learn more about how you can join and find or provide peer support.

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