How lymphedema, recurrent cellulitis, and military-family life reshaped what living beyond breast cancer meant to me
When I was diagnosed with breast cancer, I was told a beautiful story. I would have a few rounds of chemotherapy and then surgery. In the end, I’d be put back together and have no nasty cancer. I’d have a perky chest and a snatched waist to boot. If, in a rare instance, I needed radiation and more chemotherapy, it would be only a few additional weeks. My journey with cancer might include some rough waves, but it would all end within a few months, and life would return to normal.
It was 2020. At the time, my husband, a Navy sailor, had been deployed that entire year. I was living through COVID-19 with three young children, and I was trying to create any feeling of home and “normal” that I could. As a former teacher, I loved decorating for the holidays. After hanging Halloween porch lights to make life feel festive for the kids, I felt a sharp pain along the side of my chest. Breast cancer was not on my radar. I did not have a family history, and in my late 30s, I thought the pain was from a cyst, which I’d had before, or something else that would go away.
It wasn’t a cyst.
I was diagnosed with stage IIIC triple-negative breast cancer on December 28, 2020. At the beginning of the journey, I really wanted to believe what my care team explained about the treatment plan and what other breast cancer survivors shared: that it would be one long, painful year. I am an optimist who dreams of easy, but I am also a realist and a planner. Give me a problem and a checklist, and I will get to work. Chemo, surgery, radiation — and then life would be the same. I told myself, “Okay, I can do one painful year. Cheers! Let’s get started.”
I had chemotherapy from January through June 2021. In July, I had a double mastectomy and chose to go flat. On the side with cancer, they had to remove extra skin and more than 25 lymph nodes because the cancer had spread through them. The surgery changed the lymphatic pathways on that side of my body. I knew lymphedema — a chronic swelling in the arm, hand, breast, or chest — was a possibility, but I thought it would mean wearing a sleeve when I flew or when my arm hurt. I did not understand how much it could shape every part of my life.
Unfortunately, life has never been the same. Every time I reached one of the goalposts of the adventure called cancer, the goal line would suddenly move. It was like standing in the ocean and being hit by waves over and over again. I would find my footing in the sand, let a wave come, brace as it hit, and then lose my footing as it swept me under. I would come up for air, sputtering water, then find my footing again and brace for the next wave. After surgery, I was supposed to begin radiation, but I could not lift my arm into the position the machine required. A wave hit. Everything was too tight. I could not get dressed normally, put clothes away, carry a backpack, or do anything that required reaching up. I needed weeks of physical therapy before I could even start radiation.
Then my port became infected, and what was supposed to be a simple office removal became another traumatic procedure and another delay. Wave after wave. Radiation was supposed to be 25 treatments, but it became 30 because of lymph nodes outside the surgical field. People told me radiation would be the easy part after chemotherapy, but my skin burned so badly that it painfully peeled away. When we thought I was almost finished, I learned that I needed another six months of immunotherapy and oral chemotherapy: pembrolizumab (Keytruda) and capecitabine (Xeloda). Wave after wave after wave. Finally, I finished active treatment in July 2022, nearly two years after diagnosis.
Every time I thought the water might be calming, another wave came.
I call myself a medical unicorn. If something strange is going to happen, it seems to happen to me. That rare side effect? Of course I’m going to get that. I confidently proclaim, “We all have our own version of hard,” and my hard isn’t anyone else’s hard. Wave after wave. I tell myself, “That was hard, but I did it. I can handle what comes next.” The problem is that my footing is never exactly where it was before. The sand has shifted, and I have changed with it.
Although my cancer seems to be under control, I still deal with side effects from treatment every single day. Because of the surgery, I developed lymphedema, a long-term condition that causes fluid to build up in body tissues, often in the arms or legs. It happens when part of the lymphatic system is damaged or blocked. Because lymphedema impairs lymphatic drainage, it can increase the risk of cellulitis — a deep, painful bacterial skin infection.
My first cellulitis infection happened around Thanksgiving 2021, in the middle of one of our military moves. I had finished radiation and received what I thought would be my last dose of immunotherapy when we left Virginia Beach for Washington, D.C. Everything we owned was in storage. Unfortunately, delays kept us from moving into our new house in D.C., and we were temporarily staying at my mother’s house in Pennsylvania. I woke up with my left arm swollen, bright red, painful, and hot. The redness spread across my chest, and I ended up in the hospital. Wave after wave. They kept coming.
I’ve now had cellulitis nine times over the past 5 years, including three infections in 2026. I was hospitalized eight of those nine times. One led to a group B strep bloodstream infection, and another included a blood clot. Each hospitalization means more tests, more blood work, and at least 3 days away from my children. This year, the Navy had to fly my husband home from his deployment through the Red Cross while I was hospitalized for one of my infections. He has since returned to his deployment.
The work of preventing another infection does not end when I leave the hospital. I take antibiotics twice a day and have been told I will need them for the rest of my life, although I still hope that somehow I will be able to stop. I wear compression garments and spend 80 to 90 minutes every day strapped into a pneumatic compression pump. For that hour and a half, I cannot make dinner, drive a child somewhere, fold laundry, or take care of anyone else. That time is part of the daily cost of living beyond breast cancer. Treatment ended, but cancer did not.
I have also had to learn what my body can tolerate. I noticed that some infections followed kettlebell workouts and push-ups. I know that is correlation, not causation, but those experiences told me those activities were not working for me. I still walk, ride a bike, and play and coach kickball. I find the movement that works for my body where I live.
This medical unicorn even had cutting-edge surgery to help combat lymphedema and cellulitis: a vascularized omentum lymphatic transplant (VOLT). It involved a lengthy operation in which surgeons moved lymphatic tissue from the omentum in my abdomen to my arm and armpit. There were no guarantees, and despite the radical surgery, I continued to get cellulitis. But my most recent infection, in May, was the first time the hospital did not admit me. They increased my medicine, my blood cultures did not grow anything, and I went home. That felt huge. Maybe the surgery is beginning to help. I do not know yet, but I will take the maybe. It felt like finding more secure footing.
My relationship with my body is complicated. I never know if I can trust it. It does not work the way it once did, but with modern medicine, I am still here. My oncologist calls this an “alive problem.” I will take an alive problem.
I knew lymphedema — a chronic swelling in the arm, hand, breast, or chest — was a possibility, but I thought it would mean wearing a sleeve when I flew or when my arm hurt. I did not understand how much it could shape every part of my life.
Military life adds another current to the water. Since my diagnosis, we have lived in Virginia Beach, Washington, D.C., and now on Whidbey Island in Washington state. This is our third home since cancer entered our lives, even though the Navy had a categorization system meant to stabilize certain families. Every move means finding care and support all over again, and specialized care can now be hours away.
During chemotherapy, the Navy provided a babysitter through a caregiver program because my boys have autism. The program was meant to give us a break or a date night. Instead, I used it so I could go to chemotherapy. It was a blessing when I needed it, but the qualifications have since changed, and our family no longer qualifies for the program. A program can exist and still leave a gap between the help a family is supposed to receive and what that family actually needs. It has made me a stronger advocate for families like mine.
I am a caregiver to my boys — and a caregiver who needs caregiving. That is the bridge between my cancer experience and my advocacy for military families. I know what it is like to manage treatment, hospitalizations, military moves, deployments, and three children’s daily lives at the same time. I could not change my own situation, but I could tell the people who can make changes what was happening to families like mine.
I have helped teach military families how to find support in their communities. I spoke at a 2024 congressional quality-of-life roundtable on behalf of Exceptional Family Member Program ( EFMP) families and adults. I also spoke at a 2024 Congressional Military Family Caucus event in Spokane, Washington, about the gaps between programs working on paper and programs working in real life. I was honored as the 2026 Armed Forces Insurance Navy Spouse of the Year for that advocacy. It is not only about me. It is about making sure lived experience reaches the people who can fill those gaps.
Despite all this, there has been so much good. Cancer brought me a community. It taught me about friendship and how to show up for others. It sharpened my advocacy for myself and for the people around me. Neighbors helped care for my children. Other cancer survivors helped me carry what I could not carry. My kickball community would help our family in a heartbeat. My children are growing, thriving, and learning how to navigate hard waters of their own.
I cannot stop the storms from coming for my children, for other military families, or for other people living beyond breast cancer. I do not know what their version of hard will look like. But I can give them an oar. I can show them what worked for me. I can be the person in the water who says, “Put your feet down; it may not be as deep as it feels.” And when someone needs a louder voice, I can help make sure they have a seat at the table.
We all have our own version of hard. We do not have to pretend it is easy, and we do not have to go through it alone. We can acknowledge the waves, help each other find our footing, and do our part in big and small ways to make the people around us feel seen, heard, valued, and, most importantly, loved.
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The views and opinions of our bloggers represent the views and opinions of the bloggers alone and not those of Living Beyond Breast Cancer. Also understand that Living Beyond Breast Cancer does not medically review any information or content contained on, or distributed through, its blog and therefore does not endorse the accuracy or reliability of any such information or content. Through our blog, we merely seek to give individuals creative freedom to tell their stories. It is not a substitute for professional counseling or medical advice.
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Living Beyond Breast Cancer is a national nonprofit organization that seeks to create a world that understands there is more than one way to have breast cancer. To fulfill its mission of providing trusted information and a community of support to those impacted by the disease, Living Beyond Breast Cancer offers on-demand emotional, practical, and evidence-based content. For over 30 years, the organization has remained committed to creating a culture of acceptance — where sharing the diversity of the lived experience of breast cancer fosters self-advocacy and hope. For more information, learn more about our programs and services.