Long Term Thriver, Debbie Steinberg
Surviving a Speed Bump
When Debbie Steinberg set out on the road to her doctor’s office in 2013, she had no idea how fast her life would soon be moving, or how large a speed bump she was about to encounter. Debbie had been experiencing some heavy bleeding. An ultrasound revealed a large mass in her uterus, and Debbie was told that whether it was a fibroid or a tumor, she needed to have it removed right away. A hysterectomy that would use morcellation was scheduled for the very next day. Debbie was 47 and had 3 daughters, so she felt all right about not being able to have more children, but the pace at which everything was happening was overwhelming.
On a Friday evening at 6:00, Debbie got the news that the mass had been a leiomyosarcoma. After enduring an anxiety-filled weekend, she was able to talk with her doctor about options. They decided to go ahead and remove her ovaries and her fallopian tubes, to which her orange-sized, stage IIIb tumor had metastasized. That surgery took place about a month after the first one, and it plunged her directly into menopause--and since her tumor had been estrogen positive, she could not take any hormones to manage the symptoms.
During this difficult time, Debbie’s family took great care of her, and her devoted, lifelong friends didn’t wait around to be invited to help. They took her kids to soccer matches and gymnastics meets, arranged meals, and appeared in her laundry room, announcing “OK, here we go--I’m doing the laundry now!”
Debbie’s first two surgeries eventually led to a third and a fourth--not for cancer, but to deal with complications. About six months after her hysterectomy, Debbie’s bladder had fallen and had to be surgically lifted up--but that surgery made her bladder too small, so another surgery was needed 3 years later to expand it. Since that time, Debbie has remained NED.
While she was a patient at the Brigham Women’s Hospital, Debbie had access to a variety of helpful auxiliary services, including support groups, massage, help from psychologists and social workers, and classes in mindfulness meditation and yoga. Debbie took full advantage of these; she also took medication to help with all of the “mind games” and stress that come with cancer, which she thinks may actually be harder to deal with than the physical challenges of treatment.
Giving support services a try can be hard at first, but Debbie found that it gets easier the more you do it. And it’s necessary to develop coping strategies and skills, because with LMS, you are in it for the long haul. “Scanxiety” is real and a constant reminder of cancer, even once you have moved on to having your scans every six months or once a year. Debbie once had a panic attack before a scan and had to have her husband come to take her home.
But now Debbie knows the drill and has developed multiple strategies for managing her appointments. She is allergic to CT contrast dye, so she has to pre-medicate for that. She brings earpods to her scans and listens to music or reads to distract herself while drinking the contrast beverage and getting ready; this helps reduce the anxiety that comes from waiting and from being in a setting where everyone around you is sick and stressed. Debbie has often noticed other patients bringing their hobbies, like knitting, quilting, and needlepoint, along to the waiting room.
Mindfulness meditation in particular has been helpful for Debbie. She was actually able to meet the teacher, Jon Kabat-Zinn, who founded the mindfulness-based stress reduction (MBSR) courses that are now offered at many cancer centers around the country. She uses the “10% Happier” meditation app and other guided meditation programs, and her children recently gave her some mindfulness books as a holiday present.
Another thing that has helped Debbie and her loving network of family and friends is finding ways to give back. Debbie’s family (including her three kids, now aged 19, 24, and 26) has always been involved in their community, but helping other cancer patients has been especially meaningful. Delivering stuffed animal pillows to hospitalized kids on Christmas Eve was a recent highlight, and volunteering at the Jimmy Fund is a regular occurrence. Debbie and her family participate in all of the Jimmy Fund walks and volunteer to check people in at events, coordinate speaker programs, and hand out t-shirts.
One of the most distinctive kinds of volunteering Debbie does is giving hand massages to patients who are receiving chemo or radiation. Debbie works as a computer consultant, not a massage therapist--but during her time receiving massages at the Zakim Center for Integrative Therapies and Healthy Living at Dana Farber, she became friendly with a massage therapists who said, “You know, you would be really good at this.” Debbie decided to give it a try. She and two other people received two weeks of training in how to safely perform hand massages for others. This has been an incredibly fulfilling form of volunteering for Debbie, and the patients she works with find it relaxing and healing.
LMS is a journey, not a quick trip, and Debbie knows she will be dealing with it at some level for the rest of her life. But she refuses to let it define her. She thinks of it as just a speed bump on the road of her life. She wasn’t able to frame it that way during the first year or so, of course, when everything was so intense. But with time and practice, she has been able to put it in perspective and keep moving forward, helping the people she meets along the way.