Darcey Johnson, 21-year LMS Thriver
By Darcey Johnson 2/15/21
Location: Virginia/North Carolina
Date of diagnosis: 11/2000
Site of primary tumor: retroperitoneal
I was 32 years old and the mother of two young boys when I was diagnosed with retroperitoneal leiomyosarcoma in November of 2000. My tumor, which was located between my intestines and my ovary, was surgically removed with clear margins; it was 6.5 cm, grade IIb, and moderately differentiated. I did not receive any other treatment. My LMS has not returned in these last 20 years, though I was treated for breast cancer in 2013.
As horrible as LMS is, cancer has allowed me to see the last twenty years with a lens of gratitude I don’t think I would have had it not been for my diagnosis.
I did not cope well in the beginning. I was fortunate to find the ACOR (Association of Cancer Online Resources) website, as this was before social media. Dr. Kossove and Alison Woodman from the old ACOR LMS email listserv were very generous with their time and talents, giving me life-saving information and helping me navigate my new normal. Back then, what helped me most was getting a good therapist, talking to friends (especially my church and mothers’ groups), and taking time for myself.
At first, I struggled to regain the joy I had previously felt when spending time with my sons. When they were happy, I would be sad, believing I would have to leave them one day. When they were sad, I would imagine them having to navigate life without me. It was very tough, and all these years later, I still remember the sadness of believing I would miss them growing up.
Eventually I got angry and decided I was not going to let stress rob me of enjoying the greatest blessings in my life. I wanted my sons to remember a mother who was fully present, and after I made that decision, things got so much better. With every passing scan, I felt lighter and more like myself.
The year my oldest started kindergarten was when I was diagnosed with leiomyosarcoma; two weeks before he graduated high school, I was diagnosed with breast cancer. A test revealed I had Li-Fraumeni Syndrome, a genetic mutation that increases the risk of getting several kinds of cancer.
I had learned during my LMS experience that worry did not buy me one day, so even though my surgeon warned me that breast cancer would require chemotherapy and radiation and be a real pain in the ass, somehow I knew that this, too, would be OK. My mastectomy revealed that things were not as bad as my doctors had originally anticipated, and as with my LMS, no chemo or radiation was necessary. I am now a patient at the NIH and participating in a clinical trial for yearly imaging. So far, my MRIs have been pretty unremarkable, and I have never been so happy to be boring.
Through my LMS journey, I’ve learned to take physical health seriously but to make mental health just as much of a priority. If I could go back and change anything, I would have eaten healthier and exercised more; I had no idea I’d still be using this body in my 50’s. I’m glad that I stayed at home with my kids, traveled when I could, and pushed myself outside of my comfort zone by doing a Spartan Race and getting scuba certified.
One piece of advice I have for newly-diagnosed LMS patients is that if you have a bad feeling about your doctor, you should let them go. My original surgeon did not offer quarterly scans. Even though I did not have a recurrence, that was very negligent on his part. I love the NIH; I feel they scrutinize my health decisions more than I do!
Connecting with strangers on social media can be so helpful. It seems weird, but sometimes it’s easier to reach out to someone you don’t know who is sharing this unique journey than it is to reach out to family and friends. Don’t compare your own journey to the journeys of others; have grace for yourself. There were days when I stayed in bed until lunchtime.
In my Li-Fraumeni support group, we refer to the constant work and challenges of dealing with cancer as “cancering”--it’s an active state that you’re in whether you are having treatments and surgeries, or just getting your yearly MRIs and testing. I would love to think I am done fighting cancer, but I feel like I’m making more of a pit stop. I’m getting refueled, working on myself and preparing for what might be ahead on the next lap. It’s just a part of my life I have to get through to be there for all the good stuff. If you are also “cancering,” I encourage you to find happiness wherever you can, and do whatever you can to feel the goodness that the world can offer!