Deb's Story

I believe that I am alive today because of the Leiomyosarcoma Advocacy personnel and fellow leiomyosarcoma patients. I was diagnosed with uterine leiomyosarcoma following a Christmas Eve 1997 morcellation hysterectomy as an outpatient with a local anesthetic. I was an executive at a Fortune 500 corporation and I was too busy at work to be sick. At 30 years out, I am the longest uterine leiomyosarcoma survivor in the world. My rare cancer is deadly: Washington State Lieutenant Governor Cyrus Habib's father, Mo Habib, also had leiomyosarcoma. Mo's leiomyosarcoma returned after 37 years and killed him. I am a close friend of Susan Amini, Mo's widow. Susan has been a Superior Court Judge in King County, we have much in common and continue to comfort each other. In December 2018, I was diagnosed with my first melanoma; I have subsequently had more melanomas located and I have had nine surgeries to date. I receive my care at Memorial Sloan Kettering Cancer Center in New York City.

I know this will sound strange, but to me, my beloved husband's death on July 22, 2006 at age 53 was far worse than any cancer. With cancer, we have hope. No hope exists when your loved one has a fatal heart attack that potentially could have been averted; more about that in the attached Medical Society publication. Here is the link to the memorial to my beloved husband on our 30th anniversary: https://archive.kitsapsun.com/lifestyle/celebrations/stephen-a-gates-md-of-poulsbo-ep-420357556-357884841.html (opens in a new tab)

After my husband's death, I wished for death so I might join him in heaven. I stopped using seat belts in cars. I was so depressed that my weight dropped to 115 pounds (I stand 5 feet 9 inches tall in my stocking feet.) On November 30, 2006, my husband's 54th birthday, four months after his death, I had an afternoon doctor's appointment. The doctor had a standard list of questions, and I checked the box " yes" I am suicidal. Yes, I have plans and yes, I own guns. The doctor became very upset--not because she was worried about me but because she now had various obligations under Washington State law. She violated those obligations because she said she needed to make dinner for herself and she sent me out the door. I have no idea how I drove home from the doctor's office in Bremerton to my home fifty miles away, but I did. My two collie dogs knew something was up and they flopped on top of me and next to me. It truly was the day from hell, just one day in a continued year of hell. I have no idea how I survived that time. I do know that I slept most of the time, I really wanted to die but I was worried that my dogs would have no one to take care of them.

When my husband's second birthday in heaven approached, I began to have panic and anxiety attacks. My doctor upped my antidepressant prescriptions. At the local Post Office, I noticed a poster announcing that the Seattle Marathon would be held on November 30, 2007, it was always held on the Sunday after Thanksgiving. The 2007 Seattle Marathon was scheduled for the day of my husband's 55th birthday in heaven and I was determined to not repeat the profound grief and depression that I experienced on November 30, 2006, his first birthday in heaven (he died on July 22, 2006 at the age of 53 years old.) Before dawn on Seattle Marathon Day, I met other women cancer survivors near the starting line. Our trainer has advised all of us to wear a huge plastic garbage bag over our many layers of running clothes. A local sports shop had prepared a banner for me that I wore on my back "In memory of Steve Gates, MD, 1952 to 2006.") I remember the sheer wonder of running and running and the fog and depression lifting here and there and I noticed the sun. I don't know whether it was the endorphins kicking in or the bracing cold of a November 30 day (clear and cold, no snow, no sleet...sleet and high winds would happen three years later) or the amazing companionship of the fellow cancer survivors, I don't know why but the world had tilted on its axis for me.

We cancer survivors know loss and the women cancer survivors running with me were incredibly comforting. Our trainer Monica was a rock star. She met all of us when we reached the bottom of the last hill and she encouraged us and ran with us up the hill. But whatever happened on November 30, 2007, the Seattle Marathon saved my life. Instead of looking forward to death, I turned to life. As I began my journey to life, it was the fellow cancer survivors who held my hand, who whispered hope in my ear. I trained for and completed the Danskin (and successor organizations) Triathlon in 2008, 2009, 2010, 2011, 2012, 2013 and beyond; bicycle rides with the Starbucks Racing team, including the Lance Armstrong Livestrong ride leaving from Nike Headquarters (Lance Armstrong stopped by the cancer survivors' tent to motivate us) the Trek Triathlons, the Rainman Triathlons (Greenlake), the Seattle Rock and Roll Marathon, the Tri Turtle Tri triathlons in Seabeck, WA. One summer I completed the Seattle Danskin triathlon in July and in September I flew to New York City and completed the NY Metro Danskin triathlon. I organized family relay teams for the NY metro Danskin triathlon: My 80 year old mother (3 time cancer survivor), a beloved cousin and myself were one team. We narrowly missed winning the Survivor Relay Team trophies; a trio of sisters in their thirties took first place (one sister was a breast cancer survivor.) Without fail, I was part of the cancer survivors' Seattle Marathon team. My speed improved and I always wore the banner in memory of my husband. With fellow cancer survivors propping me up, I found myself running full bore towards life . .

“the Seattle Marathon saved my life”

I was able to successfully advocate for changes to Washington State law that made hospitals safer for patients, staff and the public. Had these changes been in effect in 2006, my husband might have been resuscitated from his heart attack, he might have lived. You can read about my advocacy in the article: "One Person Can Make A Difference" that begins on page 8 of the Communique, the magazine of the Kitsap County Medical Society.

I remain very grateful to the physician groups, medical societies, individual physicians, Washington State Nurses Association, individual nurses and medical assistants, the Association of Handicapped Personnel and individual disabled persons and the Retirees Associations and retired individuals that provided support throughout my advocacy journey. These groups and individuals were of enormous help by writing letters, submitting signed petitions, undertaking repeated phone calls, writing state legislators and policy makers and otherwise supporting me through the process of obtaining Washington State's formal adoption of the National Hospital Safety Construction Standards set by the Facilities Guidelines Institute of the American Institute of Architects. I attended multiple public hearings and public hearings and I cried at every single one. In 2008, the State of Washington, for the first time ever, adopted the National Hospital Safety Construction Standards, these standards required emergency pull cords in every hospital bathroom that a patient might access; the Standards also required many additional safety improvements to Washington State hospitals. In 2010, I was able to successfully advocate for additional hospital safety rules--Washington State is now second to only Connecticut. I am presently advocating at the federal level, seven states have not adopted the National Hospital Safety Construction Standards; these standard also need to be in force for military hospitals, federal facility hospitals, tribal hospitals, basically every hospital in the USA. Why should anyone else die in a hospital bathroom because they could not access emergency care? When I began the advocacy activities, pull cords cost $125; as of early 2022, the cost is $10 because the emergency call devices are wireless and can be pasted on a bathroom wall. Senators Murray and Cantwell as well as my Congressional Rep, Emily Randall, have been so kind and supportive of me. I will be elated when the standards are adopted as a matter of federal law. I know that I can do this, when I was a child, my mother would read to me the book "the little engine that could." With the continued comfort, support and love of my cancer community, anything is possible.

Sending love to you, Annie, Mitch and all my fellow leiomyosarcoma survivors. We know what loss is and we know the preciousness of life.