Willie Williams on a “medical expedition” to beat Synovial Sarcoma

Willie spends most of his time outdoors at work or play. Most of the last 25 years he has been fortunate to lead expeditions for the Nat’l Outdoor Leadership School (NOLS) around the world. Currently he works part-time for the Headlands Institute teaching environmental education to children.

He is applying the lessons learned in the wilderness to this new type of expedition. His passion for the ocean has taught him to work with the elements, no matter how kind or furious they might be. He embarked on his medical expedition in 2006 when he was diagnosed with synovial sarcoma on the right side of his heart.

He underwent open heart surgery in May of 2006 followed by 6 rounds of chemotherapy. Willie was looking forward to a summer in Alaska after his treatment but had to drop all his plans when he faced a recurrence of the disease in June 2007. A different chemotherapy helped shrink his tumors and surgeons at UCSF performed lung surgery to remove several small tumors in November 2007. His most recent scans show that the tumors have continued to grow – and Willie decided to switch to another chemotherapy regimen and is actively researching clinical trials.

Willie chose to celebrate hope and love by getting married at the end of June last year, to his sweetheart, Marisa. He met his soul mate a short time before his diagnosis and this common challenge has brought them even closer together. Marisa is his strongest advocate and supporter; a continuous pillar of strength. She and Willie are going through this as a team. They go on short outdoor vacations, play music together, and take every day as it comes.

Willie found it hard to ask for help – even harder to accept it. Throughout the medical expedition, he has opened up more fully to his family and community of friends. In doing so, he has experienced the gift of love, generous support, and a profound focus on life’s blessings. Maintaining a positive attitude and loving kindness, as much as possible, has been essential to his well being.

Understanding his emotions provided relief and allowed him to reconsider his body, not as an enemy, but as an ally he needed to help get rid of the sarcoma; it can be all too easy to view your own body negatively when you have cancer. Alternative therapies such as guided imagery, yoga and meditation, combined with good nutrition and exercise effectively supported him in this endeavor. Walks in nature, especially with Marisa, are usually a daily ritual.

Networking and communication are key to Willie’s success; especially with sarcoma resources so scarce. He never made assumptions and constantly challenged his medical team with questions, and paid close attention to their recommendations. “Knowing thy enemy” is a motto that he practices to near perfection, even catching erroneous advice coming from physicians. Marisa and Willie asked friends to help them with pieces of the huge amounts of research required to make informed decisions.

Finally, Willie is spending more and more time providing service to others. He participates in a sea kayaking program in San Francisco for people with disabilities. Cancer had not taken him down. On the contrary, it empowered him to help others. “I like to feel like a normal person when I can” says Willie.

Willie is meeting sarcoma on his terms and is an inspiration to all. To other sarcoma patients, Willie says “Be kind to yourself and forgiving. Enjoy life and focus on the blessings of every moment.”

[Addendum Fall 2008 - Willie passed away from Synovial Sarcoma in the summer of 2008]