Inspirational Stories

I was diagnosed in 2009 with chronic lymphocytic leukemia (CLL). Upon diagnosis, perhaps the greatest shock was becoming aware that I knew so little about cancer, so little about the medical system, and how one needs to go about a process of self-education regarding their disease.

My diagnosis occurred at the Simon Cancer Center, a part of the Indiana University Health System. I was fortunate to have a neighbor who is a nurse practitioner at this cancer center. She intervened when she found out that a routine shoulder MRI revealed multiple enlarged lymph nodes.

She arranged a biopsy and an appointment with a young doctor who was just finishing his fellowship with a specialty in CLL. He was the only CLL specialist in Indiana. He would share that it might be a long time before any treatment was needed (despite my poor genetics), and he charged me with the mission to “go out and live your life!”

In October at my second appointment, I brought three enormous dahlia bouquets I grew to his office ― one for him, one for his nurse, and one for the staff. I was doing what he told me to do regarding living my life. It must have made an impression on him because at the next appointment he asked a favor of me.

A patient of his had died of CLL and on his deathbed had asked my doctor to start a support group for blood cancer patients. The patient felt that he and his wife had struggled in their cancer journey with no one to share advice, support, and empathy. My doctor wanted me to be the patient facilitator. I agreed, and in 2010 the group was launched. We had a small group for about a year and a half, and then one of the members died.

I suddenly realized that I was totally unqualified to do this job. I had no counseling background, no medical background, and no social work background. I truly needed resources for all types of credible information to support and be responsible to these patients. I went looking, and I found The Leukemia & Lymphoma Society (LLS) online, then visited their office. It changed my life forever.

LLS’s resource-rich offerings were the blessing and education I needed. The support group would grow and flourish, and at this point, more than 125 meetings over 11 years have been conducted. LLS played a large part in this success.

Eventually, I began to volunteer at LLS and would make follow-up calls to individuals who had received a $100 stipend from LLS. I was finding out if these patients needed additional support and resources. The executive director of the Indiana LLS Chapter had been actively recruiting me for a board position. I had been refusing until I witnessed more examples of the organization’s services for patients firsthand.

Then one day during my phone calls, I reached a woman who was just leaving a local hospital. She and her husband were leaving following a transplant surgery he had needed. The result had been that due to several months of unemployment, they had lost their small business. They were going home to sell all of their belongings on eBay starting that day in order to pay for their health insurance and bills. I took down all of her information and shared it with the LLS staff. Within a week, thousands of dollars had been directed their way from LLS. I would walk into the LLS executive director’s office and tell her I was “all in.”

I served on the board for seven years during which I was the vice-chair for two years and chair of the board for another two years. But here is what was special ― my association with LLS was over a total of eleven years. In all of those years of constant contact, LLS never once failed to fulfill its promise. Never once.

One of the gifts that LLS would give back to me would be the knowledge that would enable me to find a clinical trial that has prolonged my life for eight years. The trial was made available to me through an LLS-funded doctor and researcher who does his work at a Specialized Center for Research that LLS also funds.

In the LLS region, with pride and integrity, we raised millions of dollars that we know saved lives through research, we helped direct and advise those in need in our community, and we connected patients lost in the world of cancer like a signpost to resources, some connections which I know for a fact saved lives.

Please know that if you are looking for a way to add purposeful meaning to your life ― LLS could perhaps open these doors for your spirit. They certainly did for me.