From Dr. Ken Waxman (Stephanie's Dad)
Nodules Beneath the Surface
May 31, 2013
Shirley and I sit and wait outside the endoscopy clinic at the Mount Zion Hospital, while Stephanie has another procedure. Stephanie has been suffering severe stomach pains and nausea. Her doctors have attributed her symptoms to graft versus host disease (her new bone marrow cells attacking her stomach). But Stephanie's pain and nausea persist despite immunosuppressive and steroid medications. At endoscopy last week her stomach had only mild inflammation, and the biopsy result showed only mild graft versus host disease. This is good, but the gastroenterologist also discovered three small nodules beneath Stephanie's stomach mucosa (lining). No one knows what these nodules represent, so now as we sit in the waiting room, Stephanie is undergoing another endoscopy, this time with endoscopic ultrasound in order to do deeper biopsies. We will hopefully find out soon what pathology lurks beneath the surface.
Otherwise, Stephanie is doing amazingly well. Most importantly, all of her tests for leukemia keep coming back negative. Another positive is that she is tolerating her long-term anti-cancer medication well. So Stephanie continues in remission, and Shirley and I continue to be in awe of Stephanie's resilience and optimism.
Stephanie plans to return to her job in August, well ahead of schedule. We are so thankful that Stephanie's managers and coworkers have been unbelievably kind, generous and supportive. They are currently raising money for LLS and running in the San Francisco Marathon in June. They have even kept Stephanie’s desk, computer and work files intact, exactly as she left them nearly a year ago!
Stephanie keeps very busy making beaded jewelry. She searches for interesting beads that speak to her, and then she fashions these into very cool bracelets and necklaces. Stephanie calls her jewelry "Three Bead Mantra". She now has a web site www.threebeadmantra.com and an Etsy site: www.etsy.com/shop/ThreeBeadMantra.
Stephanie and Shirley are also very busy planning for the San Francisco Nike Women's Marathon this fall. Even though right now she is hardly able to exercise because of neuropathy in her feet from her chemotherapy, Stephanie has set a goal. She plans to run/walk the San Francisco Nike Half-Marathon this October, one year from her stem cell transplant. Shirley and many of our friends and family will be joining her. They have formed "Team Stephanie" and will train with LLS Team in Training around the country. There are already over 30 members. Team Stephanie has also set another goal, to raise $100,000 to fund a brand new LLS research grant in Stephanie’s name. Thank you to everyone who has already signed up and to the Santa Barbara Team in Training for organizing and leading the team.
If any of you would like to join Stephanie and train for a half or full marathon, we would love to have you. You will receive lots of coaching and support to help you succeed. For more information, please contact us or check out the webpage: http://pages.teamintraining.org/los/nikesf13/TeamStephanie.
As always, Stephanie inspires us with her energy, her confidence, and her wisdom. She knows and we know that she has leukemia. She knows and we know that there are nodules beneath her stomach lining. She knows as do we that her future will always be uncertain. But Stephanie chooses to make each day, each step, each breath as meaningful as she can. Watching Stephanie transcend leukemia reminds Shirley and me of a simple truth: All of us must face our own illnesses and our own mortality, if not today, then tomorrow. So we are now trying to follow Stephanie's example, and seek more beauty and fulfillment in our lives. Each moment is too precious to waste.