Coping with cervical cancer was tough enough.
Then, nearly 10 years after Angela Marquez finished her cancer treatments and was enjoying life, her left leg inexplicably began swelling and aching.
She learned she had a chronic, incurable disease called lymphedema.
“I survived cancer. I beat cancer. And now this,” Angela said.
Lymphedema after cancer
Her lymphedema is a direct result of the surgeries and radiation treatment she needed for cancer. Doctors had to remove lymph nodes to test for cancer cells and, years later, her body’s lymphatic or drainage system stopped working properly.
At first, Angela cried a lot.
“It hits you hard because it’s a reminder of the cancer,” she said.
Then, after grieving for a little while, the petite 57-year-old rose up, got mad and went public about a disease that is relatively common, but often hidden.
“I did a ton of research, which led me to get fired up. I said, ‘You know what. This is not going to define me. This is not going to keep me from living my life and I want to be an advocate for people who don’t have a voice.’
“Many people who have this disease don’t even tell family members or friends because it can feel disfiguring,” Angela said.
Still, about 10 million people in the U.S. suffer from lymphedema. That’s more than those who have Multiple Sclerosis, Muscular Dystrophy, ALS, Parkinson’s and AIDS combined. But most people have never heard of lymphedema.
Angela said both the disease and the limb that lymphedema affects can feel extremely heavy and swell. It is often misdiagnosed as fat or water weight.
That’s why Angela started sharing a lighter, more positive view of her disease on Instagram through her popular account: @funky_lymphedema.
She shows off photos of her legs, on both good days and bad. She volunteers as the Colorado co-chair for the international non-profit, the Lymphatic Education and Research Network. The organization – and leaders like Angela – fight lymphatic diseases and lymphedema through education, research and advocacy.
Angela is 5’5,” but her strength is larger than life: both physically and mentally. She can lift up to 205 pounds on hip thrusts. And she proudly flexes her bicep muscles, which she jokingly calls her “Spanish Peanuts.”
Inspiration from immigrant parents
Angela draws her strength from her parents.
Her dad, Alejandro, came to the U.S. from Mexico decades ago and worked tough, blue-collar jobs all his life for the railroad in Kansas. There, he had met his wife, Eva, who was born in Kansas, but also had family in Mexico.
Together, they raised four children and taught them to work hard and never give up. Her dad was always a tower of strength.
“Even when he had colon cancer in his 80s, he would say, ‘I’m going to beat this,’” Angela said, beaming as she thought of her dad.
He rebounded from colon cancer, then got stomach cancer, and was doing well. At 90, he seemed liked he’d live forever. On the day he died, he was supposed to be leaving hospice. All of his family had gathered to bring him home.
Then unexpectedly, he spoke his last word and took his last breath. Just before peacefully passing away in 2012, Alejandro said his daughter’s name: “Angela.” He pronounced it, as he always did, with a hushed “h” sound in the middle: “An-hela.”
In that moment, Angela was her father’s angel. Now, she’s certain, as she copes with her health challenges, that her dad is her angel, watching over her and giving her boosts when she needs them.
“He was this innately strong guy,” Angela said. “He would have been proud of how I’ve handled all of this and how I’ve taken on the challenge of being a voice and an advocate to help others.”
‘Your mind is a powerful tool’
Angela was diagnosed with cervical cancer back in 2006. She was living in Missouri at the time and had to have a radical hysterectomy in early 2007, along with chemotherapy and radiation. Since there was danger of the cancer spreading, her surgeons also removed 36 lymph nodes for dissection. Little did she know years ago that patients who must have lymph nodes removed during surgeries for female cancers can later be at greater risk for getting lymphedema.
Angela’s cancer treatments were challenging. She had to do six weeks of chemo, then 35 rounds of external and internal radiation as an outpatient. Every weekday, she had to drive 45 minutes from her home to Springfield, where she was getting her care.
Despite the hardships, Angela learned that she was resilient.
“Your mind is a powerful tool,” she said.
She simply chose to focus on the positive.
“I didn’t ever sit there and say, ‘Why me?’ I knew, ‘I’m going to survive. I’m going to fight this.”
Angela is competitive by nature. And she simply viewed her cancer as a foe she planned to trounce.
She’s been a top sales representative for General Mills for 17 years and supports popular household brands like Cheerios, Yoplait and Betty Crocker.
Her husband, Aaron Koenigseker, served in the military, so the couple moved together quite a bit.
Later in 2007, following Angela’s cancer treatments, Angela and Aaron moved to Colorado. She received follow-up cancer care from her UCHealth team and was thrilled when she made it to 5 years without a recurrence. She celebrated being cancer free in 2012, and assumed she could put health problems firmly in her past.
Then, her ankle mysteriously started swelling in 2016.
Lymphedema can be subtle at first and difficult to diagnose. Angela’s primary care provider first wondered if she had a blood clot. He referred her to an interventional radiologist who found that Angela did not have a clot. But, she did have a rare condition called May-Thurner syndrome, which occurs when the right iliac artery compresses the left iliac vein, obstructing blood from draining the lower part of the body. This would require a stent placement.
Unfortunately, however, the swelling in Angela’s ankle persisted and the fact that she had dealt with cervical cancer 10 years earlier proved to be an important clue that something else might be going on. The loss of lymph nodes and the radiation she had received years earlier like were causing her lymphedema.
While there is no cure, Angela started receiving therapy that greatly helps reduces the swelling.
Intensive treatments – remarkable results
Vicki Ralph is a UCHealth occupational therapist with a specialty in lymphedema therapy. She sees patients at UCHealth University of Colorado Hospital on the Anschutz Medical Campus in Aurora. Ralph also teaches providers around the U.S and in Malaysia how to treat and support lymphedema patients.
When Angela started seeing Ralph in 2017, her left leg was about 36% larger than her right leg.
Ralph does intensive massages and wraps her patients’ limbs to help reduce the swelling. The procedure is known as complete decongestive therapy or CDT.
“It’s intensive. Patients come in four to five times a week and I do a massage technique called manual lymph drainage. We push the fluid away from the swollen limb. Angela has swelling in the left leg. All the fluid has to go up.
“First you work the shoulders, then the belly, then the upper leg, then the middle thigh, and lastly the foot,” Ralph said.
Angela also wears compression garments around the clock to further reduce her swelling. After intensive treatments and additional work at home, Angela’s leg shrunk to 12% larger than her right leg.
“That’s a very significant improvement,” Ralph said.
Initially, Angela came in for treatments three times a week. Later, she was able to decrease those visits to one a month.
Angela is incredibly dedicated to taking care of herself.
“I don’t ever want my leg to go back to the size it was,” she said.
In addition to physical relief, Angela said Ralph gave her confidence and hope that she could take control of her lymphedema and keep her symptoms in check.
Angela’s dedication to caring for herself and doing intense weight lifting sessions and other workouts every day have made her a model patient, Ralph said.
“She’s truly remarkable. I’ve never had a patient grasp and embrace this treatment like Angela has. She followed it to a T. She didn’t fight or reject it and every day, we would see improvement. We would take the bandages off and her leg was smaller each day,” Ralph said.
A little-known disease
Considering how many people cope with lymphedema, Ralph said few people know about it, including medical providers.
“On average, in medical school, students spend about 15 minutes on the lymphatic system. I teach a lymphedema course and ours is 135 hours long,” she said.
Ralph said a small percentage of people are born with problems in their lymphatic systems. But most, like Angela, get lymphedema after cancer, which makes it a doubly tough burden.
“Whether it’s breast or ovarian or uterine or bladder cancer, most of my patients say, ‘The cancer is gone. And now I’m stuck with this disfigurement.’ It’s disappointing and many feel uncomfortable wearing compression garments,” Ralph said.
She says most suffer far too long without getting help. Her advice?
“Get treatment fast and get in early. If you notice that you have abnormal swelling and one limb is different than the other, get in. The sooner you get the treatment, the better it will work,” Ralph said.
“I’ve had patients who have had lymphedema for 20 years without any treatment. The leg will just keep getting bigger and bigger. There’s a huge psychosocial impact. You feel that people are looking at you. You can’t wear normal, pretty shoos because one foot is bigger than the other. You don’t feel comfortable on the beach. It really has quite an impact,” Ralph said.
Unfortunately, Ralph said there’s no cure in sight.
But doctors and researchers are working on new treatments. Two years ago, Angela opted to undergo a procedure at Memorial Sloan Kettering Cancer Center in New York. Known as a vascular lymph node transfer, the surgery is gaining interest and consistently being fine-tuned.
Angela’s doctor took healthy lymph nodes from a little-known organ surrounding the liver called the omentum. He then connected the healthy lymph nodes to blood vessels in Angela’s left calf and upper thigh.
While the surgery is not a cure, it can help with the treatment and management of lymphedema. Angela has less tingling and heaviness in her leg. She also regularly uses a compression pump that fits around her leg like a sleeve to move fluids out of her leg. After the lymph node transfer surgery, Angela found that she only needs the pump three or four times a week instead of every day. And, she can go a couple of hours without wearing her compression garments.
“Most importantly, I feel good and continue to do all the things I love. That’s a win,” Angela said.
She also participated in a clinical trial that compared patients who have opted for the lymph node transfer surgery to those who have not.
Ralph said Angela’s ability to stay positive and provide hope for lymphedema patients around Colorado, the U.S. and the world sets her apart.
“She reaches out to people around the globe and has a great impact. She has grit and she brings a sense of humor. Even in the worst of times, when she’s had terrible infections, she posts cartoons of fire on her legs. You have to have humor,” said Ralph.
‘I want a cure’
Along with spending time with her husband and friends, Angela loves her workout family. She trains with her friend, Carla Sanchez, at Carla’s Lone Tree gym, Performance Ready Fitness Studio.
Angela does strength-training classes several times a week and also works with Carla one on one.
“She trains me just as hard as any of the other clients,” Angela said.
Adds Carla: “She’s the strongest, most powerful woman.”
Angela always has loved working out. She thinks her dedication to physical activity is more important now than ever.
“I want to inspire people not to let lymphedema limit them. I’m mindful of my leg, but I don’t let it keep me from doing the things I love.”
On the wall of the studio, a message inspires all the clients: “Mirror, mirror on the wall, I’ll always get up after I fall. And whether I run, walk or have to crawl, I’ll set my goals and achieve them all.”
Along with enjoying life, working hard and staying fit, Angela has a crystal-clear goal related to lymphedema: “I want a cure.”
She also wants to dramatically boost awareness about possible side effects from cancer treatments.
Angela speaks as often as possible to motivate others. She was the patient speaker at the 2019 Lymphedema Awareness Days event in Colorado and her advocacy work also recently earned her the General Mills “Acts of Good” award.
”I have always been impressed by Angela,” said Shannon Taylor, retail sales manager for General Mills. “Not only is she a great employee. (We are lucky to have her work for us and not a competitor.) She also understands the value of giving back and being a leader to champion her cause.”
Angela feels lucky that she was diagnosed and treated relatively quickly. She wants to be sure that medical providers and others at risk of lymphedema are much better educated about the disease so they can be proactive and get help fast.
“Patients need to be aware that this is a potential risk from cancer surgery,” Angela said. “We need research and we need advocacy. And that’s why I’ll continue speaking out. If my story can help one person, then I’ve made a difference.”