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Living with Multiple Myeloma

Chuck Koval was diagnosed with multiple myeloma more than ten years ago. Since his retirement, he has devoted his time to patient advocacy issues. He shares his unique perspective on living with illness.

 

 

Chuck KovalA little over ten years ago I was diagnosed with multiple myeloma. I was informed that it is an incurable cancer of the bone marrow and the median longevity is 30–36 months.

 

I never heard of multiple myeloma prior to my own diagnosis. As with many others hearing they have cancer, our immediate thoughts are laden with the negative.

 

After a few days of reflection I began to think about the meaning of the word median, and that the actual number pertains to no one, it is merely a statistical figure based on the available data. Therefore, many patients with a cancer diagnosis live well beyond the data point - an option I elected to pursue with considerable vigor.

 

First, I was at the UW Comprehensive Cancer Center at the University of Wisconsin Hospital and Clinics. The medical talent, access to a medical library and the internet provided access to the available knowledge about multiple myeloma. I found information that offered hope in the management of my cancer.

 

I found strength in my own religious and spiritual background fortified to a higher level by family and friends. Another source of positive reinforcement was the formation of the first multiple myeloma support group in Wisconsin started in September of 1999 with two other patients. The support group continues to be an important connection for many patients.

 

A monthly newsletter started at the same time provided brief summaries of research that offered additional hope for patients. I found writing the newsletter to be time consuming, but energizing. I have now turned my attention to other pursuits relating to myeloma management and cancer research.

 

My more than ten years has strengthened me as a person. I have learned to look to the future when making treatment decisions, only after thoroughly weighing the available information and sharing my thoughts with my doctor. I have found that education about the disease together with how the disease is affecting you personally is critical in the decision making process.

 

In this month of Thanksgiving, and everyday, I give thanks for being able to enjoy an excellent quality of life. The confidence I experience working with the medical staff at UW Hospital and Clinics, the support of family and friends, and the hope of new treatment options through ongoing research provide considerable reason for optimism for me and all myeloma patients.

 

About Chuck Koval

 

Chuck (pictured above) is a native Wisconsinite. Reared on a dairy farm in Bayfield County, Chuck graduated from Northland College in Ashland, Wisconsin. After completing graduate work at the University of Wisconsin he joined the UW faculty.

 

His thirty-year career included research, teaching, extension, and administration. Since retirement Chuck has devoted time to patient advocacy issues with emphasis on multiple myeloma. He also is a FDA Patient Advocate, NCI member of CARRA and a patient advocate for the UW Paul P. Carbone Comprehensive Cancer Center.

 

Chuck and his wife Pat live in Madison. They have three children and nine grandchildren to occupy the remaining retirement time.