Debbie Foley, a Long Term LMS Thriver,

At age 51 in June 2010, Debbie Foley, another extraordinary sarcoma thriver, was diagnosed with uterine lms. Debbie’s complaint was painful fibroids, and her doctor, Lisa Anderson M.D., recommended a full hysterectomy. No laproscopic surgery. No morcellation. Despite a disease that has metastasized, Debbie considers this decision a fortunate one.

For the next seven years Debbie received follow- up care and treatment for slow-growing nodules on her lungs from Dr. Spriggs at Memorial Sloan Kettering. From June – September 2010 she received four cycles of Gemcitabin/Taxotere. In October 2011 she received VATS, video-assisted thoracic surgery, a minimally invasive surgery of the chest, performed with a thoracoscope, or small videoscope using small incisions and special instruments to minimize trauma. Two nodules in her left lung were removed.

In the following year, 2012 Debbie felt well. She also married for the first time. Then came January 2013 when she had another VATS to address a new nodule in her left lung. The procedure was repeated one year later. Also in 2014 Debbie had 1/3 of her right femur resected; a rod was inserted from her hip to above the knee. Another “good year” followed, meaning no bad news and general good health, until February 2016 when Debbie’s left lung had to be ablated to address a new nodule.  A few months later she had another ablation for three nodules in her right lung, and in November Stereotactic Body Radiation Therapy (SBRT) to her T12 in her thoracic vertebrae.

Debbie’s treatments picked up pace in 2017 when she had three separate interventions: ablation for four nodules in her left lung, radiation to her left humerus, and radiation for a left upper-lobe nodule  Then, due to findings based on genomic testing, she entered Clinical trial PLX8394 in January 2018. She had to discontinue participation in April , however,  when a scan showed a 3.8 cm lesion in T12 and growth of lung nodules. In response she had five more radiation treatments to T12 in May 2018, which was followed by six treatments of doxorubicin/olaratumab. This protocol brought stability for three months.

Between December 2018 and May 2019 Debbie had more interventions: plates and screws inserted at her left humerus, five radiation treatments to her left acetabular, and one cycle of trabectedin, which was paused temporarily for a five hour surgery in June so that rods, plates and screws could be inserted at T12/T11 to support a crumbled vertebrae, caused by radiation. As of the end of June, Debbie is recovering from surgery and has three lung tumors greater than 2.5 cm and eight sub cm lesions.

When she reflects on the past decade and her numerous treatments and interventions, Debbie concludes that 2018-19 have been her hardest years, for though now living in Northern Virginia, for much of that time she was still being treated at MSK. The numerous trips to New York took a toll on her, and in March of 2019 she decided to make the switch to Johns Hopkins, where she received her most recent surgery.  Not only did the trips back and forth to NYC impact her physically, they ate into her precious vacation time, days and weeks that she wanted to spend traveling with her loved ones. Perhaps it is this attitude, as much as her longevity, that makes Debbie a thriver.

A self-declared pragmatist, Debbie listened – hard – to the advice that MSK’s Dr. Sprigg’s gave her early on: Live your Life.  And so she has.  She admits to having some scanxiety the day or two before her three month scans, but she deals with it, gets the test, and heads back to her work at the Department of Justice and to her life. She makes a conscious choice not to think about her disease until she has to, and she keeps her pragmatic and positive outlook close at hand.

Time for surgery?  I get to read a couple of good books and spend time cooking with my sister.

Can no longer run? Walk instead.

 Need another treatment? Put one foot in front of the other, take one day at a time, and count my blessings: health care; a sunny day; work that I enjoy; the support of the LMSDR Facebook group …

Other things that have helped Debbie cope are her loving and supportive husband, Larry, incredible sister Sue who is staying with her while she recovers from her recent surgery, friends, and family; her pragmatic mother who always counseled her to live her life and appreciate the day, the flowers, a good meal, the outdoors. And she makes sure she has something to look forward to, such as the NCAA final four that she and her husband go to every year and a trip to Canada for her 60th birthday. Debbie also meditates daily to help create the kind of day she wants.

 As for the future – hers and that of others with the disease – Debbie is hopeful. Why? There are new treatments all the time and patients are living longer and often with a better quality of life. In fact, she wants to share with others: You have to have hope.  Do what you enjoy doing. Be around people you love being around. Get together, share meals, appreciate each other’s company. And live the life in front of you.

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If you have survived LMS for 7 years or more, please email Sharon to share your story and pass the hope forward!