Profiles of Patient and Family Advisors and Leaders
Patient Advocate and Leader: Winthrop (Win) M. Hodges
Looking back, Win's 1993 rollerblading accident turned out to be a blessing in disguise. He went to Massachusetts General Hospital for treatment of what turned out to be a broken jaw and six broken ribs. The results of the chest x-ray - initially performed because of his broken ribs - revealed a possible mass in his lung. Further tests that week resulted in a diagnosis, on Win's 53rd birthday, of adenocarcinoma (non-small cell cancer) in his right lung. Win's initial surgery, scheduled to last 6-8 hours, was over in two hours because the lymph nodes showed that the cancer had metastasized.
Given the diagnosis of Stage 3 lung cancer, Win - who lost his best friend to lung cancer at age 36 - was determined to beat the odds and survive. Being fit and in good health, he was able to qualify for the most aggressive treatment protocol available. He was cared for by the radiation oncologist in charge of the protocol and a medical oncologist with strong communication and people skills. Win's consultation with the Dana-Farber Cancer Institute re-affirmed his treatment plan. Within six months of diagnosis, Win had two surgeries and three rounds of intensive radiation and chemotherapy at Massachusetts General Hospital.
Win and his wife, Margie, also met with an ECaP / (Extraordinary Cancer Patient) counselor, with whom he discussed his goals. Initially, Win wanted to prevent a recurrence of the cancer. With the counselor's guidance - because if the cancer returned he would have not achieved his goal - Win instead decided to focus on the quality rather than the length of his life. Then, no matter how much time he had left to live, he would have won by achieving his goal.
In taking on the challenge to survive advanced lung cancer, Win embraced a multi-dimensional approach, and - leaving no stone unturned - changed his life:
- Win practiced meditation, with the help of a coach, for at least an hour every day, and continues to use relaxation techniques as needed.
- He read about cancer and survival. Love, Medicine and Miracles: Lessons Learned about Self-Healing from a Surgeon's Experience with Exceptional Patients by Bernie S. Siegel, MD had a great impact on him and influenced how he proceeded with his treatment.
- Prior to his surgery, Win spoke with the surgeon about his desire for a positive atmosphere in the operating room (no jokes or negative comments by the surgical team), which the surgeon supported.
- Win collected items of meaning to him, and, with the surgeon's understanding, had those items with him in the operating room during surgery.
- Win found the sound of a babbling brook - resembling that in a Japanese tea garden in which he liked to meditate - particularly soothing to him. With the surgeon's agreement, Win had an audiotape of the sound of a mountain stream playing during his surgery.
- He adopted the basic principle, which he later discovered was from Tai Chi, to relax when receiving the treatments, and then to be as aggressive as possible during the recovery.
- He continued to work professionally during his treatment with the support of his manager.
- While in the hospital, his wife or one of his daughters stayed with him so he was never alone while awake. He decided not to have social visitors during that time, as he was "concentrating on his battle" but his friends and colleagues were very supportive and sent wonderful cards.
Over a decade later, Win views cancer as a gift that taught him a tremendous amount, helping him to survive. Win admits that, as a very active person, he had great difficulty going from a "human doing" to a "human being." He had to learn to live and experience life - in the moment - fully. Win says he never felt so alive as during the time he had cancer. Win has a sense of how much the cancer experience meant to him, and, because he doesn't want to lose the lesson, he struggles to be mindful and "keep the cancer in front" of him.
From Cancer Patient to Patient Advocate and Leader
Support Group. Following his successful cancer treatment, Win began doing volunteer work. He started a support group at his office for people who had cancer or who were caregivers to those with cancer. The group provided a safe environment to process all sorts of issues, including those related to work.
Massachusetts General Hospital Cancer Center. Win participates in a matching program at the Cancer Center in which he speaks to newly diagnosed lung cancer patients. Twice he co-chaired Survivorship Day programs at the Massachusetts General Cancer Center and is a writer/editor for SUPPORT, a quarterly publication by and for patients and their families. In 2001, Win became a member of the Cancer Center's Patient and Family Advisory Council, and he continues in that capacity today. Representing the Patient and Family Advisory Council, Win participates in orientation meetings for new Cancer Center employees. He was a survivor participant in the Cancer Center 2002 welcome video for new patients and new employees, and spoke at the Cancer Center celebration acknowledging dedication of staff. In 2005, he was a participant in the Rounding Pilot, visiting cancer patients in waiting rooms and infusion units to obtain feedback and provide support. As a part of his work with the Advisory Council, Win became familiar with the Institute for Patient- and Family-Centered Care, and has attended and presented at the Institute's International Conferences.
The Kenneth B. Schwartz Center. In 1999, Win started to work with The Kenneth B. Schwartz Center, which works to strengthen the patient-caregiver relationship by promoting health care that values communication skills and interpersonal sensitivity. A sampling of Win's roles include:
- Charter member of the Review Committee for the Compassionate Caregiver Award.
- Facilitator for the Schwartz Center Rounds, presented in various hospitals, which offer a forum for health care providers to discuss emotionally difficult situations.
- Member of the committee to develop a new Schwartz Center patient-centered program.
Retirement. In 2003, Win retired from his professional career in communications and expanded his volunteer activities, about which he is passionate. He finds this new "work" to be challenging and very exciting. Some of his additional volunteer activities include:
The Wellness Community of Greater Boston. Win is a member of the Lung Cancer Networking Group and the Survivorship Networking Group. He also participates in the education of Harvard medical students by role-playing as a patient receiving a cancer diagnosis.
Win is on the Steering Committee and the Core Design Team for the Ambulatory Practice of the Future Team for Internal Medicine at Massachusetts General Hospital. He serves on the Board of Directors for The Moon Balloon Project, Inc. , which brings hope and healing through art for children with cancer and other life threatening diseases. Additionally he has been a patient participant for the Cancer Survivorship: Pathways to Health after Treatment: Survivor-Researcher Mentorship Program sponsored by National Cancer Institute, American Cancer Society, and the Lance Armstrong Foundation.
Win, born and raised in New York City, received his AB degree in history from Princeton University. In the 1960s, he served in the Marine Corps Reserve. Win worked in book production and editorial management for Doubleday, Macmillan, and Little Brown publishers for 22 years. He spent the next 18 years in financial services communications working for New England Financial and MetLife. Win lives in Massachusetts with Margie, his wife of 42 years, who is also a cancer survivor. Win and Margie are very grateful that their two daughters and their families, including 3 grandchildren, live close by. Win and Margie have shared wonderful times traveling in Canada, Britain, and Europe. Win, an avid history buff, walks daily, often with his daughter's dog, and enjoys recreational kayaking and skeet shooting.