Marian Birdow, 10-Year Thriver
When she was diagnosed with retroperitoneal LMS in December 2012, Marian Birdow-Wertheimer was devastated. She was just 59, and she feared that life as she knew it would soon be over--even if she survived, she thought, she would be too sick to travel and do the other things she loved most. But news from an unexpected source gave her hope. One of Marian’s friends was visiting Myanmar, and when she learned about Marian’s diagnosis, she said, “One of the people I’m traveling with right now is a woman who had LMS 20 years ago!” Hearing that another person with LMS had survived so long and was now enjoying such an adventure changed Marian’s perspective about what might be possible in her own future.
Still, Marian was pragmatic and wanted to be prepared for whatever LMS might throw at her. She decided that her tri-level house would be too challenging to get around in if her condition worsened, so she moved to a one-story condo. Some of her friends thought she was crazy to be moving to what they thought of as “housing for old people,” but Marian felt that being proactive was an important step, and she has never regretted the move.
Marian’s first surgery removed her uterus, ovaries, and part of her intestines, since her retroperitoneal tumor was wrapped around all of them. Her doctors initially assumed that she had ovarian cancer, but pathology revealed that it was LMS.
For the next 4 years, Marian was NED. In 2017, she had two recurrences. She had one surgery that removed an additional portion of her intestines, then a second one to remove a tumor that was wrapped around her ureter. These were lengthy, difficult procedures, and it was very hard for Marian to go into the hospital feeling strong and healthy, then emerge in a wheelchair after surgery.
It was also upsetting to read one of her medical reports a year later and learn that the surgeon had taken out her appendix and never even mentioned it! When she asked why it was removed, the surgeon said, “Well, it’s an organ you don’t really use; it’s not important.” Marian felt strongly that she should have been told exactly what happened during the surgery, and she encourages other LMS patients to read all the reports from their procedures and ask about anything that seems incomplete or unclear.
The first two of Marian’s surgeries had taken place at her local community hospital in Boulder, Colorado. She decided that she wanted to get a second opinion from a sarcoma specialist. She went to see one in Amsterdam (she is originally from the Netherlands). The doctor there told her that she needed to start meeting with a sarcoma specialist regularly because it would increase her chances of survival. So Marian began working with Dr. Victor Villalobos at the University of Colorado’s Anschutz Cancer Center. She was delighted when, during her first meeting with him, he said, “Looking at your history and at you, I think you still have many years ahead of you.” While Marian knew that no one could guarantee that her LMS would not return, it was very encouraging to hear an expert say that the odds might be in her favor.
Marian was in Florida in 2019 when a scan showed that she had a possible recurrence. She was told that she would need another surgery. This news was extremely frustrating for Marian, and when she arrived home in Colorado three months later, she requested another scan to confirm that she really was going to have to go through this ordeal. Unfortunately, the same spot was still visible, and she and her doctors went ahead with the surgery. The spot turned out not to be cancer; it was scar tissue that had formed after her previous surgeries. Marian had a lot of conflicting feelings--she was grateful that her doctors were so diligent and determined to respond quickly to any signs of trouble, but she was also angry that the surgery had turned out not to be necessary. For Marian, knowing that scans can be inconclusive and that even the best doctors can sometimes be wrong is one of the hardest aspects of having LMS.
Marian now receives scans every 6 months. She has been part of the LMSDR Facebook group since just after her first surgery and has found it very helpful to make contact with others, ask questions, and read people’s stories, especially since she has never encountered another LMS patient in a face-to-face cancer support group.
Marian has also learned that reaching out to her community when she needs something is helpful both for her and for them, since people really are eager to help out and are so happy to be given an opportunity to do so. Marian’s husband always says, “WE have cancer,” which makes her feel less alone and also helps her to understand the stress and anxiety her loved ones feel. Her husband is always accompanied by someone else during her surgeries, since it is extremely stressful for him to be alone.
Marian advises others with LMS to seek counseling and learn meditation or other strategies for managing emotions so as not get caught up in panic, anxiety, and depression. A counselor who has experience working with cancer survivors can be especially helpful. We cannot control our outcomes, but we can learn to control how we live in the present moment. And we can practice living our lives as fully as possible in between scans.
Marian was pleased when she realized that she no longer has a “bucket list”: she has worked, traveled, formed wonderful relationships, and lived joyously and fully. Reflecting on all that she has done and learned, she knows that she is as ready as she can be for whatever comes next!
