Eleanor:  Nine Years with Leiomyosarcoma and Still Grateful

10/22/18  by Kathy Franklin

Eleanor at 72 is a pillar of gratitude and positivity.

Leiomyosarcoma (LMS) treatments are focused on helping patients have a better quality of life, longer. However, sometimes the treatments themselves are debilitating. Eleanor is disabled after ten surgeries and chemotherapy. Yet she thrives, describing herself as a grateful survivor who is glad to be alive to enjoy her circle of supportive family and friends.

She credits the connection with other patients through the Leiomyosarcoma Support and Direct Research Foundation (LMSDR) Facebook pagewith her survivorship. Recalling the openness with which other LMS survivors share their fears, successes, failures, and strategies, she declares, “It has brought me into a network of our sarcoma warriors and broken down my ignorance. The group has certainly lifted me out of my isolating fear and extended my life. I am so grateful to the administration and members.”

Without a doubt, LMS often brings about sweeping life changes for those bearing the diagnosis.

Before she was diagnosed, Eleanor was the busy 62-year-old CEO of a multi-million-dollar family business who traveled extensively both for work and pleasure. She managed the twelve-acre farm that she shared with her husband of fifty years, Joe. She managed his chronic illness. In her spare time, she trained and competed in bicycle marathons and enjoyed swimming.

Today, Eleanor rests or sleeps for twelve hours a day, and faces chronic exhaustion, all of which contribute to isolation despite the loving care and attention of Joe, daughters Eleanor and Claire, and friends. Although she must conserve energy for its best uses in fighting LMS and the effects of treatment, she helps with a few light household chores around their downsized Maryland home, and shopping.

Indeed, leiomyosarcoma is a frightening and impactful diagnosis. But survival statistics are improving because of increased research thanks to the awareness efforts of the Leiomyosarcoma Support and Direct Research Foundation. Eleanor recalls that she met her diagnosis with “absolute terror and certainty that I would die in excruciating pain.”

The nature of LMS is to disappear for a while then show up with no warning.  So it has happened to Eleanor. Currently, she awaits radiotherapy for nodules in her lungs. Yet, while she grieves the resurgence of the disease, as well as her lost vitality, the active life that was, and a head full of gorgeous red hair, Eleanor hails her good fortune to be a survivor.

“Life is too beautiful. I am not ready to die!” she exclaims then notes the loving accommodation of her needs by family and friends along with the unconditional love of her four cats. Adding to her zest for life and will to live, is anticipation of a beautiful flower garden Joe is having made for her enjoyment. She truly practices life one moment at a time.

There is however, something Eleanor would like people to know about leiomyosarcoma: “Although we patients generally look healthy, not wasted and skeletal like a stereotypical cancer victim, we are still very ill and require all kinds of support – mental, medical, spiritual, and physical. Help us keep laughing.”

Eleanor sadly lost her battle with leiomyosarcoma on August 24, 2020.

Her daughter wrote in her obituary:  “She made an impression wherever she went with her infectious warmth and her zest for life. We would all be better to be a bit like her. Throw caution to the wind today and do something really fun. Ruin a meal, eat some candy, spoil your children and even sink a boat (yes, Eleanor’s antics included sinking two boats so the bar is high).”